Mitchell Trichon, PhD
St. John’s University
John Tetnowski, PhD
University of Louisiana at Lafayette
Introduction
 Much of the evidence that exists about stuttering and
stuttering therapy comes from objective measures of
stuttering judged by speech-language pathologists
(e.g., Ingham & Riley, 1998).
 Only recently, have researchers begun to
systematically investigate the impact of stuttering on
the lives of people who stutter (e.g., Yaruss & Quesal,
2006).
Introduction
 These measures include:
 Quality of life measures (Yaruss, 2006)
 Social and anxiety issues related to stuttering (Tran,
Blumgart, & Craig, 2011)
 The impact of stuttering on education (Obrian et. al.
2011)
 Peer interactions with other children (Langevin, 2009)
 Markers of success in therapy (Plexico et al., 2005; 2009)
Introduction
 Specifically, some investigators have discovered the
specific facets of therapy that lead to successful
outcomes and how they cope with stuttering (Plexico,
Manning & DiLollo, 2005; Plexico, Manning & Levitt,
2009a; 2009b).
 They found that the following appear to have a positive
impact on successful stuttering outcomes:
 therapist behaviors
 specific types of therapies and the goals that are targeted
 how they cope with stuttering and achieve agency
 support opportunities
Introduction
 In an attempt to gather more information about the impact
of stuttering from a greater number of individuals, several
surveys have been completed over the past several years
that have also added to our knowledge of successful
outcomes (e.g., Tetnowski & McClure, 2010; Yaruss et al.,
2002).
 One of the findings of the 2010 survey indicated that
clients who attend self-help activities as an adjunct to
therapy may have better outcomes.
 This is but the beginning of research into the role of selfhelp. This type of study requires different techniques that
can get at features that are nor readily available through
traditional experimental research designs. This study will
use one of these qualitative methodologies, specifically
IPA, to look at the impact of one self-help activity on the
lives of people who stutter.
The King’s Speech
King George VI, aka “Berti” was fortunate
enough to find, Lionel Logue, a therapist
who focused on his fluency and challenged
him to not allow stuttering to prevent him
from realizing his potential.
The King’s Speech
 Berti’s support system was mainly comprised of Logue
and his wife. Winston Churchill, also a person who
stutters (PWS), briefly mentions his stammer to Berti
in the movie.
 What would it have been like for King George VI and
Churchill to have regular conversations about their
experiences of stuttering? Would this have reduced
the negative impact of stuttering on their lives?
Background
 Personal experience as a PWS - impact of self-help
 For many others attending self-help activities has been
described as ‘life changers’
 Why weren’t more people there when people seem to
gain so much from them.
 Unfortunately, there is little research to support selfhelp activities in the realm of fluency disorders.
Self-Help for PWS in U.S.
 National Stuttering Association (NSA) – host annual
national conferences and regional workshops ; network of
self-help groups for adults, teens, and children
 FRIENDS – The National Association of Young People Who
Stutter – host annual national conventions and regional
workshops
 International Stuttering Association
 Over 40 countries registered in their network of selfhelp organizations from all over the world.
Self-help activities for PWS
 Self-help groups
 monthly, 5-20 people, 1-2 hours
 Self-help regional workshop
 few/ yr; held at various locations, 30-100, full day
 Self-help conferences
 usually annual, 2-4 day event, ranges from 100 – 700;
location changes each year
But are self-help activities
for PWS helpful??
Literature Review
 Various studies support the potential role of self-help
activities for PWS.
Hunt, 1987; Krauss-Lehrman & Reeves, 1989; Plexico, Manning, & DiLollo, 2005; Ramig,
1993; Trichon, Tetnowski, & Rentschler, 2007; Yaruss & Quesal, 2006; Yaruss et al., 2002
 The studies support:
 there is more to stuttering management than reducing
the observable features.
 self-help activities can play a role in successful
management.
 This research warrants further investigation of self-help
activities.
Literature Review
 Plexico, Manning, & DiLollo, 2005
 Found that support from others as one of the major
themes in transitioning to successful stuttering
management.
 This suggests the role that self-help activities can play in
successful stuttering management.
Literature Review
 Trichon, Tetnowski, & Rentschler (2007)
 reported positive feelings about a group as
adjunct to therapy
 members came to the group with various goals
 benefited from changes in intrinsic features
Themes

Goal-oriented themes:
 Education
 Fluency
 Self-Awareness

Elemental themes:

Encouragement / Inspiration

Safe Environment

Sharing Feelings

Sense of Community

Exposure to other PWS
Literature Review
 Tetnowski & McClure (2009)
 NSA Survey


revealed that self-help groups and conferences were beneficial
in reducing the negative impact stuttering can have on an
individual
showed that self-help groups and conferences help in the
long-term success of traditional speech therapy for stuttering.
Tetnowski & McClure, 2009
 “participants … less likely to avoid speaking
situations and …less likely to say their stuttering
interferes with work or school...[and] more likely
to talk about stuttering ...”
 “NSA chapter or … conference [attendees] say
the experience has been very helpful in
improving their self-confidence, practicing
speaking, learning …and exploring attitudes
toward speaking and stuttering.”
Self-Help Conferences for PWS
Self-Help Conferences - Purpose
 Purpose is to understand the lived experience of
attending self-help conferences for PWS from the
perspective of adults who stutter;
 To determine if this is a valuable resource for PWS.
Interpretive Phenomenological Analysis Rationale
IPA aims to explore the details of how people make sense
of their personal and social worlds
Smith & Osborn, 2008
IPA – Data Collection
 Semi-structured interviews (face-to-face) –
 4-18 months post-conference
 flexibility to explore particular topics of interest
 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
(Smith & Osborn, 2008)
IPA - Participant Information
What are the lived experiences having
attended self-help conference(s) for PWS
from the perspective of a PWS?
Major Themes:
1. Socializing Opportunities with Other PWS
2. Affiliation
3. Shifting Roles
4. Positive Change of Emotions
5. Redefining Oneself
1. Socializing Opportunities
with Other PWS
 describe how participants view 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 are
relatives of a PWS) this socializing is of a distinctive
nature. They provide opportunity for 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.
1. Socializing Opportunities
with Other PWS
Subthemes:
a. Meeting people/making friends
b. Social gatherings (conference planned/spontaneous)
c. Extreme socializing
d. Post-conference socializing
1. Socializing Opportunities with Other PWS
Hayley (195-211) - 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. And not shunned, or cold, or alone.
2. Affiliation
 describes how participants report ways that they feel
or have become a part of a community of PWS.
Participants often identify groups of friends from their
first conference and subsequent conferences.
2. Affiliation
Subthemes:
a. Bonding experience
b. Desire to reunite
c. Expansion of community
2. Affiliation
Jackie (240-242) - I 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.
2. Affiliation
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.
3. Shifting Roles
 describes how several of the participants have changed or
“evolved” from being someone seeking help to someone
who wants to give help. The participants generally come to
their first conference with needs, goals, or hopes that relate
to themselves. However, several participants describe what
seems to be a role shift that are of a more helping or
guiding nature. This appears to happen as early as during
their first conference. (e.g. helping to reassure parents of
CWS, taking on leadership roles within local groups,
wanting to present at future conferences, wanting to be a
role model, becoming more active in the online
community, and educating others about stuttering
3. Shifting Roles
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 be-,
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.’
4. 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.
4. Positive Change of Emotions
Alex’s recollection of his conference experiences exhibit his
transition from being nervous at the beginning of the
conference, to being satisfied at the end of the conference,
to being eager to see people at the next conference.
Emotions are illustrated in their respective order.
4. Positive Change of Emotions - Nervous
Alex (348) - I 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 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.
4. Positive Change of Emotions - Satisfied
Alex (538) - I 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.
4. Positive Change of Emotions - Eager
Alex (450) - I 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)
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 him or herself in their social
world.
5. Redefining Oneself
a.
b.
c.
d.
e.
f.
Improved self-perspective
Increased self-esteem
Self-acceptance
Increased risk taking
Self-realization
Feelings of Freedom
5. Refining Oneself
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.
5. Refining Oneself
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.
6. 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.
6. Post-Conference Disclosure
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.
Conclusions and Implications
 National self-help conferences are beneficial
and can be a useful part of stuttering
management.
 SLPs can make referrals for clients to attend
self-help conferences while adhering to
evidence-based practice ASHA guidelines
(2004).
Conclusions and Implications
 Attendance at self-help conferences for PWS can play a
role in:
 transitioning from unsuccessful to successful
stuttering management.
 the continued success of stuttering management
 providing opportunities for PWS to perceive
themselves as competent communicators
 preventing relapse after therapy
Studies in Progress
Study I – Adults, OASES, 6 months+ post conference
 Measuring the overall impact of stuttering on adults
(OASES; Yaruss & Quesal, 2008) at the beginning of a selfhelp conference and at least 6 months after attending a
self-help conference.
 Preliminary results showed the greatest reduction of the
impact of stuttering amongst first-time attendees.
Study II – Adults, teens, school-age children, OASES, 2-4
weeks and 3-4 months post conference, first timer’s only
 Data still being collected
Self-Help Conferences for PWS
 National Stuttering Association
St. Petersburg, FL – July 4 – 8
 FRIENDS – National Association of Young People Who Stutter
Denver, CO July 19-21
Acknowledgment
 I would like the National Stuttering Association, and
FRIENDS for their support in this research.
References
Hunt, B. (1987). Self-help for stutterers-Experience in Britain. In L. Rustin, H.
Purser & D. Rowley (Eds.), Progress in the treatment of fluency disorders (pp.
198-214). London: Taylor & Francis.
Krauss-Lehrman, T., & Reeves, L. (1989). Attitudes toward speech-language
pathology and support groups: Results of a survey of members of the National
Stuttering Project. Texas Journal of Audiology and Speech Pathology XV(I), 2225.
Plexico, L., Manning, W. H., & DiLollo, A. (2005). A phenomenological
understanding of successful stuttering management. Journal of Fluency
Disorders, 30(1), 1-22.
Ramig, P. (1993). The impact of self-help groups on persons who stutter: A call for
research. Journal of Fluency Disorders, 18, 351-361.
Smith, J. A., & Osborn, M. (2008). Interpretative phenomenological analysis. In J.
A. Smith, (Ed.), Qualitative Psychology: A Practical Guide to Research Methods
(2nd ed.). London: Sage, 53-80.
References
(cont.)
Trichon, M., Tetnowski, J., & Rentschler G. (2007). Perspective of participants of
self-help groups for people who stutter. In J. Au-Yeung & M. M. Leahy (Ed.),
Research, Treatment, and Self-help in Fluency Disorders: New Horizons.
Proceedings of the Fifth World Congress on Fluency Disorders, 25-28 July, 2006,
Dublin, Ireland. (pp.171-176). The International Fluency Association.
Yaruss, J. S., & Quesal, R. W. (2006). Overall Assessment of the Speaker's
Experience of Stuttering (OASES): Documenting multiple outcomes in
stuttering treatment. Journal of Fluency Disorders, 31(2), 90-115.
Yaruss, J. S., Quesal, R. W., Reeves, L., Molt, L. F., Kluetz, B., Caruso, A. J.,
McClure, J. A., & Lewis, F. (2002). Speech treatment and support group
experiences of people who participate in the National Stuttering Association.
Journal of Fluency Disorders, 27(2), 115-134
Questions
END
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1a. Meeting people/making friends
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-andso and blah blah blah,” and the environment
was just warm, accepting, and friendly.
1c. Extreme socializing
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 am 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.
1d. Post-conference socializing
Jackie (342) - I 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.
What are the lived experiences of attending self-help a
conference(s) for PWS from the perspective of a PWS?
Major Themes:
1. Unique Socializing Opportunities
2. Affiliation
3. Shifting Roles
4. Positive Change of Emotions
5. Redefining Oneself
2b. Desire to reunite
Bill (315-317) - I 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.
What are the lived experiences of attending self-help a
conference(s) for PWS from the perspective of a PWS?
Major Themes:
1. Socializing Opportunities with Other PWS
2. Affiliation
3. Shifting Roles
4. Positive Change of Emotions
5. Redefining Oneself
3. Shifting Roles
Fred (399-403) - there was a colleague …who out of
the blue, … 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.
What are the lived experiences of attending self-help a
conference(s) for PWS from the perspective of a PWS?
Major Themes:
1. Socializing Opportunities with Other PWS
2. Affiliation
3. Shifting Roles
4. Positive Change of Emotions
5. Redefining Oneself
4. Positive Change of Emotions
From:
 Nervous
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.
4. Positive Change of Emotions
To:
 Joy
Ken (555) - I 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.
What are the lived experiences of attending self-help a
conference(s) for PWS from the perspective of a PWS?
Major Themes:
1. Unique Socializing Opportunities
2. Sense of Community
3. Shifting Roles
4. Range of Emotions
5. Redefining Oneself
5a. Improved self-perspective
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 to.
5b. Increased self-esteem
Alex (177) - 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 ).
5c. Self-acceptance
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.”
5d. Increased risk taking
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.
5e. Self-realization
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.
5f. Feelings of Freedom
Alex (171) - I 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."
Encouragement / Inspiration
It' s been a very good experience…(member) has really
been inspirational...Just know ing his story of (his)
struggling for so long and y et being fluent
today …he's so encouraging to others.
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 y ou want to share.
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.
Sense of Community
It' s been helpful...it' s...opened my ey es to that
there are other people that face the same
problem every day and...there lives go
on…You see people in all jobs
Exposure to other PW S
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.