Stuttering therapy based on what PWS say they want

John A. Tetnowski, Ph.D., CCC-SLP, BRS/M-FD University of Louisiana-Lafayette & Charlie Osborne, M.A., CCC-SLP University of Wisconsin, Steven s Point Stuttering therapy based on what PWS say they want American Speech-Language-Hearing Association Saturday, November 17, 2012 1:30 p.m. - 2:30 p.m. Georgia World Congress Center, Room B 407

Purpose of this workshop 1) Share information about stuttering treatment and outcomes that came from surveys of adults who stutter 2) Share information about stuttering treatment and outcomes that came from surveys of teens and their parents 3) Synthesize this information to make wise and informed clinical decisions

Background How people who stutter (PWS) interact with their environment and how they feel about issues related to everyday life, intervention, and self-help have been studied by researchers over the years. The majority of these studies however where based upon one or two variables and are primarily related to clinician measured variables (mostly related to surface features of stuttering, e.g., %SS).

More recently.. Research has begun looking at the personal experience of stuttering (Plexico, Manning, & DiLollo, 2006; Trichon, Tetnowski, & Renchsler, 2007; Yaruss & Quesal, 2006). These studies found that there are more than observable features that PWS report as having an impact on their overall recovery.

For example.. Plexico, Manning, & DiLollo (2005) studied PWS that have had success in stuttering therapy. They found that clients who reported success in therapy had: Fewer negative emotions Less intrinsic fear Fewer avoidances of situations Further, they found that one of the main factors in maintaining success after therapy was finding longterm support.

And finally. Yaruss and Quesal (2006) have documented that there are factors other than just observable features (e.g., %SS) that make up the disability and potential handicaps associated with stuttering. They also studied the overall impact of stuttering on the lives of people who stutter.

Although these studies are very important. They are limited by their relatively small sample sizes. A few surveys have revealed some data that clinicians may want to consider as they treat PWS.

Purpose McClure & Tetnowski, 2010 surveyed a sample a large number of people from the stuttering community (PWS, parents of CWS, and SLPs) about: A) Impact of stuttering on the life of PWS B) Type of traditional therapy received (and perceived success) C) Types of non-traditional therapy received (and perceived success)

Of the 686 adults who stutter A) Impact of stuttering on the life of PWS B) Type of traditional therapy received (and perceived success) C) Types of non-traditional therapy received (and perceived success)

A) Results 47.6% of PWS say that stuttering affects them at either work or school (some or a lot). 51.3% of PWS say that they avoid speaking situations because of their stuttering (some or a lot). 37.9% of PWS say that stuttering affects their social life (some or a lot).

A) Results 38.4% of PWS say that they feel embarrassed when people find out that they stutter. Only 20.9% of PWS say they have been teased in the past 5 years about stuttering.

A) Results 46.8% of PWS say they do not talk to family and friends about their stuttering (not at all or a little). 69.9% of PWS do not talk about stuttering with their co-workers or classmates.

B) Therapy Speech therapy is the primary treatment for stuttering. 90% of the adults and teens surveyed have had speech therapy and 69% have had therapy as adults. 87% have had speech therapy more than once, and 35% have had speech therapy five or more times.

B) Results Fluency shaping strategy self-assessment: 34.3% (not successful at all) 55.5% (somewhat successful) 10.7% (very successful)

B) Results Stuttering modification strategy selfassessment: 27.7% (not successful at all) 57.5% (somewhat successful) 18.8% (very successful)

B) Results Changing attitudes about stuttering: 12.5% (not successful at all) 42.7% (somewhat successful) 44.8% (very successful)

Non-traditional therapies Hypnosis 77.6% not successful 20.0 somewhat successful 2.4% very successful

Psychiatric or psychological counseling Hypnosis 42.0% not successful 43.5 somewhat successful 14.5% very successful

Non-traditional therapies Motivational course 31.9% not successful 48.9 somewhat successful 19.1% very successful

Non-traditional therapies Neurolinguistic programming 63.0% not successful 25.9 somewhat successful 11.1% very successful

Non-traditional therapies Airflow or modified breathing 34.4% not successful 55.2 somewhat successful 10.4% very successful

Non-traditional therapies Prescription medication 41.1% not successful 46.7 somewhat successful 12.2% very successful

Non-traditional therapies Vitamins or herbal supplements 75.0% not successful 25.0 somewhat successful 0.00% very successful

Summary Slide # 1 What types of therapy do PWS really want? Therapies that change their attitude about stuttering. STUTTERING HAS AN IMPACT AT SCHOOL, AT WORK AND IN SOCIAL SETTINGS.

Associated Results 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.

Summary Slide # 2 PWS that attend self-help groups are affected to a lesser degree than PWS that do not attend self-help groups.

Who provides the therapy About one-third of adult and teen respondents and 46% of children had speech therapy from Board Recognized Specialists in Fluency Disorders (SLPs that specialize in stuttering).

Adults and teens who worked with a BRFS were: More likely to have had speech therapy as an adult More likely to have had a successful therapy experience with a private clinician or intensive program More likely to have attended a stuttering support group p <.05

Children who saw a BRFS were: Significantly less likely to avoid speaking situations Significantly less likely to find that stuttering interferes with social and family life Significantly less likely to be embarrassed about stuttering More likely to have had a successful therapy experience p <.05

Summary Slide # 3 Experienced and confident clinicians (i.e., specialists) appeared to get better results in therapy (as reported by the PWS).

TWO KEY FINDINGS 1) Stuttering has a significant impact on the lives of people who stutter THE GOOD NEWS: This can be minimized through self-help and support groups

2) Therapy can help: but not all types are equal: Non-traditional therapies do not seem to be as successful Hypnosis and vitamin therapy have the poorest reported results Prescription medication only showed 12.2 highly successful ratings Therapies that change attitudes are viewed as most successful in self-assessment surveys PWS indicated that BRFS provide better opportunities for improvement

Discussion and next steps Through this study, we have gathered much more information on PWS. Much of this related to successes in therapy, and how success can be achieved.

Discussion Obviously, there are some weaknesses in the study related to potential bias of the participants. Future studies should use a group that is less connected with a particular organization. Future studies should explore different age groups and more parents.

Purpose The purpose of the next study (Tetnowski & McClure, 2011) was to sample a large number of teens who stutter and their parents regarding the impact of stuttering on their lives.

THE NEXT STEP

Methods The survey was designed as an on-line survey, using Survey Monkey, and participants were elicited from the National Stuttering Association s (NSA), FRIENDS (the Association of Young People Who Stutter) database, and the SBFD database. Participants were recruited through an e-mail notice. 329 parents of teens who stutter and 313 teens who stutter responded to the survey.

Key aspects of this survey that will be reported on today: I. Success in Therapy II. Life Impact III. Participation of Parents in Therapy *BLACK SLIDES ARE PARENT DATA *RED SLIDES ARE FROM TEENS AND CHILDREN

I. Success in treatment *BLACK SLIDES ARE PARENT DATA *RED SLIDES ARE FROM TEENS AND CHILDREN

Comparison Success-Speak More Easily PARENT TEENS

Comparison Success-Reducing Fear of Speaking PARENT TEENS

Summary Slide # 4 According to parent and teen self-report, no therapy was highly successful more than about 30% of the time. Parents and teens closely agree on the impact of their treatments.

II. Life Impact

How does stuttering affect performance at school PARENT TEENS

How does stuttering affect life by avoiding speaking situations because of stuttering PARENT TEENS

How does stuttering interfere with social and family life PARENT TEENS

How does stuttering affect your life through embarrassment about stuttering PARENT TEENS

How does stuttering affect your life through bullying or teasing PARENT TEENS

Summary Slide # 5 Teens think that stuttering has a bigger impact on their lives than their parents. This is especially true for: Impact of stuttering on their performance at school Avoidance of speaking Impact on social and family life Embarrassment about stuttering

So what do teens do about it?

How does stuttering affect YOUR life? (talk about stuttering with family and close friends) 1=A lot 2=Some 3=A Little 4=Not at All Frequency Percent 1.00 35 11.2 2.00 66 21.1 3.00 62 19.8 4.00 41 13.1 Total 204 65.2 Missing 109 34.8 Total 313 100.0

How does stuttering affect YOUR life? (talk about stuttering with family and close friends)

How does stuttering affect YOUR life? (talk about stuttering with co-workers and classmates) 1=A lot 2=Some 3=A Little 4=Not at All Frequency Percent 1.00 13 4.2 2.00 44 14.1 3.00 72 23.0 4.00 73 23.3 Total 202 64.5 Missing 111 35.5 Total 313 100.0

How does stuttering affect YOUR life? (talk about stuttering with co-workers and classmates)

Summary Slide # 6 About ½ talk about it a lot or some with close friends and family. Less than 1/3 talk about it with co-workers or classmates.

III. Participation of Parents in Therapy

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Conferences with SLP) 1=A lot;2=some;3=never Frequency Percent 1.00 99 46.9 2.00 97 46.0 3.00 14 6.6 Total 210 99.5 Missing 1.5 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Conferences with SLP)

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Making changes in the speaking environment at home) 1=A lot;2=some;3=never Frequency Percent 1.00 53 25.1 2.00 113 53.6 3.00 43 20.4 Total 209 99.1 Missing 2.9 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Making changes in the speaking environment at home)

To what extent were you, as a parent, involved with your child's speech therapy during this period? ("Homework" assignments to practice speaking) 1=A lot;2=some;3=never Frequency Percent 1.00 61 28.9 2.00 98 46.4 3.00 50 23.7 Total 209 99.1 Missing 2.9 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? ("Homework" assignments to practice speaking)

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Observing the therapy sessions) 1=A lot;2=some;3=never Frequency Percent 1.00 60 28.4 2.00 61 28.9 3.00 84 39.8 Total 205 97.2 Missing 6 2.8 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Observing the therapy sessions)

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Participating directly in the therapy session) 1=A lot;2=some;3=never Frequency Percent 1.00 31 14.7 2.00 65 30.8 3.00 106 50.2 Total 202 95.7 Missing 9 4.3 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Participating directly in the therapy session)

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Learning how to conduct therapy at home) 1=A lot;2=some;3=never Frequency Percent 1.00 32 15.2 2.00 82 38.9 3.00 91 43.1 Total 205 97.2 Missing 6 2.8 Total 211 100.0

To what extent were you, as a parent, involved with your child's speech therapy during this period? (Learning how to conduct therapy at home)

Summary Slide # 7 Parental involvement in therapy is limited. Generally speaking, it is limited to: Attending parent conferences They sometimes are involved in: Modifying the home environment Practice speaking at home Parents are rarely involved in: Observing sessions Taking part in sessions Learning how to conduct sessions at home

Summary of Findings and what we can do about it! 1. Therapies that change attitudes about stuttering are viewed as being very helpful by PWS. 2. PWS that attend self-help groups are affected to a lesser degree. 3. Experienced and confident clinicians (i.e., specialists) appeared to get better results in therapy. 4. Most stuttering for teens is minimally successful at best. 5. Teens think that stuttering has a bigger impact on their lives than their parents. 6. Teens who stutter do not talk about it with others. 7. Parental involvement in therapy is limited.

Solution # 1 Start or find out about self-help groups. There is an NSA Group in Atlanta *go to http://www.nsastutter.org/localchapters/index.html (to find a local chapter)

Attend a national self-help conference! National Stuttering Association (NSA) Annual Conference July 3-7 2013, Scottsdale, AZ The 16th Annual Convention of FRIENDS: The Association of Young People Who Stutter July 18-20, 2013 Nashville, TN

Solution #2 How we can change attitudes: Therapies that stress education and understanding. Education: Normal speech Normal talking Communication VIDEO: CA_00:45 02:35 VIDEO: Cornbread

Solution # 3 Learn many techniques. Learn when to use them. Understand the concepts of change and other therapeutic issues. Attend CEUs (like you are now!!!) BECOME A BRS-FD.

In a poorly designed study What factors predicted success in stuttering therapy? the belief by the clinician that their client will get better

Clinician confidence Studies show that SLPs feel least comfortable when working with PWS. How do people get better?

My philosophy of therapy Give the client everything they need to be successful..and nothing more

Stages of Change (the right time) 1) Precontemplation: unaware of the problem; does not see a need for change; gradual awareness when attention is called to it; denial or very defensive 2) Contemplation: actively considers the possibility of change; weighs the cost of success From Prochaska, DiClemente, & Norcross, 1992

Stages of Change 3) Preparation: identifying goals and priorities; seeking information by talking to others, reading, searching the internet* 4) Action: begin to modify behaviors; use these skills to achieve goals; these behaviors often get recognition 5) Maintenance: stabilize behavior and cognition in order to prevent relapse; making better choices using new behaviors From Prochaska, DiClemente, & Norcross, 1992

Solution # 4 Options for increasing success in teens who stutter: In a study by Metten, Zueckner and Rosenberger (2007) showed long term improvements using the main elements of Van Riper-like Stuttering Modification Therapy, with added speech techniques and awareness tasks. Results were verified by both SSI and ACES (now OASES-T) scores. O Brian, Packman, & Onslow (2008) and Carey, O Brian, Onslow, Block, Packman & Menzies (2012) found significant decrease in stuttering behaviors following the implementation of the Camperdown program.

The debate Nippold, M.A. (2011). Stuttering in school-age children: A call for treatment research. Language, Speech and Hearing Services in Schools, 42, 99-101. Yaruss, J.S., Coleman, C.E., & Quesal, R.W. (2012). Stuttering in school-age children: A comprehensive approach to treatment. Language, Speech and Hearing Services in Schools, 43, 536-548. Nippold, M.A. (2012). When a school-age child stutters: Let's focus on the primary problem. Language, Speech and Hearing Services in Schools, 43, 549-551.

Debate keys How do we measure success following stuttering treatment? Is it %SS, naturalness, etc.? Is it Quality of Life (QOL), life participation, etc.?

When to use a particular type of intervention FLUENCY SHAPING When a client can easily modify their fluency When a client seeks high levels of fluency When a client exhibits no (or very little fear or avoidance) When the client does not have the cognitive ability to use a stuttering modification program STUTTERING MODIFICATION When a client has difficulty modifying fluency When a clients shows significant fear or avoidance When a client does not seek total fluency When a client presents low adaptation and high consistency Poor attitude or little knowledge of stuttering (for older kids and adults)

When is a hybrid approach appropriate? when some stuttering remains after fluency induction, but the client does not show significant fears when the client can modify speech successfully, but lacks understanding about normal speech, stuttering, secondaries, etc. when the client can modify speech successfully, but does not want to use it all the time

following a traditional fluency shaping program in addition to some fluency shaping strategies to modify speech/decrease stuttering. Specific hierarchies for intervention: I) Motivation and Identification: a) Education: 1) E will be educated about the normal aspects of communication. Following this education module, she will be able to thoroughly explain the processes of: i) normal speech production ii) normal connected speech

2) E will be educated about stuttering and secondary behaviors. Following this education module, she will be able to thoroughly explain: i) stuttering ii) secondary behaviors including concomitant behaviors, postponement and avoidance. II) Desensitization: As a preliminary step to modifying speech, E will be able to: Identify stuttering in the speech of other individuals. Identify stuttering in her own speech. Identify secondary behaviors when viewing others. Identify secondary behaviors in her own speech. Demonstrate stuttering in her own speech upon request. Demonstrate secondary behaviors in her own speech upon request.

Modification/Variation of speech: Use of freezing Demonstrate the ability to stop, then continue speaking during a reading task during moments of stuttering. Demonstrate the ability to stop, then continue speaking during a monologue task during moments of stuttering. Cancellations Demonstrate cancellations (through the use of prolonged speech) during a single syllable repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a single syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a single syllable naming task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a multi-syllable repetition task with 100% accuracy and less than.5% stuttered syllables.

Demonstrate cancellations (through the use of prolonged speech) during a multi-syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a multi-syllable naming task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a sentence repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a sentence reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a sentence generation task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a monologue task with 100% accuracy and less than.5% stuttered syllables. Demonstrate cancellations (through the use of prolonged speech) during a dialogue task with 100% accuracy and less than.5% stuttered syllables.

Pull-outs Demonstrate pull-outs (through the use of prolonged speech) during a single syllable repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a single syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a single syllable naming task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a multi-syllable repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a multi-syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a multi-syllable naming task with 100% accuracy and less than.5% stuttered syllables.

Demonstrate pull-outs (through the use of prolonged speech) during a sentence repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a sentence reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a sentence generation task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a monologue task with 100% accuracy and less than.5% stuttered syllables. Demonstrate pull-outs (through the use of prolonged speech) during a dialogue task with 100% accuracy and less than.5% stuttered syllables.

Preparatory sets Demonstrate preparatory sets (through the use of prolonged speech) during a single syllable repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a single syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a single syllable naming task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a multi-syllable repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a multi-syllable reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a multi-syllable naming task with 100% accuracy and less than.5% stuttered syllables.

Demonstrate preparatory sets (through the use of prolonged speech) during a sentence repetition task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a sentence reading task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a sentence generation task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a monologue task with 100% accuracy and less than.5% stuttered syllables. Demonstrate preparatory sets (through the use of prolonged speech) during a dialogue task with 100% accuracy and less than.5% stuttered syllables.

Success with this program 11-15-11: 51-55% SS across tasks VIDEO: 15:45 16:30 2-23-12: 1% SS at conversation VIDEO: 05:45 06:30

Solution # 5 Get parents into the therapy room and teach them.or better yet, have their kids teach them. VIDEO: 16:58 18:20

Summary & Conclusions Much of what we know about stuttering and stuttering therapy has been documented in laboratory settings. Only recently are we learning from PWS and those close to them. These results seems to show a preference for Understanding and attitudinal change Communicating with others Self-help The role of a skilled clinician

Philosophical stance Find the right therapy for the right person at the right time. The right therapy is more than just technique.it is knowing when to implement it. The right person is finding a therapy that fits the needs of the client.and the clinician. The right time is when all parties are motivated to work. This may mean family training. It does take a skilled and confident clinician. UPDATE YOUR SKILLS!

Selected References Bridgman, K, Onslow, M., O Brian, S., & Block, S., (2012). Preschool telehealth: Treating children who stutter using internet and webcam. Presented at the 7 th World Congress on Fluency Disorders, Tours, France. Carey, B., O Brian, S.,Onslow, M., Packman, A., & Menzies, R. (2012) Webcam delivery of the Camperdown Program for Adolescents who stutter: A Phase 1 trial. Language, Speech and Hearing Services in Schools, 43, 370-380. Nippold, M.A. (2011). Stuttering in school-age children: A call for treatment research. Language, Speech and Hearing Services in Schools, 42, 99-101. Nippold, M.A. (2012). When a school-age child stutters: Let's focus on the primary problem. Language, Speech and Hearing Services in Schools, 43, 549-551. Plexico, L., Manning, W.H., & DiLollo, A. (2005). A phenomenological understanding of successful stuttering management. Journal of Fluency Disorders, 30, 1-22. Prochaska, J.O., & DiClemente, C.C. (1992). Stages of change in the modification of problem behaviors. In M. Hersen, R.M. Eisler, & P.M. Miller (Eds.), Progress on behavior modification. Sycamore, IL: Sycamore Press. Prochaska, J.O., DiClemente, C.C., & Norcross, J.C. (1992). In search of how people change. American Psychologist, 47(9), 1102-1114. Tetnowski, J.A., McClure, J. & Granger, K. (2011). The experiences of people who stutter. Paper presented at the Annual Conference of the National Stuttering Association, Ft. Worth, TX. Tetnowski, J.A. & McClure, J. (2010). Experiences of people who stutter: National Stuttering Association 2009 survey. Poster presentation at the Annual Conference of the American Speech- Language-Hearing Association, Philadelphia, PA. Yaruss, J.S., Coleman, C.E., & Quesal, R.W. (2012). Stuttering in school-age children: A comprehensive approach to treatment. Language, Speech and Hearing Services in Schools, 43, 536-548.

For Questions and Comments (or for a full handout) tetnowski@louisiana.edu cosborne@uwsp.edu