Self-Help Conferences for People Who Stutter: An Interpretive Phenomenological Analysis A Dissertation

Self-Help Conferences for People Who Stutter:
An Interpretive Phenomenological Analysis
A Dissertation
Presented to the
Graduate Faculty of the
University of Louisiana at Lafayette
In Partial Fulfillment of the
Requirements for the Degree
Doctor of Philosophy
Mitchell C. Trichon
Fall 2010
UMI Number: 3446333
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© Mitchell C. Trichon
2010
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DEDICATION
This work is dedicated to my heroes, who have exemplified that great communication can
come in the form of both stuttered speech and fluent speech. May your voices and courage
continue to inspire others to recognize their potential.
EPIGRAPH
I didn't really talk that much about how important support... support was for me, you
know that, that was everything, like if I didn't have that, like I wouldn't have been
able to do it on my own, even with just my speech therapist, like I needed to meet
other people that stuttered. I needed to have everything in order to really-, 'cause I, I,
I don't think I really took off in speech therapy until I met other people who stuttered,
who had done it, who I like, saw myself in, you know? So, I got that out of going to
conferences.
— Lynn
This participant's quote about self-help conferences for people who stutter highlights the
importance of a message spoken nearly 25 years ago:
Self-help and professional treatment can be compatible approaches to a problem, but
danger exists when either group believes that it can do the work of the other.
— C. Evert Koop, U.S. Surgeon General
ACKNOWLEDGMENTS
Thank you to my mentor and dissertation committee chairperson, Dr. John Tetnowski, for his
guidance and encouragement. Your time, effort, and support have been vital in my academic
success throughout my graduate career. Thank you for always believing in me and my
research. I would also like to thank the other members of my committee, Dr. Jack Damico,
Dr. Nancye Roussel, and Dr. Martin Ball for your time, effort, and input on this manuscript.
In addition, thank you to all the faculty and clinical staff who have helped to make my
graduate experience a positive one - academically, clinically, and personally.
Thank you to all of the participants related to this study for your time and courage in sharing
your personal experiences. I find myself thinking back to the many stories you have shared
and feel I have learned a great deal from them. I believe your stories will help others
understand more about the experience of having attended self-help conferences for people
who stutter and about the experience of stuttering.
Thank you to the National Stuttering Association and Friends - The National Association of
Young People Who Stutter for your cooperation in trying to understand the potential role of
self-help conferences in the management of stuttering. In addition, thank you for welcoming
me to the amazing world of self-help. It has allowed me to meet some of the most
inspirational people in my life.
Thank you to the entire self-help community of people who stutter (children, teens, and
adults) who have been an everlasting source of support and inspiration. In addition, I would
like to thank all of the individuals who have been a part of the Queens, NY and Lafayette,
LA chapters of the National Stuttering Association for your friendship and support. You
have been a constant reminder of why this area of stuttering management needs further
exploration.
Thank you to all of those who have shared their time and knowledge with me including
Eugene B. Cooper, John Ahlbach, Annie Bradberry, Lee Caggiano, Elliot Dennis, Judith
Eckardt, Tammy Flores, Jane Fraser, Bob Gathman, Russ Hicks, Mel Hoffman, Pamela
Mertz, Lee Reeves, Peter Reitzes, Ed Riordan, and Greg Snyder.
Thank you to all of my classmates who have been a source of knowledge, strength, and
enjoyment throughout graduate school. Thank you to my classmate, colleague, and friend,
Heather Grossman, for her support, especially when there never seemed to be an end.
Finally, I would like to thank my mother (Evelyn Trichon) and father (William Trichon), my
brothers and sister-in-law (Russell, Jeffrey, and Patrice), my aunt and uncle (Phyllis and
Alexander Cossin), who have been my biggest source of encouragement and love. Thank
you to my nieces and nephews (Hayley, Jordan, Tylar, Dylan, and Jaclyn) who have always
brightened my days through the highs and lows of writing my dissertation. Thank you to all
of you who have given me the strength and courage to pursue my passion.
vn
TABLE OF CONTENTS
ACKNOWLEDGMENTS
vi
LIST OF TABLES
xii
LIST OF FIGURES
xiii
LIST OF ABBREVIATIONS
xiv
Chapter 1: INTRODUCTION
Chapter 2: REVIEW OF THE LITERATURE
2.1 What is Stuttering?
2.1.1 Narrow View
2.1.2 BroadView
2.1.2.1 Sheehan's Iceberg Analogy
2.1.2.2 Wingate's "Standard Definition"
2.1.2.3 Yaruss and Quesal's Framework (based on WHO's ICF)
2.2 Measurements of Stuttering
2.2.1 Tools for Observable Features
2.2.1.1 Frequency Formulae
2.2.1.2 Sherman-Lewis Scale
2.2.1.3 Iowa Scale for Rating Severity of Stuttering
2.2.1.4 Stuttering Severity Instrument
2.2.2 Tools for Intrinsic Features
2.2.2.1 Perceptions of Stuttering Inventory
2.2.2.2 Wright & Ayre Stuttering Self-Rating Profile
2.2.2.3 Overall Assessment of the Speaker's Experience of
Stuttering
2.3 Current Treatment Strategies
2.3.1 Fluency Shaping
2.3.2 Stuttering Modification
2.3.2.1 Overview - Stuttering Modification
2.3.2.2 Stages of Stuttering Modification
2.3.3 Cognitive Restructuring
2.3.3.1 Rational Emotive Behavioral Therapy
2.3.3.2 Personal Construct Theory
2.3.3.3 Constructive-Narrative Approach
2.4 Stuttering Management
2.4.1 Clinicians and Other PWS
2.4.1.1 Deficiencies in Clinical Training
2.4.1.2 Clinicians' Therapeutic Approach Tendencies
2.4.1.3 Relationship Between Professional and Self-Help
Communities
2.4.2 Management vs. Recovery
1
10
10
11
11
12
13
14
21
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23
23
24
26
27
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30
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36
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38
47
48
48
50
56
56
56
59
60
63
2.4.3 Contributions to Success
65
2.5 Self-Help Organizations for PWS
70
2.5.1 Self-Help Terminology
71
2.5.2 Self-Help Movement in the United States
75
2.5.3 Organizations for PWS in the United States
80
2.5.3.1 KingsleyClub
81
2.5.3.2 Stuttering Foundation of America
83
2.5.3.3 Council of Adult Stutterers, National Council on Stuttering ...83
2.5.3.4 Speak Easy International
84
2.5.3.5 National Stuttering Association
85
2.5.3.6 First Amendment, International Foundation for Stutterers
87
2.5.3.7 Friends - The National Association of Young PWS
89
2.5.3.8 Our Time Theatre Company
90
2.5.4 International and Foreign Organizations for PWS
91
2.5.4.1 International Stuttering Association
91
2.5.4.2 International Fluency Association
93
2.5.4.3 Other National Organizations for PWS
94
2.5.5 Self-Help Activities for PWS
95
2.5.5.1 Self-Help for PWS on the Internet
96
2.5.5.1.1 Internet discussion groups
96
2.5.5.1.2 Podcasts and video links
98
2.5.5.1.3 Blogs
99
2.5.5.1.4 Social networking websites
100
2.5.5.2 Self-Help Group Meetings for PWS
100
2.5.5.3 Self-Help Workshops for PWS
101
2.5.5.4 Self-Help Conferences for PWS
103
2.5.6 Research on Self-Help Activities for PWS
105
2.6 Qualitative Research in Stuttering
119
2.6.1 Questionnaires
119
2.6.2 Movement Toward a More Qualitative Orientation
121
2.6.3 Advantages of Qualitative Research
123
2.6.4 Interpretive Phenomenological Analysis
125
2.7 Summary - Review of the Literature
130
2.8 Research Questions
131
Chapter 3: METHODOLOGY
3.1 Rationale for Using Interpretive Phenomenological Analysis
3.2 Data Collection
3.2.1 Advantages of Semi-Structured Interviews
3.2.2 Interview Development
3.2.3 Interview Procedure
3.2.4 Interview Timing
3.3 Participants
3.4 Transcription, Analysis, and Interpretation
3.5 Equipment and Software
3.6 Credibility
IX
132
132
136
136
139
140
142
143
152
155
156
3.7 Summary - Methodology
157
Chapter 4: RESULTS
4.1 Participants' Experiences Having Attended Self-Help Conferences for
PWS
4.1.1 Socializing Opportunities with Other PWS
4.1.1.1 Meeting People/Making Friends
4.1.1.2 Social Gatherings (conference planned/spontaneous)
4.1.1.3 Extreme Socializing
4.1.1.4 Post-Conference Socializing
4.1.2 Affiliation
4.1.2.1 Bonding Experience
4.1.2.2 Desire to Reunite
4.1.2.3 Expansion of Community
4.1.3 Shifting Roles
4.1.4 Positive Change of Emotions
4.1.5 Redefining Oneself
4.1.5.1 Improved Self-Perspective
4.1.5.2 Increased Self-Esteem
4.1.5.3 Self-Acceptance
4.1.5.4 Increased Risk-Taking
4.1.5.5 Self-Realization
4.1.5.6 Feelings of Freedom
4.2 Participants' Experiences of Stuttering
4.2.1 Emotions Associated with Stuttering
4.2.1.1 Embarrassment
4.2.1.2 Fear
4.2.1.3 Frustration
4.2.1.4 Loneliness
4.2.1.5 Shame
4.2.2 Impact of Stuttering
4.2.2.1 Personality
4.2.2.2 Bullying/Teasing
4.2.2.3 Education
4.2.2.4 Dating
4.2.2.5 Career Choice/Advancement
4.2.2.6 Work Performance
4.2.2.7 Other People's Perception
4.2.3 Avoidance of Words and Situations
4.2.4 Post-Conference Perceptions of Stuttering
4.2.5 Post-Conference Disclosure
4.3 Additional Analysis - SLPs Who Stutter
159
Chapter 5: CONCLUSIONS AND DISCUSSION
5.1 Conclusions of the Investigation
5.2 Limitations of the Investigation
226
227
237
x
161
162
163
164
165
166
167
167
169
169
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174
177
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185
187
187
188
189
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191
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204
206
208
213
216
220
5.3 Clinical Implications
238
5.4 Future Research
239
REFERENCES
242
APPENDICES
Appendix A - A l e x ' s Interview
Appendix B-Bill's Interview
Appendix C - Connor's Interview
Appendix D-Dylan's Interview
Appendix E - Evan's Interview
Appendix F - F r e d ' s Interview
Appendix G-Gilda's Interview
Appendix H-Hayley's Interview
Appendix I - Isabelle's Interview
Appendix J-Jackie's Interview
Appendix K - K e n ' s Interview
Appendix L - Lynn's Interview
ABSTRACT
267
see CD
see CD
see CD
see CD
see CD
see CD
see CD
see CD
see CD
see CD
see CD
see CD
268
BIOGRAPHICAL SKETCH
270
XI
LIST OF TABLES
Table 1.
Environmental Factors of Stuttering - Examples
Table 2. Deconstruction and Reconstruction Process - Constructivist-Narrative
Approach (3rd stage)
Table 3.
18
53
Recurring Themes from the Three Temporal Stages of Successful Stuttering
Management
67
Table 4.
Schedule of Topics for Semi-Structured Interviews
139
Table 5.
Participant Information (at time of interview)
145
Table 6. The Role of Self-Help Conferences for PWS in the Transition from
Unsuccessful to Successful Stuttering Management
234
Table 7. The Role of Self-Help Conferences for PWS for Continued Successful Stuttering
Management
236
LIST OF FIGURES
Figure 1. International Classification of Functioning, Disability, and Health - Categories
and Subcategories
15
LIST OF ABBREVIATIONS
ABC
Affective, Behavioral, Cognitive
AIS
American Institute for Stuttering
ASHA
American Speech-Language-Hearing Association
BRS-FD
Board Recognized Specialist in Fluency Disorders
CEU
Continuing Education Unit
COPS
Council on Professional Standards (ASHA'S)
CUSR
Clinical Use of Self-Reports
CWS
Child Who Stutters or Children Who Stutter
ELU
Extended Length of Utterance
GILCU
Gradual Increase in Length and Complexity of Utterance
ICF
International Classification of Functioning, Disability, and Health
ICIDH
International Classification of Impairments, Disability and Handicap
IPA
Interpretative Phenomenological Analysis
KSP
Karolinska Scales of Personality
MCAI
Multicomponent Anxiety Inventory
NSA
National Stuttering Association
NSARC
National Stuttering Association Research Committee
NSP
National Stuttering Project
OASES
Overall Assessment of the Speaker's Experience of Stuttering
PCT
Personal Construct Theory
PFSP
Precision Fluency Shaping Program
PSI
Perceptions of Stuttering Inventory
PWS
Person who stutters or People who stutter
REBT
Rational Emotive Behavioral Therapy
SFA
Stuttering Foundation of America (The Stuttering Foundation)
SLP
Speech-Language Pathologist
SSMP
Successful Stuttering Management Program
WASSP
Wright & Ayre Stuttering Self-rating Profile
WHO
World Health Organization
SSI
Stuttering Severity Instrument
XV
1. INTRODUCTION
Um I felt for the first time that I had a place that I belonged. Um, the first time I was
in a situation that I could actually participate. Be heard and I was a-, I could actually
be heard, that no one interrupted me. No one spoke for me. They weren't afraid to
look at me. It was just a different world. It was like I stepped over the rainbow or to
the rainbow or whatever. (Hayley laughs) For the first time I felt like, 'Hey, I'm not a
bad person.' They like me (both laugh). I like them. I'm having fun. (Hayley
laughs) And I remember not sleeping at all that weekend. The more sleep
deprivation, the more I stuttered, and it didn't matter (both laugh). And it didn't
matter and I made lifelong friends, and I danced, and I laughed, and I cried, and I was
understood, and I belonged. Oh my God!! I was finally in a place where I felt warm.
-Hayley (195-209)
This experience of attending a self-help conference for people who stutter (PWS) was shared
by a woman who stutters. Her eloquent description is unique in the words she used, but the
depth of the impact that the experience had on her is not unique. It is an experience shared
by many of the attendees at a self-help conference. These unique gatherings of PWS from all
walks of life help reconstruct the way that individuals think about stuttering and him or
herself, forming a strong foundation for successful stuttering management. The lived
experience of those who attended self-help conferences for PWS from the perspective of
individuals who stutter is the focus of this investigation.
A self-help conference for PWS is a 2 I/2 to 4-day event that is hosted by a self-help
organization for PWS. Self-help conferences are usually held annually with the site of the
conference usually changing every year. The key elements of a self-help conference include:
an opening and closing, keynote speeches, open microphone sessions in which people have
the opportunity to say anything they want in front of an audience, and regular sessions (also
referred to as workshops) in which a speaker(s) discusses a specific stuttering related
topic(s), planned social events (e.g. baseball game, dinner, and touring), and a banquet.
During the evening, conference participants typically partake in planned social outing or
form or join in on a more spontaneous social gathering whether it is going out or utilizing the
amenities of the hotel. Self-help conferences are just one of the many types of self-help
activities that exist. Other in-person self-help activities for PWS are self-help groups and
self-help workshops. There are also self-help activities on the internet; these include internet
discussion groups, podcasts and video links, blogs, and most recently, social networking
websites.
As a person who stutters (PWS) I am fortunate enough to be in the miniscule percentage of
PWS who learned about the existence of these in-person self-help activities for PWS, which
include self-help conferences. I am even more fortunate to be a part of the even smaller
family of PWS who have had the encouragement and support to have made the decision to
attend one of these very meaningful events.
Before I attended my first self-help conference, my journey as a PWS has taken me through
years of speech therapy which focus on treating the observable features of the disorder,
2
throughout grade school. I, like many other PWS, experienced what is known as "the giant
in chains" complex. This describes one's feeling that one can achieve anything if only he or
she did not have a certain condition, in this case, stuttering. After having successfully
completed a speech program through which I learned to gain control of my stuttering during
my preteen years, I learned over time that my "chains" or what prevented me from realizing
my potentials, was not my lack of fluency. Difficult social situations were still difficult and
being able to control stuttering was not the solution to all challenges. Over time, stuttering
returned and feelings of failure emerged. I continued to work at trying to gain back the
fluency I achieved during my 3-week intensive program or was "chasing the fluency gods" to
feel "successful" once again. I believed fluency to be the only solution to this complex
condition.
My experiences with any type of self-help activity began after having gone through the 3week intensive therapy program previously discussed. I attended a self-help practice group.
"Self-help groups are voluntary, small group structures for mutual aid and the
accomplishment of a special purpose" (Katz & Bender, 1976, p. 9), the 'practice' refers to
the focus of the meeting, which was to practice a particular therapy technique learned in
formal therapy. The group helped me with trying to maintain my fluency. The year I
attended allowed me to meet more PWS who lead successful lives. Years later, while
earning my undergraduate degree in college, I participated in a support/therapy group that
included an element of counseling. The term support group, as opposed to a self-help group,
refers to the professional (SLP) managing the group. In this particular group speech therapy
was weaved into the support. I found talking about stuttering to be helpful but still focused
3
on fluency. During this time, I also found that sharing my experiences of stuttering with
graduate students in a class about stuttering on a weekly basis to be therapeutic and helped
me to discover my passion for educating others on about stuttering.
A few years after college, I attended a self-help group which was different from the two other
groups in which I participated. The focus of the self-group revolved around self-acceptance
with no focus on speech skills. People were stuttering openly without "self-correcting" or
anyone else trying to help them to use speech skills. At the time I thought that the group was
a really good idea, only for people that could not be fluent. I thought I was sitting amongst a
group of people who had given up on fluency and I did not wish to be a part of it. The idea
of accepting something that I thought I could control was not an option for me at that time.
Years later I continued to be a guest speaker on stuttering to speech-language pathology
(SLP) students, while my enthusiasm for helping to educate future clinicians grew. My
hesitation to attempt a career change from a certified public accountant (CPA) to an SLP
ended in the aftermath of the horrific events of September 11, 2001. My experience of that
day and the days that followed helped me to realize that life is short and resulted in the
beginning of my formal academic training as an SLP.
While completing prerequisite courses at Queens College in Flushing, NY, I used my
background of having participated in self-help and support groups to establish a self-help
group affiliated with the National Stuttering Association (NSA). Members helped me gain
different perspectives about stuttering. My positive experiences of the group combined with
4
encouragement from one of my mentors, Phil Schneider, led me to attend the self-help
conference hosted by NSA and Friends - The National Association of Young People Who
Stutter. My experience at these conferences was profound.
I believed going into the conferences that I would learn much on an academic level, but not
to be impacted so much on a personal level since I already knew many PWS. I was correct
about learning on an academic level, but the amount I gained on a personal level is what has
kept me going to conferences every year since my first conferences in 2003. The hundreds
of people that attended the conferences were quite impressive, but even more impressive
were the individuals. They exemplified how one can stutter while being great
communicators; how one can stutter with dignity; how one can stutter well. There were so
many people who stuttered in so many ways, all at different points in their journey, learning
from each other. This experience was quite different from any clinical or nonclinical
experience I have ever had before.
During the NSA conference a group of us went out to enjoy some of the nightlife in
Nashville, TN. I had noticed that stuttering had become a different experience around my
new friends. When I stuttered I had my normal instant feelings of embarrassment, but they
were followed by a sense of relief knowing that I was amongst other PWS who not only
understood how stuttering felt, but who believed that it is okay to stutter. By the end of the
night stuttering felt more like a metaphorical badge of honor. One of the clubs we went to
announced our presence by shouting, "National Stuttering Association is in the house!" as
our group roared with excitement. I already had an understanding of the pride one can
5
possess in being able to endure the challenges of stuttering, but to be able to feel and witness
that pride amongst the group was a powerful experience.
My experiences of attending self-help conferences include being a part of so many other
people's conference experience. I find it intriguing to listen to how people internalize their
conference experience, whether it was their first or twentieth conference. I believed that
people liked being at the conference, but I also believed that attending the conference helped
me with understanding stuttering and my relationship with stuttering. However, I did not
know if the self-help conferences impacted others, and if so how were others impacted?
Upon doing some background research on this topic I found there to be a scarcity of research
in the realm of self-help for PWS and even less about self-help conferences for PWS. One of
the reasons for this lack of evidence is the limitations of the dominant experimental research
design in the documentation of "real-world" gains in stuttering management. In the past
several years, research methods that are capable of assessing authentic gains in
communicative abilities (i.e. qualitative) are being used as adjuncts to experimental designs
(Tetnowski & J. S. Damico, 2001). Qualitative methods have the benefit of using authentic
data from people who stutter that cannot be readily gathered in strictly controlled settings.
This has opened the doors to descriptive findings related to: the impact of stuttering on
identity (Daniels & Gabel, 2004), and the analysis of therapeutic discourse during therapy
(Leahy, 2004). A study on the successful stuttering management has revealed that support
from others including groups of PWS to be beneficial in the process (Plexico, Manning, &
DiLollo, 2005). In recent years there has been evidence to support the notion that self-help
6
activities, in the form of self-help groups, have been beneficial to attendees (Trichon,
Tetnowski, & Rentschler, 2007). Most recently, there has also been survey research
(Tetnowski & McClure, 2009) to support the utility of self-help conferences (and self-help
groups), but it does not give detail on how the conferences are helpful. In spite of these
gains, there is a lack of research about self-help activities for PWS and more specifically selfhelp conferences. The focus of this investigation is to understand the lived experience of
those who attended self-help conference(s) for PWS from the perspective of individuals who
stutter.
Throughout this document there will be terms that may be confusing to those outside of the
self-help movement; therefore, these terms will briefly be described here to assist in the
reading and understanding of this document. These terms will be expanded later in the
document, but the basic terminology is as follows:
(a)
Self-help groups for PWS - are a collection of people from the stuttering
community who meet to talk about various stuttering related topics. Meetings are
regularly scheduled, usually monthly, or biweekly and usually last approximately 2
hours. Many self-help groups are affiliated with NSA. Groups or "chapters" (NSA)
are created by PWS or professionals who are acting on behalf of a self-help
organization such as NSA. There are also self-help groups for the purposes of
practicing speech techniques that were learned from a SLP. These types of self-help
groups, however, are created by PWS who are not SLPs. Self-help practice groups
are typically not affiliated with the NSA.
7
(b)
Support groups for PWS - are a collection of people from the stuttering
community who meet to talk about various stuttering related topics or to practice
speech techniques. Meetings are regularly scheduled and usually last approximately
2 hours. Support groups are created by professionals, usually SLPs. The term
support group is sometimes used to self-help groups, but this causes confusion. For
the purpose of this manuscript support group will only refer to those groups created
by professionals not acting on behalf of a self-help organization. Keep in mind that
some literature may still use support group to refer to support groups and self-help
groups.
(c)
Self-help conference for PWS - A self-help conference for PWS is a 2 V2 to 4-
day event that is hosted by a self-help organization for PWS. Self-help conferences
are usually held annually with the site of the conference usually changing every year.
The key elements of a self-help conference include: an opening and closing, keynote
speeches, open microphone sessions in which people have the opportunity to say
anything they want in front of an audience, and regular sessions (also referred to as
workshops) in which a speaker(s) discusses a specific stuttering related topic(s),
planned social events (e.g. baseball game, dinner, and touring), and a banquet.
During the evening, conference participants typically partake in planned social outing
or form or join in on a more spontaneous social gathering whether it is going out or
utilizing the amenities of the hotel.
Although the distinction may seem small to those unfamiliar with the self-help movement,
the differences are significant. The smaller bi-weekly or monthly self-help groups that exist
8
throughout the country are the precursors of coming together with hundreds of PWS. So
many individuals have stated that this conference has "changed their life." In spite of these
anecdotal reports, there is a lack an authentic, systematic, and rich description from the
people who attend these self-help conferences for PWS. Therefore the purpose of this study
is to understand the experience of those who attended self-help conferences for PWS to
determine if they are useful in stuttering management.
9
2. REVIEW OF THE LITERATURE
The current investigation will examine the experiences of individuals who stutter that attend
self-help conferences and the potential role it may play in the overall management of
stuttering. This chapter will review the literature to give the reader a better familiarity in a
variety of topics related to the topic of investigation. It will include the following topics:
what is stuttering, stuttering measurements, philosophies of intervention, stuttering
management, qualitative research, and self-help. This background is included so that the
reader can understand the various opinions of experts and the relevance it has in
understanding the potential impact that self-help conferences can have on the lives of the
people attending them.
2.1 What is Stuttering?
The word stuttering can cause confusion and debate amongst researchers in the field. This
section will discuss both the narrow and broad views of developmental stuttering. The
narrow view will be briefly reviewed, while the broad view of stuttering will be examined in
more depth using three perspectives. Shapiro (1999) states, "defining stuttering is more than
a semantic exercise... .a definition establishes the foundation for and generates relevant
theories, therapies, and research" (p. 9). It is therefore important to understand different
perspectives of stuttering before discussing ways to measure and treat stuttering, in order to
understand more about potential benefits of self-help conferences for people who stutter
(PWS).
2.1.1 Narrow View
In the various descriptions of stuttering, Bloodstein and Ratner (2008) recognize that
definitions including ones from the observer's perspective and others from the speaker's
perspective. Descriptions of stuttering from the observer's perspective focus on features
which include repetitions of sounds, syllables, words, or phrases, prolongations of sounds,
tense pauses or blocks which may be accompanied by other bodily movements during the
struggle to produce speech. Observable features have been documented in a variety of ways
including frequency of disfluencies, naturalness of speech, and speech rate (R. J. Ingham,
1984; R. J. Ingham & Onslow, 1985; Onslow, Costa, C. Andrews, Harrison, & Packman,
1996; Schiavetti & Metz, 1997). These are also consistent with the view that stuttering is
only the observable features of the disorder.
2.1.2 Broad View
An alternate view of stuttering is a broad view that includes more than just the observable
features (E. B. Cooper 1993; Johnson, 1930; Manning, 1999, 2001, 2010; Murphy, 1999;
Shapiro, 1999; Sheehan, 1970; Starkweather & Givens-Ackerman, 1997; Van Riper, 1982;
Yaruss, 1998; Yaruss & Quesal, 2004b). These broader views of stuttering include intrinsic
features such as loss of control (Perkins, Kent, & Curlee, 1991), a restrictive lifestyle
(Plexico, Manning, & DiLollo, 2005), and cognitive and affective factors which consist of
emotions such as helplessness, shame, fear, guilt, and feelings of having to avoid words or
speaking situations (Corcoran & M. Stewart, 1998; Sheehan, 1970). Among those that feel
that intrinsic features are part of the disorder, there is disagreement on which intrinsic
features should be considered. These differences cause variation in how stuttering is
11
measured and how stuttering is treated. In order to gain some more insight into the broader
views of stuttering this review will include the major theories within this realm.
2.1.2.1 Sheehan 's Iceberg Analogy
One of the most useful resources to illustrate and facilitate the understanding of a broader
scope of stuttering has been Joseph Sheehan's (1970) iceberg analogy of stuttering. The
analogy includes a picture that shows three icebergs with different amounts of ice above and
beneath the water's surface. The part above the surface represents the observable features
and the below the surface features represents the unobservable features. Sheehan (1970)
prefers the terms stuttering behavior and concealment behaviors, respectively. The analogy
recognizes that there is more to stuttering than just the observable behaviors, similarly to how
the top or the observable part of the iceberg does not embody the whole iceberg. In
Sheehan's (1970) view, there is more to the iceberg beneath the water's surface, similarly to
how there are more "beneath the surface" aspects of stuttering. These beneath the surface
features or concealment behaviors include what Sheehan refers to as: false-roles, tricks, and
avoidances, which are associated with feelings of fear, guilt, and shame. Concealment
behaviors are used to try to "fool" listeners by hiding their stutter or their identity as "a
stutterer." These strategies often persist because of the periodic, focused success of avoiding
stuttered speech. However, these behaviors may impede upon the broader success of
communicating a message in the manner in which the speaker had originally intended. These
behaviors which may or may not continue to be successful in the avoidance of speaking with
stuttered speech often become a part of the disorder of stuttering. These intrinsic features are
an example of what some researchers believe broadens the scope of stuttering into a disorder
12
that affects the way someone communicates and socializes. Sheehan's (1970) illustration
supports this view through the various sizes of the icebergs and its positive correlation to
concealment behaviors. In other words, the more the beneath the surface features of
stuttering there are, the larger the disorder.
2.1.2.2 Wingate's "StandardDefinition"
Another example of this broader view of stuttering is the definition and popularity of Marcel
E. Wingate's (1964) three-part "standard definition" that says stuttering includes features
that may not necessarily be observable. These include the feeling that speech disruptions are
"not readily controllable" and other negative emotions. Wingate (1964) defines, stuttering
as:
1. (a) Disruption in the fluency of verbal expression, which is (b) characterized by
involuntary, audible or silent, repetitions or prolongations in the utterance of short
speech elements, namely: sounds, syllables, and words of one syllable. These
disruptions (c) usually occur frequently or are marked in character and (d) are not
readily controllable.
2. Sometimes, the disruptions are (e) accompanied by accessory activities involving
the speech apparatus, related or unrelated body structures, or stereotyped speech
utterances. These activities give the appearance of being speech-related struggle.
3. Further, there are not infrequently (f) indications or report of the presence of an
emotional state, ranging from a general condition of "excitement" or "tension" to
more specific emotions of a negative nature such as fear, embarrassment,
irritation, or the like, (g) The immediate source of stuttering is some
13
incoordination expressed in the peripheral speech mechanism; the ultimate cause
is presently unknown and may be complex or compound, (p. 488)
This definition is one of the most widely cited descriptions of stuttering. Google Scholar Beta database (Google scholar beta, n.d.) reports that the article on Wingate's standard
definition has been cited in 169 journal articles.
2.1.2.3 Yaruss and Quesal 's Framework (based on WHO's ICF)
Beyond Sheehan's (1970) iceberg analogy and Wingate's (1964) standard definition,
stuttering in a broader scope has also been described by J. Scott Yaruss and Robert Quesal
(2004b). They believe that stuttering can also be understood within the framework of the
World Health Organization's (WHO) International Classification of Functioning, Disability,
and Health (ICF) (WHO, 2001). This framework was created to describe all aspects of an
individual's health experience (Yaruss & Quesal, 2006). As seen in Figure 1, the ICF
framework is divided into: (1) health conditions and (2) contextual factors. Both of these
categories are divided into two subcategories each. Health conditions are further divided
into: (a) body functions and structures (impairments), and (b) activity and participation
(limitations and restrictions); while contextual factors are further divided into: (c)
environmental factors, and (d) personal factors.
14
Figure 1. International Classification of Functioning, Disability, and Health
Categories and Subcategories
International
Classification of
Functioning,
Disability, and
Health
I
(1) Health
Conditions
(2) Contextual
Factors
1
(a) Body Functions
and Structures
Anatomy and
physiology of the
human body
(impairments)
(b) Activity and
Participation
Execution of a task
or action (limitations
or restrictions)
(d) Personal Factors
(c) Environment Factors
Physical, social, and
attitudinal environments
Internal influences on
an individual's
functioning and
disability and are not
part of the health
condition
Adapted from WHO (2001).
Yaruss and Quesal (2004b) use the ICF framework to describe how stuttering fits into each
of the ICF's component parts. First, within health conditions' first subcategory, body
functioning and body structure (impairments), Yaruss and Quesal use the ICF comprehensive
list of body functions to highlight that stuttering relates to "functions of fluency, rhythm,
[and] speed.. .of speech" (Section b330). To complete this first subcategory within health
conditions, Yaruss and Quesal (2004b) refer to neurological research to address body
structure. This is supported through findings of Foundas, Bollich, Corey, Hurley, and
Heilman (2001) and Sommer, Koch, Paulus, Weiller, and Buchel (2002) who identify
15
differences between the nervous systems of adults who do and do not stutter. Foundas et al.
(2001) found that among the differences were that adults who stutter: (i) had significantly
larger right and left planum temporal, (ii) had less planar asymmetry, and (iii) had some
unique gyral variants including a second diagonal sulcus and extra gyri along the superior
bank of the sylvian fossa. Sommer et al. (2002) found that adults who stutter had structural
abnormality in speech-relevant areas in the left rolandic operculum that disturbed signal
transmission which could impair sensorimotor integration necessary for fluent speech
production.
Yaruss and Quesal (2004b) address the second subcategory of health conditions, activity and
participation (limitations or restrictions), by referring to communication (Chapter 3) in the
ICF's Activities and Participation list) as one of the many broad topics. Stuttering directly
affects the activity of speaking (d330) and other specific speaking situations which include
starting and sustaining conversation (d3500, d3501), conversing with one or many people
(d3503, d3504) and "using telecommunication devices...including telephones" (d3600).
Stuttering may also indirectly affect activities and participation since speaking plays such a
central role in many aspects of life. Yaruss and Quesal (2004b) refer to examples in chapters
on "domestic life" (Chapter 6), interpersonal interactions and relationships" (Chapter 7),
"major life areas" which include education and employment (Chapter 8), and "community,
social, and civil life" (Chapter 9). Such examples include difficulty with: assisting others
with communication (children) (d6602), interpersonal relationships (d6603), interacting
according to social rules (d7203), relating with strangers (d730), in all levels of education
including higher education(d830), seeking or maintaining employment (d8450, d8451),
16
participation in informal (d9100) or formal (d9101) associations or clubs, and participating in
specific religious activities (d9300). However, it is important to indicate that these examples
may be true of many people, but are not necessarily supported by research. In addition,
experiences of stuttering vary from person to person and can vary over time within an
individual.
As complicated and detailed as these topics are within the category of health conditions,
many would judge Yaruss and Quesal's (2004b) ICF-based framework of stuttering to have a
broad view of stuttering because of the inclusion of the contextual factors as part of the
framework. As previously mentioned, Yaruss and Quesal (2004b) discuss how the ICF
framework split contextual factors into the further distinctions of environmental factors and
personal factors. They detail how environmental factors can influence the disorder in
positive or negative ways. Below is a table of examples adapted from Yaruss and Quesal
(2004b) and ICF Illustration Library (International University of Health and Welfare, n.d.).
17
Table 1. Environmental Factors of Stuttering - Examples
Title
Positive Influence
Products and
Technology (Ch 1)
Support and
Relationship
(Ch3)
Negative Influence
fluency enhancing devices (el 15)
immediate and extended family (e310,
e315), friends and acquaintances (e320,
e325) or "other professionals" (e360)
who show support and encourage
participation in activities
Attitudes
(Ch4)
.. .who negatively
influence stuttering by
being impatient or
discouraging
participation in activities
ridicule or discrimination
because of stereotypes
about stuttering could
negatively influence
stuttering; this could
come from society
(e460), immediate or
extended family (e410,
e415), friends (e420), etc.
electronic mail may make
communication easier and participation
in activities more manageable (e5350);
use of the telephone
Service Systems
internet for access to online support
because of negative
such as chats, blogs, discussions
and Policies
reactions to telephone
groups, broadcasts, etc. (e5602);
(Ch5)
usage (e5350).
support organizations that provide
information, organize self-help
activities (e5550).
Adapted from Yaruss and Quesal (2004b) and International University of Health and Welfare
(n.d.).
The table exemplifies how environmentalfactors can have positive and negative influences
on fluency or the experience of being a person who stutters (PWS). This view of stuttering
includes communication breakdowns beyond the readily observable breakdowns in motor
speech production; therefore the inclusion of such environment factors supports a broad view
of stuttering.
Finally, Yaruss and Quesal (2004b) discuss the last subcategory in the ICF framework personal factors, which ICF defines as "internal influences on functioning and disability"
18
(WHO, 2001, p. 11). The ICF broadly includes "gender, race, age, other health conditions,
fitness, lifestyle, habits, upbringing, coping styles, social background, education, profession,
past and current experiences (past life events and concurrent events), overall behavior pattern
and character styles, individual psychological assets and other characteristics" (WHO, 2001,
p. 17) as possible personal factors, but does not have a specific list for personal factors as it
does for environment factors. The ICF states that it is "because of the large social and
cultural variance" (WHO, 2001, p. 8) associated with personal factors. In the absence of a
specific list, Yaruss and Quesal (2004b) make the point that personal factors of stuttering are
very similar to the speaker's reactions to stuttering. Speaker's reactions to stuttering are
often discussed in terms of affective, behavioral, and cognitive (ABC) reactions to stuttering
(E. B. Cooper, 1997; Manning, 2001, 2010; Yaruss, 1998). These speaker's reactions, which
are not always necessarily negative, are a key component in determining how the experience
of stuttering can impact someone's life. For example, helplessness, shame, fear, and
avoidance have been identified as some of the negative feelings (Corcoran & M. Stewart,
1998) associated with stuttering. However, as one learns to cope with stuttering, feelings of
hope, acceptance, optimism (Yaruss & Quesal, 2004b) may exist and have a positive
influence on the overall disorder.
Yaruss and Quesal's (2004b) broader view of stuttering in the conceptual framework of the
ICF becomes more complex with bidirectional interactions between the four components and
with the interaction between the disorder and the components. Despite the framework's
complexity, it theoretically demonstrates not only that there are internal and external factors
19
to the disorder, but also that there are both observable and non-observable or beneath the
surface features to the disorder.
The concepts of stuttering as a disorder that is more than its observable features that have
been presented have been sustained in a number of ways. Both Sheehan's (1970) iceberg
analogy and Wingate's (1964) standard definition have been staples in the literature for years
and continue to be referenced today. In addition, the main idea behind Sheehan's iceberg
analogy has been presented on the International Stuttering Awareness Day (ISAD) online
conference (Hicks, 2003b, 2005b). Hicks' (2003a) presentation of the iceberg analogy at the
numerous conferences of the National Stuttering Association (Hicks, 2003, 2004, 2005b,
2006, 2007, 2008, 2009) support the notion that the analogy is still relevant and has been
supported within the stuttering self-help community. Yaruss and Quesal's (2004b) ideas of
how stuttering fits into the WHO's ICF framework to describe the experience of stuttering is
based in the theoretical framework of the WHO's ICF. Therefore, there is an expert opinion
basis for the viewpoint that stuttering is a disorder that is more than its observable features.
Unfortunately, in spite of their widespread use and acceptance, there is limited research
documentation to fully support this view.
The previous section has shown that stuttering has been defined and conceptualized in
various ways. Some researchers view stuttering as a disorder that is characterized by only its
observable features, while other researchers find it paramount to include the intrinsic features
of the disorder as part of its description. This disparity impacts how stuttering is measured or
assessed. Further, this discrepancy has a profound effect upon treatment and how one
20
defines treatment success. A broad view of stuttering, which includes both observable and
intrinsic features of the disorder, would be a better fit for an investigation which explores the
potential role that self-help activities for PWS may play in stuttering management. This
would be more in line with the view of a social constructivist (Bruner, 1991; Vygotsky,
1962). The social constructivist takes the viewpoint that complex behaviors, such as speech
communication, happen in a social context and are too complex for experimental designs that
control for as many variables as possible. Experimental designs usually do not consider
unobservable or complex phenomenon, such as the broader views of stuttering previous
described. Furthermore, it is possible that the preponderance of experimental research
strategies in stuttering limit what can be accurately reported in the literature. As recently as
2004, surveys of the stuttering literature show that over 90% of the research studies in
stuttering rely on experimental methodologies that are more rigid in their controls and thus
limit the measurement of intrinsic conditions affecting stuttering (Tetnowski & J. Damico,
2004). Therefore, this broader view of stuttering opens the door to understanding many
complex, social aspects of stuttering that have yet to be explored.
2.2 Measurements of Stuttering
Stuttering measurements are paramount in both clinical interventions and research, but they
are based on the theoretical constructs of what the tool developer(s) believes stuttering to be.
Even when discussing the observable features of stuttering there have been questions about
the reliability and validity of stuttering event judgments (Brundage, Bothe, Lengeling, &
Evans, 2006; R. J. Ingham, Cordes, J. C. Ingham, & Gow, 1995; Cordes, R. J. Ingham,
Frank, & J. C. Ingham, 1992). In spite of these issues, measurement tools do provide
21
information about an individual's stuttering at particular points in time, including pretreatment, during treatment, and post-treatment. Differences in how stuttering is viewed has
lead to differences in how stuttering can be measured. This section will discuss instruments
that have been developed to measure both observable and the non-observable features of
stuttering. Based on the ICF model, validity of many of these instruments is brought into
question.
2.2.1 Tools for Observable Features
Over the years, measurements of the observable features of stuttering have proved to be
popular. However, within the realm of observable features there are many methods of
measurement. This subsection will review instruments that have been developed that put the
clinician/researcher in the role of observer to make judgments about the observable features
of stuttering.
2.2.1.1 Frequency Formulae
Percentage of stuttered syllables, number of blocks per 100 words, words stuttered per
minute, and other numerical formulae that relate to stuttering frequency, according to Minifie
and Cooker (1964), were the most reliable type of severity instrument. However, these
frequency-based measures of assessing stuttering were criticized for not being sensitive to
changes in other parameters of stuttering (Sherman & Trotter, 1956). Even though this
criticism was referring to some of the other observable features of the disorder such as
duration of stuttering and body movements associated with stuttering, researchers with a
broad sense of stuttering would perhaps extend this criticism to apply to the fact that it too
22
does not recognize any of the intrinsic features of the disorder. Additionally, the reliability
of counting of instances of stuttering has been called into question (e.g. Young, 1975; Young
& Downs, 1969). It is likely that more than just the surface measures of stuttering are
required for a more complete understanding of stuttering.
2.2.1.2 Sherman-Lewis Scale
One of the earlier stuttering instruments that focused on the observable features was the
Sherman-Lewis Scale (D. Lewis & Sherman, 1951; Sherman, 1955). This was a procedure
in which the audio-taped speech of a PWS was compared and matched, to one of nine
severity-ranked audio-taped samples of stuttering. In addition to the criticism of its
complicated procedure and sole reliance on auditory input which ignores the visible
manifestations of the disorder (G. D. Riley, 1972), the scale does not assess the intrinsic
features of the disorder.
2.2.1.3 Iowa Scale for Rating Severity of Stuttering
Another earlier stuttering instrument was the Scale for Rating Severity of Stuttering, also
known as the Iowa Scale, (Johnson, Darley, & Spriestersbach, 1963). This scale has a range
from zero to seven with each level being a composite of several variables such as frequency,
tension, duration of disfluency, patterns of disfluency, distracting sounds, and associated
movements. Many items require the listener to make judgments about the speaker's
motivation for behaviors that may or may not be related to stuttering (Naylor, 1953). Van
Riper (1982) criticizes the manner in which the variables are grouped together because of
their lack of correlation with each other. G. D. Riley (1972) makes the point, that "such
23
terms as avoidance, anxiety, and cancellation imply that the examiner can readily ascertain
these motivations" (p. 314). The dependence on the judgments of the listener about the
speaker's motivation opens this rating scale to criticism about its validity (Moore & Perkins,
1990). Perhaps the best judgment of a speaker's motivation to determine if a behavior or an
action was related to stuttering would come directly from the speaker as opposed to an
observer. This not only lends support to a broad view of stuttering which includes the
intrinsic aspects of the disorder, but also that PWS may be a valid resource to gain more
understanding about the intrinsic features by sharing their own experiences.
2.2.1.4 Stuttering Severity Instrument
In an attempt to standardize and improve reliability of observable features of stuttering, G.
D. Riley (1972) created the first edition of the Stuttering Severity Instrument (SSI). This
instrument, now in its fourth edition (SSI-4) (G. D. Riley, 2009), also uses frequency counts,
duration, and physical concomitants to calculate stuttering severity. Each of these major
variables is scored separately on its own scale. The instrument requires speaking samples in
various situations at various times to minimize issues of stuttering variability within an
individual. Frequency is calculated using percentage of stuttered syllables; duration is
calculated by using an average of the three longest stuttering events; and physical
concomitants is based on observations regarding distracting sounds, facial grimaces, head
movements, and movement of the extremities (G. D. Riley, 2009). Scores in these three
domains are combined, with nearly equal weight (18 points, 18 points, 20 points,
respectively) in determining which of the five ranked, severity equivalents that an individual
fits. The first three versions of this popular instrument have focused on observable features
24
of stuttering; however the fourth edition includes a supplementary tool called the Clinical
Use of Self-Reports (CUSR). The purpose of the CUSF is to help assess some beneath the
surface features of stuttering such as - perceived stuttering severity, locus of control, and
avoidances. This supports the view that stuttering is more than its observable features. Other
additions that come with the SSI-4 are a 9-point naturalness rating scale for the examiner to
complete and post-treatment measures of the clients' perception of: naturalness, satisfaction
of treatment, and how an acquaintance would rate their stuttering. G. D. Riley's (2009) SSI4 finally recognizes the beneath the surface features of stuttering, but still does not
incorporate them into the way that stuttering severity is calculated. Although various
versions of the Stuttering Severity Instrument are among the most widely-used tools for
evaluating stuttering, it has been widely criticized. K. E. Lewis (1994) criticized the
reliability of the SSI-3. Others have criticized the tool for not recognizing the affective,
behavioral and cognitive reactions (ABCs) to stuttering. These reactions often lead to
"disability" and additional impairment (Yaruss, 1998). Clearly, documenting the validity and
reliability of measures like the Stuttering Severity Instrument may require further study.
The preceding measurements of the observable features of stuttering are important in
assessing the disorder, but many critics feel that these tools do not assess the whole disorder
and furthermore, there are questions about the reliability of these tools. Other tools have
been devised. The next section presents tools that attempt to measure the broader scope of
the stuttering disorder.
25
2.2.2 Tools for Intrinsic Features
In contrast, this section presents tools that have been developed to measure the intrinsic
aspects of stuttering. Some researchers recognize intrinsic features as a critical part of the
disorder and as a result have included ways to assess them as part of assessment tools.
Manning (2001) lists and briefly describes 51 assessment tools procedures related to fluency
disorders. Of the 51 assessment tools, 48 pertain to the direct assessment of individuals who
stutter. The majority of the 48 assessment tools contain at least a portion to assess intrinsic
features that have been associated with stuttering. There are 28 assessment tools that utilize
the speaker's own judgments to assess intrinsic features. Assessed features include: (a) the
speaker's attitudes and feelings, (b) avoidance, (c) concealment devices, (d) fear/anxiety, (e)
reactions and confidence levels in various speaking situations, (f) reactions to stuttering, and
(g) locus of control. In addition, six assessment tools utilize the clinician's judgments of the
speaker's intrinsic features. Examples of these features include clinician judgments of: (a)
speaker's attitude, (b) postponement and avoidance tactics, (c) speaker's reaction to
disfluencies, and (d) judgments about the speaker's personality. Some may argue that
clinician judgments of these factors should not be categorized as intrinsic features or that
judgments about intrinsic features made by anyone else beside the speaker may not be
completely valid or reliable.
Three popular assessment tools that use the speakers' judgments to evaluate intrinsic features
are the Perceptions of Stuttering Inventory (PSI) (Woolf, 1967), the Wright & Ayre
Stuttering Self-Rating Profile (WASSP) (Wright & Ayre, 2000), and the Overall Assessment
of the Speaker's Experience of Stuttering (OASES) (Yaruss & Quesal, 2008). All three are
26
widely cited in the literature, and serve as exemplars for the types of tools that assess
intrinsic features of stuttering. The next subsections will review these tools and will suggest
the importance of developing other ways to learn about the intrinsic features of stuttering.
2.2.2.1 Perceptions of Stuttering Inventory
The Perceptions of Stuttering Inventory (PSI) (Woolf, 1967) is a self-report that assesses the
inner behaviors of avoidance, expectancy, and struggle. This recognizes some of the beneath
the surface characteristics of stuttering. There are 20 items to assess each of the three
behaviors, totaling 60 items. Lanyon (1967) states that self-reports are useful in initial
assessments, but have not exhibited to be a stable measure of changes in severity during
treatment. Due to the lack of reliability, better methods of examining intrinsic features of
stuttering need to be developed and tested. Additionally, use of this tool is limited to items
that are surveyed by the 60 questions that comprise this test. Perhaps a qualitative paradigm
may be more suitable to examine the complexities of the intrinsic features of stuttering.
2.2.2.2 Wright & Ayre Stuttering Self-Rating Profile
The Wright & Ayre Stuttering Self-Rating Profile (WASSP) (Wright & Ayre, 2000) is a
client-completed, standardized instrument. It is said to be the first instrument to attempt to
describe aspects of the whole disorder (Ayre & Wright, 2009). As mentioned earlier, selfreports have not been a stable measure of changes in severity during treatment (Lanyon,
1967), but more recent studies have found stuttering self-ratings to be a valuable source of
information with regards to stuttering severity (O'Brian, Packman, & Onslow, 2004) and
other factors related to stuttering (Manning, 2001; J. Riley, G. D. Riley, & Maguire, 2004).
27
The development of the instrument was influenced by the WHO's International
Classification of Impairments, Disability and Handicap (ICIDH) (WHO, 1980), the precursor
to the International Classification of Functioning, Disability, and Health (ICF) (WHO, 2001).
The instrument was designed to measure change over time and to facilitate the setting of
clinical goals. It uses a 7-point Likert scale for 24 items (plus two optional items) in the
domains of: stuttering behavior (8 items), thoughts about stuttering (3 items), feelings about
stuttering (5 items), avoidance due to stuttering (4 items), and disadvantages due to stuttering
(4 items). This tool may be an improvement over previous tools; however, the test items do
not leave room for expansion and do not allow an individual to be more descriptive. Several
strategies within qualitative research would possibly allow participants to be more flexible in
their descriptions of stuttering.
2.2.2.3 Overall Assessment of the Speaker's Experience of Stuttering
The Overall Assessment of the Speaker's Experience of Stuttering (OASES) (Yaruss &
Quesal, 2008) is another client-completed, 100-item (5-point Likert scale), standardized
instrument. The OASES is similar to the WASSP in that it aims to measure the disorder as a
whole. The OASES collects information about the "totality" of the disorder including:
general perspectives about stuttering, affective, behavioral, and cognitive reactions to
stuttering, functional communication difficulties, and impact of stuttering on the speaker's
quality of life. The OASES, like the WASSP was based on the WHO's (1980) ICIDH, but
still fits the more current ICF (WHO, 2001) framework. The development of the OASES
coincides with both American Speech-Language Hearing Association's (ASHA) philosophy
(ASHA, 2004) that resulted in their Evidence-Based Practice in Communication Disorders
28
position statement (ASHA, 2005), and ASHA's consideration of making the WHO's ICF the
likely standard to describe health related experiences (positive or negative - i.e. fluency or
stuttering) (Yaruss & Quesal, 2004b). Even though the tool addresses the whole disorder and
does so within the framework of the ICF (WHO, 2001) and does so from the perspective of
the speaker, it still does not allow the speaker to expand upon any of the items. This inhibits
the assessment process by preventing the speaker from giving any detail or insight about how
they experience the disorder. A qualitative methodology would be capable of allowing
participants to go into details about their experiences.
Tools to assess the intrinsic features of stuttering were designed to recognize the importance
of measuring the disorder on levels that go beyond the observable features of the disorder.
Most of them were designed to rely on the perspectives of the individuals being assessed;
however, the instruments were designed to ask individuals specific questions or their
opinions on specific items. As previously mentioned a better assessment may be derived by
allowing individuals more freedom in their answers, rather than being constrained by yes/notype questions or by giving a number on a Likert scale. A qualitative paradigm would allow
participants the flexibility to talk about their experiences using their own words. A
qualitative paradigm may include open-ended questions that would provide individuals with
the opportunity for more expansive answers would allow them to express what they want to
communicate about this complex disorder that cannot be deconstructed. This may lead to
more detailed answers of their experiences of stuttering and possibly lead to a better
understanding with more detailed information.
29
This section on stuttering measurements has shown that assessment tools for stuttering come
in various forms. Assessment tools generally either focus on the observable features by
relying on the clinicians'/researchers' judgments, or they focus on the intrinsic features by
relying on the speakers' perceptions. Both observable and intrinsic features are important in
assessing the entire disorder of stuttering. Instruments to assess observable features include
various frequency formulae, such as the Sherman-Lewis Scale (D. Lewis & Sherman, 1951;
Sherman, 1955), the Iowa Scale (Johnson, Darley, & Spriestersbach, 1963), and the SSI,
currently on its 4th edition. Instruments to assess intrinsic features include the PSI, the
WASSP, and the OASES. These instruments are helpful in assessing stuttering but
assessments of observable features alone ignore the intrinsic features, while measurements of
intrinsic features ask speakers about specific items. Perhaps allowing speakers the freedom
to use their own words to answer broader based questions may reveal more about the
disorder. From a research standpoint, finding better ways to assess stuttering is important for
the purposes of learning more about the disorder. From a clinical standpoint, finding better
ways to assess stuttering is important in deciding the best treatment strategies. The next
section is dedicated to the exploring the treatment strategies used today and how this study
relates to them.
2.3 Current Treatment Strategies
Historically there has been a dichotomy of fundamental treatment strategies for stuttering
treatment - fluency shaping, also known as fluency modification, and stuttering modification
(Blomgren, Roy, Callister, & Merrill, 2005). Cognitive restructuring, is yet another strategy.
It can be used independently, but is often used in combination with the other two approaches.
30
All three are best differentiated by the amount of focus that is placed on the observable
features and intrinsic features of the disorder. A fluency shaping approach uses operant
conditioning to focus on the elimination or minimization of observable features, without any
focus on intrinsic features. A stuttering modification approach attempts to minimize
observable features by making stuttering easier. This is done so in the context of changing
cognitive and attitudinal responses to stuttering to minimize the impact that intrinsic features
can have on an individual. Finally, cognitive restructuring only focuses on changing
cognitive and attitudinal responses to stuttering to reduce the handicapping effects that
stuttering may impose upon an individual (Manning, 2010). The following sections will
review these approaches in more depth and how they may relate to treatment and self-help
activities for PWS.
2.3.1 Fluency Shaping
In the realm of speech therapy, fluency shaping or fluency modification strategies, aim to
eliminate observable stuttering behaviors by changing the physical mechanics of speech.
The changes that could be targeted are speech rate, articulation, voicing pattern rhythm
pattern, and/or breathing pattern (Wingate, 1969). Many of the basics for fluency shaping
therapy were described by Dean Williams (1957). The five parameters of forward moving
speech that Williams describes are: (a) consistent flow of air from the lungs; (b) creation of
movement of the rib cage, abdomen, and articulators; (c) better coordination of respiration,
phonation, and articulation; (d) initiation of laryngeal movement for voicing and smooth
transition between voiced and voiceless sounds; and (e) use of appropriate muscular tension
to move the articulators. These parameters of forward moving speech have resulted in long
31
standing therapy techniques which include the more recognizable terms such as easy onset,
continuous phonation, modified breathing (focus on diaphragmatic breathing), and light
articulatory contact. A fluency shaping approach can be thought of as physical therapy for
the speech production system (Manning, 2010), but it ignores the intrinsic effects that
stuttering may have upon the speaker.
Many of the early fluency shaping programs were developed from an operant conditioning
model in which there was little or no emphasis on the intrinsic aspects of stuttering (Cordes
& R. J. Ingham, 1998; Costello, 1983; J. C. Ingham, 1993, 1999; R. J. Ingham, 1984; Jones,
Onslow, Harrison, & Packman, 2000; O'Brian, Onslow, Cream, & Packman, 2003; Perkins,
1973; Ryan, 1980, 2001; Ryan & Van Kirk Ryan, 1995; Webster, 1974). The Extended
Length of Utterance (ELU) (Costello, 1983; J. C. Ingham, 1993, 1999) is a fluency shaping
therapy aimed to help children to produce spontaneous natural sounding, stutter-free speech.
The child progresses through 20 steps by maintaining speech control while increasing the
length and complexity of the child's utterances. Stutter-free speech is reinforced and
occasional stopping for moments of stuttering. A similar fluency shaping program called,
Gradual Increase in Length and Complexity of Utterance (GILCU) (Ryan & Van Kirk Ryan,
1995) aims to gradually (54 steps) increase fluent utterances of one word, to 5 minutes of
fluent reading, to 5 minutes of fluent monologue, to 5 minutes of fluent conversation. Clients
were reinforced for correct responses by the clinician's verbal response, "Good," and the
clinician giving the client a redeemable token. The Lidcombe Program trains parents to use
verbal responses or "verbal contingencies" to shape the fluency of preschool children (Jones,
Onslow, Harrison, & Packman, 2000; Onslow, 2003). The Camperdown Program (O'Brian,
32
Onslow, Cream, & Packman, 2003) on the other hand, shapes the speech of adult clients
through prolonged speech to shape their fluency. The Precision Fluency Shaping Program
(PFSP) developed by Webster (1975). The 3-week intensive program addresses stuttering as
a motoric problem. Clients are trained to use "targets" that focus on the coordination of
respiration, phonation, and articulation through the additional focus on speech rate control
and voice onset. Clients gradually "transfer" from using the speech skills in the clinic to
outside of the clinic (Webster, 1980).
The goal of a fluency shaping approach is to enhance fluency by changing respiration,
phonation, and/or articulation. Fluency shaping does not include any kind of counseling in
the traditional sense (Manning, 2010); however, graduates of PFSP have reported that
conversations among clients during the program, often revolved around sharing experiences
of stuttering. Such conversations have been reported to be therapeutic even though such
conversations are not discussed in the literature as part of the program. Such conversations
are illustrated in the movie, Talk to Me (Potocsny, 1984), about one man's journey through
the PFSP program. This particular fluency shaping program incorporates both individual and
group settings to teach clients the various speech skills of the program. In addition, group
settings are used to give clients time to practice their skills while in conversation. Fluency
shaping approaches, however, do not necessarily always include working in groups. In other
words, conversations about the experience of stuttering and any potential effects are
associated with being in a group setting (Manning & DiLollo, 2007; Prochaska &
DiClemente, 1986; T. Stewart & G. Richardson, 2004) and not generally associated with a
fluency shaping approach. Yalom and Leszcz (2005) states that "therapeutic change is an
33
enormously complex process that occurs through an intricate interplay of human
experiences" (p. 1) Fluency shaping approaches have a focus on speech skills and discount or
disregard discussion about the intrinsic features, possibly limiting long-term gains.
Fluency shaping approaches have been reported to be successful in the elimination or
reduction of the observable features of stuttering (Boberg & Kully, 1994; R. J. Ingham,
Kilgo, J. C. Ingham, Moglia, Belknap, and Sanchez, 2001; O'Brian, Onslow, Cream, &
Packman, 2003; Onslow, Costa, C. Andrews, Harrison & Packman, 1996; Packman, Onslow,
& Menzies, 2000). At least one author has made the assumption that fluency shaping
strategies assume that as a client becomes more fluent he/she will change the cognitive and
affective features of the disorder (Manning, 2010). Clients, however, often experience
relapse and exhibit increases in the observable features of stuttering (Craig, 1998; Yaruss,
Quesal, Reeves et al., 2002). Relapse has been labeled as "the rule" rather than the exception
(Van Riper, 1973), and the "Achilles heel" of stuttering intervention (Kuhr & Rustin, 1985).
Studies report that relapse of observable features of stuttering to occur in over 50% to over
70% of the clients (Boberg, 1981; Craig, 1998; Craig & Calver, 1991; Craig & Hancock,
1995; Culatta & S. A. Goldberg, 1995; Perkins, 1983; Silverman, 1992). Manning and
DiLollo (2007) explain that even though therapy may change the physical behaviors of
stuttering in a few weeks or months, the affective and cognitive features of stuttering may
take much longer. Bloodstein (1995) suggests that relapse is more of a problem with a
predominantly behavior-based approach since "it is unreasonable to expect a lifelong
problem to be permanently eradicated in the short time it takes to learn to speak fluently in a
slow manner by prolonging syllables" (p. 445). Even though Bloodstein's explanation may
34
be an oversimplification of the behavior modification approach and may have intended to
target operant conditioning specifically, it does make the point that individuals have lived
almost all of their lives with the disorder. Perhaps this near lifelong struggle impacts an
individual's identity. Perkins (1979) states that "lapses seem to have more to do with the
person's sense of identity as a stutterer, and his misgivings about relinquishing that identity,
than with inability to maintain the skill to normal sounding speech" (p. 109). Kuhr and
Rustin (1985) and Manning (2001) reported feelings of anxiety, guilt, deception, and
depression near the end of successful treatment. DiLollo, Neimeyer, and Manning (2002)
suggest that such observations may be related to the challenges associated with transition
from the client's self-concept as a stutterer to a fluent speaker. Bloodstein (1995), Manning
(2001), and Perkins (1979) agree in that in order for a PWS to maintain fluent speech, major
shifts in self-concept need to occur. Conture (2001) notes that successful change in speech
behaviors do not mean that the disorder, or the most vital aspects of the disorder, has been
conquered. In spite of this continued debate, fluency shaping therapy continues to be
popular. Perhaps its popularity is related to the initial success that many clients experience in
minimizing or eliminating observable features of stuttering. On the other hand, its positive
reception is due to the highly structured and often manualized programs (Boberg & Kully,
1985; Herring, 1986; O'Brian et al., 2003; Webster, 1982) that are easier to administer for a
clinicians who may not be as familiar with the experience of stuttering (McFarlane & L.
Goldberg, 1987; Ratner & Healey, 1999). Self-help activities for PWS could be a useful
supplement to a fluency shaping approach.
35
Since the focus of fluency shaping approaches is on the observable features of stuttering,
there is the potential that client beliefs of successful therapy hinge on their fluency. In other
words, ways that reduce the handicap of stuttering such as self-acceptance, approaching more
conversations, becoming a better overall communicator, and stuttering with less tension,
would not be considered to be successful by fluency shaping approach standards. The
focused belief that fluency is the determining factor of success may obstruct clients' potential
curiosity to attend or appreciate any potential effects of attending self-help groups like the
ones found in Trichon, Tetnowski, and Rentschler (2007) or national self-help conferences.
In the absence of, or lack of counseling or therapeutic discussion about the experiences of
stuttering, it may be paradoxical that clients from a fluency shaping approach may experience
the greatest effects from such conversations at self-help events.
2.3.2 Stuttering Modification
2.3.2.1 Overview - Stuttering Modification
Stuttering modification strategy, also known as nonavoidance, stutter-more-fluently, or Van
Riperian therapy (Gregory, 1973) was a therapy strategy that was formalized by Charles Van
Riper (1972). Stuttering modification, unlike a fluency shaping approach, focuses more on
the intrinsic features of stuttering. This involves a concentrated cognitive focus by both
client and clinician (Manning, 2010). Stuttering modification also has a learning element
that aims to change some of the speech behaviors of the client. The objective of the speech
behaviors or techniques are not fluency, instead the objective is to decrease the tension
associated with stuttering moments, which may at times result in more fluency. Cognitive
and attitudinal changes often make it possible for clients to learn and use such speech skills
36
that can result in an easier form of stuttered speech. In this approach, the focus is to
minimize or eliminate the speaker's fear, related avoidance, and struggle behaviors used to
escape stuttering. This is accomplished through a series of steps to help the individual to
identify his stuttering, become desensitized to his stuttering, and then change his stuttering to
easier or less effortful forms of stuttering. In this approach many speakers achieve speech
that is spontaneously fluent, but the main focus is to replace uncontrollable or reflexive
stuttering with "fluent stuttering," or "easy stuttering," meaning stuttering less severely
(Guitar, 1998). This involves changing how the individual thinks of himself and his
experience of stuttering, so that communication choices are less influenced by the fear of
stuttering (Manning, 2010). Examples of stuttering modification approaches can be found in
several sources such as Bloodstein (1975), Conture (2001), Guitar (1998, 2006), Johnson,
Brown, Curtis, Edney, and Keaster (1967), Luper and Mulder (1964), Shapiro (1999),
Sheehan (1970, 1979), Van Riper (1973, 1982), and Williams (1971, 1983, 2004). Examples
of therapy that rely on the major concepts of stuttering modification are the American
Institute for Stuttering (AIS; Montgomery, 2006) and family-focused therapies (Kelman,
Nicholas, & Millard, 2005; Rustin, Botterill, & Kelman, 1996; Yaruss, Coleman, & Hammer,
2006). AIS approaches stuttering as a "complex, multidimensional disorder that requires a
whole person, multifaceted approach" which include: (a) managing speech, (b) reducing
fears, (c) eliminating avoidances, and (d) strengthening self-perception (AIS, n.d.). Familyfocused treatment for young children who stutter, as described by Yaruss, is therapy that
aims to "achieve and maintain normal fluency while developing healthy, appropriate
communication attitudes and effective communication skills" (Onslow & Yaruss, 2007, p.
37
68). The next subsection will explore Van Riper's stages of a stuttering modification
approach.
2.3.2.2 Stages of Stuttering Modification
The various stages of Van Riper's (1973) stuttering modification will be explored in detail to
seek potential areas in which self-help activities or self-help conferences may play a role.
The six stages of stuttering modification are motivation, identification, desensitization,
variation, approximation, and stabilization (Van Riper, 1973).
Motivation is the first of Van Riper's (1973) six steps in stuttering modification. During this
stage the client's drive for success is assessed. Therapy for stuttering should not be taken
lightly since it involves a large investment of time, physical and emotional energy, and
money. In this first step the clinician helps the client to build and maintain the client's
motivation in changing speech behaviors and attitudes. The maintenance of the client's
motivation is pertinent throughout therapy. Trichon et al. (2007) study of the experiences of
self-help group attendees found that attendees gained encouragement or inspiration. One
self-help group attendee said, "It's been a very good experience ... [member] has really been
inspirational.... Just knowing his story of [his] struggling for so long and yet being fluent
today ... he's so encouraging to others" (p. 174). This thematic finding seems to be aligned
with Van Riper's (1973) goal to build and maintain motivation. Perhaps some the findings in
self-help groups are similar to that of the experiences of people who attend self-help
conferences for PWS. It is important to also realize that the time intensity of self-help
38
conferences, which are usually annual, may result in different experiences than that of people
who attend the shorter, but more consistent throughout the year, self-help groups for PWS.
During identification (Van Riper, 1973) the client aims to recognize both surface and beneath
the surface features of his stuttering. The clinician may help the client to identify features of
his stuttering by asking him to make lists of both, things he does when he stutters and things
he does because he stutters. The first list might include more of the surface features of
stuttering while, the later list may include ways the client avoids, faces situational anxieties,
faces feelings of fear, makes decisions with stuttering as a factor, etc. Trichon et al. (2007)
discuss awareness and exposure to other PWS as beneficial features of attending self-help
groups. Both of these themes support the notion that attendees of self-help groups have
become more familiar with possible features of stuttering that they may possess. Perhaps
similar benefits may result from individuals who attend self-help conferences during this
stage.
During the desensitization stage (Van Riper, 1973), the client learns to stay in the moment of
stuttering with a reduced level of fear. This is accomplished by understanding many of the
responses that the client has to his or her stuttering. In addition, voluntary stuttering is often
introduced, in which the clinician asks the client to follow the clinician in producing
effortless one- or two-unit repetitions and 1 to 2 second prolongations. This serves as a
demonstration of how one can stutter while maintaining control of his speech. Once fear is
reduced to a manageable level, the client will be able to see that they are not as helpless as
previously thought and that more options are available to them. This is the key in preparing
39
the client to vary surface features of stuttering in the next stage. The more desensitized a
client becomes, the more willing they may be to include surface behaviors in voluntary
stuttering to gain more experience in controlling those behaviors and/or varying their speech.
Grossman's (2008) study supports the notion that voluntary stuttering helps to desensitize
speakers to their emotional reactions to their own stuttering, but also proposes that it reduces
physical tension related to stuttering. Trichon et al. (2007) found that attendees of self-help
groups perceive the group as a safe environment where they do not feel judged when
stuttering or trying new speech skills. Self-help conferences may conceivably provide a
similar sense of safety for attendees to attempt to use the skills described in the
desensitization stage. Friends - The National Association of Young People Who Stutter
(Friends) has consistently included workshops at their annual conference to promote
voluntary stuttering and "advertising" the speakers' stutter or being open about stuttering in
public, to help children, teens and young adults to become desensitized to their stuttering
(Grossman, 2009; Schopick & Trichon, 2007; Trichon & Kubal, 2007a, 2007b; Walton,
2009). The NSA also offers workshops at their annual conferences which aim to desensitize
attendees to their stuttering (Gennuso & Koroll, 2009; Onofri, 2009, 2010), however, the
impact of attending these meetings is not fully documented.
In the variation stage (Van Riper, 1973) the client recognizes his ability to alter features of
stuttering while being in the moment of stuttering. This is accomplished with the clinician's
guidance and modeling. The client is asked to systematically vary, but not stop, specific
features of his stutter in a preplanned manner. For example, if the client says, "ah" a few
times before a feared word, the client learns to vary such features that include the rate of
40
speech, the number of repetitions, the muscular tension, or the vowel sound. Another
example is when the client is in a block, the client learns to recognize the stuttering moment
and slowly releases the vocal tension to allow airflow to continue for the next sound,
syllable, or word. The object of this stage is for the client to obtain some measure of control
to change the original, reflexive, observable stuttering behaviors. Once again, the safe
environment theme that emerged from the experiences of attendees of self-help groups
(Trichon et al., 2007) may possibly have some commonalities with the experiences of
attendees of self-help conferences. One self-help group attendee sharing his experience of
the self-help group referred to "the exchange of ideas and opportunity to practice [and] to not
be overly conscious of your speech" (p. 175). Perhaps self-help conferences bring about a
similar sense of safety which may potentially facilitate therapy by making it easier for a
client to change features of his speech as the stage requires. This adds to the need for a study
to explore the opinions of PWS who attend self-help conferences. Perhaps the experience of
those who attended self-help conferences may provide benefits that were not revealed in
studies of self-help groups for PWS.
In the approximation (Van Riper, 1973) or modification stage (Manning, 2010), the goal is
for the client to replace the out of control stuttering behaviors with behaviors that have less
tension (but not necessarily fluent). In the variation stage the client was able to explore
options, where as in the approximation or modification stage, the client is more focused on
changing reflexive behaviors with specific behaviors. It is important for the client and
clinician to realize the challenges of overcoming both physical behaviors and cognitive
responses to stuttering that have been developed and used for long periods of time. The
41
approximation or modification stage can be broken down into three major steps. These steps
are related to the point in time in which the client is able to vary his cognition and/or physical
behaviors. In the first step, called a cancellation (Van Riper, 1973) or post-event
modification (Manning, 2010), the client stops immediately and pauses to assess what
physiologically happened during the stuttering event. The client then reinitiates the stuttered
utterance with the goal of fluent stuttering. Even though not the goal, it may result in fluent
speech. The purpose of fluent stuttering is for the client to have speech that has some of the
characteristics of fluent speech including airflow, easy articulatory contact, continuous
voicing, and smooth transitional movements to the next sounds and syllables. In the second
step, called a pull-out (Van Riper, 1973) or a para-event modification (Manning, 2010), the
client will "slide out" of the habitual stutter by making physiological adjustments to stutter
more easily. The third and final step, the preparatory set (Van Riper, 1973) or pre-event
modification (Manning, 2010), the client anticipates habitual stuttering and uses preplanning
to initiate an easier form of stuttering. The preplanning focus on the speech mechanism is
similar to the strategies used in a fluency-shaping strategy, only the goal of a preparatory set
is fluent stuttering, whereas the goal of a fluency-shaping strategy is fluent speech.
Regardless of the goal, Trichon et al. (2007) suggests that attendees find self-help groups to
be a more conducive environment to practice new physical and cognitive behaviors. A
similar environment may potentially exist at larger self-help conferences. In addition,
encouragement and inspiration were a common theme of the self-help group experience.
Perhaps attendees of self-help conferences may have a similar experience that encourages or
inspires them, or something different altogether that assists them in carrying out the
42
necessary steps in the modification stage. This also adds to the need for a study to explore
the opinions of PWS who attend self-help conferences.
In the stabilization stage, the goal of the client is to transfer his new mindset about himself
and his speech abilities into daily life. The client accomplishes this by building up resilience
to the various communicative pressures, such as interruptions, time pressures, competition
for conversational turns, etc. The client can practice modification skills both in and out of
treatment situations. The client develops and refines his skills by moving along a hierarchy
of challenging situations. The clinician may assist the client to problem-solve feared
speaking situations by helping him to eliminate or reduce negative self-talk. Trichon et al.
(2007) found that self-help group attendees gain from being able to share their feelings about
stuttering and feeling a sense of community with other attendees. These two themes in
conjunction with any of the previously mentioned themes of the experiences of self-help
groups may also be similar to the experiences of attendees of self-help conferences and
potentially facilitate their new mindset of their communication abilities necessary in the
stabilization stage. Self-help activities such as groups and conferences may also provide
individuals with opportunities to potentially maintain therapeutic gains by attending annual
conferences or monthly groups. Research that explores the experience of self-help
conferences for PWS is needed to determine what meanings that attendees derive from their
experiences.
Research regarding the effectiveness of a stuttering modification approach to therapy has
been scarce. Blomgren et al. (2005) make the point that existing research on stuttering
43
modification (e.g. Boudreau & Jeffrey, 1973; Dalali & Sheehan, 1974; Fishman, 1937;
Gregory, 1972; Irwin, 1972; Prins, 1970; Prins & Nichols, 1974) is limited to unidimensional
assessments. As a result they carried out their own assessment of a stuttering modification
program. They assessed the Successful Stuttering Management Program (SSMP)
(Breitenfeldt & Lorenz, 1989), an intensive 3-week residential program that is based on a
combination of desensitization to stuttering, avoidance reduction therapy (Sheehan, 1970),
and Van Riper's (1973) stuttering modification techniques. The findings of their
multidimensional assessment were that there were statistically significant improvements
immediately after the program in the severity of the observable features of stuttering
(measured by the SSI-3) (G. D. Riley, 1994) and the three subscales of the PSI (Woolf,
1967), struggle, avoidance, and expectancy. However, at the 6-month posttreatment
assessment stuttering severity of the observable features and the struggle subscale of the PSI
(Woolf, 1967) were no longer statistically significant when compared to pretreatment scores.
In the meanwhile, the psychic anxiety and somatic anxiety subscales of the Multicomponent
Anxiety Inventory IV (MCAI-IV) (Schalling, Chronhom, Asber, & Espmark, 1973) which
were not statistically significant immediately after the program became statistically
significant with the additional 6-month posttreatment period. Under the domain of the
Karolinska Scales of Personality (KSP) (Schalling, Asberg, Edman, & Oreland, 1987) these
anxiety subscales are associated with particular characteristics. Psychic anxiety is associated
with such characteristics as: worry, anticipatory apprehension, slow recovery time following
stressful events, sensitivity, insecurity, and social anxiety, while somatic anxiety is associated
with such characteristics as: autonomic disturbances, vague distress and panic attacks, and
distractibility. Avoidance and expectancy subscales of the PSI (Woolf, 1967) did maintain
44
their statistical significance up to 6 months. It is possible that a follow-up study beyond 6
months may have revealed other changes.
The stuttering modification program, the SSMP, was successful in sustaining anxiety relief
for at least 6 months, but was ineffective in reducing the core stuttering behaviors, selfperceived struggle, muscular tension, and other affective domains such as locus of control
and mood, in the same for the same period of time. Blomgren et al. (2005) refers to the
SSMP as a "classic example" of a stuttering modification approach, but also advises that it is
one variant of many stuttering modification treatments. They also note that variables may
impact upon what would still be considered to be a stuttering modification program. Such
variables include group vs. individual treatment, amount of clinical hours, interactions with
clinicians, and interactions with other PWS. In addition, they note that participation in any
type of group stuttering intervention may be sufficient to bring about similar anxietyreducing results that the SSMP brought about. Self-help activities or a self-help conference
could bring about similar anxiety reducing effects that a stuttering modification program
brings. It is possible that self-help activities or self-help conferences may provide benefits to
a stuttering modification approach that a program could not sustain or provide at any point in
time. Further studies that evaluate treatment should include an assessment longer than 6
months post treatment since intrinsic features of stuttering appear to change over longer
periods of time.
The stuttering modification strategy aims to make stuttering easier both mentally and
physically to lessen the impact that stuttering has on an individual. It remains popular today
45
despite the lack of research about the approach. Blomgren et al. (2005) performed a
multidimensional assessment of one of the stuttering modification programs (SSMP). The
findings suggest that the program was only successful in sustaining anxiety relief for at least
6 months after completion. They also mentioned the possibilities that the anxiety reduction
may have been a result of belonging to a stuttering intervention group or that the results may
be specific to the SSMP and not to be generalized to the stuttering modification approach. It
is important to consider the possibility that despite the multidimensional approach, the
researchers may have failed to measure the most relevant variables to show the impact of the
program. Another possibility is that the researchers used tools that were either not sensitive
to the changes or measured behaviors when the differences may have been cognitive in
nature. It is also possible that the changes may take longer than 6 months after completion of
the program. Perhaps a qualitative methodology would have revealed better information
which was more detailed and offered a different perspective of the impact of the program.
This review of the stuttering modification approach, the multidimensional study about the
SSMP, and Van Riper's (1973) six stages of stuttering modification help to illustrate the
potential role that self-help conferences may have as it relates to a stuttering modification
approach. It shows the potential that: (a) self-help conferences may serve the same role of
helping to reduce anxiety related to stuttering; (b) some of the beneficial features experienced
by attendees of self-help groups may be similar to the experiences of attendees of self-help
conferences; furthermore, these features can potentially assist clients during various stages of
Van Riper's (1973) stuttering modification approach; and (c) self-help conferences may
potentially help clients from a stuttering modification approach in ways that have never been
46
previously explored. The impact of self-help conferences for PWS needs to be studied to
determine if they can assist PWS that have participated in a stuttering modification program.
2.3.3 Cognitive Restructuring
Another way to manage stuttering is through a cognitive restructuring approach. This
approach has been used in working with individuals with challenges of the human condition
such as depression, anxiety, and phobias (Beck, 1995, 2005; Ellis 1977; Luterman, 2001).
The focus of cognitive restructuring as applied to stuttering is to change the cognitive and
attitudinal responses to stuttering. Reactions associated with stuttering impact often have
negative effects on self-perception and negative perceptions of potential and actual speaking
situations. The therapy aims to achieve more productive thinking about the clients' ability to
verbally communicate. The clinician helps the client to build a more functional cognitive
foundation that result in positive differences in the client's perceived reality and problemsolving skills (Manning, 2010). There are several types of cognitive restructuring therapies
(Beck, 1995, 2005; Ellis 1977; Luterman, 2001) including Rational Emotive Behavioral
Therapy (REBT) (Ellis, 1977), Personal Construct Theory (Fransella, 1972; G. A. Kelly,
1955a, 1955b), and a Constructive-Narrative Approach (DiLollo, Neimeyer, & Manning,
2002). The following subsections will discuss these three popular forms of cognitive
restructuring that have been used in stuttering therapy. It will also discuss potential ways that
self-help activities or self-help conferences for PWS may serve as a useful supplement to
cognitive restructuring.
47
2.3.3.1 Rational Emotive Behavioral Therapy
In cognitive restructuring the clinician assists the client to identify and raise awareness of the
negative self-talk that affect his emotional response to challenging situations. The aim is to
help the client gain a more dynamic perspective to allow him to make better choices and have
better responses. In Rational Emotive Behavioral Therapy (REBT), Ellis (1977) discusses
one of the desirable outcomes for the client is to have "scientific thinking," or thinking that is
based on reasoning to behave more productively. The client who struggles to change his
belief from thinking that stuttering controls him or happens to him, rather than it being
something that he does, are less likely to succeed with this therapy (L. L. Emerick, 1988). In
other words, the client who feels he can control what happens to him or has an internal locus
of control (Rotter, 1954) is more likely to be successful in this form of therapy. Another
indicator of success in cognitive restructuring therapy is the clients' ability to abandon their
habitual, counter-productive cognitions that they believe to be the most accurate way to view
their situation, despite being able to recognize alternative views (Manning, 2010). Even
though this therapy continues to be used with PWS there is little evidence to support or refute
its success in the realm of stuttering. Perhaps the experience of self-help activities or selfhelp conferences for PWS would parallel some of the goals of REBT. However,
documentation in the research literature is still absent.
2.3.3.2 Personal Construct Theory
Personal Construct Theory (PCT) developed by G. A. Kelly (1955a, b) is another approach to
cognitive restructuring. He built the theory on the foundation that:
48
All of our present interpretation of the universe are subject to revision and
replacement.. .we take the stand that there are always alternative constructions
available to choose among in dealing with the world. No one needs to paint himself
into a corner; no one needs to be completely hemmed in by circumstances; no one
needs to be the victim of his biography, (p. 15)
In other words, PCT is based-on the client's ability to change his viewpoints of himself and
the social world around him. In the realm of stuttering, PCT aims to help the client to
increase the meaningfulness of his fluent speaker role (Fransella, 1972). It has been
suggested that PWS prefer to draw meaning from their familiar role as being a "stutterer"
because it fits how they understand their social environment and allows them to be better
predictors of their surroundings (Dalton, 1983; Fransella, 1972). In a treatment study of 16
PWS, Fransella (1972) used "controlled elaboration," or behavioral experiments utilizing
repertory and implications grids to systematically explore various constructs including social
surroundings, sense of self, and fluent experiences. Treatment focused on helping
participants to increase the meaningfulness of fluent experiences. No direct attempt was
made to change the observable features of the participants' speech. The results showed that
as participants constructed more meaning from their fluent experiences and increased their
fluent speaker role, stuttering decreased. In a 3-month and 1 year follow-up, 8 of the 9
participants who participated showed that they had maintained or improved fluency, while
one participant regressed. Fransella (2003) determined that the most "crucial question" to
ask in the behavioral experiments to help clients make sense of their fluency is, "Did you
predict you would be fluent?" As awareness of fluency increases and predictions of fluency
increases, clients associate fluency with themselves rather than as just having been lucky to
49
be fluent. Clients of this therapy may benefit from attending self-help activities for PWS.
Attendees of self-help groups were found to receive such benefits including: (a) safe
environment, (b) sharing feelings, (c) sense of community, (d) encouragement/inspiration,
and (e) exposure to other PWS (Trichon et al., 2007). These findings contribute to the social
nature of the event and may help attendees to be better communicators and view themselves
as better communicators too. Perhaps, self-help conferences for PWS may benefit attendees
in a similar way or may even benefit clients in ways that self-help groups could not.
2.3.3.3 Constructive-Narrative Approach
A constructive-narrative approach is another form of cognitive restructuring for PWS. This
approach is based on the idea that people understand their lives through their "storying" of
lived experience (Madigan & Goldner, 1998; Winslade & Monk, 1999). In this approach
"language" is not just the means by which experiences are described, instead it is part of an
interaction in which thoughts and feelings influence words and words are used to describe
thoughts and feeling of the human experience (Drewery & Winslade, 1997). This echoes
Vygotsky's (1962) views and Bruner's (1991) philosophy that an individual's sense of reality
is constructed in the mind and is mediated through "cultural products, like language and other
symbolic systems" (p. 3). He specifically focuses on the idea of narrative as one of these
cultural products. Like Fransella's (1972) controlled elaboration method, the approach is
aimed to help clients to construe themselves as competent speakers and communicators
(DiLollo et al., 2002; DiLollo, 2006; Manning & DiLollo, 2007).
50
The basis of the theory revolves around the assumption that narratives from PWS can exhibit
a lack of fulfillment and overtake people's view of themselves. Some "dominant narratives"
can arise from stereotypes or language used in society, furthering people's negative dominant
story (DiLollo et al., 2002). This creates a self-identity of being "disordered" or "deviant."
These self-identities can impact the way people view the world, their role in the world, and
the reactions of others (Gergen, 1994; Raskin & Lewandowski, 2000; Winslade & L. Smith,
1997). White and Epston's (1990) framework for engaging clients in conversation to
promote changes in clients' personal narratives include three stages: (1) externalizing the
problem; (2) mapping the influence of the problem on the person's life and relationships; and
(3) mapping the influence of the person in the life of the problem.
The goal of externalizing the problem is to help the client to view stuttering as a separate
entity and not a problem that defines him. To do this, the clinician asks the client to tell his
story. This gives both, client and clinician, opportunity to gain understanding about his
background, his self-identity, and his relationship with stuttering. By the clinician referring
to stuttering as an entity that is separate from the client, it encourages the client to do the
same instead of continuing his counterproductive thinking that he is "a problem-person.'The
goal of mapping the influence of the problem on the person's life and relationships is to learn
more about the client's "problem-saturated story" (White & Epston, 1990) and learn about
the language he uses when he discusses the problem. Narratives often include talk about
suffering, helplessness, shame, fear, and avoidance as a result of stuttering (Corcoran & M.
Stewart, 1998). Broad mapping will provide opportunity for the client to talk about "unique
outcomes" or situations that contradict his counterproductive, dominant story. A clinician
51
might ask a client, "When did Stuttering first enter your life? Did it creep up on you slowly,
or has it always been around?" In the last stage, mapping the influence of the person in the
life of the problem, the clinician helps the client to continue the process of deconstructing
negative dominant narratives, while reconstructing an alternate story that encourages a less
restrictive lifestyle. In this stage, the clinician highlights unique outcomes or "sparkling
moments" (Winslade & Monk, 1999) that contradict the client's story of suffering and
provides opportunity to rewrite his story. Epston and White (1999) and White and Epston
(1990) have developed questions for a constructivist-narrative approach, that have been
categorized into six steps along the deconstruction and reconstruction process. DiLollo and
Neimeyer (2008) have modified questions so that they apply toward PWS. Table 2 lists,
describes, and gives examples for the six steps for mapping the influence of the person in the
life of the problem in the realm of stuttering
52
Table 2. Deconstruction and Reconstruction Process - Constructivist-Narrative
Approach (3rd stage)
Steps - purpose
Sample Question
Unique Outcome - acknowledge actions that
Have there been times when you have been
able to overcome Stuttering's hold over
contradict the dominant story
your speech?
How might you stand up to Stuttering in
Unique Account - with the use of unique
the future and refuse its requirements of
outcomes, make sense of exceptions to the
you?
dominant story to develop a preferred story
By freeing yourself from Stuttering's hold
Unique Redescription - reflect upon and
over you, do you think in any way that you
develop meaning from unique accounts
are becoming less of 'a stutterer'?
Unique Possibility - speculate about various
What will the future be like without
personal and relation alternatives derived
Stuttering's influence dominating your
from unique accounts and redescriptions.
life?
Unique Circulation - consider the inclusion of Of the significant people in your life, who
others in the developing story to anchor and
do you anticipate would have difficulty
accepting the new life you have chose, free
continue development of the story
from Stuttering's influence?
Questions that Historicize Unique Outcomes - Of the people who knew you growing up,
develop the emerging story, establish a
who would have been most likely to
memorable history and increase the likelihood predict that you would break free from
of them carrying it forward
Stuttering's influence?
Adapted from Epston and White (1999); White and Epston (1990); DiLollo and Neimeyer
(2008).
In summary, the constructivist-narrative approach offers an alternative method to Fransella's
"controlled elaboration" for learning about the client and working with the client to help him
to restructure cognitions about stuttering and his role as a speaker by "increasing the
meaningfulness of the fluent speaker role for the speaker." The broader aim is to help clients
construe themselves as competent speakers and communicators (DiLollo et al, 2002;
DiLollo, 2006; Manning & DiLollo, 2007). Based on Trichon et al. (2007) study of the
experience of self-help groups, one can conclude that attendees who discover self-help
groups to be a safe-environment where they are encouraged or inspired, share their feelings,
and have a sense of community, may also find self-help groups to maintain a social
environment that is conducive to building confidence as good communicators, regardless of
53
their fluency. If this were true of self-help conferences for PWS, perhaps they may benefit
clients as a supplement to a constructive-narrative approach to therapy.
As illustrated by REBT, PCT, and the constructive-narrative therapies above, cognitive
restructuring therapy is another approach that may help PWS change the way they think
about: (a) themselves, (b) stuttering, and (c) their social environment. Outcomes of cognitive
restructuring have included reductions of observable features of stuttering in both the short
and long term (Fransella, 1972); however, the outcomes that are most directly related to
cognitive restructuring therapy include changes in clients' self-perception as competent
communicators (with or without stuttering), clients' stuttering with less struggle, and clients'
reduced fear of speaking. These overviews of cognitive therapy approaches provide detail
about the variety of options within cognitive restructuring therapy, but they also invite the
reader to think about the potential of self-help activities or self-help conferences for PWS and
the role it my play for clients who are going through or who have gone through this type of
therapy.
Further support for cognitive restructuring as a viable approach to treating developmental
stuttering in adults is presented in Prins and R. Ingham's (2009) proposal regarding the
assessment of the cognitive aspect of stuttering. They suggest that cognitive behavior theory
may provide a useful framework for additional treatment efficacy studies for both fluency
shaping and stuttering modification approaches and support the importance of considering
the cognitive aspect in assessing stuttering. They also found research-based evidence to
support both fluency shaping and stuttering modification approaches; however they found
54
that the evidence to support each of the treatment approaches to view successful outcomes
differently from each other. For example, support for fluency shaping approaches usually
comes from outcome research that measures the observable features of stuttering. On the
other hand, support for stuttering modification includes research that examines changes in
cognition. In addition they found that neither fluency shaping nor stuttering modification
approaches can claim "uniform success" with adults in alleviating both observable and
intrinsic features of the disorder. It should be noted that both approaches use and benefit
from self-management strategies and observation of another's (or one's own) performance,
also known as modeling. Regardless of any one treatment approach, one can argue that selfhelp conferences for PWS are favorable to: learning self-management, gaining exposure to
individuals who model treatment skills from multiple approaches, and restructuring
cognitions regarding stuttering.
This section on treatment strategies has shown the similarities and differences of various
therapy approaches for PWS, along with the available research to support or refute them. It
also brought to light that controlled, experimental research methods may not be the best
methodology to investigate some of the more complex aspects of the disorder, and
furthermore suggested that a qualitative approach may be more appropriate. Finally, this
section discussed ways in which self-help activities or self-help conferences can potentially
play a role in various intervention strategies. The following section will discuss various
topics that fit into the realm of stuttering management.
55
2.4 Stuttering Management
The previous section reviewed therapy strategies and how they may relate to self-help
activities. This section on stuttering management, however, goes beyond therapy and
discusses various topics that are related to what else may influence clinical outcomes or longterm success in general. Such topics include issues related to the clinician such as training,
clinical tendencies, relationship with PWS, their view of "successful" therapy, and what
contributes to success. Stuttering management is how one goes about dealing with the
variety of challenges that the disorder presents. Stuttering management can take on many
forms including the decision to begin therapy with a speech-language pathologist, beginning
counseling, seeking advice from other individuals, and/or attending self-help activities for
PWS. This section will review these topics and consider how these topics may relate to selfhelp activities or self-help conferences for PWS.
2.4.1 Clinicians and Other PWS
2.4.1.1 Deficiencies in Clinical Training
PWS often seek the clinical services of an SLP. Clients rely on the knowledge and guidance
of clinicians to achieve a successful outcome. Their knowledge and guidance are relied upon
throughout the therapeutic process to help clients to achieve a successful outcome. These
clinicians are governed and certified by ASHA. ASHA's (2003, 2010a) first principle in
their Code of Ethics relates to the clinicians' "responsibility to hold paramount the welfare of
persons they serve professionally." Within this principle it is stated that clinicians "shall
provide all services competently" and "shall use every resource, including referral when
appropriate, to ensure that high-quality service is provided" (ASHA, 2003, 2010a).
56
Starkweather and Givens-Ackerman (1997) make the point that this first principle became
especially important in protecting PWS from untrained practitioners in 1993 when ASHA's
Council on Professional Standards (COPS) revised their standards of training. The revisions
allowed students to shift clinical training hours from specific disorders such as stuttering to
other speech disorders. This made it possible for students to graduate and become SLPs
without ever having taken a class about stuttering and/or without ever having seen a client
who stutters. These revisions were intended to make training programs "more flexible" in
meeting ASHA's standards (Starkweather & Givens-Ackerman, 1997; Yaruss & Quesal,
2002). In a survey a year after this change, it was found that two-thirds of the responding
colleges and universities that had speech-language pathology programs had reduced either
the required academic coursework or the clinical practicum in the area of stuttering
(Starkweather & Bishop, 1994), increasing the likelihood of exposing PWS to SLPs who are
untrained or undertrained in the area of stuttering (Starkweather & Givens-Ackerman, 1997).
Gaps in preparedness are also reflected by the data which summarizes the opinions of SLPs
in which they revealed that they least preferred working with PWS than any other disorder
group (Sommers & Caruso, 1995). These deficiencies in the knowledge-base and training of
clinicians in working with PWS have also been noted in other studies as well (ASHA
Omnibus study, 2001; E. B. Cooper & C. S. Cooper, 1996).
These deficiencies have resulted in the formation and/or strengthening of professional and
consumer organizations to better serve PWS (Starkweather & Givens-Ackerman, 1997). As
part of this effort, there has been a call to form a stronger research partnership between
clinicians, researchers, and "consumer" clients who stutter, to gain more knowledge and for
57
better training to better serve PWS (Reeves, 2006; Yaruss & Quesal, 2004a; Yaruss &
Reeves, 2002; Yaruss, Quesal, Tellis et al., 2001). This effort however, was not the first of
its kind. One noted effort took place in 1986 when the National Alliance on Stuttering was
formed to encourage cooperative activities between professionals and the self-help
community (E. B. Cooper, 1986). It brought together leaders of organizations including the
Stuttering Foundation of America (SFA), the National Stuttering Project (NSP), now known
as the National Stuttering Association (NSA), Speak Easy International, and the National
Council on Stuttering. This particular effort did not receive enough support to succeed at the
time (J. Ahlbach, personal communication, February 12, 2010; E. B. Cooper, personal
communication, February 12, 2010; J. Fraser, personal communication, February 12, 2010).
A decade later, in 1996, the joint efforts of ASH A, NSA, and SFA had a different result. The
"Year of the Child Who Stutters" program was successful in bringing together professional
and self-help communities to learn about stuttering while helping children who stutter, at
various workshops throughout the country (Reeves, 2006). The NSA continued to bridge the
gap when they created a Research Committee (NSARC) to support stuttering research and
facilitate the interaction between both professional and stuttering communities in 1999. A
few years later in 2002, with ASHA's Consumer Affairs Division's support, they hosted the
first joint symposium for scientists and consumers to among other goals, identify research
needs and facilitate collaboration. Many would agree that a partnership between
professionals and PWS is a logical one considering that consumers want to have more input
into research and researchers have a need for research participants (Yaruss & Reeves, 2002).
This trend of professionals and consumers collaborating has been evident in the number of
professionals who attend consumer-based conferences and the number of consumers who
58
attend professional conferences (Yaruss & Reeves, 2002). Perhaps more SLPs are attending
self-help conferences to learn from individuals who stutter and what they have to say about
managing their stuttering. It could be argued that PWS are one of the most useful resources
when it comes to learning about stuttering management, however, few of these accounts are
completed in a systematic fashion . Personal accounts from pioneers, such as Charles Van
Riper, Malcolm Fraser, and Joseph Sheehan, have all helped to shape the way that stuttering
is managed today. However, studies that utilize the personal accounts of PWS to learn about
the experiences of those who attended a self-help conference for PWS may offer valuable
insights into understanding how people who stutter get better.
2.4.1.2 Clinicians' Therapeutic Approach Tendencies
Professionals who have had a personal history of stuttering also offer another perspective
when it comes to therapy approaches. Interestingly enough, research has shown that
clinicians with a history of stuttering prefer a stuttering modification approach for therapy,
while clinicians who have not stuttered prefer a fluency shaping approach to therapy
(McFarlane & L. Goldberg, 1987; Ratner & Healey, 1999). This lends support to notion that
clinicians with a history of stuttering recognize and treat stuttering as a dynamic disorder
with intrinsic features, whereas clinicians who do not stutter are unaware or do not
emphasize the treatment of such features. Perhaps, the experience of stuttering has led these
clinicians to focus on intrinsic features. This would lend more support for the view that
intrinsic features should be treated and not ignored. Even though the data compares
clinicians with a history of stuttering to clinicians without a history of stuttering, it is possible
that the more potent factor in the decision to treat the intrinsic features may lie in the amount
59
of experience a clinician has with stuttering, both personally and professionally. This leads
to the possibility that ASHA Board Recognized Specialists in Fluency Disorders (BRS-FD)
whether they do or do not have a history of stuttering, like the clinicians with a history of
stuttering in the previous research, have the same tendencies to take a more holistic treatment
approach. BRS-FDs currently go through a process which consists of mentoring, continuing
education, creating a portfolio, and guided clinical practice which includes at least 100 hours
of observation and clinical activity specifically with PWS (Specialty Board on Fluency
Disorders, 2010). These experiences with stuttering may conceivably guide clinicians to
treat the intrinsic features rather than ignore them. This would help explain survey results
that showed attitudinal differences between BRS-FDs and generalists (St. Louis, Tellis,
Tuanquin, Wolfenden, & Nicholson, 2004). Two survey items in particular highlighted the
attitudinal differences between the two. One item stated, "People who stutter can
communicate effectively," in which BRS-FDs strongly agreed (+91 on a scale of-100 to
+100), while generalists moderately agreed (+59). While another section asked, "Who
should help a person who stutters?" one of the items listed was "other stutterers," in which
BRS-FDs strongly agreed (+82), while generalists barely agreed (+14). These results not
only suggest that generalists may be more focused on fluency then overall communication, it
also suggests that generalists are not as likely to recommend any self-help activities to their
clients who stutter.
2.4.1.3 Relationship Between Professional and Self-Help Communities
Clinicians with a narrow view of stuttering are not only less likely to recommend self-help
activities to clients who stutter, they are also less likely to attend a self-help activity. As a
60
result, the SLP may close themselves off to potential learning opportunities that can help the
clinician better serve current and future clients. Furthermore, it has been reported that the
professional community of clinicians either lack enthusiasm for self-help activities or even
have a tendency to dissuade clients from participating in them (Bloom & Cooperman, 1999;
E. B. Cooper, 1986; Jezer, 1997; Ramig, 1993; Reeves, 2006; Silverman, 1992). E. B.
Cooper suspects that clinicians feel this way because they fail to recognize the "need" for
continued support for their clients to maintain their therapeutic gains, they are uncomfortable
that PWS appear to benefit from simply associating with other PWS, and they may feel that
former clients' seeking self-help activities is an indication of failure of their services.
Moreover, clients have reported that clinicians have told them that interaction with other
PWS from other therapies may cause them to blend therapies techniques and that they may
lose fluency gains (Bloom & Cooperman, 1999). Other instances include SLPs who have
attended some support group meetings that voiced their opinion that it was difficult to
observe severe stutterers that "do not take constructive action" (Gregory, 1997) and that the
proclamation "it's OK to stutter" reinforced the assumption of some SLPs that self-help
groups were "anti-therapy" and "anti-SLP" (Reeves, 2006). This divide between some
professionals and the self-help community, also has its origins in the 1960s when self-help
groups of all types were stigmatized as "strange subcultures of deviants," and in the 1970's
when anti-professionalism was the preeminent feature. Self-help at that time was considered
to be an alternative to healthcare (Borkman, 1999; Damen, Mortelmans, & Van Hove, 2000).
By the late 1980's relations between some professionals and the self-help community for
PWS had started to shift. More professionals were starting to acknowledge the potential
benefits of self-help groups and how clinicians need to get personally involved as
61
participants to learn from PWS (Diggs, 1990; Knepflar, 1987). Similarly, Kelleher (1994)
suggested that self-help may be supplementary to professional care and stated that self-help
groups "are groups which place a value on experiential knowledge, thus implicitly
challenging the authority of professional health care workers to define what it is to have a
particular condition and how it should be managed" (p.l 11).
One interpretation could be that PWS are more likely to understand the intrinsic problems
associated with stuttering. The inclusion of PWS to understand more about stuttering has
generated new directions in research including the experiences of stuttering (Corcoran & M.
Stewart, 1998) and factors involved in successful stuttering management (Plexico, Manning,
& DiLollo, 2005). One avenue of investigation can examine the potential role of self-help
activities for PWS. The "helping" ability of other PWS, who are not clinicians, is debatable
and has much to do with the question, "What one means by help?" Strupp and Hadley
(1979) found that therapeutic change was more closely associated with listeners having
"expressions of caring and genuine interest," rather than technical training. Therefore, it
seems logical to explore the possibility that individuals who stutter may benefit from talking
to other PWS.
This section on clinicians and other PWS presents evidence that show deficiencies in the
training of certified SLPs working with PWS, the tendency of clinicians who had a personal
history of stuttering to use a therapy strategy which include treating the intrinsic features of
stuttering, and relations between professionals and the self-help community of PWS. This
62
evidence supports the need for an in-depth study that explores the role of self-help activities
in the management of stuttering.
2.4.2 Management vs. Recovery
When referring to the word stuttering, clarification is needed to determine if one means just
the observable features or if one means the broader definition which include the intrinsic
features of stuttering. Also within the realm of stuttering, there is confusion with the terms
management and recovery. Despite their differences in meaning, people try to use them
interchangeably. This subsection explains these differences and how this distinction is
important when looking at the possible role that self-help conferences play in helping PWS.
The word recovery is a term that at times has been overgeneralized into the domain of what
is considered to be the broader category of successful management. The distinction between
the two terms is an important one for stuttering (Manning, 2010). Plexico et al. (2005) offers
clarification. They suggest that the term successful management implies a continued effort to
maintain gains, while recovery is based solely on the absence of extrinsic stuttering behavior.
This ignores any intrinsic features of the disorder. In addition, they explain that the word
recovery refers to the removal of a pathological problem to a symptom-free, cure within a
medical model. In other words, within the domain of stuttering, successful management
refers to the improvement of overall communication including improved fluency (but not
necessarily more), whereas recovery only refers to fluency or the elimination of the overt
features of stuttering.
63
Successful management may be exemplified in such ways which include the minimization of
overt features of stuttering such as less physical struggle, shorter durations of stuttering
moments, or less frequency. However, successful management can also be exemplified
through improvements in the intrinsic features of the disorder. Examples include an increase
in participation of feared speaking situations, an increase in interactions with individuals, and
a decrease in avoidances of particular people and/or situations. It should be noted that the
successes of being a better communicator may ironically result in more observable stuttering
(Manning & DiLollo, 2007). This potential increase in stuttering that is observable may
result from an increase in conversational opportunities, the perceived higher degree of
difficulty of the conversational situations previously avoided, or a combination of both.
Another explanation of more observable stuttering in the context of successful management
is the use of voluntary stuttering. This technique requires an individual to stutter on purpose
in a controlled manner. Grossman (2008) proposes that voluntary stuttering not only
alleviates the fear of stuttering by desensitizing speakers to their emotional reactions to their
own stuttering, but also reduces physical tension related to stuttering. Voluntary stuttering is
typically used in a stuttering modification approach to therapy and was popularized by
Charles Van Riper (1973), Wendell Johnson (1939), and Joseph Sheehan (1970).
Researchers claim that attendees of self-help groups for PWS experience improvements in
the intrinsic features of the disorder (Krauss-Lehrman & Reeves, 1989; Starkweather &
Givens-Ackerman, 1997; Trichon, 2007; Trichon et al., 2007). Starkweather and GivensAckerman (1997) take this a step further and claim that improvements in the intrinsic
features or feeling "freer" often results in "dramatically" improved speech, but not the
64
elimination of stuttering. These results would not be consistent with the recovery paradigm
and therefore, self-help groups would be better characterized within a stuttering management
paradigm. This differentiation between successful management and recovery is important
when considering the role of self-help activities for PWS since they do not specifically target
the elimination of the observable features of stuttering.
It is important to note that some studies within the literature include people who still have
observable features of stuttering in the "recovered" population, but are consider to be
recovered because the participants do not find their stutter to be problematic (Finn, Howard,
& Kubala, 2005). In addition, it should be noted that Finn's (1997) study about people who
have had "unassisted" recovery from stuttering is based on criterion that include that "the
speaker claimed recovery occurred without direct assistance of treatment." These points
open the possibility that people who have recovered from stuttering may still benefit from or
may have already benefited from individuals who do not provide professional treatment for
stuttering, including other PWS. This is another reason why the role of self-help activities in
stuttering management should be further explored.
2.4.3 Contributions to Success
Discussion about successful management therapy often focuses on the characteristics or
abilities of the clinician, or utilizes the perspective of the clinician to define successful
therapy. However, researchers make the argument that discussion about successful stuttering
management needs to include the viewpoints of the individuals who stutter (Plexico et al.,
65
2005; Tetnowski, Scaler Scott, & J. S. Damico, 2007; Osborne, Tetnowski, Trichon, & Steck,
2007).
Plexico et al. (2005) conducted a qualitative study of seven adults who have successfully
managed their stuttering. Transcription and analysis of the semi-structured interviews with
the participants not only revealed the uniqueness of each of the participants' journey, it also
gave rise to recurring themes in three different stages of progress in the successful
management of stuttering. The primary focus of the study was on the transition from
unsuccessful to successful management of stuttering, but the researchers found it important
to see these results in the context of the themes related to when stuttering therapy was
unsuccessfully managed (before) and the current situation where stuttering continues to be
successfully managed (after). It is important to review this study to look at the potential role
that self-help activities may have in the transition and continuation of successful stuttering
management. Table 3 reveals the thematic findings of each of the three stages.
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Table 3. Recurring Themes from the Three Temporal Stages of Successful Stuttering
Management
Stuttering therapy
Transition from
Current situation where
unsuccessfully managed
unsuccessful to successful
stuttering continues to
management of stuttering
be successfully managed
Gradual awareness
Support from others
Continued management
Negative reactions of
listeners
Successful therapy
Self-acceptance and fear
reduction
Negative emotions
Self therapy and behavioral
change
Unrestricted interactions
Restrictive lifestyle
Cognitive change
Sense of freedom
Avoidance
Utilization of personal
experiences
Optimism
Inadequate therapy
High levels of
motivation/determination
Adapted from Plexico et al. (2005).
To further illustrate some of the themes in the transition from unsuccessful to successful
management of stuttering, examples of a few of the themes and subthemes are as followed:
the theme support from others include subthemes such as professional counseling, support
groups, family, and friends; the theme self-therapy and behavioral change include selfdisclosure as a subtheme; and the theme cognitive change include such subthemes as risk
taking, reduction in fear of failure, taking responsibility for speech, learn more about self as
speaker, and positive attitude. These themes and subthemes are similar to some of the
experiences of attendees of self-help groups for PWS (Trichon et al., 2007) and may possibly
hold true of PWS who attend self-help conferences.
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Successful therapy is another theme in the category, transition to successful management of
stuttering. Manning (2010) discusses the importance of the right clinician. He states, "It is
the effective clinicians who are able to select appropriate therapeutic strategies....The best
clinicians are uncommonly effective in understanding, encouraging, supporting, and guiding
their clients along the path of treatment" (p. 4). This highlights the importance of choosing a
clinician that is cognizant of finding the right strategy for each individual client. Tetnowski
et al. (2007) differentiates between clinicians who use "an approach to therapy" versus those
who use one specific "therapy approach." The clinician that applies "an approach to
therapy" or "client-centered" therapy (Rogers, 1946) places much value on the client's
background, history, beliefs, goals, and the results of their assessment to determine the best
course of therapy for that particular client. The clinician that applies a specific "therapy
approach" uses the same type of therapy for the client regardless of, or with less value placed
on, the client's individual information. This less flexible approach can be costly in terms of
time, wasted effort, and money. A clinician that uses a client-centered approach encourages
the client to share more information about himself. Clinicians may find that some clients are
willing to share, while others are not. Self-help groups can provide an environment that is
conducive to sharing information (Trichon et al., 2007) perhaps even more so than a clinical
setting since many stuttering related issues are addressed. Perhaps this is also true of selfhelp conferences for PWS. Self-help activities may also present clients with the
opportunities to have similar experiences as the participants in the successful management
study. For example, self-help activities may provide speaking opportunities in an
environment that feels safe, possibly increasing positive personal experiences which can be
utilized (theme) to make cognitive changes (theme), and possibly reconstruct a more positive
68
self-image. Self-help activities may also help clients to become less dependent on the
clinician to talk about issues related to their speech. Osborne et al, (2007) study of a clinical
relationship of an adult who stutters for an 18 year period, highlights the importance of
empowering the client and helping them to achieve greater clinical and communicative
independence. This autonomy provides a greater likelihood of continued management
(theme) and a sense of freedom (theme) to act or not act, on his own behalf. The Osborne et
al. (2007) study supports some of the same themes that emerged from the Plexico et al.
(2005) study. High levels of motivation and determination (theme) by the client are a
necessity in a successful shift of clinical responsibility to the client. Similarly,
encouragement and inspiration are one of the themes experienced in attending self-help
groups. Conceivably, self-help conferences for PWS can play a similar role in the transition
and continuation of successful stuttering management.
As the Plexico et al. (2005) study shows, there are various factors that can contribute to
successful management of stuttering. These factors can be part of the transition to or
continuation of successful management of stuttering. These insights were gained by studying
the verbalized perspectives of PWS who have had a variety of experiences that led to their
successful management of stuttering. These experiences that have been developed into
themes share some similarities that self-help groups have been reported to provide (Trichon
et al., 2007). There lies the possibility that attending self-help conferences for PWS may
afford PWS similar experiences to help them to achieve long-term stuttering management.
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This section has shown how stuttering management can take on many forms including
therapy with a professional and/or reaching out to others who are supportive including other
PWS. Clinicians may or may not have specialized training in working with PWS, but
regardless they can have serious influences on how clients define and go about achieving a
successful outcome. It is important for PWS and clinicians to understand that stuttering
management is a more realistic goal than recovery for adults who stutter and that it is an
ongoing process. There are several factors that contribute to the transition to, and
continuation of successful stuttering management. Self-help conferences for PWS may
provide opportunities for PWS to be exposed to some of the contributing factors of
successful management as described by Plexico et al. (2005). This pertinent information was
based on interviews with PWS who have experienced successful management of stuttering.
This is a prime example of how qualitative methodologies can contribute to the body of
knowledge of stuttering in ways that experimental research cannot. The next section will
review the literature on self-help organizations for PWS to gain a better understanding of its
potential utility in the management of stuttering.
2.5 Self-Help Organizations for PWS
Self-help groups and organizations for people who stutter (PWS) exist throughout many
countries throughout the world. The number of such organizations and their memberships
has been on the rise (Krall, 2000a; Ramig, 1993; Yaruss, Quesal, Reeves et al., 2002)
including organizations in the U.S., Canada, Australia, Japan, and various countries in Asia,
Africa, South America, and at least 14 European countries (Bloodstein & Ratner, 2008; ISA,
n.d.o). There is no evidence to suggest a change in this rising trend in the near future. One
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can speculate that this rising trend of self-help organizations and members within the
worldwide stuttering community is due in part to the benefits received and/or increased
access to information due to technology (e.g. internet), which has "added a new dimension to
the outlook for PWS" (Bloodstein & Ratner, 2008). In the United States, self-help
organizations for PWS that are widely recognized are the National Stuttering Association and
Friends - The National Association of Young People Who Stutter (Friends). These
organizations provide: information on their websites, mail order materials (e.g. DVDs,
brochures, posters, and books), online forums to communicate with other members, and inperson self-help activities. Such self-help activities may include local meetings (usually
monthly or bi-monthly), regional workshops, and annual conferences. This section will
review the literature on self-help related topics including: self-help terminology, the history
of self-help in the United States, self-help organizations for PWS, various self-help activities
(and forums), and research on outcomes of self-help activities for PWS.
2.5.1 Self-Help Terminology
One of the most cited definitions of self-help groups is the one described by Katz and Bender
(1976). They state:
Self-help groups are voluntary, small group structures for mutual aid and the
accomplishment of a special purpose. They are usually formed by peers who have
come together for mutual assistance in satisfying a common need, overcoming a
common handicap or life-disrupting problem and bringing about desired social and/or
personal change. The initiators and members of such groups perceive that their needs
are not, or cannot be, met by or through existing social institutions. Self-help groups
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emphasize face-to-face social interactions and the assumption of personal
responsibility by members. They often provide material assistance, as well as
emotional support; they are frequently 'cause'-oriented, and promulgate an ideology
or values through which members may attain an ideology or values through which
members may attain an enhanced sense of personal identity, (p. 9)
A. Richardson and Goodman (1983) offer a more concise definition of self-help groups.
They define self-help groups as "groups of people who feel they have a common problem
and have joined together to do something about it."
Even though these definitions refer to "groups," the term self-help in this context generally
refers to a gathering of people who congregate for the purposes of giving and receiving help.
In addition to self-help groups, other terms used in this manuscript include self-help
activities, self-help organizations, self-help workshops, and self-help conferences. On the
other hand, the term self-help can also refer to individuals who are proactive about bettering
him- or herself, but not necessarily through the interaction of other self-helpers. The primary
source of empowerment for many of these individuals is through educational resources which
include books, DVDs/videos, and the internet. However, the use of self-help in this
manuscript refers specifically to the self-helpers that interact with other self-helpers.
Despite this clarification there still exists a variety of terms within the professional literature
that have been used to describe groups of people who share a common challenge that
assemble for the sake of supporting each other. In addition to self-help groups, other terms
include support groups and mutual-aid groups. The different uses of these terms can cause
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confusion. To clarify the terminology some researchers have made distinctions between
these words. Borkman (1999) highlights the confusion caused by the generic use of the term
support group and how it blurs the differences between self-help/mutual aid groups and
professionally run support groups. Six criteria of authority and ownership of the group are
used to decipher the groups' classification. Generally speaking, she differentiates the terms
according to who manages the groups. She deems that groups managed by professionals to
be support groups and groups not directly managed by professionals to be self-help groups or
mutual-aid groups. She further differentiates self-help groups as a subcategory of mutual-aid
groups and explains that the term self-help specifically refers to "an individual's taking
action to help him- or herself, often drawing on latent internal resources and healing powers
with the context of his or her lived experience with an issue or predicament." In Yaruss,
Quesal, and Reeves' (2007) terminology scheme, self-help groups and mutual-aid groups are
used synonymously. They do not distinguish between groups that simply "involve"
professionals, but do distinguish between groups that were created or "originated by
professionals," such as therapy groups or maintenance groups associated with a particular
method of treatment. A literal interpretation of this would be that therapy groups or
maintenance groups are examples of groups that may be created by professionals, but any
group created by a professional would be not be considered to be a "self-help group."
However, the investigator believes that groups specifically created by professionals which
are associated with a particular method of treatment, to be distinguished from self-help
groups. This allows for the possibility that professionals can create groups that are not
associated with a particular kind of therapy, including groups that are affiliated with a selfhelp organization (e.g. National Stuttering Association).
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Self-help groups have also been described as either having a primary focus on social function
with participants being encouraged to talk about the challenges associated with stuttering, or
fluency maintenance in which fellow members constructively critique each other's use of
speech skills (Carlisle, 1987; Ramig, 1993). The term practice groups have been loosely
used to describe groups that practice one brand of therapy or multiple brands of therapies,
and have been led by professionals and non-professionals. According to the terminology
conventions used by Yaruss, Quesal, and Reeves (2007), practice groups may fall into the
realm of self-help/mutual-aid groups or maintenance groups. Hunt (1987) resonates how it is
sometimes difficult to distinguish between self-help groups and other types of groups for
PWS. This manuscript will use terminology conventions used by Yaruss, Quesal, and
Reeves (2007), with the following exceptions: (a) groups created by professionals that are not
associated with a particular therapy may be considered to be a self-help group, and (b) for the
purposes of simplicity only the term self-help will be used instead of both self-help and
mutual-aid.
The differentiation of the term self-help from the other terms is sufficiently explained for the
scope of this study; however it is important to note that Borkman's (1999) distinction
between support groups and self-help groups do not account for all possible group scenarios.
As a result, Borkman's (1999) terms may be considered to be an oversimplification of
terminology that overly rely on the professional (or non-professional) status of the manager
or creator of the group, to classify the type of group and/or meeting. For example, groups
that are managed by professionals who stutter, under Borkman's (1999) terminology, would
be labeled as a support group when they may be more consistent with how other self-help
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groups operate. Another example of a potential mislabeling exists with groups that are
managed or created by professionals (who do not stutter), but act on behalf of a self-help
organization. Again, under the terminology schemes discussed above, distinctions of such
groups would be considered to be support groups by Borkman (1999) and therapy groups or
maintenance groups by Yaruss, Quesal, and Reeves (2007). This may give an inaccurate
impression of how that particular group operates. This shows that despite attempts to form
an operational definition of self-help groups, more complex scenarios may lead to debate
about a group's status. In these situations, it makes most sense to observe the manner in
which the group is run instead of determining its status based on the credentials of who
created or who currently manages the group. An understanding of self-help groups and
organizations is important in appreciating the self-help movement in the U. S.
2.5.2 Self-Help Movement in the United States
The beginning of the self-help movement in the United States is said to have emerged from
the ethnic communities during the mid-1800s, when immigrants turned to each other to
adjust to their new lives in the United States (Katz & Bender, 1976). The formation of
Alcoholics Anonymous (AA) in 1935; however, is often thought of as the first formalized
version of self-help in the United States. The original concept of self-help was to help people
that were not able to be "cured" by professional treatment (Adamsen & Rasmussen, 2001;
Borkman, 1999). Their "12 Step" philosophy that was an alternative to traditional medical
model for recovering from addiction was adopted by others living with other addictions (Oka
& Borkman, 2000). By the mid-1950s and early 1960s self-help had grown into the realm of
physical and mental health disorders, but included organizational and operational models
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(Reeves, 2006) instead of using the 12-Step philosophy. In the mid 1960's the self-help
movement experienced rapid growth, but was seen more of a social phenomenon rather than
a medical phenomenon (Adamsen & Rasmussen, 2001; R. E. Emerick, 1996; Vattano, 1972)
and was closely related to the growth of consumerism in the 1960s (Hunt, 1987; Ramig,
1993).
In the 1970s, healthcare in the U. S. became more specialized, less personalized, and gated
by healthcare providers (Borkman, 1999; Damen, Mortelmans, & Van Hove, 2000).
Frustration built among many people seeking professional help, while the self-help
movement experienced an expansion in scope and activity. As previously mentioned
(subsection 2.4.1.3), a divide seemed to exist between those who provided professional
services and those who were participants and supporters of self-help groups. Speaking on
this issue in 1990,the U.S. Surgeon General, Dr. C. Everett Koop, stated, "Many
professionals still believe that.. .transformation, change, and healing are the prerogative of
an elite who possess knowledge and techniques bestowed by specialized training institutions"
(as cited in Bradberry, 1997, p. 393).
During the 1980s this "mutual disrespect" began to change. Surgeon General Koop was
influential in this attitudinal shift. He sponsored a National Workshop on Self-Help and
Public Health for both consumers and professionals (Borkman, 1999; Surgeon General
Workshop, 1988). Outcomes of the workshop included the formation of both National
Network of Mutual Help Centers and the International Network of Mutual Aid Centres. Both
organizations hold annual conferences and share resources including information and referral
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systems. The researchers who attended the workshop also formed a Self-Help Interest Group
that is associated with the American Psychological Association (Borkman, 1999). The
workshop proceedings stated, "Health providers alone could not ease the suffering of people
who are physically or mentally ill or addicted." Years later, Koop wrote, "Consumers are
becoming more interested in taking charge of their own lives. Professionals need to
recognize this trend and acknowledge the potential benefits of self-help" (Diggs, 1990, p. 33;
as cited in Reeves, 2006, p. 258). The late 1980s brought about open-minded professionals
including researchers, practitioners, and policymakers that helped to promote self-help
organizations without exerting control over them (Borkman, 1999).
Borkman (1999) portrays the 1990s as a time when professionals began to be "humanized" in
the literature, and susceptible to "illness" and other conditions like everybody else. Some
professionals who revealed their vulnerabilities and their subsequent connections with the
self-help movements helped to validate the helping power of self-help groups. It also helped
to change the stereotype of self-helpers to one that has "strengths, resources, capabilities, and
special knowledge to contribute to [his/her] own and [his/her] peers' recovery." Research of
the 1990s begins to include studies that consider both professional and self-help stances as
part of treatment. This is due in part the dual role of individuals who are not only
professionals but also leaders in the self-help community (Medvene, Wituk, & Luke, 1999).
In the 2000s, self-help groups exist for every condition or disorder recognized by the World
Health Organization (Banks, 2000; B. J. White & Madara, 1998). In 2000, Riessman
estimated that over 500,000 self-help groups exist with over 60 million people participating
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in such groups. Since 2000, one can speculate that these numbers have increased and are still
on the rise. Technological advancements related to the internet have resulted in better search
engines (e.g. Google), more websites, and better websites that are more organized with more
content. These advancements all benefit the creation, exposure, and growth of national selfhelp organizations and local self-help groups of all sorts. Simultaneously, the birth and
popularity of social networking websites which include Facebook and MySpace, has become
instrumental in connecting and reconnecting people. People use such opportunity to seek out
other people with similar interests including people who have similar personal challenges.
People have taken solace in online interactions, but have also sought out in-person self-help
organizations and groups via online connections. This has resulted in an increase in
membership of existing in-person groups and the formation of other in-person groups.
However, studies need to be developed and conducted to determine the impact that these new
forms of media has had on the development of self-help groups on the local, national, and
international levels.
Davison, Pennebaker, and Dickerson (2000) study identifies patterns of patient support in
face-to-face interactions and online support found that illnesses that have a social burden or
interpersonal consequences lead people to seek out others with a similar condition.
Conditions described as embarrassing, socially stigmatizing, or disfiguring (i.e. alcoholism,
cancer, AIDS, depression, and diabetes) are correlated to higher levels of both face-to-face
and online support. The study also makes the point that efficacy studies on in-person selfhelp activities have been challenging because of inherent self-selected nature its participants.
The authors illustrate that studies of support-group participation have shown positive results
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for such conditions as rheumatoid arthritis, cancer, heart attack, and epilepsy. Patients from
various studies have exhibited more health benefits than nonparticipating controls or controls
on a waiting list (Bradley et al., 1987; Dracup, 1985, Droge, Arntson, & Norton, 1986; C. F.
Telch & M. J. Telch, 1986). Gould and Clum's (1993) meta-analysis reveal that self-help
treatment approaches to be as effective as professional treatment for some forms of physical
(e.g. headache) or mental illnesses (e.g. depression) traditionally treated by psychotherapy or
medicine. In the realm of breast cancer, Holland and Holahan (2003), found that higher
levels of social support perceived by participants were correlated to higher levels of
adjustment. Participants noted that they felt different from others whose lives would
continue in a normal fashion. Feelings of isolation and alienation were minimized by
belonging to a group who share similar concerns and that can provide guidance; however
participants simultaneously wish to receive accurate information from health professionals.
A systematic review of the research about "recovery" from alcohol dependence in Alcoholics
Anonymous (AA) suggests that members enhance their self-efficacy, coping skills,
motivation, and facilitate adaptive social network changes (J. F. Kelly, Magill, & Stout,
2009). The preamble read at the start of their meetings reads, "Alcoholics Anonymous is a
fellowship of men and women who share their experience, strength and hope with each other
that they may solve their common problem and help others to recover from alcoholism" (AA,
1947). The sharing of experiences is emphasized and is believed to help with the specifics of
how to remain sober, build a sense of empathy and belonging, and instill hope (J. F. Kelly &
McCrady, 2009). One of the main goals of a 12-step program such as AA is the "helper
principle" (Riessman, 1965) which is the view that "helping you helps me." There are
several interpretations of what people find helpful with the AA fellowship. Some examples
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include the process of mutual sharing and helping others (Zenmore & Kaskutas, 2004, 2008),
observational learning (Bandura, 1969) and group theory dynamics (Yalom, 1995; Yalom &
Leszcz, 2005), and health-promoting social network changes (Kaskutas, Bond, &
Humphreys, 2002).
This subsection reviewed the past 75 years of the self-help movement in the United States.
In short, self-help has evolved from the role of self-help in alcohol management, to other
groups trying to break their addictions, to other groups including the physically and mentally
challenged. As the scope of self-help has continued to expand so has the number of groups
and activities within such organizations. The perceptions of self-help organizations have also
changed. Originally stigmatized as a "strange subcultures of deviants" (Borkman, 1999;
Damen, Mortelmans, & Van Hove, 2000), the perception of self-help groups has grown to a
group of proactive, knowledge people who positively impact their own situation as well as
their peers' situation (Borkman, 1999). This review of the self-help movement in the U.S.
mimics the self-help movement for PWS within the U.S. Perhaps this evolution and steadily
rising trend within self-help lends support to overall concept that people find benefits in
congregating with other who share similar challenges.
2.5.3 Organizations for PWS in the United States
This subsection will examine the rich history of stuttering related organizations and self-help
activities. According to the Surgeon General Workshop (1988) mentioned in the last
subsection (2.5.2), self-help groups are formally defined as:
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Self-governing groups, whose members share a common health concern and give
each other emotional support and material aid, charge either no fee or only a small fee
for membership, and place high value on experiential knowledge in the belief that it
provides special understanding for a situation. In addition to providing mutual
support for their members, such groups may also be involved in information,
education, material aid, and social advocacy in their communities. (1988, p. 5)
Within the realm of stuttering, self-help organizations are known for hosting activities in
which members can interact with each other face to face.
2.5.3.1 Kings ley Club
The Kingsley Club is the earliest documented stuttering group in the United States. The
Kingsley Club originated during the early 1920s in Philadelphia and then expanded to New
York City in November 1923. The clubs were directly affiliated with or "embodied" by the
Smith School for Stammering and Stuttering. The school was founded by the philanthropist
and lawyer, J. Stanley Smith, "who for many years was a stammerer himself (J. S. Smith,
1925). The Kingsley Club named after the English author and PWS, Charles Kingsley, was
founded by J. S. Smith with the help of his assistant and student, Malcolm Fraser (the
founder to be of the Stuttering Foundation of America).
The Philadelphia Public Ledger referred to the Kingsley Club as "the greatest practice center
... for those suffering from defective speech." Since the Kingsley Clubs was directly
affiliated with J. S. Smith's school for stuttering, which required tuition after a free two week
trial period (J. S. Smith, 1925) they should probably be categorized as stuttering maintenance
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groups. On the other hand, others may argue that since the formation of Kingsley Clubs
predate the official formation of speech-language pathology profession (i.e. the formation of
the American Academy of Speech Correction in 1925, currently the American SpeechLanguage Hearing Association) (ASHA, 2010b) and were facilitated by PWS, mainly J. S.
Smith (occasionally by M. Fraser), the Kingsley Clubs should be categorized as self-help
groups (Surgeon General Workshop, 1988, p. 5).
Regardless of the terminology, the Kingsley Clubs have great significance because they are
the first known groups for PWS, outside of a therapy setting. They met once a week to
practice their therapy, share experiences, and exchange ideas (SFA, n.d.a), much like many
current day self-helpers. The Kingsley Club's "Dinner and Club Night," pictured in the
Philadelphia Public Ledger (Kingsley Club, 1923) with 39 formally dressed individuals,
appears to be the first banquet hosted by a group for PWS. The banquet is considered by
many self-help conference attendees, to be the highlight of the modern day self-help
conferences for PWS regardless of the organization. Whether or not this "Dinner and Club
Night" was in context of a larger event or if this was the event in its entirety, this may be
considered to be the earliest documented conference or conference-like event for PWS.
Another significance of the Kingsley Club is that it gave Malcolm Fraser the opportunity to
become the successful businessman (i.e. co-founder of Genuine Parts Company) and
philanthropist he was. His work as a philanthropist led to the founding of the Stuttering
Foundation of America in 1947.
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2.5.3.2 Stuttering Foundation of America
In 1947, Malcolm Fraser founded the Stuttering Foundation of America (SFA), also known
as the Stuttering Foundation. Even though SFA is not recognized as a self-help or mutual aid
organization (Yaruss, Quesal, & Reeves, 2007), it is recognized as "the first and largest
nonprofit charitable organization in the world working toward the prevention and improved
treatment of stuttering" (SFA, n.d.b). They provide many helpful resources for the stuttering
community (i.e. PWS of all ages, parents of children who stutter, and professionals). Their
most notable resources over the years have been their booklets and collection of
DVDs/videos (Bloodstein & Ratner, 2008; Yaruss, Quesal, & Reeves, 2007). M. Fraser
(1978, 2007) authored one of SFA's classic books, Self-Therapy for the Stutterer. The 10th
edition of the classic is available free online among many other online resources. Their over
34 million website visitors support the notion that their website has been a sought after
resource to many (SFA, n.d.b). SFA provides assistance on the clinical and research
forefront. They host and fund several professional training workshops for the "improved
treatment of stuttering" and "supports research to find the causes of stuttering" (Yaruss,
Quesal, & Reeves, 2007; SFA, n.d.b).
2.5.3.3 Council of Adult Stutterers, National Council on Stuttering
It was not until 1965 that the first nationally recognized self-help group for stuttering was
formed at Catholic University in Washington, DC. The group was called the Council of
Adult Stutterers and was formed with the assistance of a speech-language pathologist,
Eugene Walle (Yaruss, Quesal, & Reeves, 2007). Michael Heffron, one of the founders,
stated:
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I would like to form a group of stutterers - or join a group that already exists in which
the members want to help themselves and to help other stutterers. .. .1 would seek to
make stutterers proud, not that they stutter, for only a fool can take pride in affliction,
but that they are doing something to help themselves, (as cited in Van Riper, 1973, p.
169)
As other independent, but related groups formed in other states including North Carolina,
Georgia, Florida (Reeves, 2006), New York, Missouri, Michigan, and Illinois (Bloodstein,
1993), Michael Hartford, member of the Council of Adult Stutterers, acted on the advice of
Walle, to form an umbrella organization for all the groups. As a result the National Council
on Stuttering (NCOS) was formed in 1974 (Bloodstein, 1993) (or 1966, as disputed by
Reeves, 2006). They held annual conferences (Bloodstein, 1993; Reeves, 2006) and
distributed a newsletter (Bloodstein, 1993). The groups were a safe place to express
concerns and frustrations. On the other hand, humorous stories about stuttering were also
shared and reflected a positive attitude about their speech and self-concept. Over time the
NCOS memberships declined and the organization disbanded (Reeves, 2006).
2.5.3.4 Speak Easy International
In 1977, two self-help organizations for PWS were formed on opposite coasts of the country;
Speak Easy was formed in New Jersey by Bob Gathman, a PWS. Speak Easy (not to be
confused with the fluency device - Speech Easy) was created to empower people who stutter
by providing a forum for mutual aid and support for one another, while raising awareness
about stuttering. Speak Easy International, aimed to advocate for PWS and to build a
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network of self-help groups (Reeves, 2006). The leaders of the non-profit organization, B.
Gathman and his wife, Antoinette Gathman, helped Speak Easy's network of self-help
groups or "chapters" to grow to such locations as New Jersey, New York, Connecticut, and
Arizona (Bloodstein, 1993), but no related groups outside of the U.S. as the name may have
suggested. Membership, that had been primarily adults, has declined in recent years. The
Paramus, NJ chapter is the only chapter that remains active. Speak Easy's annual self-help
conferences or "symposia" have existed since 1981 and have always been held in New
Jersey. These 2 to 2 lA day conferences include workshops, keynote speakers, open
microphone sessions, and a banquet. Perhaps the length of time that they have hosted selfhelp conferences is an indication of the potential benefits that self-help conferences offer to
PWS.
2.5.3.5 National Stuttering Association
Also in 1977, the National Stuttering Project (NSP) was formed in California by Michael
Sugarman (PWS) and Bob Goldman (Manning, 2010; Yaruss, Quesal, & Reeves, 2007).
Similar to Speak Easy, this non-profit, self-help organization was created to empower people
who stutter by providing a forum for mutual aid and support for one another, while raising
awareness about stuttering. Currently, they aim to serve children, teens, and adults who
stutter; their families; and professionals (Manning, 2010).
Their effort to create a network of self-help groups (Reeves, 2006) has resulted in self-help
groups throughout the country. The National Stuttering Association (NSA), as it has been
known since 1999 (Sugarman, 1999), currently has 95 adult chapters that are active or are on
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the verge of activation (NSA, n.d.a). In the mid 2000s, NSA also set out to build a network
of chapters for teens who stutter (TWST groups) and for children who stutter (NS AKids
groups). They have succeeded in forming 25 chapters for teens and 13 chapters for children
(www.westutter.org), supporting their claim as the "world's largest association of people
who stutter."
The NSA has been distributing various forms of helpful information and material to the
stuttering community for many years. They have been doing so on their website (i.e.
www.nationalstutteringassociation.org) for over 10 years. Such material includes their
newsletter for adults (i.e. Letting Go) and newsletter for teens, children, parents, SLPs, and
others who support them (i.e. Family Voices formerly Stutter Buddies; Connections,
Advocacy, Resources, and Empowerment or CARE; Our Voices; and Letting Go, Jr.). These
newsletters help them to keep with their mission of awareness, advocacy, and support for
those who stutter by helping to break the cycle of "self-imposed isolation" (Bloodstein &
Ratner, 2008; Manning, 2010; NSA, n.d.6; Yaruss, Quesal, & Reeves, 2007).
As previously mentioned (subsection 2.4.1.1), the NSA was instrumental in facilitating
interaction between professionals and PWS by creating the National Stuttering Association
Research Committee (NSARC) to support stuttering research in 1999 and hosting the first
joint symposium for scientists and consumers, in 2002, to identify research needs and
facilitate collaboration (Yaruss & Reeves, 2002).
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The NSA hosts 1-day workshops for young people and for adults, also known as regional
workshops (Manning, 2010). It is estimated that NSA has hosted over 150 youth day
programs and over 300 adult workshops since their inception (T. Flores, personal
communication, June 17, 2010). NSA has also been host to annual self-help conferences for
PWS throughout the country since 1984. This 3-day event includes workshops, keynote
speakers, open microphone sessions, planned evening activities, and finishes with an evening
banquet. Contrasting Speak Easy's declining membership; NSA has been steadily increasing
membership which has been evidenced by the increase in the amount of chapters and
conference attendees (i.e. over 600 attendees in recent years). Similar to the longevity of the
Speak Easy self-help conferences, one can speculate that the NSA self-help conferences still
exist because of the benefits that attendees receive. It still remains to be seen if this is true
and if so to explore what those benefits may be.
2.5.3.6 First Amendment, International Foundation for Stutterers
A lesser known organization in the realm of self-help is the First Amendment, named after
the part of the U.S. Bill of Rights that addresses citizens' rights to "freedom of speech." The
First Amendment group was founded in New Jersey in 1980 by Elliot Dennis, a PWS
(Berger, n.d.). The original group met in Old Bridge, NJ. This organization was originally a
practice group for graduates of the Air -Flow Program (a fluency shaping treatment
program) (Lanman, 1984). Then, with the help of Ed Riordan and Mark Cosman, (E.
Dennis, personal communication, June 18, 2010) they formed the International Foundation of
Stutterers, Inc. (IFS) (WebMD, n.d.) with the idea of creating a network of self-help practice
groups. The organization managed to build a network of more than 16 self-help practice
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groups (IFS, 1984a), but never became international. Similar to the National Council on
Stuttering, groups were independent but related. Groups were exclusively for graduates of
either the Air-Flow Program or Precision Fluency Shaping Program, but some groups were
open to graduates of both or other fluency shaping programs. The main focus of the IFS
groups was to practice fluency "techniques" (IFA, 1984c). As one member said, "We come
here to speak fluently, not to stutter... .When someone has a block and is not flowing right,
they get stopped." (as cited in Lanman, 1984, p. Dl).
The groups were created, managed, and attended by graduates of therapy programs, but had
no direct affiliation with programs themselves. These self-help groups were considered to be
practice group since they focused on using the skills learned in therapy programs. IFS
groups had groups in at least seven states including New Jersey, New York, and Texas. The
name First Amendment was part of the name of some groups but was not a requirement to be
an IFS group.
IFS also published a quarterly newsletter called Look Who's Talking to keep members of the
association up to date with the other groups. Some of the individual groups had annual
dinners (IFS, 1984b), but the IFS did not have annual self-help conferences. The IFS groups
were at their peak during the 1980s. A regional association of SLPs even awarded one of the
groups (i.e. First Amendment Group of Long Island) with a special citation citing their
"unique and invaluable contribution to the needs of individuals with stuttering disorders"
(IFS, 1984b, p. 1). The First Amendment of Princeton, NJ is currently the only known active
group (E. Dennis, personal communication, June 18, 2010; E. Riordan, personal
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communication, June 18, 2010). Similarly, Manning (2010) lists providing a forum to
"practice therapeutic techniques in a safe and supportive environment" (p. 593) as one of the
many goals of NSA and their self-help activities including self-help conferences. A study of
self-help conference for PWS may uncover this particular benefit or possibly other benefits
for people who use a fluency shaping approach to therapy.
2.5.3.7 Friends - The National Association of Young PWS
In 1997, John Ahlbach, former Executive Director of the NSA and a PWS, and Lee
Caggiano, an SLP and mother of child who stutters, formed Friends - The National
Association of Young People Who Stutter. The purpose of this non-profit, volunteer
organization was to provide a network of support and education for children and teenagers
who stutter, their families, and the professionals who work with them.
Their website provides various forms of helpful information and material for young people
who stutter, family members, and professionals who work with PWS. It also includes a
mentoring program "giving teens who stutter the opportunity to support children who stutter"
(Friends, n.d.b). Their newsletter, Reaching Out, also available on their website helps
members to stay in touch with news within the stuttering community.
Friends hosts about four 1-day workshops per year throughout the United States. Workshops
include break-out sessions that are specific to children, teens, and young adults who stutter,
parents and siblings of family members who stutter, and professionals who work with PWS.
They also host an annual self-help conference or "convention" for young PWS. These
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conventions are 2V2 day events that include workshops, a keynote address, open microphone
sessions, planned evening activities, and an evening banquet. The potential benefits of these
conferences need to be explored.
2.5.3.8 Our Time Theatre Company
Another organization in which PWS provide mutual support for each other is Our Time
Theatre Company (Our Time). Our Time was founded in New York City in 2001 by Taro
Alexander, a professional actor and PWS. Our Time is a non-profit organization "dedicated
to providing an artistic home for young people who stutter." Their members (ages 8-18 years
old) create plays and music which they perform throughout the year. Their summer camp,
Camp Our Time, runs for 1 week and provides additional opportunity for young PWS to
participate in theatrical activities. The organization fosters a "feeling of community and
family" and "offers an environment free from ridicule where young people who stutter
discover the joy of creating and performing original theatre and music," (Our Time, n.d.).
This is similar to what members of self-help groups report (Trichon, Tetnowski, &
Rentschler, 2007). Similar to the other self-help organizations Our Time helps to educate its
audience "about the challenges and misconceptions of stuttering ... [and to].. .demonstrate the
vast capabilities of a group of people that is often misunderstood" (Our Time, n.d.). Their
message of "listening, understanding, acceptance, and unconditional love" (Our Time, n.d..)
is echoed in some of the other self-help organizations.
Some would debate whether or not Our Time could be considered a self-help organization
because of their focus on performing arts and the fact that a "professional" created or
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manages the organization. However, others may argue that the creator and manager not only
is a PWS but also that his professional statues refers to his credentials as an actor, not as a
person trained to work with PWS. Many who have been around Our Time members (ex. at
stuttering-related conferences) can attest to the supportive attitude of the organization and its
members towards PWS. Regardless of how Our Time is categorized, the possibility that
members receive therapeutic benefits for their stuttering from the self-help elements that are
inherently a part of the organization should be considered and studied.
2.5.4 International and Foreign Organizations for PWS
Self-help organizations for PWS have been growing worldwide. In addition to the U.S. and
Canada, there are other countries that have national self-help organizations for PWS in
Africa, Asia, Australia, South America, and at least 14 countries in Europe (Bloodstein &
Ratner, 2008; ISA, n.d.a). Other associations have formed to unite national associations.
Some associations aim to unite the countries within a continent such as the European League
of Stuttering Associations and the Federation of African Stuttering Association, while other
associations aim to connect the people in the stuttering community from all over the world.
2.5.4.I International Stuttering Association
The International Stuttering Association (ISA) is a not-for-profit organization, umbrella
organization for national and international self-help organizations for PWS. They have over
42 national associations currently registered with them (ISA, n.d.b). Its vision is to help
people all over the world understand stuttering. Their mission is to represent PWS on a
global scale (Krall, 2000a). This is partly accomplished through their biannual newsletter
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called One Voice. The ISA, like the NSA, has also been an integral part of developing the
relationship between self-help and professional communities (Manning, 2010; Yaruss &
Reeves, 2002).
This organization can be traced back to the World Congresses of People Who Stutter. The
first World Congress in 1986 was held in Osaka, Japan in and was organized by Shinji Ito.
The inaugural conference was attended by more than 300 individuals from more than 7
countries. The 4-day conference included "speeches, symposia, workshops, laughter,
singing, partying, and fun" (Bloodstein, 1993, p. 170). A declaration was adopted that called
on researchers, clinicians, and PWS from around the world to broaden the communication
network through publications and internationals conferences to help solve the problem of
stuttering (Bloodstein, 1993). The idea of a formal association was discussed at the 3rd
World Congress (1992) and the International Stuttering Association (ISA) was officially
created at the 4th World Congress in Linkoping, Sweden in 1995 (Pill et al., 2001).
In 2000, the ISA in partnership with the International Fluency Association (IFA), an
organization which includes clinicians and researchers (discussed in the next subsection 2.5.4.2) sponsored the creation of the Bill of Rights and Responsibilities to build "a more
humane, just, and compassionate world for the millions of people who stutter" (ISA, n.d.a,
para. 1). For example the Bill of Rights and Responsibilities states:
A person who stutters has the right to ...stutter or to be fluent to the extent he or she is
able or chooses to be. .. .A person who stutters has the responsibility to ...understand
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that listeners or conversation partners may be uninformed about stuttering and its
ramifications or that they may hold different views of stuttering, (para. 6, 7)
The Bill of Rights and Responsibilities resonate many of the ideals of people who have been
active within the self-help community of PWS and are therefore often shared at self-help
activities including conferences.
The ISA now hosts the World Congress of People Who Stutter as their triennial conference.
The 4th World Congress of People Who Stutter in 1995 was deemed to be the 1st ISA
conference. The ISA has hosted a total of 5 of the 8 World Congresses (Note: 2010 World
Congress was rescheduled to 2011). These 4-day conferences mainly attended by people
from the stuttering community include workshops, keynote speakers, open microphone
sessions, planned social activities, and "Gala Dinner" or evening banquet (J. Eckardt,
personal communication, July 31, 2010; M. Hoffman personal communication, July 31,
2010). The existence of these conferences supports the notion that this type of self-help
activity is valued by people from all over the world and should be further explored to learn
about their potential benefits.
2.5.4.2 International Fluency Association
The International Fluency Association (IFA; www.ifa.org) founded in 1989 (IFA, n.d.a) is a
not-for-profit, organization that is devoted in their "interdisciplinary approach" (IFA, 1991b)
"to the understanding and management of fluency disorders, and to the improvement in the
quality of life for persons with fluency disorders" (IFA, n.d.6). The IFA, like the NSA, ISA,
has played a role in fostering the relationship between self-help and professional
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communities (Manning, 2010; Yaruss & Reeves, 2002; Reeves, 2006), despite not being a
self-help organization. The IF A has a membership that consists of both SLPs and PWS
(Starkweather, as cited in DeNil, 1995; Reeves, 2006). Their focus on research and clinical
issues however, directly impact PWS and self-help communities of PWS. Their
international focus puts them in a position to bring people together from different cultures
and countries to exchange ideas (Starkweather, in De Nil, 1995). Their close affiliation with
the International Stuttering Association (ISA) has resulted in the co-sponsored, Bill of Rights
and Responsibilities of People Who Stutter. The IFA may have an even closer connection to
the world-wide self-help movement for PWS with the possibility of a combined triennial
conference with ISA, as proposed at the 2009 IFA conference. The IFA has hosted six
World Congresses on Fluency Disorders to date. Their conferences have attracted
researchers, clinicians, and PWS, since their inaugural conference in 1994, in Munich,
Germany.
2.5.4.3 Other National Organizations for PWS
National organizations for PWS exist all over the world (Reeves, 2006) and are still forming.
As previously mentioned (subsection 2.5.4.1), the ISA has over 42 countries registered in
their network of self-help organizations from all over the world. Many of the national
organizations are relatively new, but some organizations have long and interesting histories
like the organizations in the U.S. that were discussed in the last subsection (2.5.3) (ISA,
n.d.b).
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The creation, maintenance, and growth of each national organization and of the network of
national organizations for PWS lend support to the view that such organizations are
beneficial to PWS. Amongst the many activities that such organizations offer are self-help
conferences. A study that gives insight to the possible benefits that self-help conference for
PWS may have to offer could help improve many national organizations to develop better
self-conferences to maximize the potential benefits of the attendees.
2.5.5 Self-Help Activities for PWS
Krall (2000b) asks the question, could the Greek philosopher, Aristotle and Greek orator,
Demosthenes, who both stuttered, possibly have learned from each other methods of how to
manage their stuttering? If so, they would be a perfect example of an ancient self-help group
for PWS. Even if they did not, Krall (2000b) still makes the point that self-help activities do
not necessarily have to be formal or large in scale. As mentioned before (subsection 2.5.1)
Borkman (1999) explains the term self-help specifically refers to "an individual's taking
action to help him- or herself, often drawing on latent internal resources and healing powers
with the context of his or her lived experience with an issue or predicament" (p. 4). One can
loosely interpret these points to mean that self-help activities for PWS can be situations in
which individuals who stutter take action to help themselves by interacting with others who
stutters. Self-help activities include local group meetings, regional workshops (or regional
conferences), and national and international conferences (Bloodstein & Ratner, 2008;
Manning, 2010). Continued expansion of the internet has brought about a number of ways
for PWS to interact with one another for the purposes of self-help (Bloodstein & Ratner;
2008; Bloom & Cooperman, 1999; Ramig & Dodge, 2005; Reeves, 2006; Reitzes & Snyder,
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2009; Starkweather & Givens-Ackerman, 1997). This section will review the various types
of self-help activities in which self-help community of PWS participate.
2.5.5.1 Self-Helpfor PWS on the Internet
Self-help activities are often assumed to take place in person. People may have erroneously
overgeneralized Katz and Benders' (1976) definition of self-help groups which include the
wording "face-to-face social interactions" to all self-help activities. The internet and internet
related software and hardware (e.g. webcams, microphone, and associated software) has
brought about several more options for PWS to participate in self-help activities. Even
though self-help activities can be distinguished from each other, self-help activities, whether
in-person or on the internet, appear to influence people's participation in other self-help
activities for PWS. In other words, people who find self-help on the internet often attend inperson activities, while people who attend in-person activities often participate in self-help
activities on the internet. Therefore, before discussing in-person activities and more
specifically self-help conferences for PWS, it is important to review the self-help activities
on the internet.
2.5.5.1.1 Internet discussion groups. In 1990, the establishment of STUTT-L by
C. Woodruff Starkweather gave rise to the online or internet self-help community for PWS.
STUTT-L (http://groups.google.com/group/fort-worth-nsa/web/stutt-l-on-googlegroups) is an
internet discussion group in which individuals can send emails to all the people on the list by
emailing [email protected]. This internet discussion group (also known
as a listserv or email distribution group) was originally created for researchers and clinicians
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to collaborate more easily. This "international" forum has grown due in part to the
participation of many PWS (Starkweather, 1995; The Stuttering Homepage, n.d.); STUTT-L
is monitored to minimize malicious comments (Starkweather, 1995), advertisements, and
people that may be "trolling" for potential clients (The Stuttering Homepage, n.d.). It had
over 500 members (Hicks, personal communication, February 12, 2010). The discussion
group has recently (Fall 2010) changed its hosting server from Temple University to Google
Groups (NSA, n.d.c; STUTT-L, n.d.).
Another internet discussion group is STUTTERTNGCHAT. This internet discussion group
that formed in 2000 is likely to be the "biggest and most active" of internet discussion groups
for the stuttering community with over 4,600 members (STUTTERTNGCHAT, n.d.; Hicks,
personal communication, February 12, 2010). COVERT-S
(http://health.groups.yahoo.com/group/Covert-S/) is another internet discussion group
specifically for PWS who continually avoid words or situations, rephrase, use word
substitutions, etc. to come across as a fluent person. The internet discussion group was
formed in 2003 and currently has over 400 members (COVERT-S, n.d.).
Internet discussion groups have also been directly associated with some self-help
organizations including NSA and Friends. These internet discussion groups have allowed
self-help organizations to provide opportunities for specific groups of people to interact
amongst each other online. Internet discussion groups include groups for children, teens,
adults, parents of children who stutter, attendees of specific conferences, and chapter leaders
for chapter management collaboration. Although some internet discussion groups remain
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popular, a quick analysis of message activity of several groups, including
STUTTERINGCHAT, show evidence of a downward trend in internet discussion group
activity (STUTTERINGCHAT, n.d.). This may be due to an increase in popularity in other
internet self-help related activity for PWS including podcasting, video sharing, blogging, and
the use of social network websites.
2.5.5.1.2 Podcasts and video links. The innovation of MP3 players for podcasts or
downloadable audio (or video) material, and video sharing websites such as YouTube.com
brought about the creation of StutterTalk.com (http://stuttertalk.com). It was created in 2007
(Reitzes & Snyder, 2009) and made a non-profit organization in 2009 (StutterTalk, n.d.).
StutterTalk.com was co-founded by Peter Reitzes, Greg Snyder, and Eric Jackson, who are
all SLPs who stutter. The website uses audio podcasts and video links to distribute or
broadcast their shows. Shows are recorded and then made available to their audience.
Listeners and viewers either listen or view episodes from links on the StutterTalk.com
website or download audio podcasts to a device with MP3 capability. Episodes of the show
usually consist of the host(s) interviewing guests from the stuttering community including
PWS, family members of PWS, and professionals, about various stuttering related topics
(StutterTalk, n.d.). Although StutterTalk.com is not a self-help organization, it allows for
audience members to interact with the hosts and sometimes guests (via the hosts) by emailing
comments or posting to their social networking page (discussed in subsection 2.5.5.1.4) about
various episodes or other stuttering relating issues which may become topics of interest on
future shows (Reitzes, personal communication, 2010). The website also contains links to
other websites about stuttering (StutterTalk, n.d.).
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2.5.5.1.3 Blogs. Another internet-driven self-help forum for PWS are blogs.
According to R. Blood (2000) blogs are:
.. .usually maintained by an individual [and].. .provide commentary or news on a
particular subject; others function as more personal online diaries. A typical blog
combines text, images, and links to other blogs, Web pages, and other media related
to its topic. The ability of readers to leave comments in an interactive format is an
important part of many blogs. Most blogs are primarily textual, although some focus
on ... videos.. .and audio (podcasting).
There are many websites about stuttering that provide information in the form of text, audio,
or video, but the two elements that bring blogs into the realm of self-help activity are that
readers, listeners, or viewers of blogs can leave comments making it interactive. The other
element is the interaction between PWS. In other words, blogs about stuttering usually result
in comments from PWS about either the original blog (possibly written by a PWS) or other
the comments from other people (possibly written by a PWS). An example of a blog about
stuttering is Make Room for the Stuttering (http://stutterrockstar.wordpress.com/) created in
2009 by Pamela Mertz (a.k.a. StutterRockStar), a PWS (Make Room for the Stuttering, n.d.).
Her website includes text blogs written by her or guest bloggers. The website also includes
downloadable audio (podcasts) and video links. "Women Who Stutter: Our Stories" is a
primary focus of much of her material. Links to other stuttering related blogs are also listed
for visitors to explore (Make Room for the Stuttering, n.d.).
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2.5.5.1.4 Social networking websites. The advent of social networking websites
has also brought about another way for PWS to connect to each other. Websites such as
Facebook © 2010 (http://www.facebook.com/) and MySpace, Inc. © 2003-2010
(http://www.myspace.com/)allow individuals to easily search and connect with common
interest groups including self-help groups or organizations for PWS that have set up accounts
on the website. Once a person becomes affiliated with the group or organization, they can
connect with others affiliates. Social networking sites also provide the opportunity for
individuals to have live online chats, in which individuals can have unfiltered, synchronous
chat by typing to each other. This is different from the other forms of internet media
previously mentioned above.
There are many other internet venues which provide self-help for PWS that are in their
infancy, or remain as an idea being developed. The outlook for self-help for PWS on the
internet looks promising. This increasing trend of self-help options for PWS online support
the notion that there may be beneficial. However, more research is needed to determine the
potential benefits, and the commonalities and differences between in person self-help
activities and internet self-help activities for PWS. These questions cannot be answered
unless if there is research conducted on in person self-help activities including self-help
conferences for PWS.
2.5.5.2 Self-Help Group Meetings for PWS
Self-help groups meetings for PWS are the most common form of in-person self-help activity
for PWS. Self-help groups are a collection of people usually ranging from "as few as two or
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three people, or as many as a dozen or more" (Yaruss, Quesal, & Reeves, 2007, p. 261)
people who talk about various stuttering related topics. Meetings are regularly scheduled
(monthly, biweekly, etc.) and are usually attended by people that are relatively local.
After leading groups for 8 years, it appears that there are many issues that contribute to the
composition of the group and their meetings; among these are: number of meeting attendees,
group's affiliation with self-help organization (impacts the goals of the individuals who
attend), how often the group meets, length of the group meetings, group social events,
experience of the meeting facilitator to manage meetings (some groups rotate facilitators),
management style of the facilitator (rigid structure vs. flexible structure), who may attend
(group have different rules about family members, friends, professionals, students, etc.),
goals and expectations of meeting attendees.
Self-help organizations that have at least one self-help group or chapter remaining include
the NSA, Speak Easy, IFS, in addition to many of the other national organizations that have
local chapters. Studies about the different in-person self-help activities including self-help
conferences may be helpful in determining the potential benefits and the best way to
maximize such benefits at each self-help venue.
2.5.5.3 Self-Help Workshops for PWS
Self-help workshops are an in-person self help activity that is often defined by the length of
time of the event. Self-help workshops are usually one-day events, therefore they are
sometime referred to as one-day workshops or One-Day Conferences (Friends, n.d.b).
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Workshops typically have general sessions for all attendees. General sessions may be for the
opening or closing of a workshop, keynote speaker(s), or open microphone session in which
anyone can talk. Besides general sessions, regular sessions are presentations by one or more
speakers on a particular topic related to stuttering. Some workshops have one session at a
time for all attendees, but most workshops have simultaneous sessions going on at the same
time for attendees to choose from.
Workshops have been referred to different ways. Since these are events are much longer
than a self-help meeting and much shorter than self-help conferences (usually 2XA to 4 days),
workshop attendees tend to be from the region, instead of locals from the immediate area or
people from all over the country or world. As a result workshops have also been referred to
as regional workshops or regional conferences. Self-help workshops can also have different
target audiences. As a result self-help workshops have also been referred to as Youth Day
Workshops, Adult Workshops, and Family Day Workshops (NSA, n.d.d), or any combination
of them. In addition self-help workshops have been loosely referred to as weekend
workshops. Self-help organizations including NSA and Friends provide SLPs an opportunity
to earn Continuing Education Units (CEUs) toward maintaining their professional license.
CEUs are sometimes earned while the self-help activities are taking place, but sometimes
they are earned the day before the actual self-help workshop, usually on a Friday and
Saturday. Workshop is also a term that is commonly used at self-help conferences to refer to
sessions. Therefore it is important to understand the word workshop in its proper context.
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Self-help workshops are not regularly scheduled local activity, therefore when publicized
correctly attendance is usually much higher than a regular self-help group. Workshops are
usually organized by members of a local self-help group with the assistance of the hosting
self-help organization. There are multiple self-help workshops held each year and may vary
in location. Guest speakers are often scheduled to participate. Organizations that typically
host such workshops include NSA and Friends. SFA also host workshops, but their
workshops are for professional training and are not self-help workshops.
Self-help workshops are another in-person self-help activity for PWS that needs to be studied
for potential benefits. If benefits are identified it is important to study the similarities and
differences amongst the different self-help activity formats which include self-help groups
and self-help conferences for PWS.
2.5.5.4 Self-Help Conferences for PWS
The last of the self-help activities for PWS are self-help conferences. Self-help conferences
are typically the largest attendance of the three in-person activities. Self-help conferences are
regularly scheduled events hosted by a self-help organization that usually take place
annually, although some organizations choose to have them biennially or triennially.
Depending on the self-help organization the event can vary between 2lA to 4 days in length.
Like self-help workshops, self-help conferences change location from year to year (with the
exception of Speak Easy). Also like self-help workshops, self-help conferences usually have
general sessions for all attendees, which include the conference opening and closing, keynote
speeches, and open microphone sessions. They also have regular sessions which have one or
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more speakers or a panel of speakers about specific stuttering related topics. These sessions
occur simultaneously to give attendees choices about what presentations they would like to
attend. Open microphone sessions are also usually included amongst these choices. Selfhelp organizations including NSA and Friends are permitted to offer CEUs to help SLPs to
maintain their professional credentials.
Unlike self-help workshops, self-help conferences usually have scheduled outings or social
events. Some self-help organizations include live-auctions, silent auctions, and/or raffles as
part of the conference to raise money for the organization. Self-help conferences usually
conclude with a banquet which usually includes entertainment (e.g. master of ceremony,
music, and dancing). Self-help organizations that have self-help conferences include NSA,
Friends, Speak Easy, ISA (triennial), and many of the other national associations.
There is a scarcity of research about self-help activities for PWS, but even less research
regarding self-help conferences for PWS. As a result there is a need for research in the
general realm of self-help activities, but an even great need for more research that focuses on
self-help conferences for PWS. Research in this domain will help people learn about the
similarities and differences between the self-help activity formats. More knowledge in this
area can assist: (a) self-help organizations to better manage and plan their self-help activities,
(b) clinicians to make the best referrals for their clients, and (c) PWS to make better
decisions regarding the best way to manage their stuttering. The next section will explore the
literature on self-help activities for PWS.
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2.5.6 Research on Self-Help Activities for PWS
The literature regarding self-help activities for PWS is sparse. This makes a review of these
studies that much more important in designing a study that helps to understand more about
self-help activities for PWS, but specifically about self-help conferences. Over the years
there has been an increase in the number of participants at self-help activities including
national self-help conferences from the numerous member organizations of the ISA (Yaruss,
Quesal, Reeves et al., 2002). Anecdotal evidence of the benefits that PWS have received
have been communicated: (a) on internet discussion groups (e.g. STUTT-L) (Starkweather,
1995), (b) in books that share personal experiences of stuttering by authors who stutter (e.g.
Jezer, 1997), (c) in books that have compiled the personal stories by various PWS (Ahlbach
& Benson, 1994; St. Louis, 2001), and (d) in books that have compiled essays written by
SLPs who stutter giving advice to other PWS (Hood, 1998). Various discussions at
professional conferences including the annual Leadership Conferences of ASHA's Special
Interest Division for Fluency and Fluency Disorders (SID-4) have supported the idea that
self-help activities are beneficial to PWS (and clinicians) (Krauss-Lehrman & Reeves, 1989;
Tetnowski & McClure, 2010; Trichon, Tetnowski, & Rentschler, 2007; Yaruss, Quesal,
Reeves et al, 2002).
Despite the history of self-help for PWS and the supporting evidence provided by statistics
on membership trends, published stories of PWS (unanalyzed), and discussions among SLPs
at professional conferences, systematic research is still needed. A few researchers have
conducted studies that were either fully or partially dedicated to the exploration of the
potential benefits of self-help activities for PWS (Gathman, 1986; Hunt, 1987; Krauss-
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Lehrman & Reeves, 1989; Ramig, 1993; Trichon, Tetnowski, & Rentschler, 2007; Yaruss,
Quesal, Reeves et al., 2002). The results of these studies have helped to form the foundation
of the scientific evidence needed for self-help activities for PWS to sustain or gain credibility
within the professional community. This section will review prior studies that relate to selfhelp activities for PWS.
The first of these studies is Bob Gathman's unpublished study which surveyed and
interviewed four adults who stutter (Gathman, 1986). According to Ramig (1993) the study
attempted to "isolate factors responsible for change in behavior as a result of affiliating with
a self-help group," (Speak Easy group). Ramig (1993) explains that Gathman's questions
were related to motivation, self-concept, attitude, and anxiety. According to Ramig (1993)
the results show the following:
1. Motivation - All participants reported that the sharing, caring, and acceptance of
the group reinforced their motivation.
2. Self-concept - All participants felt their self-help experience helped to improve
their self-concepts. Three participants reported improved self-concept enhanced
their social life, while the remaining one reported that his social life was stable
prior to joining the group. Three participants reported that their self-help
experience also increased their self-concept in both employment and professional
life, while the fourth participant was described as a housewife.
3. Attitude - All participants reported more acceptances of themselves as persons
who stutter. Three participants rated their attitude as positive. One participant
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reported an improved attitude. The families of the participants confirmed these
attitudinal changes.
4. Anxiety - All participants reported a decrease in their feelings of anxiety since
joining the self-help group.
Ramig (1993) also reports that Gathman's (1986) finding included that all participants
reported that their fluency had increased as a result of their participation in the self-help
group. The notion that self-help or support groups can have a positive impact on gaining or
maintaining fluency has also been supported by Hunt (1987), Starkweather and GivensAckerman (1997) and Bloom and Cooperman (1999).
Despite the fact that the unpublished study only had four participants and has not
satisfactorily been "peer reviewed" by researchers, it does provide information about the
benefits of self-help groups. This further contributes to the overall knowledge base of selfhelp activities for PWS. More research about self-help activities for PWS may lead to more
information about potential benefits for PWS. A study about self-help conferences for PWS
may provide some of those answers.
Hunt's (1987) study focused on what he considered to be "self-help" group representatives
and self-help group leaders from the Association for Stammerers (AFS), now the British
Stammering Association (BSA) (Lieckfeldt, 1999). He surveyed 30 potential participants
about basic information pertaining to each of their self-help groups. The study included
open-ended questions about their views on the benefits of self-help groups for those who
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have partaken in them. Based on 20 responses, Hunt (1987) concludes that self-help groups
only benefit a minority of PWS. However, he also concludes that it is difficult to make a
clear cut distinction between self-help groups and other types of stutterers' groups. Hunt
claims that almost all the self-help groups in the study "have taken origin as an offshoot of
therapy groups managed by speech therapists" and often describe themselves as 'follow-up
groups' or 'Transfer and Maintenance Groups' that "have the specific aim of transferring
speech controls to everyday life." According to Yaruss, Quesal, and Reeves' (2007)
terminology scheme, the groups described by Hunt (1987) were not self-help groups because
they were created by professionals and were focused on using speech therapy. Even though
the focus of the groups was on maintaining fluency, Hunt (1987) concludes that many more
people "gain much needed support at critical stages in their lives from the group experience"
(p. 208). He further concludes that self-help groups seem to provide the following to PWS:
(a) social contact; (b) new insights for the individual into the nature of his condition; (c) a
way of helping others (useful experience of constructive activity); (d) a link with
professionals; and (e) an information service (useful for those who have had no treatment and
may help to make expectations more realistic). Many of these are consistent with the
benefits of group experiences described by Yalom and Leszcz (2005) but they did get
benefits that were consistent with what self-help groups typically have to offer. Hunt shares
some quotes that support the idea that groups in his study were beneficial, even though they
may not have been self-help groups. One respondent wrote:
We all get tremendous benefit from our meetings, I know - support, friendship and
encouragement certainly rate high on the list for us as we are mainly single
stammerers who perhaps have not found our niche socially but can really relax in the
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group atmosphere. Several of us had spent many lone years of stammering, not
meeting anyone else with the same problem, and tending to bury the problem and not
talk about it. (as cited in Hunt, 1987, p. 206)
Another respondent wrote:
I have found being a member of a group helpful in a number of ways. It has helped
me to get into fluent speech and convinced me that it is at last possible under some
circumstances for me to speak without stammering. I feel that I have benefited a
great deal from the atmosphere of support that groups provide, particularly when
things are not going well, (as cited in Hunt, 1987, p. 206)
Hunt reports:
The greatest specific virtue of self-help groups we have been able to identify is the
relief from the sense of isolation they can provide, giving the stutterer someone to
talk to who can understand the distress, frustration and isolation endured. It may be
vital for some people to pass through this phase of communicating and sharing a
troubling experience, and to come to terms with it, before they become able to devote
the necessary personal effort to the practical aspects of dealing with their own unique
speech problem. For some this can only happen in a group of fellow stutterers, (p.
211)
Respondents also reported that the absence of therapists encouraged honesty. One discussed
the most valuable elements in the group to be "those that allow people to talk about their
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problems and difficulties freely - they then realize that they are not alone, others have coped
successfully, so they are encouraged and motivated to do the same" (Hunt, 1987, p. 206).
Hunt (1987) concludes that only a minority of attendees received benefits from attending
self-help groups; however Hunt's description of self-help groups do not parallel what would
be considered to be self-help groups for this manuscript (based on Yaruss, Quesal, & Reeves,
2007, terminology). In addition, Hunt's primary determination of success was focused on
fluency maintenance, a reflection of the Zeitgeist of the 1980's in stuttering treatment (Bloom
& Cooperman, 1999). Perhaps a broader view of benefit or success may have resulted in the
acknowledgement of some of the benefits that are often experienced in a group therapy
setting (Yalom & Leszcz, 2005). A survey of actual self-help groups or conferences would
possibly result in even more beneficial features. However it is possible that people who
attend self-help activities are not representative of the all PWS. The self-help associations
are in no way representative of the population of PWS.
A couple years later, Krauss-Lehrman and Reeves' (1989) survey study of 600 current and
past members of the NSP (now NSA) produced 141 returned questionnaires. The
questionnaire included questions that related to perceptions of support/self-help groups.
Results of the study showed that respondents ranked "the importance of the support group
meetings' focus" the following way (from most important to least important): (1) sharing
feelings and experiences, (2) provide nonthreatening place to talk, (3) help self-image, (4)
meet other stutterers, (5) learn more about stuttering, and (6) provide adjunct to speech
therapy. Results highlight the culture of the NSP to have more of a social function focus (i.e.
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talking about the challenges associated with stuttering) and less of a fluency maintenance
focus (Ramig, 1993).
This evidence supports some of the important factors of self-help groups. However, the
questionnaire format of the study presents predetermined factors to participants. This may
have influenced participant responses. Perhaps respondents would have given different or
additional factors had they not been presented with the preconceived factors. In addition,
respondents may have given richer details of their experiences in self-help had they been
given the flexibility and opportunity to do so. Lastly, the focus of this study was on
support/self-help groups. This adds to the literature of self-help activities for PWS and how
they may be helpful, but similarities and differences amongst the different activities still
needs to be explored. A study of self-help conferences for PWS using a qualitative
methodology would help give insight about the potential benefits of participation, without the
limitations of survey studies.
Ramig's (1993) survey of self-help group attendees, asked participants to assess the impact
that self-help groups have had on their stuttering frequency, self-concept, personal life, and
work activities. There were 62 participants in the study. Results of the study showed the
following:
1. 79% of the respondents stated their fluency had improved "at least somewhat" as a
direct result of their self-help involvement
2. 84% stated they felt "at least somewhat" better about themselves
3. 74% stated they felt "at least somewhat" more comfortable in their personal life
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4. 63% reported they felt "at least somewhat" more comfortable and competent
operating in their daily work environments.
5. Those reporting improvement in their responses to the above survey questions had
an average attendance of 18group meetings, ranging from 8 - 3 9 meetings.
6. Those respondents reporting no impact or improvement in the areas assessed by
the above questions attended an average of four meetings, ranging from 1-11
meetings.
7. 89% reported they felt "at least somewhat positive" or "very positive" about their
overall impression of the impact of their self-help group involvement on their life.
This study of self-help group attendees lends support to the body of knowledge regarding
self-help activities for PWS. However it does so in a way that does not allow for participants
to expand upon their answers. It also does not allow for attendees to bring about potentially
pertinent topics regarding their self-help experience that the survey would have never
addressed. In addition the survey, like many of the other self-help studies for PWS, was
specifically about attendees of self-help groups. Clearly the literature is in need of a study
that looks at the potential benefits of attending self-help conferences for PWS and needs to
do so in a way that allows participants to openly talk about their experiences instead of being
confounded to the answers provided on a close-questioned survey. A qualitative study about
self-help conferences for PWS would perhaps teach us more about the potential benefits of
self-help activities and more specifically self-help conferences for PWS.
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Another survey of NSA members, formerly the NSP, was conducted at the 1999 conference
in Tacoma, Washington, by Yaruss, Quesal, Reeves et al., 2002). In this survey there were
71 respondents who answered a questionnaire that was partly based on the survey developed
for the Krauss-Lehrman and Reeves (1989) study. The questionnaire also included items
aimed to help SLPs to make good referrals to self-help groups and to help NSA leadership to
enhance self-help meetings. All respondents were members of a local chapter of the NSA,
with the majority of them being long-time members. There were a few conclusions of the
study that related to self-help activities. These conclusions are listed below:
1. Respondents had attended their first meeting primarily to meet other PWS, and
they generally continued attending meetings because of the relationships they
developed.
2.
Respondents overwhelmingly reported that their participation in the NSA had a
positive effect on their self-image and their acceptance of stuttering.
3. Respondents also reported that their participation in the support group had
increased their opinion of SLPs and, in many cases, their desire to pursue
treatment.
Yaruss, Quesal, Reeves et al. (2002) provide more evidence of how self-help activities can
be helpful for PWS. However, the study does not provide any details about anything specific
about self-help conferences even though all the respondents were from one of the annual selfhelp conferences. A qualitative study that focuses on attendees of self-help conferences
would likely help to learn about any potential benefits that attendees of self-help conferences
may receive.
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Trichon, Tetnowski, & Rentschler's (2007) used a qualitative approach to understand the
experiences of six participants who attend self-help meetings for PWS. Results revealed that
the primary reasons for participants' attendance at self-help groups were: (a) to gain more
education about stuttering, (b) to gain more fluency, and (c) to gain more self-awareness
about stuttering. Results also revealed that participants valued particular elements of the selfhelp groups. Elemental themes that emerged from the data are listed and illustrated by
quotes from the participants, below:
1. Encouragement/Inspiration - "It's been a very good experience... [member] has
really been inspirational.. ..Just knowing his story of [his] struggling for so long
and yet being fluent today.. .he's so encouraging to others." (Participant D)
2. Safe environment - "I know for me, I had to gain trust first. I was very
untrusting... I don't feel pressured to share. You share if you want to share."
(Participant D)
3. Sharing feelings - "I went through my own experience, but I was only aware of
that one experience.. .and then seeing.. .how other people experienced it. How
much it had.. .an impact on their lives and stopped some people from going to
college." (Participant E)
4. Sense of community - "It's nice being around other people and know that others
have the problem." (Participant E)
5. Exposure to other PWS - "The main thing is just realizing that.. .I'm not alone
and hear what other people go through. It just reminds me of what I've been
through and what I could do in the future." (Participant C)
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The study concluded that participants: (a) generally feel positive about attending self-help
groups as an adjunct to therapy; (b) have more satisfaction during intervention when they
learn more about themselves, become more educated about stuttering, and learn potential
goals from others; (c) may find value in self-help groups, but may decide not to continue for
a variety of reasons such as lacking the sense of community, differences in goals, and
differences in attitude; and (d) benefit from changes in the intrinsic features of stuttering.
This study was successful in gaining some insight as to what features of self-help groups
were valued by participants. By using a semi-structured interviews with open-ended
questions participants were able to express themselves in great detail and give insight about
their experiences that would not have been possible in an experimental paradigm or closeended question type survey. However, the study was specific to self-help groups. A
similarly structured study that focused on self-help conference attendees would allow for a
comparison between the two different self-help activity formats.
The most compelling quantitive evidence to date about the experience of PWS and self-help
activities comes from a survey study by the NSA that was conducted by Tetnowski and
McClure (2010). The questionnaire was loosely-based on previous questionnaires by
Krauss-Lehrman and Reeves (1989) and Yaruss, Quesal, Reeves et al. (2002). This version
of the survey was conducted over the internet. Out of approximately 8,000 people including
website visitors and members, 1,235 people responded, including 686 adults who stutter.
Amongst the adult respondents who stutter the following conclusions were drawn regarding
particular topics:
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1. Helping people come to terms with stuttering a. Stuttering support activities such as the National Stuttering Association's local
support groups and national conference help people build their self-confidence
and deal with the emotional side of stuttering.
b. The survey found a significant difference in the life impact of stuttering on adults
who are active participants in the NSA: They are less likely to avoid speaking
situations and less likely to say their stuttering interferes with work or school.
They also are more likely to talk about stuttering with family members, friends
and co-workers. (Note: The survey showed significant differences between
respondents who were active participants in the last 3 years to those who were
not.)
c. The majority of those who have attended NSA chapters or the NSA national
conference say the experience has been very helpful in improving their selfconfidence, practicing speaking, learning more about stuttering and exploring
attitudes toward speaking and stuttering. Nearly all would recommend support
groups to others.
2. Synergy between stuttering support and speech therapy
a. There is a positive correlation between stuttering support and speech therapy
success. Active participants in NSA conferences and local chapters are more
likely to:
i. have had speech therapy as an adult
ii. have had speech therapy with a Board Recognized Specialists in Fluency
Disorders.
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b. This correlation works in both directions: some NSA members participate in
support activities and then seek speech therapy; others undertake speech therapy
and then are referred to support activities by their clinicians. About half of
speech-language pathologists who are affiliated with the NSA say they have
referred clients to the organization's local chapters and annual conference.
c. Adults who participate in NSA chapters are more likely to consider their speech
therapy successful.
As part of the overall conclusion of the study, Tetnowski and McClure (2009) state in the
NSA report:
Stuttering support makes a difference. People who participate in the NSA's local
chapters or national conference report fewer negative effects of stuttering and more
successful speech therapy than those who do not. Support groups help people
improve their self-confidence and develop positive attitudes about speaking and
stuttering.
Most relevant to the Tetnowski and McClure (2009) survey are the results and conclusions
regarding self-help conferences. The results reveal that individuals who actively attend NSA
conferences (within the last 3 years) are less likely to: (a) allow stuttering to interfere with
work or school performance than individuals who have not; (b) avoid speaking situations
because of stuttering than individuals who have not; (c) be embarrassed when people find out
that they stutter than individuals who have not; and (d) talk about stuttering with other people
they know than individuals who have not.
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This survey study adds to the body of knowledge on the experiences of PWS which include
their experience of stuttering and their experience of self-help activities including self-help
conferences. The positive results of active conference attendees demonstrate the need for
more research about this phenomenon. A qualitative study about people's experience of selfhelp conferences for PWS would help to explore the complexities of the individual
experiences of attendees in a way that provides them with the opportunity to express the
meanings derived from their experiences.
A review of the self-help organizations for PWS has shown how self-help movement for
PWS has grown in popularity over time. The self-help community of PWS has grown in
nearly every way possible including more members, more local self-help groups, more selfhelp organizations all over the world, and more in-person self-help events. The self-help
community has also taken advantage of the different forums on the internet. Self-help
organizations have increased their visibility and new forums for PWS have been created at an
increasing rate. This is more evidence to demonstrate that self-help activities may be
beneficial to PWS and should be further explored. This section reviews the history of the
self-help movement within the U.S. and then the evolution and growth of organizations to
help PWS in the U.S. and throughout the world. In addition, this section also follows the
various formats of self-help including internet-based self-help and in-person self-help
formats. The section concludes by evaluating the literature pertaining to self-help activities
for PWS and why a qualitative investigation of self-help conferences for PWS is necessary.
The next section will address why an investigation of a qualitative nature is specifically
necessary.
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2.6 Qualitative Research in Stuttering
There is much to be learned about stuttering from the spoken words of a person who stutters,
not just the "broken" words. For example, researchers have learned much about stuttering
from their observations of PWS including: epidemiological information about onset and
spontaneous recovery (e.g. Yairi), genetics (e.g. Drayna, Fox), brain laterality and activity
(e.g. DeNil, Kroll, Orton, Travis, Weber-Fox). In the broader view of stuttering used
throughout this manuscript, many of the important aspects of stuttering cannot be
documented through experimental research methodologies and must rely on alternate forms
of research. Since many of the aspects that this document are concerned with feelings,
emotion, lived experiences and other "non-observable" components, a research strategy that
allows for this type of data must be implemented. In this case, a qualitative research strategy
will be used as the primary method of inquiry. Qualitative research often takes a
constructivist point of view that allows for participatory knowledge claims that can help us
understand the true knowledge claims that can help us understand the true phenomenon in
question (Creswell, 2009). The following subsections will review some previous attempts to
understand the broader view of stuttering, discuss some of the logic of moving toward
qualitative research, the advantages of qualitative research, and a tradition of inquiry within
qualitative research - interpretive phenomenological analysis (IPA) (J. A. Smith, Flowers, &
Larkin, 2009; J. A. Smith & Osborn, 2008).
2.6.1 Questionnaires
Questionnaires are a research instrument that may be similar to qualitative research in that
they are descriptive. On the contrary, the standardized answers in many questionnaires are
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designed for statistical analysis and do not provide the amount of flexibility that qualitative
methodologies provide. Even though questionnaires are not in the realm of a qualitative
research, it is important to review the contributions provide by questionnaires and criticisms
that questionnaires receive, to have a greater understanding of the advantages of using a
qualitative paradigm.
Researchers have had some success with studying the intrinsic features of stuttering by
asking participants to complete questionnaires. These questionnaires typically have a list of
questions or statements. In a dichotomous questionnaire participants are asked to respond
yes/no, true/false or whether or not the statement applies to them or not. Examples of these
questionnaires include: the Revised Communication Attitude Inventory, also known as the
Modified Erickson Scale or S-24 (G. Andrews & Cutler, 1974), Communication Attitude
Test (revised) (DeNil & Brutten, 1991), A-19 Scale for Children Who Stutter (Guitar &
Grims, 1977), and Perceptions of Stuttering Inventory (PSI; Woolf, 1967). In ordinalpolytomous questionnaires, participants are asked to respond to a question or statement by
using a Likert scale to provide a bit more flexibility in their answer. Examples of such
questionnaires include: Locus of Control of Behavior Scale (Craig, Franklin, & G. Andrews,
1984), Subjective Screening of Stuttering Severity (research edition) (SSS; J. Riley, G. Riley,
& McGuire, 2004), Wright & Ayre Stuttering Self-Rating Profile (WASSP; Wright & Ayre,
2000), Overall Assessment of Speaker's Experience of Stuttering (OASES; Yaruss & Quesal,
2008). Questionnaires are considered to be descriptive and are usually entirely or mostly
quantitative in nature and not qualitative in nature. These close-ended questionnaires that are
used in research and clinical assessments focus on the perceptions of PWS, but they do not
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give participants or clients the flexibility to express an experience in their own words or in
detail. Qualitative methodologies allow for such flexibility and detail to explore complex
social phenomena or the complexities related to communication disorders.
2.6.2 Movement Toward a More Qualitative Orientation
Before the turn of the 21 st century some studies (Corcoran & M. Stewart, 1998; Logan &
Conture, 1997; Meyers, 1986; Scott, Healey, & Norris, 1995) exemplified the beginnings of a
"movement toward a more qualitative orientation in stuttering" (Tetnowski & J. S. Damico,
2001, p. 21). By the early to mid 2000's, some researchers of fluency disorders began to
appeal for more qualitative methods of research because they recognized that it provided
richer, more flexible, more in-depth and more creative ways to study the complexities of
stuttering and the people directly affected by stuttering (Bothe & Andreatta, 2004; Hayhow
& T. Stewart, 2006; Tetnowski, J. S. Damico, & H. L. Damico, 2001; Tetnowski & J.
Damico, 2004).
Qualitative research methodologies are not new to speech-language pathology. These
methodologies have been used to study such areas as: clinical aphasiology, language
development, childhood language disorders, and practice of public school speech-language
pathology (Tetnowski & J. S. Damico, 2001). In fact, qualitative research predates the
formal existence of the field of speech-language pathology. Qualitative methodologies were
used throughout the 20 century in studying social phenomena in such fields as
anthropology, sociology, and education (Creswell, 1998; Maxwell, 1996) and can be helpful
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in investigating complex social data such as the experience of attending self-help conferences
for PWS.
In 2004, Bothe and Andreatta's study highlighted the lack of qualitative research articles in
fluency disorders in the 10 years previous to the study. They revealed that less than 2% of
the stuttering research articles in the three journals they reviewed used a qualitative
methodology, while less than 3.7% used a mixed qualitative and quantitative methodology.
These results coincided with Tetnowski and J. Damico's (2004) findings that more than 90%
of the stuttering literature was based on an experimental paradigm. The more recent advent
and acceptance of qualitative methods in speech-language pathology has opened many
avenues of stuttering research to explore the dynamics of the disorder which include the
perspectives of the individuals who stutter and their listeners. Qualitative research paradigms
in stuttering have been successful in helping researchers to learn more about a variety of
stuttering related topics such as: the feelings associated with the experience of stuttering
(Corcoran & M. Stewart, 1998; Crichton-Smith, 2002; St. Louis et al., 2000) the experience
of successful stuttering management (Plexico et al., 2005), the experience of late recovery
from stuttering (Anderson & Felsenfeld, 2003); perceptions of therapeutic effect (T. Stewart
& G. Richardson, 2004), postponement and avoidance behavior (Tetnowski et al., 2001),
therapeutic discourse (Leahy, 2004), perceptions of communicative ability among children
who do and do not stutter (Bajaj, Hodson, & Westby, 2005), listener perceptions of disfluent
speech (Susca & Healey, 2002), and the experience of attending self-help groups for PWS
(Trichon, Tetnowski, & Rentschler, 2007). An experimental research paradigm may be able
to study these topics to a certain extent, but contextual factors would be stripped away from
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the very phenomena of interest. Perhaps the growth of qualitative research methodology is
due to the recognition of the advantages that qualitative methodologies have over quantitative
methodologies. This next section will contrast explore the advantages and disadvantages of
its methodologies to understand its growth in understanding various topics related to
stuttering.
2.6.3 Advantages of Qualitative Research
Ramig's (1993) call for research on the impact of self-help groups on PWS was in some
ways also a call for qualitative research even though never specifically stated. He recognized
that "the research needs to be more systematic" to study such complex phenomena. He also
recognized that questions to participants need to include open-ended questions to give
participants more flexibility in their answers to gain a deeper understanding. For example, he
mentioned survey questions that ask respondents to list the components they feel would be
included in the "ideal" self-help group and survey questions to determine respondent's
motivation for pursuing self-help. On the other hand, Ramig's (1993) suggestion for "larger
sampling" and lists questions to address many specific variables implies research that is more
experimental in nature. Ramig's (1993) article, published at a time when qualitative research
was barely recognized in the speech-language pathology literature, helps to illustrate
Tetnowski and J. Damico's (2004) point that a qualitative research paradigm may be more
advantageous than an experimental research paradigm because of the social complexities
involved.
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Qualitative research, according to J. S. Damico and Simmons-Mackie (2003), "refers to a
variety of analytical procedures designed to systematically collect and describe authentic,
contextualized social phenomena with the goal of interpretive adequacy."Some advantages of
qualitative research include: (a) collecting data of interest within natural and authentic
settings with contextual variables, (b) collect rich descriptive data within the authentic
context without predetermined classification schemes or observational categories for
statistical purposes, (c) use words and and/or pictures to describe what is happening during
social interactions, (d) focus on the individual since the complexity of the data necessitates a
focus on one or a few individuals instead of a larger set of participants, and (e) enables the
researcher to incorporate the participants' perspective on the phenomenon investigated based
upon the activities and meanings brought to the phenomenon by the participants. Based on
these points it is believed that a qualitative methodology would be the most appropriate
approach to study the experience of self-help conferences for PWS.
Tetnowski and J. S. Damico (2001) further outline some of the specific advantages of
qualitative research that have attracted researchers to investigate stuttering in a way that
embraces the complexity of stuttering. Some of the major advantages are that the researchers
will be able to: (a) collect authentic data that are true representations of how stuttering
impacts on individuals in the real world; (b) create a richer description of what stuttering is,
focusing on actual behaviors, strategies, and resources employed by the PWS before, during,
and after moments of stuttering; (c) focus on the impact of stuttering on individuals and you
will be able to collect data from the perspective of the individual who stutters; (d) focus on
the PWS and their collaborations with their co-participants within the social context; and (e)
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learn more about the phenomenon under investigation, how it operates, and how PWS
attempt to reduce its impact in social contexts. These advantages are consistent with the goal
of understanding the personal impact of self-help conferences for PWS. These were
specifically demonstrated for research on stuttering (Tetnowski & J. S. Damico, 2001).
Trichon, Tetnowski, & Rentschler (2007) study about attendees of self-help groups for PWS
and Trichon (2007) study about self-help group leaders are an indication of what can be
learned about self-help groups for PWS using the advantages of qualitative research. It is
therefore likely that a qualitative methodology would be extremely helpful in exploring the
detailed self-perceptions of PWS regarding their experiences of self-help conferences for
PWS.
2.6.4 Interpretive Phenomenological Analysis
Within the qualitative methodology there are various traditions of inquiry including
biography, phenomenology, grounded theory, ethnography, and case study (Creswell, 1997).
Another tradition of inquiry is interpretive phenomenological analysis (IP A). IP A was
developed in the mid 1990s (J. A. Smith, Flowers, & Larkin, 2009) with J. A. Smith's (1996)
paper about the use of IPA in health psychology. IP A draws upon concepts from three areas
of philosophy of knowledge: phenomenology, hermeneutics, and idiography. The goal of
IPA is "to explore in detail how participants are making sense of their personal and social
world" (J. A. Smith & Osborn, 2008, p. 53). IPA aims to understand the perception of the
participants by asking the following critical questions of the participants' discourse: (a) What
is the person trying to achieve here?; (b) Is something leaking out here that wasn't intended?;
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and (c) Do I have a sense of something going on here that maybe the participants themselves
are less aware of? (J. A. Smith & Osborn, 2008, p. 53)
IP A is phenomenological in that it aims to explore and understand individuals' perceptions of
an object or event. It does not aim to form an objective statement about an object or event;
therefore findings cannot be generalized (J. A. Smith & Osborn, 2008). A phenomenological
philosophy provides "a rich source of ideas about how to examine and comprehend lived
experience" (J. A. Smith, Flowers, & Larkin, 2009, p. 11). Phenomenology "describes the
meaning of the lived experiences for several individuals about a concept or the phenomenon"
(Creswell, 1997). The researcher identifies the "essence" of human experiences regarding an
event. A phenomenological approach has been used in the social and human sciences
including: sociology, psychology, nursing and health sciences, and education (Creswell,
1997) since the later part of the 20th century; however, its roots can be traced back to the
early part of the 20th century to the German mathematician, Edmund Husserl (1980).
Phenomenological study involves the study of a small number of participants through
extensive engagement to develop themes of meaning (Moustakas, 1994). This is done in
efforts to "explore the structures of consciousness in human experiences" (Polinghorne,
1989). In doing so, it is important for the researcher to set aside prejudgments or to have a
"natural attitude" by "bracketing" his/her own experiences, to better understand those of the
participants. Husserl (1980) refers to this suspension of judgments as epoche.
Hermeneutics, the theory of interpretation, is the second major influence on IPA. Perhaps
the idea of hermeneutics is best understood by grasping the questions that concern
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hermeneutic theorists. J. A. Smith, Flowers and Larkin (2009) highlight such questions: (a)
What are the methods and purposes of interpretation itself?; (b) Is it possible to uncover the
intentions or original meanings of an author?; and (c) What is the relation between the
context of a text's production (e.g. its historical genesis in the distant past) and the context of
a text's interpretation (e.g. its relevance to life in the present day).
Heidegger (1962/1927), a hermeneutic phenomenologist, highlights the point that the
interpretations are never without presuppositions and that the reader or analyst also look at
new stimuli with prior experiences, assumptions, and preconceptions. Heidegger
(1962/1927) states:
Our first, last, and constant task in interpreting is never to allow our.. .fore-conception
to be presented to us by fancies and popular conceptions, but rather to make the
scientific theme secure by working out the fore-structures in terms of the things
themselves, (p. 195)
In other words, previous experiences may influence one's interpretation; therefore it is
important to hold the object or event in a higher regard than one's preconceived ideas of the
object or event. Understanding those preconceived ideas is an important step in the concept
of hermeneutics. IPA coincides with the Heidegger's (1962/1927) belief that
phenomenological inquiry is an interpretative process that balances an appreciation for the
personal perspectives of individuals while carefully seeking similarities in experience.
Schleiermacher (1998) explains how within hermeneutics, interpretation has two forms grammatical and psychological. The grammatical form focuses on the objective textual
meaning, while the psychological form focuses on the uniqueness of the author or speaker.
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Similarly, J. A. Smith and Osborn (2003, 2008) refer to a two-stage interpretation process
involving a double hermeneutic; "the participants are trying to make sense of the world [and]
the researcher is trying to make sense of the participants trying to make sense of their world"
(p. 53). Schleiermacher (1998) and J. A. Smith and Osborn (2008), like Bruner (1991) and
Vygotsky (1962), believe that language and thought influence each other. Schleiermacher
(1998) explains how understanding is dependent on the very interpretation of language and
thought, and how both linguistic and psychological interpretations may be necessary to
understand the discourse of an individual. Schleiermacher's (1998) vision of the interpretive
process is holistic in that it makes use of linguistic analysis as well as the intuition of the
researcher. The researcher, therefore, must play an active role to gain an "insider's
perspective" (Conrad, 1987) or to get closer to the participant's personal world (J. A. Smith
& Osborn, 2008). Schleiermacher (1998) believes that if IP A is done properly it is possible
to understand "the utterer better than he understands himself (p. 266).
Idiography is the third influence upon IP A. J. A. Smith, Flowers, and Larkin (2009) explain
that the idea behind idiography is that it focuses on "the particular" as opposed to
generalizing human behavior to a group or a population. The focus on the particular refers to
the attention to fine detail and the depth of analysis. As a result, the analytical process must
be both thorough and systematic. The particular also refers to the understanding of
experiential phenomena of an event, process, or relationship from the perspective of
individual people, in their unique contexts. As a result, IPA utilizes a small and purposeful
sample size (J. A. Smith, Flowers, & Larkin, 2009). It is also important to note that IPA also
recognizes the idea of symbolic interactionism (Blumer, 1969; Denzin, 1995) and how
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meanings are modified by people's prior experiences. This contrasts the behaviorist view
that human respond to stimuli without interpretation.
IPA combines concepts from phenomenological, hermeneutic, and idiographic philosophies
of knowledge. IPA embraces the uniqueness of each participant's experience by providing
flexibility within the interviews for participants and investigator. IPA recognizes the
importance of the double analysis taking place; the participants making sense of their
experience and the investigators making sense of the participants' making sense of their
experiences (J. A. Smith & Osborn, 2003, 2008). This combination appears to be the most
appropriate methodological fit for the researcher to study the lived experiences of individuals
who attend self-help conferences for PWS and their experiences of stuttering.
In summary, the previous section relates how the qualitative research paradigm can be
helpful and appropriate for studying the impact of self-help conferences for PWS. A review
of various stuttering questionnaires illustrates that questionnaires at their best, may give some
insight into an individual's stuttering, but does not provide the flexibility for an individual to
use their own words to describe their experience. Analyses of the stuttering literature as a
whole indicate an increasing trend toward the use of qualitative research. Thus, the many
advantages of qualitative research and specifically, IPA can be an excellent method of
inquiry to investigate people's experiences of attending self-help conferences for PWS and
their experiences of stuttering.
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2.7 Summary - Review of the Literature
The preceding review documents the justification for a broader view of stuttering, which
includes the intrinsic features of the disorder. Secondly, various measurement tools have
examined observable and intrinsic features of stuttering, however each of these strategies
present specific shortcomings, including their lack of flexibility to allow participants to
describe their perceptions of the experience of stuttering. The review of current treatment
strategies includes fluency shaping, stuttering modification, and cognitive restructuring, and
how they may relate to self-help activities. The impact of self-help on the various therapeutic
paradigms can only be conjectured. There is an obvious need to document, in detail, how
therapeutic outcomes are impacted by various self-help activities. It is also apparent that
stuttering management issues, like the client-clinicians relationship, the impact of a stuttering
clinician, and clarification of what the terms management and recovery even mean, can all be
contributing factors of clients' success. In addition, there is some documentation on self-help
organizations for PWS and their activities, along with the limited research of their impact on
PWS. Unfortunately, the sparse amount of literature on stuttering and self-help is impacted
by methodological limitations. Qualitative research may allow for richer and more detailed
descriptions of the impact of self-help for PWS. Qualitative methodologies, specifically IP A,
may thus be the best suited method of inquiry to complete a study on self-help conferences
for PWS from the perspective of individuals who stutter.
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2.8 Research Questions
Therefore, the following research questions are proposed:
1. What is the lived experience of those who attended a self-help conference(s) for
PWS from the perspective of a PWS?
2. What is the lived experience of stuttering, from the perspective of a PWS who has
attended a self-help conference(s) for PWS?
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3. METHODOLOGY
The last chapter was a review of the literature to demonstrate the necessity of an interpretive
phenomenological analysis (IPA) to investigate the experiences of adults who stutter who
attend self-help conferences. This chapter will review the methodology used to perform such
an investigation. The chapter will include: rationale for using IP A, information about the
participants, procedures used to collect and transcribe interviews, and procedures used for
analysis, interpretation, and validation.
3.1 Rationale for Using Interpretive Phenomenological Analysis
The advantages of a qualitative methodology were discussed previously and it was
determined that IP A was a well-suited method of inquiry to investigate the lived experiences
of adults who attend self-help conferences for PWS. The rationale for using a qualitative
methodology for this study is best summarized by the criteria provided by J. S. Damico and
Simmons-Mackie (2003). These criteria include that qualitative research: (a) is oriented
toward social phenomena; (b) uses data that is contextualized and authentic; (c) uses data that
is systematically collected (with flexibility); and (d) has the ability to describe in order to
effectively investigate the nature and function of social action.
The rationale for using IP A is that it aims to explore the details of how people make sense of
their personal and social worlds (J. A. Smith & Osborn, 2008). IP A aims to describe "the
perceptions and understanding of a particular group rather than prematurely make more
general claims. This is not to say that the IPA methodology is opposed to more general
claims for larger populations; it is just that it is committed to the painstaking analysis of cases
rather than jumping to generalizations" (J. A. Smith & Osborn, 2008, pp. 55-56). This is
known as an idographic mode of inquiry as opposed to a nomothetic approach. This study,
which aims to explore people's experiences of having attended a self-help conference(s) for
PWS, needs to embrace the complexities of each of the participants' perceptions. This is
important because of the countless ways that self-help conferences can be experienced. One
can say that conference experiences vary because of the different ways that organizations run
their conferences, the change in conference venues, the changes in the planned workshops
and activities, the variance in the people who attend from year to year, the variety of planned
workshops activities within each conference, the variety of unplanned social events, the
differences in people that one meets, and many other factors that make each conference
unique. However, the most important differences is that people arrive at a conference with
different experiences and therefore have different perceptions of the same objective or
physical experience of attending a self-help conference for PWS.
In other words, two friends who attend the conference together and do everything together
while at the conference will not have identical experiences of the conference as a whole.
They will not even have identical experiences of watching the same workshop. In A. P.
Giorgi's (1997) view, phenomenological studies are important because of these differences in
experience and perceptions. He uses a simple example of art to illustrate this point. He
explains how two individuals looking at the same piece of art can experience the art in
different ways. One can consider the art to be "ugly" while the other one considers it to be
"beautiful."
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With phenomenology as one of the major knowledge philosophies of IP A, it makes sense
that Husserl's (1980) goal of phenomenology, serves as a primary rationale for using IPA as
a research methodology for this study. Husserl's goal was to study social phenomena
through the interpretations of the individuals experiencing the phenomena of interest. This
requires the investigator to suspend judgments of objective reality. This is similar to James'
(1977) radical empiricism idea that human experience supersedes psychological and
scientific preconceptions and that interpretive experiences should be examined as
communicated by the one experiencing the phenomena (Robinson, 1985). In other words,
one of the advantages of phenomenology is having the ability to explore social phenomena in
a system of interrelated meaning (Ashworth, 2000; A. P. Giorgi, 1997). Phenomenology
aims to understand how individuals construct meaning through social interactions, thus
grounding the meanings in human actions. The primary investigator believes IPA to be the
best suited method of inquiry for this study because it keeps the primary focus on the
communicated interpretations of the individual experiencing the phenomena. This helps to
protect the authenticity of the lived experience or the phenomena of interest. By focusing on
the "lifeworld," the world and the events of interest in it are explored through the interpretive
lens of the participant (A. P. Giorgi & B. M. Giorgi, 2005). This requires the investigator to
recognize and set aside his own beliefs. In order to get as close as possible to the
participants' experiences, as suggested by Husserl (1980), semi-structured interviews were
used to collect the communicated experience or narrative account of the participants
experiencing the phenomena. These narrative accounts will then be subject to a systematic
analysis, which will be discussed later.
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A rationale for using IP A should also explain the importance of the other two major
philosophical ideologies for which IPA is based upon, hermeneutics and idiography.
Hermeneutics is the theory of interpretation. One of the most notable hermeneutic
phenomenologists, Heidegger (1962/1927) makes the point that interpretations are always
subject to the previous experiences of the interpreteds). This viewpoint embraces the
balance between personal perspectives, while seeking similarities of an experience. J. A.
Smith and Osborn (2008) refer to the two levels of interpretation or double hermeneutics that
exist in IPA, the interpretation of the participant experiencing the phenomena making
meaning of the experience, and the investigator interpreting the grammatical and
psychological (Schleiermacher, 1998) aspects of the participant to understand the participants
at a level that goes beyond their own interpretations. Lastly, idiography focuses on the
particular rather than the attempting to make broad generalizations to a large group or
population. It embraces the unique context of the participant to facilitate understanding their
experience (J. A. Smith, Flowers, & Larkin, 2009). As a result IPA makes use of a small,
purposeful sample size.
Understanding the three major philosophies for which IPA is based are all important in
understanding the rationale for the use of IPA. All three philosophies - phenomenology,
hermeneutics, and idiography are used together in the facilitation of IPA's "theoretical
commitment to the person as a cognitive, linguistic affective, and physical being" and helps
assume "a chain of connection between people's talk and their thinking and emotional state"
(J. A. Smith & Osborn, 2008, p. 54).
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3.2 Data Collection
In using IPA it is important to collect data in a manner that preserves the richness and
authenticity of the data while giving participants flexibility to describe their experiences in
detail and the investigator the flexibility to delve into topics that he or she deem to be
interesting. The purpose of the data collection process in IPA is to collect data that details
"how participants perceive and make sense of things which are happening to them" (J. A.
Smith & Osborn, 2008, p. 57). There are several methods of data collection for IPA
(Plummer, 2001) including personal accounts and diaries (J. A. Smith & Osborn, 2008). One
of the best suited methods for data collection for IPA is through semi-structured interviews.
This allows participant and investigator to engage in a dialogue that is loosely guided by a
schedule of questions. Based on the participant responses, the investigator is able to modify
questions to probe important or interesting topics that may not have been discussed if a
structured interview format was used (J. A. Smith & Osborn, 2008). As a result semistructured interviews will serve as the foundation for understanding the socially constructed
meanings that emerge from the participants' lived experiences of self-help conferences and
of stuttering (Janesick, 1994).
3.2.1 Advantages of Semi-Structured Interviews
Semi-structured interviews were used in this study and allowed the investigator to engage
each participant in the data collection process within an IPA. Semi-structured interviews
enabled the investigator and participants to cover a schedule of topics created by the
investigator, while providing the flexibility needed to explore specific topics that emerged
and were unique to each interview. These semi-structured interviews were developed in
136
accordance with J. A. Smith and Osborn (2003). According to J. A. Smith and Osborn
(2003), semi-structured interviews should be guided by both a set of prepared, open-ended
questions and the responses given by the participants. This allows the investigator to develop
a rapport with participants and maintain a flow of conversation during the interview. The
advantages of using semi-structured interviews as the method of data collection include: (a)
they include a set of questions that will guide but not dictate the interview; (b) they are
conducive to building a rapport with participants; (c) they allow for flexibility so
investigators can probe areas of interest as they arise; (d) they allow participants to discuss
topics that may not have otherwise been communicated; and (e) they produce rich data which
best suit an IPA.
According to Tetnowski and J. S. Damico (2001) one of the advantages of qualitative
research in general, including an IPA, is that the investigator is the key instrument of data
collection. Being that in many cases, including this investigation, the primary investigator is
also the interpreter of the data, it is important for the researcher to "approach the research
activity with an open stance" (pp. 22-23). Therefore it is important to describe the
background of the interviewing investigator for the purposes of understanding the lens
through which the planned and unplanned questions are asked and understood.
The interviewing investigator is a male adult who stutters. He received his Bachelor's degree
in accounting and a Master's degree in Speech-Language Pathology. He was raised and
primarily resided in New York throughout most of the interview processes. He received
various fluency shaping therapies in elementary school before completing, a 3-week
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intensive program, the Precision Fluency Shaping Program (PFSP), which resulted in fluent
speech. Despite attending self-help practice groups (i.e. First Amendment Group of Long
Island) and several one-week refresher courses of PFSP the interviewing investigator was not
able to maintain the level of fluency he had originally aspired to and often felt
"unsuccessful." While in college pursuing his Bachelor's Degree in accounting, he was
active in a therapy/support group. During this period he began speaking about his
experiences of stuttering and therapy to SLP students. He continued speaking about his
experiences at various universities after graduating with his Bachelor's degree. Eventually
he decided to pursue speech-language pathology as a career. Knowing he wanted to
specialize in fluency disorders, he wanted to learn more about other therapies and self-help
for PWS. He became immediately involved with the NSA and Friends, while becoming a
fan of Our Time Theatre Company productions. His experiences have guided him to lead
and co-lead self-help groups in Queens, NY and Lafayette, LA, respectively. In 2008, his
chapter was recognized by the NSA as "Chapter of the Year." He has also co-hosted
Friends' 2008 national self-help conference and two NSA regional self-help workshops.
Lastly, he has published and presented at national and international conferences, primarily
about self-help for PWS.
The background of the interviewing investigator puts him in an ideal position to lead the
semi-structured interview down avenues that may lead to a deeper understanding of the
experience of the participant. His experiences lend himself to insightful questions about the
participants' experiences of stuttering, therapy, and of self-help activities. However, the
investigator must be careful not to allow his personal experiences of self-help activities to
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bias his questions or interpretations and should therefore not make assumptions about the
participants' experiences.
3.2.2 Interview Development
In developing a set of questions to guide the semi-structured interviews, the investigator
produced pertinent questions to learn about the participants' background and their
perspectives of self-help conferences for PWS. The investigator conducted a pilot interview
with a volunteer who fit the inclusion criteria for this study. The pilot interview was not
analyzed as part of the results; however it did help the investigator to refine questions and to
sequence them to facilitate conversational flow. The resulting schedule of topics is listed in
Table 4.
Table 4. Schedule of Topics for Semi-Structured Interviews
Subtopics
Topics
Introduction
Life as a PWS
History of therapy describe, length of time
First self-help
conference
Post-first conference
Subsequent Conferences
Future Conferences
Tell me about yourself, Family
General; Childhood - school, friends; Adulthood -job/career,
relationships
School; Out of school; Adulthood; Other therapy related to
stuttering; Support - child, adult, groups
Tell me about your first conference; How you decided to
attend; Expectations; Noteworthy aspects; Who did you go
with
Tell me what happened when you got home from the
conference; Reactions - family, friends, job/career; Tell me
about your speech - anything else about the way you
communicate
Share your experience of other conferences - Tell my why you
continue to attend, expectations, noteworthy aspects, who did
you go with, compare your experience of your first conference
to others, take me through a typical conference; reflect upon
yourself before having attended your first conference
What are your thoughts on attending future conferences - what
will you do at the next conference; What do you consider in
deciding on attending or not attending
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The sequence of the questions was designed to touch upon several topics about their
experiences with stuttering and therapy and then to lead participants to discuss their
experience of self-help conferences for PWS, the latest topic, being about support, was most
related to self-help conferences for smoother transition into the primary focus of the study.
The sequence allowed the investigator time to build a rapport with the participants to obtain
honest and open responses before discussing their experience of self-help conference(s). The
sequence also placed the topic of self-help conferences later on the schedule of topics to
reduce the perception that self-help conferences were the primary focus of the interview
therefore minimizing participant bias favoring the topic of interest. The investigator used
neutrally-worded phrasing such as "tell me about," to allow for both positive and negative
responses to minimize bias responses.
3.2.3 Interview Procedure
Before the interview, participants were asked to complete an information form and to sign a
consent form informing participants that the study was related to the experience of self-help
conferences for PWS. Since the investigator anticipated that participants would bring up
topics that did not follow order on the schedule of topics, tracking the interview was
necessary to ensure that all topics on the schedule were covered. Therefore, the investigator
also told participants that he was going to check off the topics that were covered throughout
the interview (during conversational breaks). The investigator verbalized this to participants
to minimize any apprehension, nervousness, or skepticism about the investigator's intentions.
Interviews were recorded with participants' verbal consent, using an Olympus Digital Voice
Recorder (VN-3100PC).
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The investigator used J. A. Smith and Osborn's (2003) guidelines of semi-structured
interviews. The guidelines include interview techniques such as:
a. Giving time for the participant to develop their points; do not rush dialogue;
b. Encourage expansion of the discussion and descriptions with minimal probes and
"back-channeling"; Use questions only when discussion threads run out or to
introduce another point or topic.
c. Ask single, open-ended questions for inquiries. Direct questions should be
reserved for seeking clarification.
d. Monitor affective reactions (e.g. nonverbal behaviors, contextualization cues)
throughout the interview for the participants' comfortable level when discussing
topics. If participant appears to be uncomfortable the investigator should allow
the participant to drop the topic; the investigator may decide to return to the topic
in another way through another relevant topic in the interview.
In keeping with the J. A. Smith and Osborn (2003) guidelines, the primary investigator
interviewed each participant face-to-face, in or near the participant's residence, in a quiet
room, without predetermined time constraints. Participants were encouraged to choose the
interview sites that were most convenient for them and were quiet with minimal
interruptions. This setting would be optimal for the purposes of sharing personal experiences
and recording. The 2008 NSA conference was the preferred site of some participants;
however the investigator eliminated this as a feasible interview site because the context of a
self-help conference: (a) could potentially be distracting to either the participant or
investigator, (b) has the potential for the investigator to formulate bias questions or prompts,
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and/or (c) has the potential for participants to bias their responses. Interviews were mostly
conducted at the homes of the participants, but also included a participant's office at work,
and a university near a participant's residence. Interview lengths averaged 87 minutes 20
seconds (SD=25:43), with the median interview of 85 minutes 30 seconds. Interviews
ranged from 50 to 148 minutes. The investigator asked open-ended questions when
necessary and one at a time. Participants' responses often included discussion of topics or
subtopics that were on the schedule without being prompted. Upon completion of an answer
the investigator asked or prompted the participant to discuss either (a) an unlisted topic of
interest mentioned by the participant, (b) related subtopics on the schedule, or (c) the next
logical topic on the schedule based on what the investigator thought would maintain the flow
of conversation. This data collection technique allows the participant to have the freedom to
give complete answers in their own words, while allowing the investigator the freedom to
delve into unlisted topics of interest and the freedom to eventually prompt the participant to
discuss all topics and subtopics on the schedule.
3.2.4 Interview Timing
As for the timing of the interviews, the investigator used G. Andrews and Harvey's (1981)
study as a guiding resource. Their results revealed that spontaneous remission is relatively
stable between 3 and 15 months before treatment. The study concluded that post treatment
assessments should be conducted at least 3 months post treatment to allow for spontaneous
remission effects to subside; therefore remaining effects to primarily be from treatment. In
this investigation, attendance of self-help conference(s) for PWS is the treatment. Despite
the many differences between G. Andrews and Harvey's study and the study in this
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manuscript, (e.g. type of "treatment," measurements taken, and waiting time differences
before treatment), the investigator found it to be prudent to use these time frames to conduct
semi-structured interviews.
In following the guidelines derived from G. Andrews and Harvey (1981), the investigator set
a time range for which participants needed to be interviewed. In accommodating participants
and using the general guidelines provided by G. Andrews and Harvey, the investigator
selected a post-conference (last conference attended) time range of 4 months to 18 months
before interviewing participants. Even though 18 months falls outside of the range studied
by G. Andrews and Harvey (1981), the investigator determined this length of time was still
reasonable in relation to the time frame derived from G. Andrews and Harvey and was
necessary to accommodate the participants. All interviews were conducted between June
2008 and December 2008.
3.3 Participants
Researchers who use IPA have debated an appropriate sample size. J. A. Smith and Osborn
(2008) state that there is no right answer to the question. They suggest that many researchers
realize that the detailed interpretative account of each of the transcripts will realistically only
allow for a very small sample. They refer to published IPA studies that have ranged in
sample sizes from 1 to more than 15. Osborn and J. A. Smith (1998) state that the size
should depend on: (a) the degree of commitment to the case study level of analysis and
reporting, (b) the richness of the individual cases, and (c) the constraints one is operating
under. Using these guidelines the investigator determined 12 participants to be sufficient for
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this study. The method of sampling used was convenience sampling. Inclusion criteria were
that participants needed to: (a) be at least 18 years old, (b) attend at least one self-help
conference for PWS, and (c) consider him or herself to be an individual who stutters. Some
participants were recruited from a related, NS ARC-approved study of adults who attended
the 2007 NSA Conference in Atlanta, GA. Additional participants who fit the criteria were
recruited from through the self-help community of PWS based on availability as part of the
convenience sample. Institutional Review Board (IRB) approval was obtained from the
University of Louisiana at Lafayette.
Each of the 12 participants was assigned a pseudonym to protect their identity. A summary
of the participants is in Table 5. The information in this table includes the participants'
pseudonyms, approximate age, gender, basic description of their occupation, and the number
of years they have attended self-help conferences for PWS. Information such as names, ages,
and specific job descriptions were purposely obscured to help protect the identities of the
participants.
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Table 5. Participant Information (at time of interview)
Gender /
Occupation
Name
Age
(#)
Years Attending
Self-Help
Conferences
1
Alex
M
Licensed professional,
Business Owner
mid
50s
(1)
Bill
1
M
Law enforcement,
Supervisor
mid 30s
(2)
1
Connor
M
Researcher,
early 40s
Lecturer
(3)
Dylan
M
Teacher
8
early 30s
(4)
Licensed professional
1
Evan
M
mid 30s
(5)
M
Manufacturing Manager - retired;
12
Fred
early 70s
Service company, Assistant Manager
(6)
2
F
Professional,
Gilda
early 30s
banking & finance
(7)
Hayley
F
Service company, Self-employed
7
early 50s
(8)
2*
Speech-Language Pathologist (SLP)
Isabelle
F
mid 40s
(9)
SLP
F
7
Jackie
mid 20s
(10)
Ken
M
Professional,
15**
early
50s
banking
&
finance
(11)
2***
SLP
Lynn
F
mid 20s
(12)
* Note: attended two conferences including only 1 day at one of the conferences (both NSA)
**Note: attended two self-help conferences per year for the last 10 years (NSA, Speak Easy)
***Note: attended two self-help conferences per year for all 3 years (NSA, Friends)
The average age of the participants is the study was 41.8 years old (SD=14.3), with a median
age of 38 years old. The approximate age range in years is from mid 20s to early 70s. The
average amount of years of attending self-help conferences for the participants is 5 years
(SD=4.7), with a median amount of years attending being 2.5 years. The range of the amount
of years of attending self-help conferences was between 1 to 17 years.
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In addition to the factors presented on this table, it is important to note the countless other
factors that play a role in the experiences of conference attendees. Below, each participant
has been described in further detail, including variables as: type of therapy approach in the
past, length of therapy, experiences with other self-help activities (i.e. groups or workshops)
or supportive groups, experiences with differing self-help organizations, and even the
number of self-help conferences attended per year. This information is important for the
purposes of trying to understanding the perspectives' of the individual participants since
conclusions for this study cannot be generalized.
Participant #1, Alex, a male in his mid 50s, has been married for approximately 30 years. He
received his Bachelor's degree and is a licensed professional who owns his own business.
He is originally from the Central-North region of the U.S. and resides in the Southeast. He
began therapy between the ages of 4 and 6 and continued again at 14, but was not able to
recall the type of therapy received. At 16, he received fluency shaping therapy, and from 19
to 24, he received a combination of both fluency shaping therapy and stuttering modification
therapy. From 28 to 30, he received a counseling-based approach to speech therapy. He
participated in a local support group in 1999 (mid 40s) which his clinician led and then
became involved in an NSA chapter in 2007 and has remained active. Alex attended his first
national self-help conference for PWS in 2007 (NSA) and was interviewed 12 months later
during the week before the 2008 NSA conference. Since the interview Alex has attended the
2008, 2009, and 2010 NSA conferences.
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Participant #2, Bill, a male in his mid 30s, has been married for approximately 10 years. He
received his Master's degree and is a supervisor in law enforcement. He is originally from
the Mid-Atlantic region of the U.S. and resides in the Southeast. He received fluency
shaping therapy from ages 7 to 12 and again from 25 to 28. He participated in a local support
group run by an SLP in 2001 (late 20s) and then became involved in an NSA chapter in 2007
and has remained active. Bill attended his first national self-help conference for PWS in
2007 (NSA) and was interviewed 12 months later during the week before the 2008 NSA
conference. Since the interview Bill has attended the 2008, 2009, and 2010 NSA
conferences.
Participant #3, Conner, is a single male in his early 40s. He received his PhD and is a
researcher as well as a lecturer. He is originally from and resides in the Southeast region of
the U.S. As a child, Conner sporadically received various fluency shaping therapies. In his
early 20s, he attended a 3-week intensive fluency shaping program and repeated the program
in his late 30s. In his early 40s, he received speech therapy that focused on both counseling
and fluency shaping skills. He participated in a local support group in 1994 (late 20s) and an
NSA chapter in 2006 and has remained active. Conner attended his first national self-help
conference for PWS in 2007 (NSA) and was interviewed 12 months later during the week
before the 2008 NSA conference. Since the interview Conner has attended the 2008 and
2009 NSA conferences.
Participant #4, Dylan, is a single male in his early 30s. He received his Bachelor's degree
and works as a teacher. He is originally from and resides in the New England region of the
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U.S. Dylan received fluency shaping therapy from ages 5 to 15. At 15, he attended a 3/4week intensive fluency shaping program. In his early 20s, he received fluency shaping
therapy for 3 months. Dylan participated in an NSA chapter from 2004 (mid 20s) to 2008.
He has attended a national self-help conference for PWS from 2001 to 2008 (NSA) and was
interviewed 4.5 months after the 2008 conference. Dylan has not attended any self-help
conferences for stuttering since 2008.
Participant #5, Evan, is a single male in his mid 30s. He received his Bachelor's degree and
works as a licensed professional. He is originally from Southeast Europe and resides in the
New England region of the U.S. At 19 years of age, Evan attended a 2-day fluency shaping
program in Europe. Evan moved to the United States in the mid 1990s. He attended another
2-day fluency shaping program at 24, a 3-week intensive fluency shaping program at 26, and
a 4-day fluency shaping and counseling program at 33. He participated in an NSA chapter
from 2002 to 2005 and then attended about five meetings from 2005 to 2008 at another
chapter because he moved to another area within the New England region. Evan attended his
first national self-help conference for PWS in 2007 (NSA) and was interviewed 16.5 months
later. Evan has not attended any self-help conferences for stuttering since 2007.
Participant #6, Fred, a male in his early 70s, has been married for approximately 50 years.
He received his Associate's degree and is a retired manufacturing manager. He currently
works as an assistant manager for a service company. He is originally from and resides in the
New England region of the U.S. At 15 years of age, Fred attended a 5-week fluency shaping
program in Canada. In his mid 30s, he received fluency shaping therapy for 1 year. Fred
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participated in an NSA chapter from the mid 1980s (late 40s) to present. In the late 1990s
and early 2000s, he attended two NSA workshops. Fred has attended a national self-help
conference for PWS from 1997 to 2008 (NSA) and was interviewed 4.5 months after the
2008 NSA conference. Since the interview he has attended the 2009 and 2010 NSA
conferences.
Participant #7, Gilda, is a single female in her early 30s. She received her Bachelor's degree
and works as a professional in banking and finance. She is originally from the Caribbean
Islands, moved to the United States when she was 3 years old. She resides in the New
England region of the U.S. At 18 years of age, Gilda received fluency shaping therapy for 3
months. She participated in an NSA chapter from 2007 (early 30s) to present. Gilda attended
a national self-help conference for PWS in 2007 and 2008 (NSA) and was interviewed 4.5
months after the 2008 conference. Gilda has not attended any self-help conferences for
stuttering since 2008.
Participant #8, Hay ley, is a single female in her early 50s. She received her Master's degree
and is the sole proprietor of a service company. She is originally from and resides in the
New England region of the U.S. From ages 7 to 11, Hayley received various fluency shaping
therapies. In her early 30s, she continued to receive various fluency shaping therapies for 2
years. In her late 30s, she attended 2 weeks of a VA week intensive fluency shaping
program. Hayley attended the national self-help conference for PWS from 1997 (early 40s)
to 2001 (NSA) and then continued from 2007 to 2008. She participated in an NSA chapter
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from 2007 to present. She was interviewed 4.5 months after the 2008 NSA conference. Since
the interview Hayley has attended the 2009 and 2010 NSA conferences.
Participant #9, Isabelle, a female in her mid 40s, has been married for approximately 15
years. She received her Master's degree and works as a Speech-Language Pathologist. She is
originally from and resides in the New England region of the U.S. At ages 4 and 10, Isabelle
received therapy but was not able to recall the type of therapy received. At 16, she received
fluency shaping therapy for 1 year. Isabelle attended a 2-day fluency shaping program at 18.
At 19, she received fluency shaping therapy for 9 months. Isabelle attended a 3-week
intensive fluency shaping program at 25. At ages 28 and 33, she attended a 1-week fluency
shaping refresher course. Isabelle participated in a local practice group from 1982 (late
teens) to 1984, and an NSA chapter from 2006 to present. She attended her first national
self-help conference for PWS in 2007 (NSA) and returned to the NSA conference in 2008 for
one day. Isabelle was interviewed 5.5 months after the 2008 conference. She has not
attended any self-help conferences for stuttering since 2008.
Participant #10, Jackie, is a single female in her mid 20s. She received her Master's degree
and works as a Speech-Language Pathologist. She is originally from and resides in the New
England region of the U.S. She began therapy between the ages of 3 and 4 but was not able
to recall the type of therapy received. From 5 to 12, Jackie received various fluency shaping
therapies. From 15 to 16, she received therapy that was a combination of both counseling
and fluency shaping skills. At 17, she attended a 3-week program which integrated stuttering
modification and fluency shaping skills. In 2001 (mid teens) Jackie attended a Friends 1-day
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workshop. She also participated in a local support group from 2001 to present. She attended
a national self-help conference for PWS from 2001 to 2006 (NSA) and again in 2008. Jackie
was interviewed 6 months after the 2008 NSA conference. Since the interview she has
attended the 2009 NSA conference.
Participant #11, Ken, is a single male in his early 50s. He received his Bachelor's degree and
works as a professional in banking and finance. He is originally from and resides in the New
England region of the U.S. From ages 33 to 34, Ken received various fluency shaping
therapies. He then continued to receive various fluency shaping therapies from 37 to 38. He
participated in a Speak Easy self-help group from 1994 (late 30s) to present. Ken has
attended national self-help conferences (or symposiums) for PWS of two organizations. He
has attended Speak Easy Symposiums from 1994 to 2008 and NSA conferences from 1999 to
2008. He was interviewed 6 months after the 2008 NSA conference. Since the interview
Ken has attended the 2009 Speak Easy Symposium, and the 2009 and 2010 NSA
conferences.
Participant #12, Lynn, is a single female in her mid 20s. She received her Bachelor's degree
and is a Speech-Language Pathologist student. She is originally from and resides in the New
England region of the U.S. At 18 years of age, Lynn received fluency shaping therapy for 1
month and then attended a 2-day fluency shaping program. At 23, she received stuttering
modification therapy for 3 months. Lynn participated in a local self-help group and two NSA
chapters from 2005 (early 20s) to 2007. She also attended three Friends workshops from
2006 to 2007. Lynn has attended national self-help conferences for PWS from two
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organizations. She attended both the NSA and Friends conferences from 2006 to 2008. She
was interviewed 5 months after the 2008 Friends conference. Since the interview she has
attended the 2009 NSA and Friends conferences.
3.4 Transcription, Analysis, and Interpretation
In the transcription process, the audio data was collected with an Olympus Digital Voice
Recorder (VN-3100PC), then transferred to the Olympus Digital Wave Player (Version 2.1.0,
Copyright © 2001-2006; Olympus Imaging Corp.) and imported into Transcribe! (Version
7.50 for Windows, Copyright © 1998-2008; Seventh String Software). This software
facilitated transcription by giving the investigator control over the speed of the audio
playback and by making replay easier to control. The primary investigator transcribed each
interview verbatim. The amount of disfluencies such as part-word repetitions, mono or
multisyllabic word repetitions, audible blocks, prolongations, interjections, and phrase
repetitions, were reduced in the transcription since the focus of the study was on the
experiences of PWS and not the disfluencies of the participants. The transcriptions were
completed by listening to each interview at least two times, but typically more than twice
until an exact transcription could be assured. The audio interview data was transcribed to
Microsoft ® Office Word 2007 and saved as a rich text format file (.rtf).
Transcriptions of the interviews were then de-identified to help protect the identities of the
participants and any non-public figures mentioned in the interviews. De-identification
becomes even more important because of the small population who attend self-help
conferences for PWS and the potential for many attendees to be familiar with the details of
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each other's lives. As a result, the investigator changed, blurred, or removed as much
identifying information as possible while trying not to disrupt the relevant portions of the
interviews. Such information includes but is not limited to: names, ages, and specific
locations. Any such changes to the original transcripts have been italicized throughout the
transcripts (See Appendices A-L).
The data collection and analytical procedures within an IPA provide the capability to analyze
the transcribed data on several levels. In this study, semi-structured interviews provide
flexibility in the investigation of individuals' verbalized experiences of the phenomenon of
self-help conferences for PWS. Procedures help the investigator gain insight to how
individuals make sense of their personal and social worlds through the lens of each of their
individual "lifeworlds" (J. A. Smith & Osborn, 2003). In addition the investigator recognizes
the necessity of the recurring process of data collection, analysis, and interpretation in
refining the findings to report on the most relevant data to better understand the lived
experience of self-help conferences and stuttering from the perspective of PWS. This idea is
similar to the constant comparative method originally used in grounded theory (Glaser &
Strauss, 1967).
J. A. Smith and Osborn's (2003) guidelines to data analysis in phenomenological studies
were used with minor revisions. These steps are outlined as follows.
1. Transcripts were reviewed multiple times in the initial stages to become familiar
with the contents.
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2. Interesting or significant quotes were documented. The left hand margin is
suggested for use; however the investigator documented this in the qualitative
software, Atlas.ti © (Version 6.0.21) for better organization and easier recall for
the investigator.
3. After statements were reviewed multiple times, emerging themes were noted.
The right hand is suggested for use; however the investigator also noted emerging
themes into Atlas.ti (Version 6.0.21) for better organization and easier recall for
the investigator.
4. Initial notes were turned into precise statements made by the participants that
reflect what was found in the text.
5. Once themes emerged, the researcher sought to make connections between
themes.
6. Similar themes were combined, while others remain. The transcript was checked
to insure that these connections are in line with the actual dialogue.
7. The compilations of directories delineating actual phrases from participants that
connect with the emergent themes (and subordinate themes) were extremely
useful and allowed "iterative" analysis to take place.
8. This produced a table of themes with overall names of the themes that were
combined. Employing identifier themes allowed for finding the original source in
the actual transcript. Some themes were eliminated because they were a poor fit
or were not well established.
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9. After analysis, the investigator decided which themes to focus on. This decision
was not only be based on the prevalence of data, but also the richness of the data
that highlight the themes to help shed light on other aspects of the account.
10. Themes were then explained by the investigator's narrative which was supported
and illustrated by verbatim excerpts from participants.
Through these procedures, explained by J. A. Smith and Osborn (2003), the investigator
was able to go from participant transcripts, to creating unique codes, to creating, refining,
explaining, and supporting themes. This procedure recognizes the complexity of social
action and seeks to "find out how individuals are perceiving the particular situations they
are facing, how they are making sense of their personal and social world" (J. A. Smith &
Osborn, 2008, p. 55).
3.5 Equipment and Software
The previous sections have briefly mentioned the equipment and software that have been
used in the context of the procedure being performed. This section is simply a compilation
of all the equipment and software used in this study with a brief description of its function
in the investigation.
An Olympus Digital Voice Recorder (VN-3100PC) was used to digitally record each of the
participants with their full consent. Recordings were then transferred from recorder to the
Olympus Digital Wave Player (Version 2.1.0, Copyright © 2001-2006; Olympus Imaging
Corp.) for storage. Audio data was then imported into Transcribe! (Version 7.50 for
Windows, Copyright © 1998-2008; Seventh String Software). This software facilitated
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transcription by giving the investigator control over the speed of the audio playback and by
making replay easier to control. The audio was transcribed into Microsoft ® Office Word
2007 and eventually saved in rich text format. These files were then imported into Atlas.ti
© (Version 6.0.21). Atlas.ti was used to streamline the coding process in an efficient
manner, making the tagging (non-analytical portion of coding) of quotes easier. Atlas.ti
also allowed the investigators to view similarly coded data in report form, making it easier
for the investigator to collapse or merge codes and to recognize emerging themes.
3.6 Credibility
To ensure the credibility of the study, the procedures described by Lincoln and Guba (1985)
and outlined by Creswell (2003) have been adopted. This procedure has also been used by
Corcoran and M. Stewart (1998) and Plexico, Manning, & DiLollo (2005), to describe the
lived-experiences of stuttering and successful stuttering management, respectively. The 4step procedure is as follows: (1) interviews were recorded and transcribed; (2) biases have
been acknowledged through "bracketing" to minimize imposing a priori hypotheses on the
participants' experience; (3) investigator triangulation was achieved by having two
investigators from different backgrounds separately reviewing the transcripts to minimize
sharing biases and deriving their own results before a reconciliation occurs; and (4)
"member checking" was used to help ensure valid interpretation of utterances within
participants' transcripts. In member checking the investigator sent (emails) participants the
proposed themes along with their supporting quotes to each of them and asked them to
review and comment to determine if they were consistent with the participants'
experiences. Participants agreed with the results.
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In phenomenological studies including IP A, it is imperative that the researchers set aside
any preconceptions about the phenomena that they will be investigating. As discussed in
the last paragraph, this step is called bracketing (Step #2) or trying to achieve a "natural
attitude." In a qualitative research paradigm the primary investigator is the main tool of
data collection. The same experiences that gave the investigator insight (previously
highlighted in 3.2.1) to guide the interview to interesting topics can also result in bias
during interviews, analysis, or interpretation of the data. After minimizing such biases of
the investigator through the process of "bracketing," the investigator has also provided
transcribed data (Appendices A-L) from which they can draw their own interpretations.
3.7 Summary - Methodology
This chapter reviewed the methods of IPA and rationalizes this method to be well-suited for
this investigation, because the method is consistent with the research questions proposed.
The chapter begins by discussing the rationale for using IPA for the study. The data
collection section reviews the advantages of semi-structured interviews, the development of
the interview, how the interviews were conducted, and the timing of the interviews in
relation to the last conference attended by the participants. The participants section
describes the inclusion criteria and descriptions of the participants. The next section
discusses the transcription process, and how the transcripts were analyzed and interpreted.
This section also describes how these recurring procedures help to refine the finished
product. An equipment and software section was included to compile such information into
one section to describe their function in the grand scheme of the study. Finally, the
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validation or credibility section, lays out the steps that have been taken to confirm the
findings of the study. The next chapter will present what the results of the study.
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4. RESULTS
The primary purpose of the study was to improve our understanding of peoples' lived
experience of attending self-help conferences for PWS. In addition, the study was also aimed
to understand the lived experience of stuttering for the people who attend self-help
conferences for PWS. This second component was added because it is imperative to
understand the type of people who actually do attend a self-help conference for PWS. This
subgroup of all PWS may be different from the total population of PWS. Therefore,
descriptions of the lived experience of stuttering are given to simply provide a more complete
picture of the participants used in this study. This data may help researchers and clinicians
better understand the lived experiences of people who do attend self-help conferences for
PWS.
After reviewing transcripts from the 12 participants several major themes emerged. Themes
were divided into two sections; each section related to the two research questions about
people's experiences of the self-help conference for PWS and the experiences of stuttering
for conference attendees. Due to the qualitative nature of this study and the complexity of
the social phenomena, themes and subordinate themes will be interrelated with participant
quotations. Some of the quotations may support multiple themes within and across both
major sections. For the purposes of clarity, the term experience or lived experience will
include any social phenomena described by the participants related to their attendance at a
self-help conference for PWS. The rationale being that various thoughts, feelings, attitudes,
actions, and other experiences verbalized by the participants would be related to the actual
experience of attending a self-help conference, and the impact that it may have had on their
lives. These thoughts, feelings, attitudes, and actions may have been realized for the first
time, or they may have shifted following their attendance at a self-help conference.
Therefore, these serve as the basis for this study. Since this phenomenon has yet to be
studied for PWS, the following results are the first look at how attendance at a self-help
conference for PWS impacts the actual people who attend such a conference.
Based on the interview schedule used and described in Chapter 3, the transcriptions
(Appendices A-L) demonstrate that participants not only gave their rendition of their selfhelp conference(s) experience or their experience of stuttering, but that they also spoke about
various topics that may be indirectly related to stuttering or self-help. However, the
emphasis in this chapter will be to discuss the various themes and subordinate themes related
to the two major research questions. Themes and subordinate themes will be supported by
quotes from the participants. In some cases contextual information will be added for clarity
for the reader. Contextual information will be included in parentheses. Backchannels
(Sacks, Schegloff, & Jefferson, 1974), such as "mhm" and "okay," were used by the
investigator (listener) to acknowledge the participant (speaker) continued turn in the
conversation or to acknowledge that the investigator understood the verbalized message
whether it was disfluent or not. These short utterances were not pertinent in the relay of
information in the discourse and were therefore eliminated from the supporting quotes of the
themes and subordinate themes for conciseness.
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4.1 Participants' Experiences Having Attended Self-Help Conferences for PWS
The first category of themes and subordinate themes helps to answer the primary question of
this study - From the perspective of a PWS, what is the lived experience of those who
attended self-help conference(s) for PWS? The major themes along with their subordinate
themes within this category are:
1.
2.
Socializing Opportunities with Other People Who Stutter
a.
Meeting people/making friends
b.
Social gatherings (conference planned/spontaneous)
c.
Extreme socializing
d.
Post-conference socializing
Affiliation
a.
Bonding experience
b.
Desire to reunite
c.
Expansion of community
3.
Shifting Roles
4.
Changing Feelings
5.
Redefining Oneself
a.
Improved self-perspective
b.
Increased self-esteem
c.
Self-acceptance
d.
Increased risk taking
e.
Self-realization
f.
Feelings of freedom
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These themes and subordinate themes are described in the next section. Participant
quotations from the transcripts will be used to illustrate them. The rich nature of the
qualitative data results in themes and subordinate themes that overlap. In turn, this makes it
possible for a quotation to fit into multiple themes or subordinate themes. The primary
investigator selected examples to illustrate themes and subordinate themes by using a wide
variety of quotes from the data. Quotes are not necessarily limited to the one or two themes
or subordinate themes that they were used to exemplify. The social complexity of the quotes
allows them to fit into multiple themes and subordinate themes.
4.1.1 Socializing Opportunities with Other PWS
Unique socializing opportunities describe how participants view self-help conferences as a
forum for conversing and building friendships with other PWS. Being that this is a self-help
conference for PWS where most of the participants are PWS (or parents of a CWS) this
socializing is of a distinctive nature. These opportunities provide PWS to have unique social
interactions. This theme encompasses the range of interactions which include the first
interaction of meeting people and making new friends to continuing to socialize with friends
after a conference. Participant interviews also revealed the following subordinate themes: (a)
meeting people/making friends, (b) social gatherings (conference planned/spontaneous), (c)
extreme socializing, and (d) post-conference socializing. These subordinate themes will be
discussed. Supporting participant quotations will be provided.
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4.1.1.1 Meeting People/Making Friends
Participants report continued socializing beyond the time frame of self-help conferences. All
12 participants disclosed experiences of meeting many people and making new friends from
the conferences including their first. This theme may seem unimportant or minute for many
who do not understand stuttering, however, the fact that these conferences provide a unique
and "easier" opportunity for PWS to make friends, makes it an important theme. The
following are narratives of the subordinate theme, meeting people/making friends:
Alex (219) - I'm meeting a lot of ah new people, you see, that didn't know me before
the conference.
Evan (239-245) -1 remember meeting people and that was, and, and that was quite
interesting because... yeah, yeah but I go to a conference myself, like especially if it's
a technical conference, which I tend to go to once a year or so-1 still find it hard to, to
initiate contact with, with other people. And, and s-, and most of the time I feel as if I
haven't gotten out of the technical conference as much as I should have with the, with
the NSA event I found myself to be less inhibited in, in making contact with
strangers.
Hayley (161) - My first conference I was scared out of my mind. I didn't know what
to do, who to talk to, how it all would work. Um, but people just kept coming up to
me and, 'hi I'm so-and-so and blah blah blah,' and the environment was just warm,
accepting, and friendly.
Hayley (195-209) - Um I felt for the first time that I had a place that I belonged. Um,
the first time I was in a situation that I could actually participate. Be heard and I was
a-, I could actually be heard, that no one interrupted me. No one spoke for me. They
weren't afraid to look at me. It was just a different world. It was like I stepped over
the rainbow or to the rainbow or whatever. (Hayley laughs) For the first time I felt
like, 'Hey, I'm not a bad person.' They like me (both laugh). I like them. I'm having
fun. (Hayley laughs) And I remember not sleeping at all that weekend. The more
sleep deprivation, the more I stuttered, and it didn't matter, (both laugh) And it didn't
matter and I made lifelong friends, and I danced, and I laughed, and I cried, and I was
understood, and I belonged. Oh my God!! I was finally in a place where I felt warm.
Jackie (144-146) - Oh, it was ah, overwhelming and fun and the best thing I had ever
done, you know, there are all these people, my 1-, well just, all these people, period,
'cause, I think that, that was a pretty big, big one at that time, like over 500 people.
Yeah, that's were all these people there who stuttered and you walk into the hotel and
everybody is stuttering. You can hang out ah with all of these other people who
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stutter too. And um, it was weird, I just had never felt comfortable walking up to
people and um, and, it, it was like a totally different experience.
4.1.1.2 Social Gatherings (conference planned/spontaneous)
Participants also described making friends throughout the conference. Some situations were
one-on-one, but many times people met others or made friends with other attendees during
social gatherings. Such groups congregate as part of preplanned conference social events and
informal social events. These group outings include dining, touring, attending sporting
events, participating in night life activities. This is an important aspect in that the organizing
body purposefully establishes activities where the primary purpose is simply socializing. In
addition, some social activities simply happen spontaneously. Gatherings of people may
include meeting at one of the hotel venues, such as a conference room, restaurant/bar and
hotel lobby, but may also include sites that are outside of the hotel confines. The results of
NSA's (2009) conference survey coincide with these findings. The survey shows that 80%
of respondents report attending a conference to "socialize". Following are some examples of
such gathering in the subordinate theme, social gatherings (conference
planned/spontaneous):
Dylan (386) - You know, and it was just, it was, it's just strange! You know, what
that's like when ah, you're with a group of six other people. You go out to eat. You
all stutter. You order what you want. You know I hadn't ever done that before! It's
just kind of, they'd be out to eat with people, they'd get to me and I would typically
never order what I wanted. I would order what the hell I could say without stuttering.
Dylan (616) - go hear the keynote speaker for Friday. Friday night you're either
going out to eat with people or you're going off on one of the NSA functions.
Fred (489) - And sometimes someone said, 'Hi. How are you?' in the elevator as
we're going by, I ah usually try to get together with someone and go out to eat with
them, so that's little bit.
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Gilda (354) - the Georgia one had the one that everybody met up at that like bar,
whatever. I didn't drink there, and they're like, everybody is sitting down and you
can, can socialize and relate to what, you know, try, relate to people, socialize, and
that's about it.
Ken (753-759) -1 felt good that I was able to show them around the city. So that, that
was a, a, a good feeling for me too, you know. So I'm glad I, I went that night 'cause
originally I w-, I wasn't going to- other than the baseball game I didn't sign up for
anything 'cause I had-, as far the city tours I didn't think I would ha-, but I, it ended
up good, you know.
4.1.1.3 Extreme Socializing
Some participants refer to what is best described as extreme socializing, in which individuals
or groups sacrifice sleep for more socializing. It has been reported that these extreme
socializing sessions have often run from the late hours of one day into the early morning
hours of the next day. Although this subordinate theme may appear to be similar to the
previous theme, it is important in that the opportunities for socializing are so important to the
participants that they will socialize at almost any cost. This appears to be unique. The
following quotes illustrate the subordinate theme, extreme socializing:
Alex (352) - We talked and the thing that I realized I had heard ah briefly from
someone ah don't plan on sleeping while you're at the conference. (Investigator
laughs)
Bill (255) - it's nice to have all these ah classes, but it's not about the classes. It's
about the social events, about the interactions that-, about the, the conversations at the
bar till 3 o'clock in the morning. Right? I mean that's kind of the meat and ah
potatoes of the conference.
Dylan (614) - Forget about sleep, you can sleep when you get home. So, you know,
for me, staying up till 3:00, 4:00 a.m. really, you know, it's, it's something that I do.
You know, and I used to, I usually like to wake-up and go to the workshop sessions.
Dylan (618) - So come Saturday afternoon, the last day of the conference, you're
really dragging by that point. There's just, there's a combo of sitting through
workshops, not getting much sleep, partying till God knows when at night.
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Hayley (205-209) - And I remember not sleeping at all that weekend. The more sleep
deprivation, the more I stuttered, and it didn't matter, (both laugh) And it didn't
matter and I made lifelong friends, and I danced, and I laughed, and I cried, and I was
understood, and I belonged. Oh my God!! I was finally in a place where I felt warm.
4.1.1.4 Post- Conference Socializing
Also, within the major theme of socializing, participants talked about how they continued to
socialize, or of their intentions to continue to socialize with their friends from the conference
between conferences. Once again, this appears to be unique to the participants' experiences
of this group, more so than would be expected with other groups. All of these forms of
socializing are unique and important for this group because PWS often avoid social contacts
due to their difficulty with communication (Craig, Blumgart, and Tran, 2009). Following are
some examples of the subordinate theme, post-conference socializing:
Dylan (322) -1 keep in touch with a lot of people at the NSA. You know, if there's
ever an NSA function somewhere, you know, like hey we're going out to eat on such
and such a night, I'd prob-, I'd typically show up to those.
Isabelle (103) - It was fun. I mean I just happened to have met there about four or
five other speech pathologists who stutter so for me that really met my needs. You
know, who I've kept in touch with for years.
Isabelle (203) - You know what I, and then I started keeping in touch with somebody
who I met in Atlanta who had taken Precision Fluency and actually that helped me a
lot.
Jackie (342) -1 have some close friends that I've met through the NSA that I keep in
touch with and I mean, a lot of times we don't even talk about stuttering, but I know
that if I did want to, um, they are definitely people to go to.
Ken (629-631) - The conference gets me to meet and socialize and that I try to use
that experience when I go back into everyday life, you know, so that has, that helped,
helped me out too.
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4.1.2 Affiliation
Affiliation describes how participants report ways that they feel like or have become a part of
a community of PWS. Participants often identify groups of friends from their first
conference and subsequent conferences. Feeling like a part of community overlaps with
some of the subordinate themes in socializing situations with other people who stutter. For
example, meeting people/making friends can be associated with having an affiliation with a
community, but being a part of community does not necessarily mean that you are friends or
that you necessarily socialize. Another example is how social gatherings at the conference
can be a catalyst for giving or helping attendees to maintain a sense of community or
affiliation, but it is possible to socialize at these events and still not have an affiliation.
Arguments can also be made that subordinate themes within affiliation can fit into
subordinate themes of socializing opportunities with other people who stutter. Subordinate
themes that emerged from participant interviews that are within the affiliation theme are: (a)
bonding experience, (b) expansion of community, and (c) desire to reunite. These
subordinate themes will be discussed. Supporting participant quotations will be provided.
4.1.2.1 Bonding Experience
Participants give narratives of interesting or funny experiences that they have encountered
during social gatherings at the conference. These experiences are either related to the unique
experience of being with a group of other PWS or may not be stuttering related at all. These
verbalize experiences seem to be bonding experiences for the participant and/or the other
social event attendees. These bonding experiences help instill or maintain a sense of
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affiliation for the reporting participant and/or the other social event attendees. Following are
examples of the subordinate theme, bonding experience:
Bill (259-275) -1 felt like I was 14. You know? We're all kind of packing around
(Investigator laughs). Um, go-, I mean and the, and the funniest thing was ah, one of
the, I guess it was the second day, and a group of us wanted to go eat. And there's
probably like, like 20 people or so. Were you there? No, you weren't there. You
were supposed to go, but you didn't go 'cause you had something else. But it was
weird, we're we're sitting here in this group, in this large group, and the server walks
up, and you know Bailey Bowerman?
Investigator:
Yeah.
Bill:
Bart (Bill laughs)-
Investigator: Bart?
Bill:
Ah, Bart is what we call him.
Investigator:
Yeah.
Bill:
Um, so he's the first one that places his order and, you know he's
pretty dysfluent. And the server's like... and then I'm like, 'hey calm-,' I said, 'hey,
hey girl, just calm down. If you can read, we're all stutterers here.' You know, and
and so, ah for us to place the order it probably took about 5 minutes. And ah I-, and
and it was, it was kind of funny because the roles were reversed to see her so
embarrassed, so uncomfortable. (Investigator laughs) She wanted to take the orders
and get out of there as soon as she could, so it was kind of funny. That was funny
stuff.
Connor (143-155)- Let me tell you, um when we went out that Friday night, me,
Christina and we hooked up with a couple of people from the Central-South region.
Um. ..something Copperman, I'm, I'm forgetting his first nameInvestigator: Chester I think.
Connor:
Chester Copperman] And one other guy from the Central-South
region. And Calvin Crawley. And we all, we weren't on the bus which was going to
some area. But we hopped on the subway to go there and to meet everyone and it
turned out that whole area was closed or something. So that whole bus went
elsewhere so we had to find our way to this new place (Connor laughs) and we
eventually found our way there. And um, had dinner and all that. It was fun. And
then we had a drink or two. And then we hopped on the bus coming back and I
remember laughing harder on that bus than I've laughed in years. And, I mean,
everyone, at least up in the front of the bus, was having a grand ole time.
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4.1.2.2 Desire to Reunite
Participants reveal their desire to be with the people from the conference community. They
express how they wish they could see their friends from the conference more or how they
look forward to seeing them at the next conference. One verbalized her friends' attendance
at the next conference to be a factor to consider in her decision of coming to the next
conference. Examples are below of participants desire to reunite:
Bill (315-317) -1 was, I was excited, um, and then to at the same time and I just-, I, I
really miss those people. You know? I mean heck, I wish I had this whole ah
subdivision was, were people from the conference.
Connor (213) -1 don't know, I'm just looking forward to seeing people I met last year
or um, at these chapter meetings in um, the Southwest and in the Central-North
region.
Jackie (240-242) -1 looked forward to it so much to have this weekend where I
wouldn't think about stuttering, where everyone was so accepting. Um, I really feel
like what keeps bringing me back is just all the friendships and, you know, and all the
great people at the NSA, and especially now just being able to give back and bring
people into this great world.
Jackie (280) - (referring to her decision to go to the next conference) And um,
especially and also who is going. Like if I found out none of my friends can go, um, I
don't know, I, I might think twice about it or, I, but if I went I'd still have a good time
anyway, but um, you know, it's still cool to have that core group of people going.
Lynn (401) - (referring to why she continues to attend) Ah really probably just to, see
old friends.
4.1.2.3 Expansion of Community
Participants also report their beginning or increasing their involvement with other self-help
activities for PWS which include groups, workshops, and internet activities (e.g. internet
discussion groups, podcasts and video links). These activities include both people that they
may already know from conferences or may be viewed as a way that they have expanded
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their sense of community of PWS. Following are some examples of the subordinate theme,
expansion of community:
Connor (167-169) - And um, it really did inspire me, I think, to .. .to not speak more
fluently, but to just, be involved. Well, to be involved in the NSA. I want to be
involved. I joined the um Yahoo, stutter chat, and stutter L and um NSA conference
groups. And for a while, I religiously read every post.
Hayley (217-219) - And there was some warm stuff that stayed with me and I'm just
glad I went at a time when the internet was in existence because those chat lines are
like a God-send to just keep you going until the next time.
Hayley (690-692) -1 started it, we talked about starting it upon my returning from the
conference. So we had it all planned, it was set up, went to the conference, got
juiced, came back, and the first Monday in July was our first meeting.
Investigator: I'm curious, real briefly, how the progression of the group has gone
over the last year.
Hayley:
Over the year, we have increased the membership. Um, there have not
been any major changes, except that I'm taking the lead more.
Jackie (94) -1 think that was the first time I went to an NSA convention and, um, I
had gone through like a Friends' 1-day conference, and then doing AIS, and I started
to develop these relationships with other people who stutter and I think it just taught
me how to be more social and kind of reduce those fears
As previously mentioned there is overlap between socializing opportunities with other people
who stutter and affiliation. In this section the subordinate themes of affiliation were
reviewed. Subthemes of affiliation were not immune to this overlap. For example, it could
be argued that bonding experiences do not necessarily result in having a sense of community
(affiliation) and should be considered to be a subordinate theme of socializing opportunities
with other people who stutter.
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4.1.3 Shifting Roles
Shifting Roles describes how several of the participants have changed or "evolved" from
being someone who primarily seeks or needs help to someone who wants to give or finds
ways to give help. The participants generally come to their first self-help conference with
needs, goals, or hopes that relate to themselves. However, several participants describe what
seems to be a role shift or that they take on additional roles that are of a more helping or
guiding nature. This appears to happen as early as during their first conference. Participants
play out these roles in many ways including helping to reassure parents of CWS, taking on
leadership roles within local self-help groups, wanting to present at future conferences,
wanting to be a role model for other PWS, becoming more active in the online self-help
community, and educating others about stuttering including SLPs in formal and informal
settings. This theme is supported by the following quotes from the participants:
Bill (387) -1 reach out to people on the Speech Easy website. Um, I reached out to
some people at work. There are a few guys that I know that stutter at my work. And
they got the-, they got the ah devices as well. I, I'd say probably get six people free,
free devices from folks that have kem-, come to me online. I've posted things.
Bill (427-429) - (about second conference) this time um what, what I'm doing is I like
ah volunteered to to host a couple of of the open mics- I'm doing doing one for adults
and one for kids.
Bill (503) - (about second conference) At this conference ah, you know, there are
people that are, they're going to be in their shells and I'm going to trying to get
people out of their shell, you know, to try to inspire some change. ... So, and and
that's kind of how last year was, you know.
Connor (127) - It was really awesome um talking to parents of, of people who stutter
Connor (217-223) -1 would like at some point take more of a role in, in the um, ah
the national association, but um, I'm not looking to campaign for that either I'm just
looking to just be a part of it and to do whatever is required and yeah. Um, I would
like to at some point, I mean, I'm told that being a Ph.D. and lecturer who makes
many presentations, I'm a role model. So, I mean, if I can use that for any purposes
whether it be for adults or for teenagers or younger children, I would be willing to
take that role.
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Investigator:
I mean, um, in, in what capacity?
Connor:
Whatever they would need me to do. I don't know. To speak with
them to, to speak with them in an informal role or a more formal workshop role, I
don't know.
Fred (399-403) - there was a colleague working for the Boeing Company who, who
out of the blue, called me, and I had talked to him in the past about work, and he, he
called, he knew s-, he had somebody who stuttered and he wanted information about
it. And ah ... I was able to ah to talk f-, with him and give him information and feel
good about it, that that I was able to, where before I don't think I would have, or
before attending a conference.
Hayley (211) - I'm back and I want to be bigger and stronger. And I want to do for
those new people, what Ron did for me. And that's why I look-, well having the
support group and seeing new people come and just say, 'Hey. You're okay. It's
really okay! I found that out.'
Hayley (315-317) - Um I found out you get out of them what you put into them. That
by making an effort to connect with first-timers is a very important thing, so that you
don't forget where you were, and so that you can help someone else. So that you
don't forget where you were and you can help someone else. So every time I go I
feel good because I feel like I've given something back.
Hayley (429- 431) -1 go to get and I go to give. And it feels good on both ends.
Isabelle (105-107) -1 definitely enjoyed speaking to a lot of parents there of some
people who stuttered. I thought that was really good, you know, for them to hear my
side of it, and for me to hear theirs.
Isabelle (127-129) - How could so many people walk around stuttering so badly and
not be using any kind of (both laugh) fluency tool at all? That just blew my mind,
just blew my mind, 'cause as a ch-, I guess, when I have my severe moments I can get
like bad headaches almost, so I just couldn't for the life of me. And I, and I guess,
honestly, it concerned me a little bit about the teenagers who were there, you know,
like what kind of role models. I mean, I'm not talking about like, you know, role
models and in terms of what type of people they were, but I wanted them to know that
there was help out there.
Investigator:
Help to?
Isabelle:
Achieve, sa-, you know, achieve improved fluency, improved selfesteem as well, but there were fluency tools out there and I guess that just worried
me.
Isabelle (498-502) - Um, it's important. But I think the difference with the next
conference if I present, I want to do some kind of a workshop with, with kids. Or
with parents.
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Investigator: That actually, ah, takes care of, I was gonna ask, "Tell me about what
you will do at the next conference?"
Isabelle:
Yeah, something with them. I'm not sure what, but I want to, I want
to um, I see so much fear, you know, in my practice. And, you know, I want them to
at least know that, you know what, your kids will be all, all, right and that's such a
hard job as a therapist.
Jackie (258-262) - Yeah, just, I try to introduce myself to as many people as I can
like, in the lobby um, and just around the hotel. Hopefully they're with the
conference. 'Cause that could be awkward and um, you know, 'cause usually it's
seem maybe people I know will um, maybe bring people from their local um,
chapters or kind of, you know, meet somebody who's a newbie um, in the lobby. So,
you know, you don't want to let anyone feel alone or like they don't bel-, belong there.
So maybe just trying to bring um, you know, say oh, 'We're going out to eat here,' or
'we're going to be hanging out later. Feel free to come' or 'you should go to this
workshop,' and 'make sure you go to this.' 'Make sure you buy your ticket to the
banquet because everybody goes.'
Jackie (288) - You know what, I feel it's cool meeting people and, you know, they get
to see somebody who's been there, done that, and is comfortable with their stuttering
now. And I remember meeting somebody this past conference who thought it was,
didn't believe that I was a speech pathologist, or that I could go and talk to people, or
you know, that I can date, or do any of these um, things just to show people that you
can do this, and you can stutter.
Ken (713-717) - (referring to talking to first time attendees) Well, you know, we talk
about our first experiences, you know, your first conference and, you know, what
your experiences were when the first time you came and you can relate to their
feelings. Then of course they talk about their, their stuttering also, so you can relate
to that, their experiences in terms of stuttering, dealing with it, and they seem very
opened up, you know, talking about it also 'cause they never really I guess talked
about it before.
Ken (863-867) -1 felt good. I was able to, to drive people; I volunteered to drive
people around. 'Cause at the hotel nothing was really in too much of a walking
distance. So I, I hooked up with a lot of people and I volunteered to drive them and
that was a good feeling for me too.. .You know, so I felt I was helping them out a lot.
Lynn (365) - The second conference I went to more of the kid workshops, to help out
at those, and the-, then I enjoyed it better. Um... just because I, I thought I was of
more use I guess, um helping out at the workshops than, than just going to them. Um,
and I, I, I get a lot out of um, seeing, seeing the kids and seeing them being around
other kids that stutter and talking about stuttering or, or not talking about stuttering
and just stuttering, you know, um, just being kids.
Lynn (397) -1 know what, what makes me happiest when I go to the NSA conf-, like
I, I always want to volunteer with the kids, and only go to the workshops that I'm
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actually interested in, and you know, and that kind of thing. Um, so I just know what
to expect and, and what I, what I want out of it, yeah.
Lynn (448) - Randi invites to Friends are, are, you know, professionals in the field
that I get to interact with and, and stuff and that feels really special, and then I also
work a lot-, like talk a lot with parents and with kids at Friends and so that, um, I feel
like I, I learn a lot from them that I could bri-, like bring into ah when I become a
clinician.
4.1.4 Positive Change of Emotions
Positive change of emotions describes the patterns of changing states of consciousness that
participants report in relation to their experience of their first self-help conference for PWS.
For the purposes of this theme the term emotions will incorporate both feelings and emotions.
All 12 participants have expressed positive emotions regarding their first conference;
however four participants have been selected to demonstrate positive change of emotions
because of the contrasting emotions that were expressed in relation to before or at the
beginning of their first conference, with the emotions expressed in relation to during the
conference or about the conference as a whole.
This next section will review these positive
emotional changes by several of the participants. They will be illustrated by quotes to
support this theme.
In this example, Alex reflects on the beginning of his first conference and describes feeling
nervous. Upon reflecting upon his first conference he describes feelings of satisfaction.
Furthermore, he seems eager to attend his next conference to reconnect with people he knew
from his first conference.
Nervous
Alex (348) -1 wasn't a part of that first ah timers' reception or see, meeting or
anything like that, and I didn't have a name tag, I hadn't registered. I, I, I was just
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saying, 'Okay kind of watch everyone what's, what's going on.' I heard most of the
people were fluent, so I couldn't tell what was going on and, and, and I was ah
thinking at that time, I didn't know whether I was going to, ah you know, pack my
bags and go home or not.
Satisfied
Alex (538) -1 couldn't ask anything more from the people who put their hard work
into it. I think it, it's just an amazing opportunity ah for anyone, and I could not ask
for anything more from the conference.
Eager
Alex (450) -1 wanted to see April again, you see, ah see Audrey again and then, then I
see you over there on your table taking surveys, (both laugh)
Dylan reflects upon the period of time before his first conference and also describes feeling
nervous. Dylan also describes his feelings ofjoy as he reflects upon his experiences during
his first conference.
Nervous
Dylan (342) - So, you know, it, it was very on edge for me, because I wasn't sure how
I was even going to react to even being there. I didn't really know what the people
were going to be like. I really, and I'd probably also was really on edge about talking
to somebody else who stuttered. Ah, because I really hadn't done that before.
Joy
Dylan (588) -1 did enjoy my time at the Boston conference. I, I did. It was, it was a
fun time.
Ken reveled his feelings of being nervous before his first conference. He then reflects upon
his first conference as a whole and describes his feelings ofjoy and how he was
emotional/susceptible.
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Nervous
Ken (473) - Just traveling to a different place, er all by myself and I guess the
experience of, of just meeting people. I mean, I have to tell you, I was very nervous
flying out there 'cause I, I didn't know what to expect.
Ken (721-723) - when you go to your first conference you're kind of nervous and
apprehensive. Well number one, you don't know what to expect and, you know,
when you have never met other people before.
Joy
Ken (433) - And Seattle was my first conference, you know, Mitch I cannot begin to
tell you, I had such a tremendous, fabulous time in Seattle that year. It opened up so
many doors for me.
Ken (439) -1 had such a tremendous time out there, it j - , it was just like living in an
entire world all, all by itself and I just exper- going out there and that, that entire
week I had such a tremendous, happy time.
Ken (473) - it was just a very exciting week, yeah just going, going to different places
like going out to restaurants and eating out and just having a good, a good, a good , a
good time.
Ken (555) -1 was on cloud nine I guess, just... you know, after coming back from
such a tremendous, fabulous week I've, yeah I felt, I felt really good.
Emotional/susceptible
Ken (545) - The first one was such an overwhelming experience, you know, you can't
wait for th-, until the next one is.
Lynn also described feelings of being nervous before his first conference. She also describes
her feelings ofjoy when reflecting upon her whole experience of her first conference.
Nervous
Lynn (415) -1 think the first year I was more anxious and now I'm, I don't get
anxious I just, um, you know, I just go to have a good time.
Joy
Lynn (317) - mostly what I got out of it was social stuff. You know, it's being around
a bunch of other people who stutter, boys and girls and just, you know, being so open
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about stuttering, you're just having fun and drinking and (Lynn laughs) so, and so I
was just really happy that I had this really fun time.
This illustrates how the unknowns about the conference result in feelings of uncertainty;
however, as participants experience more of the actual conference their feelings towards the
conference change and more positive feelings towards the conference are expressed as the
participants make meaning of what the conference means to them.
4.1.5 Redefining Oneself
Participant narratives that describe cognitive changes that have been made about his or
herself are described in the theme redefining oneself. Participant narratives lend support to
several ways in which they have begun to think differently about the way each participant
views him or herself in their social world. The narratives support the participants' changes in
the following domains: improved self-perspective, increased self-esteem, self-acceptance,
increased risk taking, self-realization, and feelings of freedom. According to several
researchers cognitive restructuring, based on the ideals of social constructivism, can play a
major role in working with challenges in the human condition (Beck, 1995, 2005; Ellis 1977;
G. A. Kelly, 1955a, 1955b; Luterman, 2001) and more specifically the successful
management of stuttering (DiLollo, Neimeyer, & Manning, 2002; Fransella, 1972; Plexico,
Manning, & DiLollo, 2005). Participant quotes used to illustrate this major theme fit several
subordinate themes but were only listed under what the investigator felt was the best fit.
Participants gave their accounts of their experiences and describe these ways of redefining
themselves. The following are examples of those accounts in what the investigator found to
best illustrate the respective subordinate themes.
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4.1.5.1 Improved Self-Perspective
Self-perspective is how an individual perceives him or herself. Several participants
discussed how they have improved their outlook about him or herself and the way that they
perceive their own stuttering after attending a self-help conference(s). Participant narratives
illustrate that listening to other PWS who either stutter more severely, who appear to be more
negatively impacted by stuttering, or by watching how other PWS conduct themselves, can
play a role in their how participants view themselves. Below are some sample quotes of
improved self-perspectives.
Bill (299) - for the first time in my life, man I, you know I-, I felt human. You know,
these people, they're people that I can really ah relate toBill (489-497) -1 learned that the conference really wasn't about me. But it was
about the other people, (asked to go into detail) You know, like, there are people in
this world that have this disability that maybe have more, more short comings then
me that maybe aren't as adjusted, that maybe haven't had the same breaks that I've
had, that really need to have someone to, to talk to. You know? To, to ah give them
some hope a little bit.
Bill (517-523) - You know what, I mean, after going to the conference ah, in terms of
my feelings towards my speech, I-, I think that I felt better, because again it's
humbling man. You mean folks are all, are are all over the place from 1 to 10. You
see such a wide, such a wide array of, of, of ranges. And ah, and really I, I, I consider
myself fortunate that I'm on the lower end of the scale. Because again there are some
people that are on the, on the extreme side of the scale who, who, who really, for the
lack of a better word, can barely function ah socially. And it's devastating. It's
terrible. It's so terrible.
Dylan (209) -1 think that I've basically really had to learn to accept certain things
about myself and that's probably one of the greatest things that I've probably taken
away from the NSA, is, is just having to deal with that. You know I mean I'm a lot
more confident in who, in who I am and it's just, I mean as horrible as this sounds
with the NSA. I mean, one of the first things I was thinking about when I was
walking away from that first conference was how good I had it.
Dylan (376-380) - Um, well just probably the attitude that I have is that, you know,
having to struggle a lot. You know, just seeing, 'Alright, that there's a lot that I can
get through.' You know, I mean it, you know, I, I had a job, I wasn't sick. I mean,
you know, look, I'm in my early 20s, I have a full-time job, I'm surviving. And it's
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basically; it was just more or less, you know, 'What was my problem before that?'
Like, not seeing it that way and it, it really, it was a very positive experience, for me.
Investigator: And that was what you got-?
Dylan:
Out of my first conference.
Jackie (204) -1 think just in a more productive way instead of thinking, 'Oh man, I'm
going to stutter.' Maybe, maybe I'll tell these people that I'll stutter. Or um, maybe
instead of switching the word I'll just try and, I, I just won't. I'll try to stutter, I guess
thinking about it in a more productive way instead of a negative way. So instead of
thinking how to avoid something if you just, mustering up the courage to go and do it
anyway.
Gilda (230) - Ah, that it's not the end of the world. It could be worse. Um, and you
can still have a great life and just, just have a better attitude with it, you know, and try
to work with it, don't let it, you know, totally consume your life.
4.1.5.2 Increased Self-Esteem
Several participants report ways in which they feel better about himself or herself after
attending a self-help conference(s). Participant narratives illustrate the way that participant
value the way that other PWS manage themselves and use others as a role model to try live
and value him or herself in the same manner. Below are some sample quotes of improved
self-esteem.
Alex (177) - Ah, so, and then I'm, I'm ah taking a lot more, you know, openness to a
lot of things. I am going to a religious ah center. I'm, I'm learning how to meditate.
Well that's 1-, that's ah teaching me to be more respectful of others, you see, honoring
others. I'm doing yoga, you see, where we do the Namaste, and it's, no you see,
bringing, allowing so many more things ah to come into my ex-, to come into to my,
ah to come into my experience and as I am finding that I'm changing the way that I
perceive ah life, not so much the, the stutter, but the life I am allowing more things to
my experience and it's ah because of that question that I had to answer (from the
conference).
Fred (393) - Than once I could say that I accept the fact that I stutter, and, or I'm not
going to worry what other people say about it, and ah, I wouldn't think about it as
much.
Gilda (176-178) - It was good, now-, especially I met a lot of females, 'cause I didn't
know any females that stuttered until I went to the convention. You know, and how
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they have, a lot of them careers, really good, and how every person has different way
of thinking about it and how they um, deal with it, you know. Some people are just
strong and they just don't like-, that strong character, doesn't let it stop'em. And I
think I, I need to build the strength sometimes. Hmm, um, so I benefitted from seeing
other women and other people just ah going through their careers and just not letting
it stop them.
Jackie (192) - (referring to what she noticed after her first conference) I felt like I had
s- more self-confidence in myself and realized that, you know, maybe that my
stuttering wasn't, I always used it a lot as an excuse and not that all that stuff totally
went away, but I think it did give me a little more confidence and I felt, you know,
um, in the fall when I went back to school I, I felt more confident just to go up to talk
to people. And I had also done AIS during the summer too, but I definitely attribute
both of that, you know, whether I was stuttering or not, I just had this confidence that
I could go up and talk to anyone and it didn't really matter what they thought or what
I thought that they thought to whatever.
4.1.5.3 Self-Acceptance
Self-acceptance is the affirmation of self in spite of weaknesses or deficiencies. Several
participants discussed both how they felt about accepting his or her identity as a PWS and
about accepting his or her own stuttering. Participants also verbalized how they were less
concerned about how other people judge them. Some examples of self-acceptance are
below.
Alex (175) - I'm not becoming fluent, which I ah thought that maybe that might
happen, ah but what I am saying is all those other things that I've been keeping from
my life, you know, all these other things are happening. You know, I, I had this ah
big wall I wasn't allowing anything to move, you know, so I was ah constantly
keeping everything from moving. Now, I have said, "No, you see, I'm going to
accept this,' so, so the one part has, the one part ah has remained the same. It's, it's
my stuttering and my speech. So many things I've, I have ah been in Toastmaster for
7 months now. That happened after the conference and ah, and I love every meeting.
I love it more than anything I've ever done in my life.
Bill (311) - But that's life, man. We all have our like li-, we have like abilities and
disabilities. Um, you know some, some folks are prone to ah cancer, some folks are
short, some are tall, I mean, you know, this disability is encoded in my DNA and this
is, this is, this is who I am and, but there are some people that will accept it, some will
not, and ah...
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Bill (331-333) - To be, to be like at-, to be like in a sea of people where like we're all
the same, like you know, except i-, you know except we have different jobs
obviously, but no one judges me for my, for my disability. And you know what i-,
and it's, 'we're the same,' but the fact of the matters is, I have, I have a disability. So
what?
Investigator:
Right. ... Were, um... were you always able to say that?
Bill:
That I had, that I have a disability? Oh no. I mean I was in, I was in,
ah I was in ah denial fo-, for like a long time.
Connor (207) -1 just really felt like it was a huge step for me to really come to terms
with who I am. And to feel good about who I am and not to run from stuttering
Dylan (398) -1 think that that was the conference (third conference) where I probably
just broke down completely and was just like, you know, I finally was able to accept
the fact that I stuttered.
Dylan (400) - Just being there, and, you know, and, it was just finally being able to
accept that I stuttered and um, you know and, I, I've had more than one close friend,
um, around here basically say, that I wasn't the same person when I came home from
that... and they've never really been able to pinpoint it, but they just said, 'You were
not the same person when you, when you returned that year.'
Dylan (490-496) - Well, yeah, a lot of people said that I started to speak a lot better.
Um, but at the same time I think I was doing a lot more. I was working,
(unintelligible), o-, oh yeah- just basically, you know, like taking time to read aloud
to myself more. Um, stuff like that. By the, because, I mean, 'cause really though, I
mean even after that first conference I was very happy with things, you know, I was
saying I wasn't going to hide my speech anymore, but I was still at war, with it...
You know? (Dylan laughs)... And I think that after the Tennessee conference (third
conference) I wasn't really at war with myself anymore.
Dylan (640-642) -1 was very insecure about my stutter. Extremely insecure, about it.
And that's really how I see it. It was, you know, and I think that, you know, a lot of
what I've done is that, you know, I've been a lot more accepting.
Fred (393) -1 know that once I came to the point where I accepted it was not at the f-,
after the first conference. It was a number of conferences after. Than once I could
say that I accept the fact that I stutter, and, or I'm not going to worry what other
people say about it, and ah, I wouldn't think about it as much.
Isabelle (389-391) - whereas in Atlanta, you know, I was like meeting more people.
Um, I-, you know what; I guess the main difference probably was that I was not
concerned about stuttering at all. You know, I guess I realized fr-, from the first
conference, you know, what's the w-, worst that could possibly happen?
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4.1.5.4 Increased Risk-Taking
Several participants reported taking part in activities that that they would not have previous
to having attended a self-help conference(s). Such risk taking activities include initiating
conversations for the sole purpose of socializing, talking about stuttering for the first time
with people that you know, and advertising or disclosing the fact that they stutter to new
conversational partners. Examples of participant narratives discussing increased risk taking
are below.
Alex (248) - (referring to the increased frequency of dysfluencies after his first
conference) Well it's probably because I'm speaking more. I'm allowing myself into
more speaking situations. I am ah taking, I am ah taking ah the opportunity to say
something casual to a person, that I'm doing something with, ah in line with, saying,
'Good morning' or something like that. Ah, ah, ah taking the opportunity to, to speak
ah rather than ah running from the fear of a speaking situation. Ah and then of course
ah what happens there, you see, as, as a person responds and we begin a conversation,
then of course, the blocks fall in.
Evan (363-367) - the week right after the, after the conference and I told them (two
co-workers) that I had gone to a stuttering-related conference and- and met a lot of
people who stuttered and attended, and attended presentations. Now I wouldn't, I
wouldn't see myself, yeah, I usually don't talk to my co-workers about, about the fact
that I stutter or, or what I'm, or what I'm doing to, um, what I'm doing for my stut-,
for my stuttering. And I, I'm curious as to, as to why I v-, I volunteered for that, for
that ah disclosure.
Hayley (287-289) - (referring to after her first conference) I took more risks. I, I um,
I started advertising a little bit, like, 'Oh, ah, hi.' I remember the first time I tried
advertising I guess I was t-, talked about it, but I wanted to come home and try it and
stuff.
Jackie (164) - (referring to experience during the first conference) I guess I felt like I
could be more, more social and that, you know, it's interesting, there, you know, if
somebody doesn't like you or doesn't want to talk to you, you can't really say it's
because of your stuttering.
Jackie (312) -1 don't feel like I would have taken as many opportunities or meet as
many friends or put myself out there as much had it not been for the NS A.
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4.1.5.5 Self-Realization
Participants verbally recognize who they are, what he or she needs, and what he or she
believes about his or her own capabilities. Participant quotes related to self-realization are
below.
Alex (418-420) -1 still want to be fluent, (Alex laughs) you know, I can't, can't buy
into ah being able to say, you see, 'I don't want.' You know, ah, I'm not there yet.
Bill (313) - (referring to his thoughts after being asked to speak at closing ceremony)
No. (Bill laughs) No way. And then, and then I thought about it and I said it's silly.
If I, if I can't be me in front of these people, then I can never be me in front of
anyone.
Bill (339) - And that's all I need in life man. You know, if I had, if I had perfect
speech, great, but ah, really i-, it's not what, what's, what's going to make me happy
at the end of the day
Lynn (556) -1 didn't really talk that much about how important support... support
was for me, you know that, that was everything, like if I didn't have that, like I
wouldn't have been able to do it on my own, even with just my speech therapist, like
I needed to meet other people that stuttered. I needed to have everything in order to
really-, 'cause I, I, I don't think I really took off in speech therapy until I met other
people who stuttered, who had done it, who I like, saw myself in, you know? So, I
got that out of going to conferences.
4.1.5.6 Feelings of Freedom
Several participants report feelings of liberation from the judgments of others and their own
judgments and about himself or herself. Participant narratives show a lessening or losing of
the inhibiting affect that stuttering can have upon an individual who stutters. Participant
descriptions are listed below to exemplify freedom.
Alex (161-165) - The Byrds had a song it was ah Fifth, ah Fifth, ah Dimension. And
it was this whole thing about the drug trip, see, where you're falling through life and
you're not holding onto anything and you're just letting happen what happens and
when I was driving home from Atlanta, ah, I played that song, I had the CD, a zillion
times over and over and over because it was because it was my experience I had let
go. And I felt like I was falling backwards ah watching everything, everything ah
circle around me. I wasn't holding on anymore.
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Alex (171) -1 knew that when I went home to my wife, to say, 'I know it's alright ah,
for me to be who I am.' And it's going to be alright from here on out and, and it's
going to be okay everyday for her to leave me, you know, because ah, it was
something that she didn't accept so I had to, to, to, it was like, you know, ah, ah it
was like, you know opening myself up and saying, 'No, no I accept this.' You know?
'I will embrace this.' You know, I will, I, I will somehow learn ah to love who I am
and to ah, ah, ah... it's like that 10-year- old boy in the conference ah last year that
said that he was proud of, proud to be a stutterer, to somehow, you see, to move in
that direction (Alex laughs) I don't have any idea if I'll ever get to where he is to be
able to say that.
Alex (179) -1 said, 'This is amazing. They said it was alright to stutter here,' and I
said, 'This is amazing!'
Connor (207) -1 just, at the end of the last conference decided I was going to this
conference and Christina felt the same way. And the story, I mean, I just felt like, it
was such, such a perfect cathartic experience
Dylan (342) -1 changed so much just by being there. You know, and I think that that
is really when I just kind of accepted the fact that I wasn't going to judge myself
anymore on how fluent I was... which I think in my head I was doing that, a lot! ....
So and, and um, and I went to workshop sessions throughout the entire time. You
know, and I, getting a chance to hear a lot of great presentations.
Evan (307-311) -1 think it's, eh as I said, I think, think being around stutterers make
me feel less um, makes me feel ah less conscious about myself and my stuttering.
And I feel, and I feel less inhibited in talking or introducing, -sing myself or, or, or, or
um, or be socially active and even though th-, even though the effect, effect tends to
wear off, after the event itself, I sort of, I use it as, as a means to get traction to, like in
to prepare myself for an event (i.e. professional conference) closer- in time.
The major themes and subordinate themes with the participant quotes to illustrate them have
helped the reader to understand the lived experience of those who attended a self-help
conference(s) for PWS for the 12 participants in this study. The applications and
implications related to these themes will be described in chapter 5 of this manuscript. The
next section will help the reader to understand the lived experience of stuttering of the 12
participants.
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4.2 Participants' Experiences of Stuttering
The second section of themes and subordinate themes helps to answer a secondary question From the perspective of a PWS who has attended a self-help conference for PWS, what is the
lived experience of stuttering? Once again, this secondary question was part of this research
to potentially see if participants who attend self-help conferences for PWS are unique in any
of their attributes or expressed feelings. This section simply describes this group. As seen
with the themes and subordinate themes in the last section that related to the experiences of
the self-help conference for PWS, there is overlapping that exists between themes and
subordinate themes. This also holds true for themes and subordinate themes in this category
that address the experience of stuttering from conference attendees. Once again, it is
important to recognize that due to the complexity of the social phenomena being
investigated; themes and subordinate themes are not necessarily distinct from each other and
are often interrelated. The richness of some of selected quotations illustrates such
interrelatedness and highlight how participant narratives can transcend subordinate themes,
themes, and sections. The themes and subordinate themes that emerged in this section that
will help to understand the lived experience of stuttering for people who attend conferences
are:
1.
Emotions associated with Stuttering
a.
Embarrassment
b.
Fear
c.
Frustration
d.
Loneliness
e.
Shame
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2.
Impact of Stuttering
a.
Personality
b.
Bullying/Teasing
c.
Education
d.
Dating
e.
Career Choice/Advancement
f.
Work Performance
g.
Other People's Perception
3.
Avoidance of Situations and Words
4.
Post-Conference Perceptions of Stuttering
5.
Post-Conference Disclosure
These themes and subordinate themes are explained in the next section. Participant quotes
are provided as examples for illustrative purposes. The first three themes related to the
participants' experience of stuttering overall, while the last two themes are specifically
related to the experience of stuttering after having attended a self-help conference(s). One
should not assume that the emotions associated with stuttering, the impact of stuttering in
certain domains, or the behaviors associated with stuttering are limited to the experience of
stuttering before a self-help conference(s) since the last two are related to after a self-help
conference.
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4.2.1 Emotions Associated with Stuttering
Participant narratives reveal a wide range of emotions that relate to stuttering. Emotions can
either be directly related to stuttering or people's misconceptions of the disorder. The
descriptions of the emotions that relate to stuttering that participants disclose most frequently
are (a) embarrassment, (b)fear, (c) frustration, (d) loneliness, and (e) shame. These
individual emotions are subordinate themes of this broader theme and will be discussed
separately. Several studies coincide with these findings about emotions related to stuttering.
Klompas and Ross (2004) found most of their 16 participants felt that stuttering affected their
self-esteem and self-image and brought about strong emotions. Plexico, Manning, and
DiLollo (2005) found among their seven participants, negative emotions were one of the
recurring themes related to unsuccessful management of stuttering. Other studies were more
specific about the emotions that participants related to stuttering and will be discussed within
each subordinate theme below.
4.2.1.1 Embarrassment
Some participants describe emotions that explicitly state or convey embarrassment related to
stuttering. Participant narratives suggest that their feelings of embarrassment stem from
overtly stuttering in front of others. This finding coincides with Finn's (1997) study of adults
who "recovered" from stuttering which revealed that 13 of 15 participants (86.7%)
experienced negative emotions related to stuttering, including embarrassment. Below
participant quotes support the subordinate theme of embarrassment.
Connor (191-195) -1 think I really believe that a major barrier for me in speaking
fluently is having issues, having embarrassment, and trying hard to avoid stuttering.
So if I were able to stutter and not worry about what anyone thought I really think I
could be a fluent person quiet easily. You know, maybe not all the time, but there
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may be a baseline dysfluency there, but I think it's rather minor. You know, and I
think the hard blocks is really in my head.
Gilda (382) -1 think in college, I think it affected me, not in high school. College and
just um, it dragged, and sometimes just other people, I mean, you get people from
everywhere and that's school or college. You know? Just feel embarrassed, I don't
know, with it, so I probably could have done more maybe.
Hayley (602) - Oral presentations were torture. Um, but I did them. Um, like I said
the stutter wasn't this severe (unintelligible). Put me up in front of the class, like
(Hayley laughs). Yeah, it ah, you know, sometimes it was really hard and teachers
wouldn't let me finish. They'd go, 'Okay that's enough.' Like I made the effort- and
that was okay with them. But I didn't have to finish sometimes. Sometimes, I had to
finish through all the snickering and um everything else that went on butInvestigator: When a teacher would stop it... was that, what was that like when a
teacher would stop it?
Hayley:
Um, more embarrassing than being up there, but, wait (unintelligible),
it was like a double-edged sword. More embarrassing than being up there and then
the other side would be thank God I can sit down.
4.2.1.2 Fear
Interviews reveal that participants felt fear in relation to stuttering. Participants seem to fear
situations in which the possibility exists that he or she may stutter in the presence of other
people such as classmates, possible love interests, or colleagues. This finding concurs with
Corcoran and M. Stewart's (1998) study about the experiences of eight adults who stutter. In
the study, suffering emerged as the main theme with the four elements of suffering being
avoidance, helplessness, and two subordinates themes in this study -fear and shame
(subordinate theme in 4.2.1.5). In Sheehan's (1970) description of the iceberg analogy of
stuttering he suggests that concealment behaviors including avoidances to be associated with
feelings of fear, guilt, and shame. Below participant quotes support the subordinate theme
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Bill (241-243) - And there's 300 people inside the room, if you can imagine. So as
I'm giving this presentation-1 am petrified. And I spent more time, more time
apologizing for stuttering.
Connor (29) -1 remember just being fearful of being called on in class. Um, terrified
of it, of introducing myself in class
Connor (41-45) - Most of undergrad that is. Um, why I was just.... um I was for one,
I was afraid to approach girls. Maybe I, I had a low self-esteem. I'm not sure, like
feeling like I couldn't offer them anything or feeling like they wouldn't see what I did
have to offer them. Just being really shy and I think that may have been partially a
um, natural to who I was, and it was just magnified by my stutter.
Dylan (386) - Well, ah it's just, you know, th- it's the stuttering iceberg. It's just fear,
it's guilt, it's shame. You know, and it's like, you get all of those feelings associated
with the way you speak. You don't want to exploit that, to anyone!
Ken (127-133) - Well, ah prior to that happening (an instance of stuttering on the
phone), I had a good relationship with them, you know, my, my, my co-workers but
see after that that happened to me I never really told anybody I was having a problem.
I kept it to myself of cour-, then of course it got worse, worse, and worse, you know,
but then I, I got ah teased after that too, yeah, I recall from my, I er some of my coworkers, they used- to like d-, you know, I got to the point where I couldn't even talk
on the telephone really I mean every time the phone rang, the f-, I can't even begin to
explain the fear I had every time I heard, heard a phone ringing.
Isabelle (487) -1 was fearful. I was definitely fearful. I was definitely hiding. I was
definitely, had a lot of fear, shame, you know.
4.2.1.3 Frustration
Some participants described that they felt frustration as another of the emotions related to
stuttering. One participate had great remorse for acting upon his frustration by fighting
someone. This finding about frustration also coincides with Finn's (1997) study of adults
who "recovered" from stuttering revealed that 13 of 15 participants (86.7%) experienced
negative emotions associated with stuttering, including frustration. Below are participant
narratives exemplifying the subordinate theme, frustration.
Bill (231-233) - He never made fun of me again, you know. But I like acted out ah
violently because, because I was, you know, a stupid kid. I was stupid. I'm not ah
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proud of it. Um, you know, I had gotten into like many fights because someone has
ah teased me, so. And that, and that was when I was in high school and junior high
school and like in college things, things change, you know, because as an adult you
do realize that the ah consequences are much greater. Um if, if I'ml9 years old, if
you tease me and we start fighting, then I'm going to g-, I'm going to, I'm going to ah
get arrested, so- Um, but as a kid, I, I was ah, I think sometimes I would have
tendency to become a snapper-head. I just would not take it. I was no one's
punching bag, so.
Ken (125) - But I, I just recall, you know, when it h-, it happened so, practically
overnight with me and the fear and the anxiety and the, the, all the anger, the fear
(unintelligible).
Ken (1135-1139) - Erm, well being a person who stutters, I mean, the bottom line, I
wish I didn't stutter, even though, you know, I've, I tried to deal with it every day the
best I possibly can, but I just wish I could just wake up one day and it would be gone.
And I wouldn't have to worry about what's gonna come next. You know, I'm alw-,
I'm always thinking about my, it's always on my mind, you know, that I might or
might not stutter, course, 'cause, I, I'm sure you could relate to it. You know how it
just comes and goes and all of a sudden it comes back even though you're doing so
well for such an, such a, such a period of time and then all of a sudden you begin, you
begin to have a problem again. So eh that's still is on my mind too even though I've
come a long, long way, you know, always, always thinking about it. And there are
days where I'm perfectly fluent
Lynn (341-345) - Oh, just that um, there were things that I did and, and sa-, like I
would sort of avoid talking to him because he made me nervous. And that's what I
was trying to tell him. And, um... so like, he didn't understand how I could, you
know, have conversations with other people and, and not with him and, I don't-, it
was a weird situation.
Investigator:
He didn't get it.
Lynn:
He didn't get it, basically. And I was mad that he didn't get it, and
now I'm like of course he didn't get it, you know
4.2.1.4 Loneliness
Participant descriptions reveal loneliness as another emotion related to stuttering.
Participants explain how childhood experiences contributed to feelings of loneliness. One
participant explained how his parents were afraid to do more "damage" to the participant if
they had talked about stuttering. Another participant was impacted by getting teased and
made him feel like an "outsider" and that he "wasn't one of them." Two participants
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discussed loneliness during their childhood in broader terms by explaining how it felt
isolating or that they didn't belong. Crichton-Smith (2002) found that in a study of 14 adults
who stutter, childhood experiences included feelings of exclusion (loneliness). This, in turn,
brought about feelings of having had different experiences from fluent children. Below are
participant narratives exemplifying the subordinate theme loneliness.
Alex (532) - Ah, you know, my family and friends it was ah, you know, they were
clueless, you know, what to do anyhow. Um, certainly my mom and my dad said that
they had already done so damage ah already, you know, so they're certainly not going
to talk about it. So, ah, um, you, ah you see no one else, no one, no one, it was ah, ah,
ah... see, isolation. I was on my own.
Evan (85-89) -1 don't remember much about my childhood in southeastern Europe.
There are various instances, instances (unintelligible) all of which are unpleasant.
Um (unintelligible) English that I still carry to today. It's like, I go out to the street to
play with other children and I, and I start talking to them and, and I stutter. And I
wasn't, and then one of them, tries to ah, one of them imitates me to make fun of me
and such. I was probably, probably 5 or 6 years-old at that time and of course it made
me feel as an outsider. That was quite unpleasant and that's an image I can think of, if
I think of more.
Hayley (550) -1 didn't feel like I belonged anywhere. It was a very depressing, sad,
my childhood was not fun! And to this day I suffer from depression, I think as a
result of a lot of the a-, the abuse I took secondary to my stuttering.
Isabelle (057) - (referring to her childhood) I was pretty, you know, isolated.
Ken (181-183) - It totally shut me down. I, I felt, felt, I felt paralyzed. I didn't know
what to do, you know... 'cause, you know, when you have the, the stuttering it holds
you back so, so much from doing so many things, you know, and at that age (30 years
old), you know, I never expected it to happen to me, you know.
4.2.1.5 Shame
Participants also describe shame as an emotion related to their stuttering, not to be confused
with embarrassment. Narratives show that participants usually feel shame about him or
herself in the context of having overtly stuttered, but overt stuttering is not necessary for
participants to feel shame. According to Tangney, Miller, Flicker, and Barlow (1996), and
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Miller and Tangney (1994), shame typically occurs in social contexts, but can occurred when
alone. Shame is related to a foreseeable event which reveals one's deep-seated flaws
(Tangney et al., 1996). In contrast, embarrassment (4.2.1.1) results from relatively trivial
accidents (Miller & Tangney, 1994). In the realm of stuttering, this suggests that
embarrassment is related to overt instances of stuttering in public, whereas shame is related
to the negative identity of being a PWS or a stutterer. This finding about shame also agrees
with Corcoran and M. Stewart's (1998) study about the experience of stuttering. As
previously mentioned (4.2.1.2), suffering emerged as the main theme, with shame as one of
the four elements supporting the main theme. This also agrees with the Sheehan's (1970)
description of the iceberg analogy, in which he suggests that concealment behaviors
including avoidances to be associated with feelings of fear, guilt, and shame. Sheehan
(1970) describes shame as the failure to fulfill the public's fluency-speaker role expectation.
Unlike Tangney et al. (1996) and Miller and Tangney (1994) Sheehan views shame as a
public or interpersonal event. The quotes below are examples of the subordinate theme of
shame.
Bill (247) - So I stood there, ah, ah shamefully (Bill laughs) and I, and I gave the ah
resemblance of what a presentation was.
Evan (29-31) - And in, if you were talking to me in, about 10 or 15 years ago, I
would, I would, I couldn't even refuse to talk to you, because stuttering for me was eh
was a shame and embarrassment and I, and I didn't like talking about it and I didn't
like sharing it with it with others. I prefer to keep it as much as possible undercover.
So if-, so again if you had asked me this question 10 years ago I, I could say it, I
could say that I'm trying to hide the fact that I stutter was one of the primary goals of
my day-to-day activities.
Isabelle (223) -1 still have shame if I'm looking, if-, in fact it happened last night. I
was speaking to a client's mother and I wasn't-, was it last night or the night before,
when I just was not feeling all that well and like right in the mid-sentence, I blocked.
And I just felt it immediately, you know, I just felt that shame.
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Lynn (9) - Um, but when I was growing up I, I really let it hold me back a lot. Um, I
was really ashamed of my stuttering, and it was more severe then 'cause I tried so
hard not to stutter.
4.2.2 Impact of Stuttering
All 12 participants made it clear in his or her interview that stuttering has impacted their life
in several ways. The impact of stuttering on the lives of PWS has been a topic of discussion
and research for years (Anderson & Felsenfeld, 2003; Corcoran & M. Stewart, 1998;
Crichton-Smith, 2002; Finn, 1997; Hayhow, Cray, & Enderby, 2002; Hugh-Jones & P. K.
Smith, 1999; Klompas & Ross, 2004; Sheehan, 1970). Seven domains in which stuttering
impacts the lives of the participants have emerged from an analysis of their narratives. These
domains are considered to be subordinate themes and are as followed: (a) personality, (b)
bullying/teasing, (c) education, (d) dating, (e) career choice/advancement, (f) work
performance, and (g) other people's perception. These findings concur with past research.
These subordinate themes are described.
4.2.2.1 Personality
Participant narratives suggest that participants feel that their personalities were shaped by
their stuttering. Participants describe being shy, quiet, not outgoing, passive aggressive,
introverted, and a follower instead of being a leader. Participant beliefs generally disagree
with Sheehan (1970). He states that personality comparisons of individuals who are
normally fluent and individuals who stutter have consistently yielded no differences, except
on the level of aspiration measures. Aspiration may be regarded as measures of self-esteem
and self-perception (Sheehan & Zelen, 1955; Zelen, Sheehan, & Bugental, 1954). This
suggests that stuttering may impact an individual's self-esteem and self-perceptions which
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may be manifested in an individual's personality. Sheehan (1970) use of the "giant in
chains" syndrome to describe the overattribution of problems to an individual's own
stuttering can also be applied to the perceived differences in personalities of PWS. Craig,
Blumgart, and Tran (2009) suggest that adults who stutter to have lower social functioning
and that stuttering negatively impacts social interaction capacity, which would have
implications upon personality. Participant narratives about the subordinate theme personality
follow.
Alex (89) - You know, it's a very thick shell to keep, to keep life out and thinking he
(SLP) was ah trying to get me out of that shell.
Bill (453-455) I think there are some aspects of my disability that, that has held me
back, because I think that, I think that it's pushed me away from ah people, you
know. Like, unless we have like interest, I don't really see a need for like me and my
neighbor to be buddies. You know what I mean? Like I'm not going to sit and watch
the game with him unless, I generally have like things in common with him, right?
Connor (9) - My life as a person who stutters, um ... well I guess I've always felt as
though I am, um... stuttering has made me a very passive person. I would always
avoid arguments, disagreements, and I just feel like it made me, cause me to not to
say many things, in you know in, in just many types of situations where I feel like if I
wasn't a person who stuttered I would have said. I think that I'm realizing um how
when I thought I was letting things, which might bother me, roll off my back, I think
I'm now realizing I was internalizing them.
Connor (51) - Yeah, I, I mean um, .. .a lot of the shyness is still there today when I'm
at the meetings, meetings with colleagues or where I work I rarely asked a question,
at the end of a talk. Um, I'm still rather non-confrontational and I think that kind of
led me towards passive-aggressive behavior.
Evan (413) - That brings about interesting fault I have. I had about my, about my ah
tendency for introversion. I, I can imagine that if I, if I, if I didn't stutter I would be, I
would be h-, I would be this or that introvert. But my, but my, but my guess is that,
even if I, even if I did not stutter I would still remain on the, on the introverted side of
the scale.
Fred (129) - It definitely held me back in both ways. I er didn't mind but, as a kid I
didn't join the boy scouts. But I wasn't a leader not just, just was one, one of the
boys who just went along. Ah, also when I graduated from high school I didn't know
what I wanted to do, I didn't know what I could do as a person who stutters.
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Jackie (64) - I've always had, um, you know, the same close group of friends and
sometimes I feel like maybe I would have had more friends if I was more social, and I
do attribute that to stuttering and I feel like it did make me shy as I would never use
the phone really except if it was to, like, a couple of friends. So I never, it never
even occurred to me to, you know, ask someone for their phone number so I could
call them up just to talk or to get together. If I did make a phone call it was usually
just to say, 'do you want to hang out?' or 'do you want to do this?' I was never one
of those teenagers to talk on the phone and, even now I'm comfortable on the phone,
but I'm not a big phone person and I still, I still probably, um, don't make as many
social contacts as I wish I could and that's just, I don't know I guess, maybe I just
came to accept I'm not a phone person. But ah, sometimes it just bothers me that I'm
not. And, is it because of the stuttering? You know, I'll never really know, but I, I
would say that's why I was always very scared to use the phone.
Lynn (21-27) - No, I always had friends, but um I never told stories. I never re-, I
was always kind of in the background. And I remember um, when I was in high
school or junior high or whatever it was, um, when it was like, um, popular to fill out
those online surveys about your friends, and it includes the funniest, who's whatever.
Who's the most shy was always me. (Lynn laughs)
Investigator:
Really?
Lynn:
Yeah, and that they di-, had no idea that it was completely related to
my stuttering. Like, I always had something I wanted to say, I just would choose not
to say it all the time. Um, oh yeah, I was extremely quiet. Um, and I, I think one of
the ways I always kind of coped with that is I, I um, I laughed a lot. Because I have
pr-, p-, as far as like family goes they're kind of funny.
4.2.2.2 Bullying/Teasing
Participants' experiences of stuttering include discussion about bullying and teasing. Most
discussion about bullying and teasing related to situations that took place at school or work
and seem to influence attitudes toward school and work. In different instance a participant
mistook his girlfriend's question about his speech as her making fun of him when she did not
know about his stuttering, which may shed light on the shame felt about stuttering and/or past
experiences of others bringing up the topic. This subordinate theme coincides with several
studies that relate to bullying and teasing. Finn (1997) study of 15 PWS revealed that all but
one participant (93.3%) mentioned listener reactions such as teasing and ridicule. Hugh-
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Jones and Smith (1999) found that 83% of the 276 people surveyed remembered being
bullied at school and that such bullying had short and long-term consequences particularly on
self-esteem and personal relationships. Anderson and Felsenfeld (2003) found that several of
the seven participants reflecting on the first recollection of their stuttering were associated
with episodes of peer teasing or teacher disapproval. Murphy, Yaruss, & Quesal (2007a;
2007b) also found bullying to be prevalent among children who stutter and offer suggestions
on overcoming te impact of this bullying. Interestingly, their suggestions include both selfdisclosure and cognitive restructuring that might occur at self-help conferences. The
following narratives from participants support this subordinate theme bullying/teasing.
Alex (121-123) - Well I was in the 5th grade and we were waiting in the line to go out
of the classroom and then s-, ah then I remember ah me saying ah something aloud
where the teacher could hear it and I stuttered on the word and then the teacher
mocked me and of course the class roared. And I don't think I'll ever forget that
moment how it felt.
Bill (225) - Oh um, the worst part of it was the ah, was the ah ridicule. Back in high
school, um, I have, I have gotten into many fights. Um and, a prime example, I'm,
I'm, I am certainly not proud of this. You know, um back in high school, I was an
athlete in a very physical sport for about 10 years and ah, when I was a junior there
was a guy on my team. Um, he would always make fun of me, and he was inferior as
an athlete, and ah, so, and again I know-, I know this is, this is ah terribly, this is, this
is terrible but, ah, one day we're like, we're like ah competing and, and as athletes
we're like talking and he started to mock how I was talking. So, while we were
competing I made a move on him, but my head went into this collar bone and broke
his collar bone in half.
Bill (247) - So I stood there, ah, ah shamefully (Bill laughs) and I, and I gave the ah
resemblance of what a presentation was. I got a good grade. (Bill laughs) 'Cause he
felt bad for me I guess but it was, it was mortifying. And then of course the, the
worst thing is, the next day, because then you get this complex. Well they're looking
at me. 'Hey there's, there's that guy,' you know, 'There-, ah that's him right there.'
'That's that guy.' 'Oh man that guy, is this guy, is this guy ah handicap?' 'Cause
that's what the thought-, that's what a lot of people think. Right? They think that and
it sucks, man. Really does. But you work through it; I mean... you work through it,
that's all you can do. Because you can't change it. You have to get by the day.
Right?
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Bill (347) - Um, one day she goes, 'Bill, what's wrong with you?' I was like, 'What's
up babe?' She goes, 'You're stuttering so bad today.' And I got really offended. I
said, 'Well it's 'cause I have a disability. I can't believe you,' you know, 'I have this
disability and you're going to point it out to me.' And then I realized, you know
what, she had no idea, and that's when I told her my story- and then she said, 'I didn't
know. I, I did not know.'
Bill (361) -1 went to my mailbox at work and someone put a Christmas card in the
box. And they put, 'Merry C, C - C - C - Christmas,' in my box, someone from my
team. So, I kind of went back to my roots on how I used to deal with things. So I
into-, I went up to my, to my ah co-workers and I wasn't the supervisor then, and I
said, 'Hey, I said you guys know that I have a disability. I don't talk about it.' And I
said, 'the ah coward that put this in my box, let's go talk about this in the parking lot.
Let's go ahead and do this.' And ah no one, no one would say, would say like a
word, so I think I had said something to, to, to the affect of, 'Fuck you. You bunch of
cowards.' (unintelligible) And that was it. And I shouldn't have done that, but it
really made me upset. I mean it's, it is humiliating, and ah, I mean I mean heck, if
you see, if you see a guy walking around with no arms do you, do you ah tease that
guy, right? If you see a kid that has Down's Syndrome, do you, do you, do you ah
tease that guy? No man, that's, but unfortunately, people don't see it that way. You
know, they think it's a social ah condition.
Connor (27) - when they say my name, they might say, 'C-C-C-C-Connor,'' I don't
remember being called anything like stutter-box or Porky Pig or anything like that.
Um, I think that I recall a couple of kids who would bully me and may not really
bully me about my stuttering, but I think they view my stuttering as sort of a
weakness so they thought I was someone that they could bully.
Connor (29-31) -1 remember once in social studies, everyone in the class had to read
and it was being, and it was ah tape recorded on top of that.
Investigator:
Terrific.
Connor:
tape.
Yeah. And then someone at the end of class told me that I ruined the
Fred (145-147) - And he is about the only one that I can remember as an employer
who called me aside and actually asked me about it.
Investigator:
What, what was that conversation like?
Fred:
Not like you would expect. He talked to me about it and I explained it.
And he says, 'Okay,' he says, 'I know you can talk when you want to, if I ever hear
you stuttering again I'll give you a boot in the ass.'
Ken (139) - Yeah, but ah, as far as my, my co-workers not, not all of them but a few
of them used to ring up, ring my phone and then hang up and I was-, I guess they
realized I was having a problem, but they really weren't helping me, they made it
even worse for me, you know.
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4.2.2.3 Education
Participants discuss their feelings on how their stuttering impacted their education during
childhood and as an adult. Experiences include fear, avoidance, and embarrassment related
to asking or answering questions in class, reading aloud in class, or giving oral presentations.
This finding concurs with previous research about the impact of stuttering on education.
Hayhow, Cray, and Enderby's (2002) questionnaire that resulted in 332 returned
questionnaires indicate that stuttering had the greatest adverse effect on both school life and
occupation. Crichton-Smith (2002) accounts of 14 PWS reveal feelings of exclusion and the
use of avoidance strategies during childhood, which were believed to have affected progress
at school. Hayhow, Cray, and Enderby's (2002) questionnaire revealed that life at school
was the most affected aspect of participants' lives with 95% of 327 respondents reporting
some effect and 56% of all respondents reporting 'a lot' of effect. In addition, many had
strong and unpleasant memories of life at school. Lastly, Klompas and Ross (2004) study of
16 PWS, indicate that the majority of participants perceived their stuttering to have impacted
on their academic performance at school, and relationships with teachers and classmates.
The following quotes from participants exemplify the subordinate theme regarding the
impact of stuttering on education.
Alex (125) - One of the business classes that I dropped ah five ah times, five times ah
because I know that I had to get up in front of the class and every term, you see, the
same professor taught that class and it was the only teacher. Ah, how that felt, you
know.
Bill (245-247) - And, and there was a part of me, and I've never done this before in
my life, whenever he said that we would have to do this, I wanted to pull him aside
and say, 'Hey, I have this disability. I really can't do it.' But I didn't want to use it
as an excuse. So I stood there, ah, ah shamefully (Bill laughs) and I, and I gave the
ah resemblance of what a presentation was. I got a good grade. (Bill laughs) 'Cause
he felt bad for me I guess but it was, it was mortifying.
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Evan (91) - In school I, I did not participate in classes as much as I could. It's
something that I remember.
Evan (97) - If the teacher asks a question and you raise your hand, you get brownie
points. And the problem with me was that I would study but, but even then ah,
questions were asked tr-, asked uh to which I already knew the answer, I wouldn't
volunteer and so I only spoke ah when, when the teacher will explicitly choose me to
answer the question.
Fred (330-332) - Well, like most stutterers when, when the teacher would ask a
question, everybody the students would raise their hand if they wanted to answer.
And I always waiting until a bunch of kids raised their hands before I raised mine. So
just, so, so to let the teacher know, 'I think I got the answer but, but don't ask, don't
call on me first.' (both laugh)
Isabelle (35-37) -1 was one of those people who really hid it as mu-, as much as I, as
much as I thought that I could. You know, I basically went through school saying I
don't know or not answering. Um, I tried to really hide it as much as I possibly can.
It certainly impacted me. Um... you know, I've gone through a lot of speech therapy,
I think, early on always looking for that magic answer.
Isabelle (57) -1 went through elementary school, kind of, you know, isolated, you
know, always hiding in the back of the room. Um, I mean I never raised my hand, I
don't think ever. Um, I mean, even in my Masters I don't think I e-, I ever raised my
hand. Um.. .(unintelligible), you know, I think I was like al-, like almost, you know,
hoping to be ignored, you know, if I kind of sat in the back of the room hiding,
nobody would like really notice me.
Isabelle (63) - Sure, I never like, you know, I would never ask a question if there was
they said that I, I didn't understand, I mean, I wasn't going to ask them to clarify it. I
mean I, I, I think it affected me academically 'cause I think after a while I kind of
gave up at school, 'cause I was like, 'you know what, even if I do my homework I'm
not volunteering the information.'
Lynn (129-131) - As far as college stuff, whenever there was a presentation, which
happened, you know, a handful of times, I would always get out of it. Um, there's
one time, I think my sophomore year, where I thought that I could just do it e-,
because it was really supposed to be a simple thing. It looked, he was, in philosophy
class and we were supposed to just recap what we talked about the last class period-.
And it was just like a 3 minute thing. You could do it right from your seat. You
know. I was like, 'I'm gonna do this,' and I really prepared. I had recorded the, the
session before. I knew exactly what I was gonna say, and you know, um, and I
couldn't get a word out. Like, I was stuttering on 'the' and like every single word.
Um, and I, I think I just kind of stopped and didn't even get halfway through it, and I
was just like, 'I'm done'. Um, and I don't even know how I didn't run out of there
crying. I, I just-, I don't think I absorbed anything that happened that period, and I
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had some of these guy friends, um were, were there, and I never talked to them about
it. Like it was one of the most embarrassing things I had ever gone through.
4.2.2.4 Dating
Some participants discussed the impact that stuttering has on dating. Participants disclose
some of the challenges associated dating including misconceptions of stuttering by a
potential dating partner, avoidances of approaching potential dating partners, and the fears
and decisions associated with the lack of dating. Hayhow, Cray, and Enderby's (2002)
questionnaire revealed that of the 316 respondents, 62% felt that relationships {friendships
were a separate questionnaire item) were affected by stuttering, with 24% of all respondents
reporting that stuttering affected relationships 'a lot.' Hugh-Jones and Smith's (1999) survey
of 276 PWS provided more detailed information about school experiences and found that
personal relationships and self-esteem were impacted by the bullying remembered by 83% of
respondents. One can conclude this finding to play a role in the dating life of individuals
who stutter. The following narratives from participants help to illustrate this subordinate
theme that relates to how stuttering impacts participants' dating.
Alex (123) -1 remember my friends ah talking to me after they talked to a girl that I
had just, that I had just ah got off the phone with and they told me that she says, 'Boy
is he a jerk,' (Alex laughs) and of course that was ah related to, you know, how I
couldn't, how I couldn't communicate.
Connor (47-49) - In adulthood, I'm coming to terms with it. I mean, through a lot of
adulthood I, I'd say I had some of the same issues with approaching women for dates
and things and um... and um.. .not speaking up when I would like to.
Hayley (614) -1 didn't do a lot of dating or anything. Someone wanted me, I grabbed
it.
Isabelle (249-251) -1 mean I'm sure I would've dated more, you know, early on if I
was able to communicate easier. I got married, I-, I was married once before and I
get married young I think and my ex husband stuttered. Um, and I probably like
married him because I thought oh, you know, maybe I won't meet anybody else.
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Um... so certainly, you know in-, I would say it affected it, you know, more in terms
of who I wanted to have, you know, who I wanted to date. You know, could I speak
to them on the phone? Would I be able to go out with them?
4.2.2.5 Career Choice/Advancement
Some participants reflect back on their career choices and the paths of their career.
Narratives show that participants had selected a variety of careers. Several were sought
careers in which there was more speaking. It was not clear if the participants that were not in
fields known for large amounts of speaking had selected such careers because of their
stuttering. Some participants who prefer speaking intensive careers mention their stuttering
as part of the reason. One participant believed that talking more would be helpful for his
stuttering, while another participant was inspired to become an SLP in a conversation with
another SLP about her own stuttering. Participants report past supervisors' misconceptions
of stuttering and how they have resulted in what many would consider to be discrimination.
One participant mentions their stuttering as part of the difficulty in looking for work, but
eliminates stuttering as the reason for having been laid off. Among participants who did not
select talking intensive careers, participants appear to be passive or even fearful of about
taking on a supervisory role, some referring to their stuttering as the reason for not being
more proactive about seeking promotion. One participant who was a professional in a
speaking intensive career changed to a non-speaking intensive career because of the fear of
the oral part of a state licensing exam.
These findings generally agree with past research in this domain. Klompas and Ross (2004)
found that stuttering did not have an adverse effect on choice of occupation, ability to obtain
work, and relationships with managers and co-workers, although it was perceived to
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influence their work performance and hamper their chances for promotion. Results from
Klein and Hood's (2004) questionnaire show that of 232 respondents (PWS), 70% agreed
that stuttering has a negative impact on hiring and promotion, and 20% had rejected a job or
promotion because of their stuttering. Hayhow, Cray, and Enderby's (2002) questionnaire
revealed that of the 318 respondents, 85% reported that stuttering affected their occupation
choice in some way, with 39% of the total respondents reporting that stuttering affected them
'a lot.' Career choice is also related to career opportunities available. Gabel, G. W. Blood,
Tellis, and Althouse (2004) concluded that the overall perception of stuttering has affected
career opportunities. This conclusion was based on the judgments of college students
towards the appropriate and inappropriate careers for PWS. They found that 20 careers were
judged to be inappropriate choices for PWS, while 23 careers were judged to be appropriate
choices for PWS. This lends support to the existence of role entrapment related to career
choices. Blumgart, Tran, and Craig (2010) concluded that 50% of their 200 participants
believed that their stuttering made it difficult to obtain employment, 38% reported that
stuttering to be the reason for failure for promotion, and 8% reported stuttering to be the
reason for termination from their job. The following quotes from participants exemplify the
subordinate theme regarding the impact of stuttering on career choice/advancement.
Alex (484-486) - Ah worked with in a job, you see while I was in college, I was, I
worked in a parking lot. Ah you see, parking the cars and then, ah then the boss had
said something about, you know, 'He can't do that because he stutters,' and then, and
then my friend came back and says, and he said something like, ah, ah, ah, ah 'He
may ah stutter, but it doesn't affect the way that he thinks, you see, unlike you.' (both
laugh)
Dylan (195) -1 can rest assure that there are jobs that I didn't get, and, because of my
speech, and I think that a lot of times it was just more of a personality clash.
Dylan (250-254) -1 think that I really kind of solidly decided that I wanted to be a
teacher, probably around when I turned 19. And I think a lot of it had to do with the
fact that... I wanted to speak more... 'Cause I really think that for people who
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stutter... they're not going to improve unless they speak. And I am not sure why I
figured this out when I was 19. I really don't.
Fred (19) -1 believe it has held me back for a lot of years and it wasn't until my third
therapy which was about 35 years ago, did I really, ah make a big change. It was at a
time when ah a lot of the people my age were getting promotions and I was not.
Fred (151-157)-I always picked a job where I would be alone. (Fred laughs) And
um, ah, until the opportunity came up to supervise and then that was totally different
from what, what I, what I had, had ever done.
Investigator: That's interesting because you choose the jobs where you would be
alone, but it wasn't until you saw everyone else getting these opportunities that you
had wanted to do that.
Fred:
Well I felt that that was, was an opportunity that they offered it to me
and I says, 'Well, you know, maybe that that would lead to better things.'
Gilda (396-400) - Wish I can do more with that, because I think that stopped me,
total-, that is one of the things that stop me, my stuttering. Mhm.
Investigator:
From doing what?
Gilda:
Becoming something-, for promotion-wise, or um getting another job.
You know I've gotten like offers and I kind of h-, like, 'no,' you know, 'cause um,
the fear of completing it.
Investigator:
The fear of completing what?
Gilda:
The task, like communication, like ah interactions. Interactions with a
lot of people, so I think that it totally has affected me job-wise.
Hayley (17-23) - Um, there was a point where I had to go for licensing in my state.
And part of the process was an oral kind of in front of a j - , jury kind of a thing, so, um
I decided to get a little more speech therapy before I did that and I went with fluency
shaping and unfortunately it backfired totally. And I came home and I just got worse
and worse and I couldn't pull anything out. I got really frustrated so I didn't take the
test, quit my job, and decided I would need something that doesn't require talking and
that's when I started my service business which I've been doing for 15 years.
Hayley (135-137) - All through my life but once I ref-, I let stuttering kick my butt is
what I did. And and I let it change my entire life and career and everything I loved.
Isabelle (45-49) -1 had a different major coming out of school. I was an business
professional for approximately 5 years. I mean, I don't think I even thought about
going into a field. I know at the time I thought about going into social work and I
was a little nervous about it. Um, so I picked a different major. I'm not really sure if
I picked it 'cause, you know, I thought it didn't require any talking or everyone said,
'oh, you know, it's a really good field.' I mean I was always very good in that area.
But, definitely, after being in it for 5 years, you know, I realized that I needed to be in
a field that I could really interact more.
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Ken (305-311) -1 got laid off from my job which had nothing to do with, with my
speech by the way... During my layoff period.. .Ah, th-, th-, ah, that was a difficult
period for me too, you know, being without a job and having the stuttering on top of
that and trying to look for a job and making phone calls and things like that. So I
went through a very difficult period around that time.
Lynn (151) - That was like one of the best conversations ever, 'cause I had no idea
that um, y-, that, ah everything that I had been struggling with um... just, I had no
idea that there were speech therapists out there that really understood stuttering and
that um a big part of speech therapy is working on changing those attitudes, um,
without your stuttering and so I had never known that and so meeting her and, and the
fact that she understood was amazing and ah, and I had no idea how much counseling
was involved in speech therapy. I, I-, it just made me want to become a speech
therapist like, after that conversation.
4.2.2.6 Work Performance
Participants disclose thoughts about their own work performance and the role that stuttering
played. This topic or subordinate theme is very closely related to the previous subordinate
theme career choice/advancement (4.2.2.5) because of its inclusion of job promotions.
Promotions result from the decisions of both employer and employee allowing the employee
to take on more important responsibilities. Before it gets to the point of making decisions, an
employee's performance needs to be of a certain standard to render the recognition of their
superior(s). This subordinate theme, work performance, focuses on the impact of stuttering
upon participants' job performance. As previously mentioned due to the complexity there
will be overlap with other themes and subordinate themes, especially career
choice/advancement. Participants report that their stutter played a role in their decisions to
avoid speaking, or to modify or abbreviate interactions at the cost of maximal job
performance to minimize the possibility of stuttering. Narratives reveal that participants
avoid: asking questions, managerial roles, public speaking, and conveying pertinent
information. Research supports the finding that PWS believe their stuttering to impact their
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job performance. Klompas and Ross (2004) found that PWS perceived their stuttering to
hamper work performance and promotion opportunities. Klein and Hood's (2004)
questionnaire for PWS reveal that 33% of 232 respondents believe that stuttering does
interfere with job performance. The following participant narratives exemplify the
subordinate theme of the impact of stuttering upon work performance.
Connor (51) - Yeah, I, I mean um, .. .a lot of the shyness is still there today when I'm
at the meetings, meetings with colleagues or where I work I rarely asked a question,
at the end of a talk.
Evan (431-435) -1 still potentials of my profession to a large degree. But I, I do think
that if I have, if I had not stuttered I, I, I gradually could have, could have ah
progressed more in my career as in, I could have become eh, eh, manager or maybe a
more influential technical person. Even though at my core I would have remained
technical.
Isabelle (97) -1 had a tremendous fear of public speaking and I hated that 'cause I felt
like work-wise and in terms of um furthering m-, you know, myself as a professional
that was really holding me back. I mean, you know, I was petrified of that.
Ken (237-239) - That's how I used to answer the phone, you know, 'Service center,
Ken speaking' and I, I couldn't get that out anymore, so yeah, I was like struggling,
you know, should I try this, should I try that, and no matter what I tried I was
stuttering on every single thing and then eventually I couldn't say my name and I
couldn't say certai-, yeah. I, I was going nuts.
Ken (1051) - You know, but prior to that I mean I was more relaxed, I spoke fluent-, I
mean even my, I mean, it totally changed my job, my confidence in r-, doing my job I
was, I couldn't do my job anymore, not as well as, as I us-, I mean prior to that.
Lynn (179) - There were certain shelters I just wouldn't give referrals to 'cause I
didn't want to say the name of the shelter. Like, it was really pathetic. Ah eh, but it
was all like, it was such... to me my stuttering was such a big deal that these poor
people were homeless, like I didn't (Lynn laughs) want them to know that I stuttered.
It was really, really hard, but I, I did stutter a lot on that phone and sometimes people
would hang up on me or they'd be like, 'What is this!?' you know, they would be so
confused, or they'd say we have a bad connection. And then some people I
remember, at the beginning um, some woman said to me, she's like, 'You hang in
there.' or (Lynn laughs) something like that.
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4.2.2.7 Other People's Perception
Participant narratives reveal their insights to how other people perceive the stuttering of the
participant and the participant as a person. Most of the subordinate themes about the impact
of stuttering include examples of misconceptions about stuttering in general or what other's
believe about an individual who stutters. In addition, other narratives have also given some
insight to how participants believe they are perceived by others. Participants report what
they believed were misconceptions about their stuttering and him or her. Narratives include
discussion about the people's perception: that people do not recognize stuttering as a problem
that can be handicapping, that people making judgments about a PWS's character (and work
performance) based on how much they stuttering, that sedatives for relaxation are an
appropriate prescription for a PWS (medical doctor in Southeast Europe), and that stuttering
is readily controllable and can cease upon command or physical threat. There are many
different perceptions about stuttering that could be discussed in this section, but overall it can
be said that there are misperceptions of stuttering and that they are generally negative.
Klompas and Ross (2004) findings agree that their participants believe that people to
generally have negative reactions toward stuttering. Many studies show that misperceptions
exist in education (Crowe & Walton, 1981; L. L. Emerick, 1960; Horsley & FitzGibbon,
1987; Lass, Pannbacker, Schmitt, Kiser, Mussa, & Lockhart, 1994; Lass, Ruscello,
Pannbacker, Schmitt, & Everly-Myers, 1989; Lass, Ruscello, Schmitt, Pannbacker, Orlando,
Dean, Ruziska, & Bradshaw, 1992; Ruscello, Lass, Schmitt, & Pannbacker, 1994; St. Louis
& Lass, 1981; Woods & Williams, 1976; Yeakle & E. B. Cooper, 1986). Such
misconceptions of stuttering can have a profound impact on the education of PWS. In
addition, Gabel, G. W. Blood, Tellis, and Althouse (2004) study reveal how misconceptions
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can greatly impact the career paths of PWS. Many of the participant quotes in the
subordinate themes related to education (4.2.2.3), dating (4.2.2.4), and career
choice/advancement (4.2.2.5) can support this subordinate theme about other people's
perception. Below are some other quotes from participants to support this subordinate
theme.
Alex (482) - After the conference I made contact ah with a person that ah calls me
every now and then, a person I grew up ah since I was in the 1st grade and um, and I,
and I told him, I went to a conference online, and then he replied back. Ah he says, 'I
never realized ah that you had a problem with it,' and, and, and about 5 minutes after
I picked up myself up off the floor (both laugh), I said, 'Are you kidding me?!' You
know, I wrote back, I says, 'I can't believe ah that you didn't think it was a big deal!
I mean, it was my life and it was everything! You know, every moment of the day I
would think about it, and, and ah you couldn't see that. Ah and we never talked about
it.' Ah, ah, ah, but, you know, and then he said, 'We'll I never really thought about
it.'
Dylan (157) - the owner of that place really, um, seemed to ju-judge my performance
based on how fluent I was at a particular shift. You know, that, that was just, that was
probably something that I definitely would not attribute to a positive experience.
Because it probably took me a couple of summers for me to almost change my
perception of myself.
Dylan (161) -1 overheard her make this comment to my parents one night. It was a
Wednesday night so they came by because they wanted to have supper there. They
wanted to see where I worked. And you know, they heard the place made great pizza.
And the boss made some sort of a comment along the lines, 'Oh he's a great kid.
Some days he comes in here and he hardly stutters.' I mean, you know, it just kind of
makes you wonder what's going through their head about you!
Evan (123-127) -1 don't remember what it, I don't remember what exactly the
medicine was. I remember the doctor ah was sort of cautioning my mom that the
medicine could pr-, could ah, could re-, ah could result in some lethargies and some
need for some sort of sedative just to make me em- to make me relax and such. Ah
looking back I don't think that the doctor knew what he was doing or, or had a totally
incorrect conception of stuttering itself. Probably assumed that ah the boy seems
tense and he stutters and so I prescribe sedatives, he will get relaxed and that he won't
stutter, but uh, he might have um messed up the cause and effect thing.
Fred (143-147) - there was ah, the pe-, the company that, that hired us, er had a
foreman. And all of us were, you know, just anybody. And he is about the only one
that I can remember as an employer who called me aside and actually asked me about
it.
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Investigator:
What, what was that conversation like?
Fred:
Not like you would expect. He talked to me about it and I explained it.
And he says, 'Okay,' he says, 'I know you can talk when you want to, if I ever hear
you stuttering again I'll give you a boot in the ass.' (both laugh)
4.2.3 Avoidance of Words and Situations
Participants discuss instances in which they would avoid words or situations. Participants
report avoidances in order to avoid the shame and embarrassment of stuttering. Participants
claim that they avoid particular words by leaving out part of their message or by
cirucmlocuting the feared words by using other words. Three participants spoke about the
use of circumlocutions and how they do not seem to work for them because they end up
stuttering anyway or the syntactic and/or semantic confusion it may cause the listener to
have. Their following narratives will illustrate their thoughts on circumlocutions.
Alex (147-155) - Well, you know, it didn't necessarily have to be blocks, you see,
that I had. It was just that the wo-, that the words that I chose, you know, as a result,
you know, not being able to say certain words. That's the avoiding it. Whatever it
was I communicated, whatever, you see, I got out, it translated into, you see, 'what an
idiot.' You know, so, so, so, so it wasn't actually the physical blocks, but it was just
the whole combination of, you know, what a stutterer has to work with when they're
trying to communicate. But, but, and a lot of times I believe that I'm not aware of the
words I'm trying to find, you know, it isn't a big calculated process, it's like, 'Okay,
what can I get in that spot.' You know, what can I fit in there? You see, does it, see
does it go along with what I am thinking well it doesn't have to and if it doesn't than I
have to, you know, try to figure out to change everything, you see, that I'm, ah see
every-, everything about the subject and the context and everything. I have to
rearrange the whole paragraph of the whole, the whole page, you know just because,
of this ah is the only word, this is ah the only word that I can get right now to put into
that spot, so it may change ah the outcome of everything that I'm trying to say. So
yeah, that's got to be a really kind of ah challenging for a listener to try to figure out
what the heck I am trying to say and I feel like it's, ah, ah, I feel like it's easier for me
to communicate, if I go right to the block, have a block. You know, I'd take my
chances there. Ah, can I lose, can I lose, lose the attention of the listener?
Absolutely! You know, but by putting words in there, you see, where I'm going to
have to change everything around it, everything that I'm trying to say. Ah, the
probabilities are far likely I'm not going to be able to say what I want to.
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Gilda (256) - (referring to avoidance behaviors as part of covert stuttering) Oh, ah
like that covert stuttering thing? That doesn't even work that much. Um, it was just
frustrating to find a word that I didn't want to say almost. You know, I would just ah
stop saying that or just say, 'Oh no, never mind,' you know, whatever. It wasn't
healthy for me in a way, because I never got to what I wanted to say. Like if I wanted
like another type of coffee I would have to ask for 'other type,' because I couldn't say
it and like, it just wasn't functioning for me anymore, you know.
Lynn (41-43) -1 felt like I wasn't gonna be able to say it. And the word 'butter'.
And it was three different kinds of cookies and I changed it to 'margarine'. (LL
laughs) It doesn't make any sense. And afterwards like, I just tried to laugh it off. I
don't even think he-, ah 'cause I didn't say it. I did that 'cause I thought I might
stutter and I just, you know, tried to laugh it off like, 'well man aren't I weird.' (LL
laughs), You know? But he didn't get it. Yeah, he never handled his stuttering the
way that I did. I was hugely into avoiding um, avoiding words and situations in that I
would say a different name.
Participants also discuss the avoidance of situations to evade the shame and embarrassment
associated with stuttering. For example:
Lynn (89-91) - Like my mom can remember um, when I was really little, I would-,
I'd come into the kitchen and want to tell her something, and I would start to talk and
then I would just put my head down and leave the room. And she said she didn't
realize at the time that that was related to my stuttering. But it was, and I was really
little when I was doing that.
Participants reveal that they would either avoid situations completely or disclose leaving
enjoyable situations to avoid stuttering. It should be noted that these three participants were
aware of their avoidance behaviors and choose to describe it. Others participants may also
have avoidance behaviors too. Past theorists, clinicians, and researchers have discussed
avoidance and how it plays a role in the experience of stuttering.
Sheehan (1970) recognizes avoidances and other concealment behaviors as part of the
"beneath the surface" features as part of his iceberg analogy of stuttering. Furthermore he
associates concealment behaviors with feelings of fear, guilt, and shame. Sheehan explains
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how concealment behaviors are used to hide stuttering or individuals' identity as "a
stutterer." He further explains that such strategies often persist because of periodic successes
of avoiding stuttered speech and how such behavior impede upon the broader success of
communicating a message in the manner in which the speaker had originally intended and
become often become a part of the disorder of stuttering.
Van Riper (1982) not only recognizes avoidances, but states, "no description of stuttering
behavior would be complete without a discussion of the behaviors stutterers use to avoid the
experience of fractured fluency" (pp. 130-131) and considers them to be "overt reactions to
the fear of stuttering" (p. 130). Van Riper uses Bluemel's (1957) description of avoidance to
help illustrate:
The chronic stage of stammering is usually marked by speech avoidance and
aversion. The stammerer avoids difficult words, and he attempts to escape menacing
situations. He is obsessed in his attitude toward his speech difficulties, and he lives
his anxieties in retrospect and in anticipation.
The stammerer dodges not only words; he dodges people and situations. He will
cross the street or turn the corner rather than face the necessity for conversation. In
scanning a menu he will look for words that he can say, and when he gives his order
it represents a choice of words and not a choice of foods. Often the stammerer
maneuvers a conversation so that difficult words will fall to his partner's questions
instead of his own statements, and not infrequently the stammerer remains silent
rather than face the struggle with speech. (Bluemel, 1957, p. 59)
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Plexico, Manning, & DiLollo (2005) refer to avoidance and a restrictive lifestyle as two of
the themes of past experiences when stuttering was unsuccessfully managed. Corcoran and
M. Stewart (1998) also found avoidance to be one of the elements of the major theme of
suffering in relation to the experience of stuttering. Yaruss (1998) suggests that these
reactions often lead to "disability" and additional impairment. Additionally, avoidance
behavior would fit into WHO's framework of ICF to describe all aspects of an individual's
health experience under the personal factors category which describes internal influences on
an individuals' functioning and disability that are indirectly associated with the health
condition (Yaruss & Quesal, 2006). Several assessment tools include avoidance assessment
as part of assessing stuttering. Such instruments include Woolf s (1967) PSI and Wright and
Ayre's (2000) WASSP. Some therapies also focus on avoidance behaviors. Van Riper's
(1973) stuttering modification therapy, also known as nonavoidance therapy, includes an
exercise asking clients to make a list of ways they avoid speaking as part of the identification
stage of therapy. Another therapy focusing on avoidance is the SSMP (Breitenfeldt &
Lorenz, 1989). This therapy based on a combination of desensitization to stuttering,
avoidance reduction therapy (Sheehan, 1970), and Van Riper's (1973) stuttering modification
techniques was successful in reducing avoidance as measured by the Woolf s (1967) PSI
(Blomgren, Roy, Callister, & Merrill, 2005). AIS is yet another therapy that aims to reduce
fears and eliminate avoidances (AIS, n.d.). Participant quotes illustrate different word or
situation avoidances in the narratives that follow.
Alex (107) - You know, see everyone else is free, freely communicating. That's not
me. Well that kind of isolates you. You know, you avoid a lot of things in life as a
result.
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Connor (35-37) - (trying out for the baseball team in 11 grade) 'What we'll do is
we'll give each of you a number and you remember your number and, and when the
time comes, like um, when we're going to hit you a fly ball or you're going to come
up to bat, you will yell out what your number is.' And I think my number was 7 and
for me I don't think it would have mattered what number it was. You know, it was
just terrifying and I didn't show up anymore for the tryout... 'cause it just scared the
crap out of me.
Hayley (177-189) - When I was a freshman in college I remember at an orientation
one of the grad students was up in the class. And she had a very severe stutter, and
she was like, amazing, but I was so shameful of mine I didn't even go up to her to talk
to her. Um ... (unintelligible) There was like a week or so of orientation that, that we
were just with this woman a lot and so I heard her stutter. (Hayley laughs)
Investigator:
Um, but you never had a conversation with her about it?
Hayley:
No, I was too ashamed.
Isabelle (057) - And, you know, I never liked using the, the phone, I would always
hang up. Um, they always knew it was me though, but I always hung up. Um, that's
how it kind of went for years and years.
Jackie (51) - (referring to her participation in the speech team in high school) I mean,
I would definitely switch words and, you know, ah try to talk as fast as I could or just
think about not stuttering, but ah, I wasn't one of those people that could really hide it
too well, so you always heard me stutter.
Jackie (182) - No, I prefer speaking without being prepared. Well, I used to when I
was younger; I think that's because I would switch words around.
Lynn (89-91) - Like my mom can remember, um, when I was really little, I would-,
I'd come into the kitchen and want to tell her something, and I would start to talk and
then I would just put my head down and leave the room. And she said she didn't
realize at the time that that was related to my stuttering. But it was, and I was really
little when I was doing that. I just don't remember it, yeah.
Lynn (127) -1 had so many feared words, like I didn't say words that started with 'd'
and I didn't say words, you know.
Lynn (143) - Um... (Lynn sighs) covert? I don't know, 'cause I definitely like, when
I was talking I, I got stuck a lot so, I did my best to hide my stuttering, but I wasn't
like completely covert. A lot of people knew that I stuttered, but a lot of people
didn't because I would just avoid, talking.
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4.2.4 Post-Conference Perceptions of Stuttering
Narratives from participants reveal a wide range of perceptions about their own stuttering.
Participant reports about fluency after the conference varied. Many reported that they did not
remember or were not sure. Of the participants that shared what they remembered some
reported being more fluent or stuttering more easily; some less fluent; and others reported no
change. Participants also reported on other aspects of their stuttering that impact quality of
life including how they felt about their stuttering and their willingness to communicate.
Most participants reported having a better perspective of the their stuttering that lead to more
positive outcomes including speaking to more people, being more comfortable and accepting
of stuttering, less fear and avoidance, and caring less about what others thought about their
speech. None of the participants reported having more of a negative perspective about their
speech after having attended a conference. NSA 2009 survey (Tetnowski & McClure, 2009)
about the experiences of PWS reveal that stuttering support activities including self-help
conferences can help people come to terms with stuttering. They conclude that people who
participate in the NSA's local chapters or national conference report fewer negative effects of
stuttering and more success in speech therapy than those who do not attend such activities.
More specifically the results reveal that individuals who actively attend NSA conferences
(within 3 years) are less likely to avoid speaking situations because of stuttering ,than
individuals who have not, and are less likely to be embarrassed when people find out that
they stutter, than individuals who have not. The following participant quotes will illustrate
post-conference perceptions of stuttering as one of the themes of the lived experience of
stuttering of PWS who have attended a self-help conference(s) for PWS.
Alex (175) - You know, so, so, so it's like, and then so I am finding I, I was thinking,
'Well if you accept it, you know, then it will gradually go away.' Well, no, no you
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see, that see the total opposite has happen. You know, because I speak more, I stutter
more, because I'm, I'm saying, I know the phones are ringing. You're going to pick
it up. You know, ah you're going to accept what's there, um, no, ah I have more
blocks on the phones, so ah, ah so the frequency has increased, so I'm not becoming
fluent, which I ah thought that maybe that might happen, ah but what I am saying is
all those other things that I've been keeping from my life, you know, all these other
things are happening. You know, I, I had this ah big wall I wasn't allowing anything
to move, you know, so I was ah constantly keeping everything from moving. Now, I
have said, 'No, you see, I'm going to accept this,' so, so the one part has, the one part
ah has remained the same. It's, it's my stuttering and my speech.
Bill (511) - I'm saying, I mean I wouldn't say that my speech was better. I think it
was the same.
Connor (227) - Yeah, honestly I don't recall if it was any better or worse when I got
back. Um ... (Connor sighs) maybe it improved some but it really wasn't. I don't
think it was a marked improvement. Was it any worse? I definitely don't think it was
any worse. I just feel like I was more comfortable with my speech whatever it was,
and then maybe that allowed me to, to not dwell on dysfluencies that I did have.
Dylan (376-380) - Um, well just probably the attitude that I have is that, you know,
having to struggle a lot. You know, just seeing, 'Alright, that there's a lot that I can
get through.' You know, I mean it, you know, I, I had a job, I wasn't sick. I mean,
you know, look, I'm in my early 20s, I have a full-time job. I'm surviving. And it's
basically it was just more or less, you know, 'what was my problem before that?'
Like, not seeing it that way and it, it really, it was a very positive experience, for me.
Investigator: And that was what you got-?
Dylan:
Out of my first conference.
Evan (419-421) - But it wasn't completely, um completely um objectively indicated
and it certainly increased a little bit after the height of the conference backed off and
my fluency deteriorated.
Investigator: Your fluency deteriorated after the conference?
Evan:
I think it was about um, July or August which was successful and then
September time-frame, I think.
Fred (389-393) -1 don't know if it became better or worse. Like most people feel that
they come back and that they're not as fluent for a while. But it, it's more on your
mind, the stuttering becomes more on your mind for a while than it would be 6
months later. I, I know that once I came to the point where I accepted it was not at
the f-, after the first conference. It was a number of conferences after. Than once I
could say that I accept the fact that I stutter, and, or I'm not going to worry what other
people say about it, and ah, I wouldn't think about it as much.
Gilda (244-250) - (referring to her expectations of her first conference) Um, try to
um... find ways to control it, and to have a better attitude about it.
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Investigator: How was it on helping you to better control it?
Gilda:
No. None. I didn't control it.
Investigator:
How about um, I forgot what you just said af-
Gilda:
Uh about attitude about it? Yeah, I have a better attitude about it, like
I'm more okay if I do stutter than before.
Gilda (254) - Like before I would just go around and around like and like try to find
the words and stuff like that. I don't do that.
Gilda (290) - They (family) said I did improve a little bit, but I don't know where
they got that from, but I don't see it from the outside like the other people do, you
know, so.
Hayley (273-279) - After the first conference, um, I came home stuttering more, but
easier. Like I didn't care as much-, about what anybody was going to say and it just
was a little easier. It didn't last. Um, but it was a little easier. Um, like I said,
whatever year I went I could hold on a little longer and, and um, the past um, couple
years is the most severe it's ever been. And if it is a physiological thing, it's probably
because I'm in a lot of pain. I hurt my b-, my back. I'm always tired. I'm stressed.
I'm, just life, I guess? I don't know. But I don't care. I mean, I'm sorry that people
have to listen to me. That's my whole thing.
Isabelle (135-137) -1 was more open about my own speech, which in, in turn of
course, you know, helped my fluency. I did work on my speech much more after that
or maybe more openly.
Jackie (202-204) - Um... I'm trying to remember... I felt like I might have been
stuttering more, a little bit or, maybe not, I don't remember. I remember maybe
thinking about it a little less or feeling like I wanted to talk about stuttering more, so.
Maybe I was stuttering more, maybe less. I don't remember. I just remember
thinking about it. Starting and I was probably thinking about stuttering a lot too, but
in a different way.
Investigator:
How so-?
Jackie:
I think just in a more productive way instead of thinking, 'Oh man, I'm
going to stutter.' Maybe, maybe I'll tell these people that I'll stutter. Or um, maybe
instead of switching the word I'll just try and, I, I just won't. I'll try to stutter, I guess
thinking about it in a more productive way instead of a negative way. So instead of
thinking how to avoid something if you just, mustering up the courage to go and do it
anyway.
Ken (625-629) -1 would say ah well er my speech was more fluent I guess with the
more people I meet and the more talking I do.
Investigator:
During the conference or, or after the conference?
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Ken: Ah Both. Both. The conference gets me to meet and socialize and that I try to
use that experience when I go back into everyday life.
Lynn (301-303) - No, I don't think that NSA had any effect on my speech um other
than I had gone there and I had, you know... at that time in my life I was, in, in this
mode where I would voluntary stutter all the time, and it wasn't even just at NSA. I
was doing it at home too. Um, so I don't, I don't think that my speech really changed
that much. I was already in a pretty, um open place about my stuttering, before I
went to my first conference. So, I think if I hadn't been I would've gotten that from
the conference.
4.2.5 Post- Conference Disclosure
Participant narratives show that disclosing information about their own stuttering to others
can be part of the experience of stuttering a being a PWS. Participants share how disclosure
about stuttering was either a new experience or became easier after attending a self-help
conference(s). Participants communicated that post-conference disclosure of either their
stuttering or their attendance of a self-help conference for PWS lead to enlightening
conversation about what others thought (or did not think) about the participants' stuttering.
In addition, a few participants discussed how family or friends were generally supportive, but
did not know how to show support or encouragement. One participant explained how her
friends sounded more supportive when she went through therapy that resulted in something
that was observable like increased fluency or reduction of stuttering. Another participant was
surprised about his own willingness to talk about stuttering and his attendance at a self-help
conference with his co-workers. Like some of the reactions to other participants' disclosures,
he found his audience to be interested in the subject. Research by Lee and Manning (2010)
and Healey, Gabel, Daniels, and Kawai (2007) found that PWS who acknowledge their
stuttering are more likely to receive a more favorable judgment about their characteristics
than PWS who do not make such acknowledgment. Lee and Manning (2010) suggest that
216
acknowledgement reflects well adapted coping strategies which include the speaker's ability
to demystify or inform the listener about the nature of stuttering. The results of 2009 NSA
survey (Tetnowski & McClure, 2009) of the experiences of PWS reveal, among other results,
that individuals who actively attend NSA conferences (within 3 years) talk about stuttering
with other people they know than individuals who have not and are less likely to be
embarrassed when people find out that they stutter than individuals who have not. The
following participant quotes will illustrate post-conference disclosure as one of the themes of
the lived experience of stuttering of PWS who have attended a self-help conference(s) for
PWS.
Alex (233-234) - Although, you see, when I did come home I did as my son and my
daughter, you see, what they thought of it. I'm thinking, you know, 'How sad is
that?' You know my s-, my son is ah in his early 20s. I never thought to ask him
what he thought about how I talk. You know, and then of course, you see, boys in
their early 20s just, 'I don't know. I don't care. I guess it's alright.' (M laughs) You
know if-, then my daughter, ah a few times I've said, I ask her, I've, she will, she will
um, ah she will ah, she will ah approach me and she'll ask m-, she'll say something,
'I notice about your speech' or 'I noticed this.' So there's kind of a, kind of a, you
know off-on, you see, dialogue about ah what she thinks of it, and she did tell me ah
when I fir-, when I first asked her, she did say, 'it's real embarrassing when my
friends are around.'
Alex (482) - After the conference I made contact ah with a person that ah calls me
every now and then, a person I grew up ah since I was in the 1st grade and um, and I,
and I told him, I went to a conference online, and then he replied back. Ah he says, 'I
never realized ah that you had a problem with it,' and, and, and about 5 minutes after
I picked up myself up off the floor (both laugh), I said, 'Are you kidding me?!' You
know, I wrote back, I says, 'I can't believe ah that you didn't think it was a big deal!
I mean, it was my life and it was everything!'
Connor (185-189) - There were people, um, who I told about the conference. And
um, I remember telling one of my colleagues and talking um about how what a great
experience it was, and how, you know, there's an open mic and how um for a lot of
people, people can really kind of um, put all of their, you, you confront, everything
they hide from through the year, and I think there's a lot of emotional baggage
involved and he said, 'Yeah I guess that um, for some people who stutter there is
some psychological issues there,' and I said, 'Yeah and for me also.' And he said,
'For you? You know, I mean, it doesn't seem to bother you.' And you know, I said,
'Well, you know, it bothers me a lot and I'm really trying to come to terms with that."
217
I mean, I truly believe if my stuttering didn't bother me at all, I would be able to very
easily not stutter.
Connor (203-205) - Um, yeah, you know, it was great. Um I, I pretty much, you
know, um, most people I tell it to, and I've told it to quite a few. They seem to think,
you know, um, some of them seem, seem really interested in it. Others just express
support and, 'Okay, that's great,' but really don't know what to say. And I think I
kind of understand that I guess. Stuttering is one of those things that people generally
don't talk about and don't know how to talk about.
Evan (363-367) - the week right after the, after the conference and I told them (two
co-workers) that I had gone to a stuttering-related conference and- and met a lot of
people who stuttered and attended, and attended presentations. Now I wouldn't, I
wouldn't see myself, yeah, I usually don't talk to my co-workers about, about the fact
that I stutter or, or what I'm, or what I'm doing to, um, what I'm doing for my stut-,
for my stuttering. And I, I'm curious as to, as to why I v-, I volunteered for that, for
that ah disclosure.
Evan (385) -1 didn't tell my parents at all. In the States um, ah obviously, uh gosh, to
think about that. My memory eludes me. I might have told her about this. As a
matter of fact, I probably did. And so, and, and the response was like, 'Oh, it is, it is
nice.'
Fred (119-121)- Ah, no one ever talked about stuttering, even with my parents and
sisters we never, it's only been in the past 10 years that I have talked with, with my
sisters about it and I could talk with anyone now, about my stuttering.
Fred (352-360) - Well, I'm sure I talked a lot about it, talked a lot to a lot of people
about it, because it's like nothing I had ever been to before.. .Alright. I, I really had
never been to a conference of any kind so it was nost-, everything was new. And I
heard, saw a lot more about stuttering than I had in any one time. Even, so, it was a
huge.
Investigator:
Who, who did you talk about that with if, if you're able to remember?
Fred:
My wife and I, I assume people at work, a few of them.
Investigator: Were you having those conversations with your wife or the people at
work about stuttering previous or-?
Fred:
Not as much as that, no. I did a little bit, but not, not, I had, most of
the people at work knew I was going to, to a conference. I didn't even say what, so
there's only a few who, who knew what, what the subject was. So that was, I
definitely talked to a lot more people about it after, than I had before.
Isabelle (145) - Um... so I guess professionally, I guess, I, you know, even mentioned
the word stuttering in front of friends who I've known for years, in front of my, you
know, my brother-in-law and my sister-in-law and I guess, I realized that, you know,
it wasn't as bad, or other people really weren't judging me.
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Jackie (196) - There was accepting. I, I told my friends where I had gone and I don't
think they really got, like, what the conference was, really. Um, you know, I, I think
what my friends heard more was after I did AIS and I wasn't stuttering. You know, I
remember going up to school that fall and everyone was like, 'wow, you sound so
great. I haven't heard you stutter. What happened?' And that all felt really well.
You know, people didn't, I guess, really see, they thought it was, I guess they
thought, 'oh cool' about the conference, but they didn't really get what it was about,
um, I mean, I, I, I think now most of my friends know what the NSA is all about
that's because they've, you know, I've developed some close friendships from there
and they've meet my stuttering friends and, you know, they see more of what it's
about.
Ken (561-563) - Ah it was ah, they (family) really didn't ask me too, too much, I
mean I told them, I was, you know, I had a good time, so on and so forth but, you
know, the rea-, you know, they, they were seemed pleased that I did have a g-, a g-, a
g-, a good time. But, you kn-, unless you experience, it's hard to relate to, you know,
and you kn-, unless you stutter yourself, it's hard to relate your experiences.
In summary, this section reveals that PWS that attend self-help conferences do not differ
from the general population of PWS on many issues. These include issues related to
emotions related to stuttering, impact of stuttering on their lives, and avoidance of stuttering.
These themes were common among the participants in this study who attended a self-help
conference, but are also common in PWS in general. The themes that were documented by
PWS after they attended a self-help conference for PWS were perceptions of stuttering and
self-disclosure. These are not typical of most PWS. Whether these themes emerged as a
result of attending a self-help conference is still not clear. In summary, the findings
presented in this chapter facilitates our understanding of the lived experience of those who
attended self-help conference(s) for PWS and the lived experience of stuttering from the
perspective of PWS that have attended a self-help conference(s) for PWS. The next chapter
will include a discussion about the results and their clinical implications.
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4.3 Additional Analysis - SLPs Who Stutter
It should be noted that 3 of the 12 participants (25%) are SLPs who stutter. Even though
there are many SLPs who stutter who attend self-help conferences for PWS, the convenience
sample in this study does not approximate the percentage of attendees who stutter that are
also SLPs. Based on an informal analysis of 2008-2010 conference registration from the
NSA, the percentage of SLPs who stutter in relation to registered adults who stutter was
lower than the percentage of SLPs who stutter in this study. A more formal analysis would
be needed to determine the actual percentage. This higher percentage of SLPs who stutter in
the convenience sample had the potential to bias the results; however the investigator
determined that the verbalized experiences from the group of SLPs were mostly similar to
that of the participants who were not SLPS. The experiences of the SLPs were different in
that all three SLPs have hosted or helped in hosting conference sessions (often referred to as
workshops) and express an interest in continuing to do so in the future, as exemplified in the
following quotes:
Isabelle (383-391) - So, you know, it (her second conference) was a completely
different experience for me. Um.. .Oh, first of all, I was sent in more on a
professional level so I was a little bit-, I looked at myself as, as having a different role
because I had presented on a type of therapy. Um, so professionally I-, it was good. I
mean I still, I, I can still say that it was still more of a personal conference for me than
it was a professional. Um, but I don't think I was there long enough to be honest.
Um.. .1 enjoyed the Atlanta conference (her first) more but, you know, I was there
much longer, it was more relaxing. Um, and like I always felt like the New Jersey
conference (her second), I guess, was a little bit more political in nature. Um, there
were a lot more speech pathologists there, who I knew. Um, whereas in Atlanta, you
know, I was like meeting more people. Um, I, you know what? I guess the main
difference probably was that I was not concerned about stuttering at all. You know, I
guess I realized fr-, from the first conference, you know, what's the w-, worst that
could possibly happen?
Isabelle (498-500) -1 think the difference with the next conference if I present, I want
to do some kind of a workshop with, with kids or with parents.
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Jackie (218-222) - Now we're too old to go to the youth programs but we still feel
very attached to that. So now we try and um, help out as much as we can or else, you
know, find out how to, find our niche in the adult workshops also or, try and fill that
void um, you know, there's not a lot at the conferences, we've kind of figured out, for
like, people like, in their mid 20s, out of college, starting their careers, and um, so a
bunch of us have kind of filled that void with our own workshops now which is pretty
cool, you know that, I feel like um, I've gotten so much from the NSA, um, giving
back is really important now.
Lynn (365) - The second conference I went to more of the kid workshops, to help out
at those, and the-, then I enjoyed it better. Um... just because I, I thought I was of
more use I guess, um helping out at the workshops than, than just going to them. Um,
and I, I, I get a lot out of um, seeing, seeing the kids and seeing them being around
other kids that stutter and talking about stuttering or, or not talking about stuttering
and just stuttering, you know, um, just being kids. And it's-, I just think it's so
awesome and if I had had that as a kid um, my entire life probably would've been a
lot different. Um, so I just get a lot out of, um... seeing kids who stutter at these kind
of conferences.
The SLPs' proactive attitude towards helping other PWS may have been a factor in their
drive in becoming an SLP. Another possibility is that being an SLP may have been a factor
in their proactively seeking a formal role at conferences (i.e. hosting or helping at conference
sessions).
Of the other nine participants eight of them (89%) have expressed an interest in playing a
helpful role within the self-help community or have already done so. Some examples were:
taking on a more significant role in their own self-help group, becoming more active on the
national level, being a self-help group leader or regional chapter coordinator (regional
supervisor), or being helpful at conferences. Two of the nine (22%) have hosted a
conference session (including one of the one-time attendees) and three of the nine non-SLP
participants (33%) expressed an interest in hosting their first conference session.
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Among the participants who were SLPs, one SLP, Isabelle, described the conference on both
a personal and a professional level. Isabelle has more years of experience and has a private
practice. These differences seem to influence her outlook on self-help conferences, however,
analysis reveals that this is a personal difference and is not consistent among all three SLPs
that served as participants in this study.
Isabelle (423-427) - (regarding expectations of her second conference) That I thought
would be more networking for me. I thought that... I think I might meet more
parents there, you know, from the New York area. But like I said, I wasn't there long
enough. Um.. .1 mean I did meet other speech pathologists there, but, you know, I
knew most of them. I mean I did actually for my presentation, I got a-, through word
of mouth I got a few referrals from presenting. So that's also what I was hoping for.
In addition, Isabelle's description of her recollection of listening to other people stutter at her
first conference was also different from the other two SLPs. She verbalized how she was
surprised to hear so much stuttering; furthermore, she interpreted their stuttered speech as
suffering. She further explains some of her own experience of stuttering and how it often
results in headaches.
Below are examples regarding Isabelle's reaction to listening to other people stutter at her
first conference:
Isabelle (99) - Well I guess when I first walked in I had met a few people who had
stuttered like, very, very severely and I think that kind of caught me off guard 'cause I
guess I-1 didn't realize that, I didn't-, I knew they were a self-help organization, but I
me-, I'd-, I thought there would be more speech therapy, you know, aspects there. So
I guess seeing, you know, other people, who in my eyes, were... suffering, um, I
found really hard. I mean, you know, at the end I realized that, you know, a lot of
these people had come to, I guess, emotional terms with it. Um, so I found that hard.
I found that they-, I thought there would be more workshops on speech therapy. I
was kind of surprised about that.
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Isabelle (127-129) - How could so many people walk around stuttering so badly and
not be using any kind of (both laugh) fluency tool at all? That just blew my mind,
just blew my mind, 'cause as a ch-, I guess, when I have my severe moments I can get
like bad headaches almost, so I just couldn't for the life of me. And I, and I guess,
honestly, it concerned me a little bit about the teenagers who were there, you know,
like what kind of role models. I mean, I'm not talking about like, you know, role
models and in terms of what type of people they were, but I wanted them to know that
there was help out there.
Investigator:
Help to?
Isabelle:
Achieve, sa-, you know, achieve improved fluency, improved selfesteem as well, but there were fluency tools out there and I guess that just worried
me.
Perhaps Isabelle has also been impacted by her personal therapy experiences. In Isabelle's
recollection her past therapies only focused on fluency shaping approaches. This is likely to
impact the perception that fluency is paramount in therapy success. This may result in the
perception that stuttered speech is regarded as unsuccessful and may reduce overall
communication.
Isabelle was not the only participant to comment about the severity of stuttering of some of
the attendees, but she was the only participant that commented about the lack of workshops
on speech therapy and the lack of usage of fluency tools by the conference attendees. Other
participants, including ones who expressed increased fluency as a goal (e.g. Evan and Gilda,
non-SLP participants) did not express a concern over the lack speech therapy offered or used
at the conference. This particular concern about the lack of therapy is likely to come from
her experiences as a clinician who specializes in fluency shaping approaches, and as a PWS
who expresses an understanding of how stuttering can be handicapping. Her concern for
other PWS, particularly teens and children, lacking fluent role models who use fluency tools
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at the conference, is a reflection of the type of therapy she went through and the type of
therapy she administers professionally.
Isabelle's view of the conference on both personal and professional levels is an indication of
where she is in her career and with her stuttering. She has years of experience as a clinician
and has a private practice which probably played a role in her decision to attend the
conference. Professionally, she expressed an interest in educating parents, meeting other
SLPs who stutter, and improving her reputation, but she also mentions how she has gained
from the conference on a personal level. She states:
Isabelle (135-137) -1 guess when I got home, it did help me professionally even
though I think, you know, I thought that I didn't get that much out of it professionally
'cause that was when I s-, I started to really make some contacts trying to get more of
a name for myself in terms of fluency. I did get more clients after that. I was more
open about my own speech, which in, in turn of course, you know, helped my
fluency. I did work on my speech much more after that or maybe more openly.
The other two SLPs did not express the same experience as Isabelle in terms of listening to
other people stutter or in experiencing the conference on both personal and professional
levels. Differences in the histories before attending their first conference existed between
Isabelle and the other two SLPs, Jackie and Lynn. The differences that stood out the most
were that Jackie and Lynn: (a) had therapy experiences that did not fully focus on fluency
shaping approaches, they included an element of a stuttering modification (i.e. stuttering
modification alone or integrated approach with included both fluency shaping and stuttering
modification approaches); (b) had previously attended self-help workshops for PWS that did
not have a fluency focus (i.e. Friends' 1 day workshop) prior to attending their first self-help
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conference; (c) are at different points in their professional careers; and (d) do not have a
private practice and therefore rely less on their professional reputation for their cliental.
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5. CONCLUSIONS AND DISCUSSION
The focus of this dissertation was to investigate the lived experience of those who attended
self-help conferences for PWS from the perspective of a PWS. This was achieved by using
the qualitative methodology, IPA. Semi-structured interviews were used to produce a rich
data set. The data collected were the stories of 12 adults who stutter that have attended at
least one self-help conference. The narratives of the participants helped in understanding
what the experience of self-help conference(s) has meant to the participants. Their stories
also gave insight as to what the experience of stuttering has meant to them. This insight to
each participant's experience of his or her own stuttering helped to contextualize the
participant's experience at a self-help conference(s). The iterative analytic procedures
allowed themes and subordinate themes to emerge from the data. The final results consisted
of the themes and subordinate themes that the investigator found to be most relevant to
responding the two research questions of the investigation. Participant quotes that were most
potent in recognizing the emerging themes were used to support and illustrate the themes.
Due to the richness of the data themes and subordinate themes sometimes overlapped. As a
result, quotes were sometimes able to support more than one theme.
Once again, the two research questions answered in this dissertation were:
1. What is the lived experience of those who attended self-help conference(s) for
PWS from the perspective of a PWS?
2. What is the lived experience of stuttering, from the perspective of a PWS who has
attended a self-help conference(s) for PWS?
The organization of this chapter will include a discussion regarding the clinical implications
of this investigation and how this could affect how people view self-help conferences and
other self-help activities in the management of stuttering, future research that can stem from
the findings of this investigation, and the limitations of this study. Wherever possible, these
findings will be compared with our present knowledge of stuttering and the related
phenomenon.
5.1 Conclusions of the Investigation
This investigation was conducted to help to understand the lived experience of those who
attended self-help conferences for PWS from the perspective of PWS. In efforts to better
understand the participants of this study, this study also sought to understand their own lived
experiences as people who do stutter.
First, it is clear that PWS that attend self-help conferences for PWS find the conferences to
be helpful in a variety of ways. This information will be compared to past knowledge with
discussion on how this new information can be integrated to expand the body of knowledge
about stuttering.
The literature on stuttering recognizes the differing viewpoints about defining stuttering.
One view describes stuttering just by the overt features of the disorder (R. J. Ingham, 1984;
R. J. Ingham & Onslow, 1985; Onslow, Costa, C. Andrews, Harrison, & Packman, 1996;
Schiavetti & Metz, 1997), while another view includes the unobservable features of stuttering
(E. B. Cooper 1993; Johnson, 1930; Manning, 1999, 2001; Murphy, 1999; Shapiro, 1999;
Sheehan, 1970; Starkweather & Givens-Ackerman, 1997; Van Riper, 1982; Yaruss, 1998;
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Yaruss & Quesal, 2004b). The findings of this study are more consistent with a broader view
of stuttering. That is, very few participants talked about the overt aspects of stuttering, but a
majority talked about how their lives were changed by a focus on "below the surface"
features of stuttering. Since fluency is not the major focus of the conferences held by any of
the three self-help organizations (NSA, Friends, and Speak Easy) attended by participants in
this study, it is no surprise. By using the broad view of stuttering which includes the nonobservable features of stuttering, the results show that all participants found attending the
conference to be helpful in ways not related to the overt features of stuttering. Participants
reported minimizing situational avoidances by socializing more during and after conferences.
Participants discussed various aspects of redefining his or herself including improved selfperspective, increased self-esteem, self-acceptance, increased risk taking, self-realization,
and feeling more freedom. Participants generally found that their roles as conference
attendees or within the stuttering community shift over time and sometimes as early as during
their first conference. Many participants reveal that they shift from being someone who
attends a conference(s) seeking help or guidance because of the negative emotions they have
experienced as a PWS including loneliness, fear, shame, frustration, and embarrassment, to
someone that has a better perspective and may look to help others who stutter. Finally,
participants were less shameful and more comfortable with their identity as a PWS. This was
evidenced by their post-conference disclosures and conversations with others about stuttering
and the self-help conference that they attended. Using a broad view of stuttering it can be
concluded that the participants found attending a self-help conference(s) to be beneficial in
helping in to manage his or her stuttering. This is indeed consistent with successful stuttering
management from stuttering. St. Louis (2001), Plexico et al. (2005), Tetnowski and McClure
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(2009) have shown that changing attitudes, better understanding oneself, and finding support
are all critical in successful stuttering management. The implications of this study are that
simply attending even one self-help conference can have an impact on successful outcomes
associated with stuttering treatment. This is definitely the case when we view stuttering as
more than just a simple motor speech disorder. In this case, attending a self-help conference
is viewed as the therapeutic activity or "treatment." It is paramount to select the right
instrument to measure the aspects of the condition that the treatment is focused. As
previously mentioned, the self-help conferences attended by participants did not have fluency
as their major focus; therefore the tools to measure observable features of stuttering including
one of the most widely used assessment tools for stuttering, the SSI-3 (G. D. Riley, 1994),
would not be expected to reveal much about how self-help conferences are beneficial for
attendees. However, the SSI-3 (G. D. Riley, 1994) would be useful in a study that sought
answers related to the impact of self-help conferences upon stuttering severity (G. D. Riley,
1994). In contrast, tools to measure the intrinsic features of stuttering may be able to detect
differences in some aspects of stuttering for attendees of a self-help conference(s); most
notably, the OASES (Yaruss & Quesal, 2008), which include sections on general
information, reactions to stuttering, communication in daily situations, and quality of life
items, all of which are relevant to the primary goals of the self-help conferences attended in
this study. Questionnaires, however, will only reveal the specific information that it sets out
reveal. Semi-structured interviews, as used in this qualitative research paradigm, are best
suited for understanding the social complexities of stuttering from the perspective of a PWS.
The implications of this are that tools like semi-structured interviews may need to be brought
into the clinical realm for stuttering and other communicative disorders. This was suggested
229
by Tetnowski and Franklin (2003) and is supported by this study. In-depth interviews help to
collect rich, authentic descriptions of experiences and provide the flexibility to explore
interesting topics that may not have been brought to light in a questionnaire. If we are
looking for in-depth knowledge of PWS, we must use techniques and strategies such as these.
Most stuttering measurement instruments can only be useful in determining surface features
about stuttering, however, due to the complexities of stuttering and communication in
general, semi-structured interviews are best suited for understanding the experiences of PWS.
Many current stuttering treatment strategies include fluency shaping, stuttering modification,
and cognitive restructuring. The present results revealed that attendance at self-help
conferences can be an adjunct to formal stuttering therapy, particularly within those methods
that stress the understanding of stuttering and its emotions as an overall goal for therapy.
Fluency shaping and stuttering modification approaches include the use of specific speech
skills to speak fluently or to stutter more easily, respectively. Such speech skills are learned
and practiced in clinical settings. Clients are then encouraged to use speech skills in their
daily lives. But for some, the situational change from using speech skills for the purpose of
"doing therapy" (in a clinical setting or while formally practicing at home) to using the skills
for the purposes of socializing in daily life, may be too risky for an individual to try for any
sustained period of time during a day. Self-help conferences provided participants with
unique socializing opportunities and a sense of community during and after the conference.
This combination forms an environment that is listener-friendly and stutter-friendly in a
social context. This creates a bridge or scaffold for the client/attendee to try his or her speech
skills in a non-threatening environment without the risk or fear of ridicule. The results of this
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study confirmed that participants who attend self-help conferences are willing to increase
their risk-taking behaviors. This is important in most treatment paradigms. Almost all
fluency shaping treatment programs have a carry-over phase of therapy. In stuttering
modification programs, the very last step is this very stabilization that clients referred to in
this study. Reaching out, taking risks, including trying out different speech skills, are of
great clinical importance when trying to carry-over or stabilize techniques used in clinical
settings.
Stuttering modification therapies and cognitive restructuring therapies both require clients to
change attitudinal responds toward stuttering. This needs to be accomplished in actual
speaking situations. The approaches also aim to reverse the negative effects on selfperceptions including the way he or she perceives him or herself as a communicator. One of
the major themes associated with the experience of attending a self-help conference was that
all participants found that they were redefining themselves in ways that included: (a)
improved self-perspective, (b) increased self-esteem, (c) self-acceptance, (d) increased risk
taking, (e) self-realization, and (f) feeling more freedom. Additionally, most of the
participants reported shifting roles from someone who seeks help to someone that gives help.
By viewing oneself in a helping or mentorship-type role clients/attendees perceive him or
herself more positively and may contribute to viewing him or herself as an effective
communicator. The last thematic finding that supports the compatibility between the
experiences of attending a self-help conference and the aim of stuttering modification or
cognitive restructuring approaches are participants' post-conference disclosures to family,
friends, and co-workers about their stuttering and having attended the conference. Being that
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one of themes of the experience of stuttering was the avoidance of situations and words
partly to conceal their identity as a PWS, this is more evidence to support a change in frame
of mind about his or herself and his or her attitude toward stuttering. This concept of
changing roles is consistent with many studies and philosophies of therapeutic change, such
as those noted by Plexico, Manning and DiLollo (2005), G. A. Kelly (1955a, 1955b).
A discussion of stuttering management should focus on what factors may influence clinical
outcomes or long-term success as a communicator. This includes but goes beyond the
clinical domain. Plexico, Manning, and DiLollo (2005), explored what factors helped their
participants successfully manage their stuttering and divided the themes that emerged from
their participants into three stages - unsuccessful management, transition from unsuccessful
to successful stuttering management, and continued successful stuttering management. Later
research by Plexico and others (Plexico, Manning & Levitt, 2009a, 2009b) also showed that
factors such as approaching the problem and forming independent solutions are of the utmost
importance in achieving successful therapeutic outcomes for stuttering. Some themes that
emerged from the unsuccessful management stage had a similar or equivalent theme
regarding the lived experiences of stuttering that emerged from the current investigation.
The negative reactions of listeners were similar to participant reports in the current
investigation. Some negative reactions were bullying/teasing (4.2.2.2), the verbalized
misconceptions of stuttering (other people's perceptions (4.2.2.7), and the negative reactions
from others in the context of education (4.2.2.3), dating (4.2.2.4), and career
choice/advancement (4.2.2.5). Restrictive lifestyle (Plexico et al., 2005) was another theme
of unsuccessful management. This concurred with the lived experience of stuttering reported
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in the current study. Participants reported that stuttering restricted his or her personality
(4.2.2.1), education (4.2.2.3), dating (4.2.2.4), career choice or willingness to advance
(4.2.2.5) and work performance (4.2.2.6). Avoidance was the last of the themes of
unsuccessful stuttering management. Avoidance of situations and words (4.2.3) was also a
theme of the experience of stuttering in the current study.
Within the transition from unsuccessful to successful stuttering management stage Plexico et
al. (2005) reported six themes - support from others including support groups and friends,
successful therapy, self therapy and behavioral change including self-disclosure, cognitive
change, utilization of personal experiences, and high levels of motivation and determination.
Based on the findings in this current investigation, self-help conferences contribute to all of
these themes that are responsible for helping people who successfully manage their stuttering
to transition from having unsuccessful to successfully managed stuttering. Table 6 provides
examples of how self-help conferences contribute to the transition stage of successful
stuttering management.
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Table 6. The Role of Self-Help Conferences for PWS in the Transition from
Unsuccessful to Successful Stuttering Management
Themes for
Results from the Lived Experiences of
Transitioning to
Self-Help Conferences for PWS
Success
Support from others provide the unique social opportunity of making friends (4.1.1.1)
- including support and becoming affiliated with a community of PWS who are
groups and friends supportive (4.1.2)
provide a safe, listener friendly environment (4.1.1.1) in which
attendees take risks (4.1.5.4) including using behavioral speech
Successful therapy skills in the real context of socializing (4.1.1); allow attendees to
change the way they view stuttering and him or herself as a
- including
behavioral tools and communicator through improved self- perspective (4.1.5.1),
increased self-esteem (4.1.5.2), self-acceptance (4.1.5.3), selfcognitive and
realization
(4.1.5.5), having feelings of freedom (4.1.5.6), and
affective elements
being able to talk about stuttering more openly with family,
friends, and co-workers (4.2.5)
Self-therapy and
provide a safe, listener friendly environment (4.1.1.1) in which
behavioral change - attendees take risks (4.1.5.4) to practice behavioral speech skills
including risk
away from the clinic; make it easier to talk about stuttering more
taking and selfopenly with family, friends, and co-workers (4.2.5)
disclosure
allow attendees to change the way they view stuttering and him
or herself as a communicator through improved self-perspective
(4.1.5.1), increased self-esteem (4.1.5.2), self-acceptance
Cognitive change (4.1.5.3), increased risk taking (4.1.5.4), self-realization (4.1.5.5),
having feelings of freedom (4.1.5.6), and being able to talk about
stuttering more openly with family, friends, and co-workers
(4.2.5)
Utilization of
personal
experiences
High levels of
motivation /
determination
provide the unique social opportunity of making friends (4.1.1.1)
and potential bonding experiences with other PWS (4.1.2.1) and
becoming affiliated with a community of PWS (4.1.2) allowing
for post-conference socializing (4.1.1.4).
provide role models and opportunity for positive changes as
evidenced by attendees drive to redefine him or herself (4.1.5)
Adapted from Plexico et al. (2005) - Results of current investigation.
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The stage of continued successful stuttering management (Plexico et al., 2005) reported five
themes - continued management, self-acceptance and fear reduction, unrestricted
interactions, sense of freedom, and optimism. Based on the findings in this current
investigation, self-help conferences contribute to all of these themes responsible for helping
people to continue their successfully managed stuttering. Table 7 provides examples of how
self-help conferences for PWS contribute to the maintenance or continued success of
stuttering management.
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Table 7. The Role of Se lf-Help Conferences for PWS for Continued Successful
Stuttering Management
Themes for
Results from the Lived Experiences of
Continued Success
Self-Help Conferences for PWS
Continued
management
provide a consistent meeting forum for this unique socializing
opportunity for PWS (4.1.1) to meet people, make new friends
(4.1.1.1), attend social gatherings (4.1.1.2), and provide an even
more continuous socializing opportunity after the conference
(4.1.1.4) by being active, social, and affiliated with the self-help
community of PWS (4.1.2)
Self-acceptance and
fear reduction
help attendees to redefine him or herself in positive ways
including self-acceptance (4.1.5.3) and less fearful by being able
to take more risks (4.1.5.4), and not being fearful talking about
stuttering with family, friends, or co-workers (4.2.5)
Unrestricted
interactions
provide attendees with multiple ways to become affiliated with a
community of PWS (4.1.2) with which they can socialize
(4.1.1.4); provide attendees with opportunity to redefine him or
herself (4.1.5) that would be less limiting than their previous
construct of him or herself including improved self-perspective
(4.1.5.1), increased self-esteem (4.1.5.2), self-acceptance
(4.1.5.3), increased risk taking (4.1.5.4), self-realization (4.1.5.5),
having feelings of freedom (4.1.5.6)
Sense of freedom
Optimism
provide attendees with feelings of freedom (4.1.5.6)
provide attendees with a opportunity to redefine him or herself
(4.1.5) in ways such as improved self-perspective (4.1.5.1),
increased self-esteem (4.1.5.2), self-realization (4.1.5.5), having
feelings of freedom (4.1.5.6); provide attendees with opportunity
to shift roles from one needing help to one giving help (4.1.3) and
being optimistic
Adapted from Plexico et al. (2005) and Chapter 4 - Results of current investigation.
The overall conclusions that can be drawn from Table 6 and Table 7 are that: (a) self-help
conferences for PWS contribute to the transition from unsuccessful stuttering management to
successful stuttering management and (b) self-help conferences for PWS contribute to the
continued success of stuttering management.
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5.2 Limitations of the Investigation
The focus of the study was to understand the lived experiences of a self-help conference for
PWS and the lived experiences of stuttering, both from the perspective of PWS. Participants
have been attending self-help conferences for a range of time from 1-15 years. The lived
experience involves making meaning from past experiences. Even though this study aims to
look at the experience from the perspective of PWS, it is important to recognize that an
individual's memory can play a role in their actual perception of the experience. Therefore
questions related to experiences of their first conference are limited to what they are capable
of remembering. Some participants noted this when asked about their speech after a selfconference.
Another limitation of the study was the lack of generalizability (J. A. Smith & Osborn, 2008)
to all PWS who attend self-help conferences and to the much broader population of PWS.
Even though the 12 participants varied in gender, age, and geographical location, the results
and conclusions are only applicable to the participants in this study. The aim of this study is
to document the details of the perceptions and understandings of the participants not make
general claims. J. A. Smith and Osborn (2008) say that IPA is not opposed to more general
claims for larger populations; IPA is just "committed to the painstaking analysis of cases [or
small groups] rather than jumping to generalization," and follows an idiographic rather than a
nomothetic mode of inquiry. The individual descriptions of each participant (section 3.3)
provide additional contextual information to help readers understand more about the
backgrounds of each of the participants to possibility understand what may or may not have
played a role in the perceptions of their conference experiences.
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In the interpretation of the results and/or conclusions of this investigation, it is important to
note that this was a sample of convenience and have the potential to bias the sample of all
adults who stutter that attend self-help conferences for PWS. In addition, adults who stutter
that attend self-help conferences for PWS, may be a subgroup of all adults who stutter. This,
however, does not appear to be the case, since their experiences of stuttering appear to be
quite similar. The only difference between the participants who attend self-help conferences
and a sample of PWS are the fact that conference attendees had post-conference experiences
(positive).
5.3 Clinical Implications
The clinical implications of this investigation are that there is more evidence to support that
stuttering is a broader disorder than its observable features and should therefore be assessed
in ways that go beyond a severity assessment as observed by the clinician. In efforts to
understand the lived experience of stuttering of a client an SLP should interview him or her
with open ended questions. Self-help conferences can be a useful tool and should be used as
an adjunct to professional therapy using any of the major three approaches to stuttering
therapy (i.e. fluency shaping, stuttering modification, and cognitive restructuring). Self-help
conferences are valuable in helping PWS transition from unsuccessful therapy to successful
therapy. Furthermore, they are valuable in helping PWS to maintain long-term success in
stuttering management.
This investigation provides clear evidence that self-help conferences for PWS are an
invaluable resource for successful stuttering management. Clients should be referred to such
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conferences when appropriate. This investigation was conducted with the knowledge that it
could potentially impact the way that clinicians, supervisors, school administrators,
researchers, insurance providers, and clients view this valuable resource.
5.4 Future Research
The purpose of the investigation was to understand the lived experience of self-help
conferences for PWS and the lived experience of stuttering both from the perspective of
adults who stutter. Results showed that attendance at the conferences were beneficial for
adults in that they changed the way people changed their cognitions about stuttering and him
or herself as a communicator. This qualitative investigation was helpful in describing the
details of how the conferences were beneficial and how stuttering impacted the lives of
attendees. A possible future study of self-help conferences for PWS should measure the
change in the impact of stuttering that self-help conferences can have on adult. The normreferenced questionnaire, the Overall Assessment of the Speaker's Experience of Stuttering
(OASES; Yaruss & Quesal, 2008), would be the ideal instrument for such a study. This
would also provide a similar means to compare the change in the impact that stuttering has
on teens and school age children that attend self-conferences, since the OASES-T for ages
13-17 (Yaruss, Quesal, & Coleman, 2010) and OASES-S for ages 7-12 (Yaruss, Coleman, &
Quesal, 2010) are scheduled for release late in 2010.
Since the current qualitative investigation specifically targeted adults and the results revealed
that there is much benefit in the realm of stuttering management for the adult attendees,
future studies need to explore the utility of self-help conferences for teens who stutter and for
239
school age children who stutter. It would also be rational to conduct the same study for the
parents of children and teens who stutter to understand the benefits received by parents, but
ultimately how the parents' experiences impact their children or teens. This is important
since there is evidence to suggest that changes in the home social environment can have
positive effects on CWS, similarly to how parents of a child with allergies may be able to
change their child's physical environment to help them breath more easily (Ratner, 1993).
Another group of people who attend self-help conferences are SLPs. A study of their
experiences would help to understand what role self-help conferences in their training and
may lead to better training for which current and future clients may benefit. These studies
need to be conducted in a qualitative research paradigm to begin to understand the
complexities of the experiences of each individual within these different groups of selfconference attendees.
The positive benefits of self-help conferences for PWS show that more needs to be
understood about all self-help activities for PWS. Ramig's (1993) call for research on selfhelp groups for PWS has been answered by some researchers, but more studies are needed as
the realm of self-help for PWS has grown to various age groups, to various in-person selfhelp venues including self-help conferences, and to various self-help options that exist and
continue to be developed on the internet. One particular area of research that needs
exploration is the use of social networking for PWS. At the time the data was collected for
his study participants reported using internet discussion groups and podcasts, but other forms
of internet medium were not yet mainstreamed. Today social networking is one of the most
popular forms of communication online. For PWS this is no exception. The most popular of
240
the social networking websites today, Facebook, is used to connect members of both Friends
and NSA to each other and to keep in touch with any events happening on a national or local
level. The increase use of the social networking sites appears to correlate with the decline in
the use of internet discussion groups. In addition, more people seem to be learning about
these self-help organizations either by finding the organizations directly on Facebook or
indirectly through other PWS that they may have found via social networking. This
phenomenon has already started to impact the way individuals at all levels within the
organization communicate for socializing or for running the organization (or local chapters).
Research needs to be conducted regarding how PWS use such sites; how self-help
organizations use such sites; what impact social network sites have had on in-person selfhelp activities for PWS (i.e. groups, regional workshops, and annual conferences). As the
self-help movement of PWS continues to become more global through the formation of new
national organizations and the maintenance and growth of international self-help
organizations for PWS (i.e. ISA), more and more people who have access to the internet will
be able to benefit from what self-help online activities has to offer. Research about self-help
activities for PWS must continue for us to understand the roles they play in stuttering
management.
241
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APPENDICES
Appendices A - L contain the transcriptions of the 12 participants and can be found in
separate files on the CD provided with this manuscript.
Trichon, Mitchell C. Bachelor of Science, University at Albany-State University of New
York, Spring 1994; Master of Science, University of Louisiana at Lafayette, Spring
2006; Doctor of Philosophy, University of Louisiana at Lafayette, Fall 2010
Major: Applied Language & Speech Sciences
Title of Dissertation: Self-Help Conferences for People Who Stutter: An Interpretive
Phenomenological Analysis
Dissertation Director: Dr. John A. Tetnowski
Pages in Dissertation: 285; Words in Abstract: 349
ABSTRACT
Self-help organizations and activities for people who stutter (PWS) have become more
popular all over the world; however, there is a scarcity of evidence to support their utility in
stuttering management. The purpose of this investigation is to understand more about the
lived experience of individuals who attended a self-help conference(s) for PWS from the
perspective of a PWS to learn about its potential usefulness in the overall management of
stuttering. The investigator used Interpretive Phenomenological Analysis (IPA) to
systematically collect authentic data of this social phenomenon. Semi-structured interviews
were conducted with each of the twelve participants, 4-18 months after attending a self-help
conference for PWS. Interviews were transcribed and reviewed. Significant quotes were
documented and analyzed. Themes emerged from the data and the investigator interprets the
finding through a narrative which and illustrated by participants' quotes. Credibility
procedures included acknowledging potential investigator biases, triangulating analysis with
another investigator, and asking participants to review and comment to determine if themes
were consistent with the participants' experiences. Themes emerged in two domains - the
experience having attended a self-help conference(s) for PWS and the experience of
stuttering. Results related to having attended a self-help conference(s) include themes about:
types of socializing opportunities with other PWS, affiliation, shifting roles, positive change
of emotions, and ways of redefining oneself including improved self-perspective, selfacceptance, increased risk taking, and freedom. Results related to the participants'
experience of stuttering are similar to previous studies. Emotions associated with stuttering
were embarrassment, fear, frustration, loneliness, and shame. Results also show aspects of
life that stuttering impacts including personality, education, dating, and career path. Other
themes reveal participants' avoidance of words and situations and two post-conference
themes. One related to perception of stuttering after the conference and the other related to
disclosures about stuttering. Conclusions of the study are that self-help conferences for PWS
help to minimize the negative internal influences that stuttering can have on daily
functioning, by providing a forum for socializing, affiliating, and changes in self-concept
potentially leading to improved communication. As a result, self-help conferences are a
useful resource in the management of stuttering.
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BIOGRAPHICAL SKETCH
Mitchell C. Trichon, son of William and Evelyn, was raised in Long Island, New York. He
received a Bachelor of Science from the University at Albany (NY). After working as a
Certified Public Accountant, he received a Master of Science (2006) and Doctor of
Philosophy (2010) from the University of Louisiana at Lafayette, where he specialized in
fluency disorders. Mitchell has published and presented stuttering research at national and
international conferences. He has led self-help groups, hosted national and regional
conferences, and is on the Board of Directors of the National Stuttering Association. He
teaches at St. John's University.