Perspectives on the Role of Support Groups in Stuttering Research
Perspectives on the role of support groups in stuttering research
by Hans-Georg Bosshardt (Germany), Tom Wedig (UK), Scott Yaruss (Pennsylvania, USA) and Lee Reeves (Texas, USA)
The following three short papers are about the role of support groups in research about stuttering in three different countries. The authors are willing to answer specific or general questions about their experiences.
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About the presenter: Hans-Georg Bosshardt is a professor of psychology and vice-dean of the Department of Psychology at the Ruhr-University Bochum (Germany). He was president of the International Fluency Association and has the status of an ASHA international affiliate. He has published and presented several papers on stuttering and investigates how speech planning and short-term memory load affect speech fluency, laryngeal activity and the timing of speech movements. He is fascinated by birds and likes bird watching, hiking and bicycling. | Preliminary thoughts about the cooperation between consumers and researchers |
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About the presenter: Tom Weidig holds a Master of Science degree in Theoretical Physics from Imperial College London. His PhD thesis at the Centre for Particle Theory, University of Durham, was on 'Classical and Quantum Aspects of Solitons'. He was a postdoctoral researcher at the University of Manchester and a visiting researcher at Trinity College, University of Cambridge. Leaving physics research behind, he since worked as a risk analyst in derivatives for Bear Stearns in London and is now developing a risk model for venture capital funds at the European Investment Bank in Luxembourg. Tom is Chair of British Stammering Association's Research Committee | The British Stammering Association Research Committee |
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About the presenters: J. Scott Yaruss is an associate professor at the University of Pittsburgh and Co-director of the Stuttering Center of Western Pennsylvania, a partnership between the University of Pittsburgh and Children's Hospital of Pittsburgh. Yaruss conducts research on the onset and development of stuttering in preschool children, including analysis of linguistic and motoric source factors that contribute to children's production of speech disruptions. (This research is supported by a 5-year grant from the National Institutes of Health.) Yaruss's research also focuses on the evaluation of treatment outcomes for children, adolescents, and adults who stutter. Yaruss teaches classes on stuttering as well as counseling methods for speech-language pathologists and conducts numerous workshops around the country designed to help clinicians feel more comfortable with their ability to work with individuals who stutter. Lee Reeves, DVM is a veterinarian and is the current chairman of the Board of Directors of the National Stuttering Association. He began his involvement with self-help groups as the co-founder of the Council of Adult Stutterers in Bryan, Texas in 1971. In 1972 he presented a speech entitled "The Role of Self-Help Groups in the Treatment of Stuttering" at the Michigan State Speech and Hearing Association convention. In 1982 he co-founded a second self- help group in Dallas , Texas that eventually became the Dallas Chapter of the National Stuttering Association. Dr. Reeves has been a frequent speaker on the subject of stuttering at meetings for Speech Pathologists, NSA Chapters and various church and service organizations. He served as the consumer on the "Fluency Task Force" established by the Texas Speech and Hearing Association in 1987. In 1996 he was presented the Charles Van Riper Award by the National Council of Communicative Disorders. He is currently serving as a public member on the Texas State Examining Board for Speech-Language Pathology and Audiology, the ASHA Council for Clinical Competence, and the Specialty Board for Fluency Disorders. |
The National Stuttering Association Research Committee: An Update - by Scott Yaruss and Lee Reeves |
The National Stuttering Association Research Committee: An Update - by Scott Yaruss and Lee Reeves
What is the NSA Research Committee (NSARC)?
The NSARC, first created in 1998, is a standing committee of the National Stuttering Association (NSA) designed to promote research on stuttering. The NSARC is comprised of 7 members: three speech-language pathologists / researchers who specialize in stuttering, three consumer members (people who stutter), and a chair representing the NSA Board of Directors. Current and past members of the NSARC include: J. Scott Yaruss (Chair), Lee Reeves (former chairman of the NSA board of the directors), Larry Molt, Bob Quesal, Ken St. Louis, Gerald Maguire, Jim McClure, Tony Caruso, and Fred Lewis.
What is the purpose of the NSARC?
The purpose of the NSARC is to promote research on stuttering by facilitating interactions between the NSA membership and scientists conducting research on stuttering. In addition, the NSARC also conducts research projects of its own, particularly focused on identifying and exploring the value of support group participation for people who stutter.
What are some of the NSARC's accomplishments?
Facilitating Research. During the past 5 years, the NSARC has reviewed more than 25 proposals from researchers interested in partnering with the NSA. The majority of these proposals have been from scientists seeking volunteers from among the NSA's membership to participate in research studies. The NSA has been able to help researchers contact and recruit subjects for those projects that have been approved by the committee. Research Projects. In addition the NSARC has conducted two additional studies of its own aimed at gathering more information about the opinions of people who stutter regarding speech therapy, support group participation, and clinical services available to people who stutter. These studies, which have been published in the Journal of Fluency Disorders, have helped to provide information about the needs and experiences of people who stutter. Following are the abstracts from these two papers:
Yaruss, J.S., Quesal, R.W., Reeves, L., Molt, L., Kluetz, B., Caruso, A.J., Lewis, F., & McClure, J.A. (2002) Speech treatment and support group experiences of people who participate in the National Stuttering Association. Journal of Fluency Disorders, 27, 115-135.
Yaruss, J.S., Quesal, R.W., & Murphy, W. (2002). National Stuttering Association Members' opinions about stuttering treatment. Journal of Fluency Disorders, 27, 227-242.
Research Symposium. In June, 2002, the NSA gathered researchers, clinicians, and people who stutter for the first "joint symposium" on stuttering research. The meeting, entitled Pioneering Stuttering Research in the 21st Century, was designed to encourage a dialogue between scientists and people who stutter regarding issues of importance in the study of fluency disorders. In total, approximately 60 people attended this first-ever symposium with a ratio of approximately 3 clinicians or re-searchers to each consumer (person who stutters). Participants worked in small groups to discuss a variety of topics reflecting current research priorities from across the field. Discussion topics included: (a) early intervention and identification of risk factors for developing stuttering, (b) treatment outcomes research, (c) relationships between brain functioning and speech behavior, (d) attitudes toward people who stutter, and (e) interactions between linguistic and motor factors in the development of stuttering.
Each working group evaluated a series of questions about goals for future research and discussed roadblocks to achieving those goals. These questions included:
- What are the key research questions in this area?
- What is currently being done to address these questions?
- What are the needs for additional research to address these questions?
- How can the identified current and future needs for research in this area be met?
- What are the roadblocks to meeting these needs?
- What collaborative and other strategies can be developed to overcome these roadblocks?
- What action plans, based on new and exist-ing models of funding and collaboration, can be developed to generate needed research in this area?
- What roles can consumer organizations play in these efforts?
Through their discussions, participants identified several key areas where further research is needed and brainstormed about novel approaches for meeting those research needs. Among the many outcomes of the meeting was the initiation of several collaborations among research scientists, as well as new partnerships between scientists and con-sumers. These collaborations hold significant promise for improving the under-standing of the stuttering disorder and the treatment of people who stutter. Less tangible outcomes included a greater sense of under-standing of the disorder for people who stutter, clinicians, and researchers and an increased sense of partnership among these groups as they continue to work toward addressing research needs in the future.
How can researchers participate with the NSA?
Guidelines for submitting research proposals to the NSARC can be found in a paper for the Fourth Online Conference for International Stuttering Awareness Day entitled. This paper can be accessed here. Prospective researchers can also contact the authors of this paper for more information or participate in the threaded discussion as part of this year's ISAD Online Conference.
Preliminary thoughts about the cooperation between consumers and researchers by Hans-Georg Bosshardt
These preliminary thoughts were stimulated by lively discussions on a panel at the "Fourth World Congress on Fluency Disorders" (Montreal, August 11-15, 2003). The title of this panel was "How can consumer associations support research and researchers?" and it was chaired by Tom Weidig and Scott Yaruss. These are "my own" ideas only in the sense that I have put them together. But they arose from discussions with the panellists (Moussa Dao, Judith Eckardt, Jaan Pill, Michael Sugarman, Per Knudsen, and myself) and with members of the PEVOS-group of researchers in the German self-help association which I will describe in greater detail in the following section. For this paper, I freely used some thoughts that were brought up in these discussions or my understanding of them and put them together with my own thoughts. In the following section I will describe how the German self-help association supports research and in the two succeeding sections I propose that consumer and professional associations should cooperate to make scientific results and the therapy market more transparent to the public. The definition of therapy standards seems to me an important issue where the interests of consumers and researchers/clinicians meet.
Demosthenes Institute of "Bundesvereinigung Stotterer-Selbsthilfe, e.V"
- Since 1986 the Demosthenes Institute provides the institutional background for all research-related work within the German self-help association. The members of this Institute meet several times a year in a called Forum to prepare, promote and coordinate information campaigns, courses and information material for consumers, parents of stuttering children, teachers and other relevant groups. Part of this institute is also the Demosthenes publishing company which produces and distributes books, CDs, Videos, and information material and makes them available to consumers. The Demosthenes Institute has initiated and supports PEVOS which is a major external research program to evaluate the effects therapies in ambulant and stationary settings. The results of PEVOS were presented in a separate session on the Fourth World Congress on Fluency Disorders (Montreal, August 11-15, 2003) and in an article written by Julia Pape-Neumann, Hans-Georg Bosshardt, Ulrich Natke and Horst Oertle. for this online-conference (the other members of the PEVOS group are Reiner Nonnenberg, Patricia Sandrieser, Peter Schneider, Nicole Spindler and Hartmut Zueckner).
- Creation of the PEVOS-project was one of the major research-oriented activities of the Demosthenes Institute. The program for the evaluation of stuttering therapies (PEVOS) was developed to evaluate different stuttering therapies over a time period of two years after therapy. The concept was designed by a group of therapists and scientists and was tested since 2001. In Germany a relatively high number of therapists offer their service to stuttering persons but most of these therapies have never been evaluated. In the very few published evaluation studies different measurement instruments were used so that the results of different therapies and studies are incomparable to each other. So, at times when German consumers and health insurances have an increasing interest in obtaining reliable information about treatment effects and efficacy there is actually a lack of objective and informative data. For this reason the German Bundesvereinigung Stotterer-Selbsthilfe e.V. invited consumers, therapists and scientists to develop a useful program for the evaluation of different stuttering therapies in Germany. In the test-phase data were collected from ten therapists and about 100 clients. Apart from PEVOS, the Bundesvereinigung Stotterer Selbsthilfe, e.V. has so far only taken few other initiatives to actively support research, e.g. in one recent project the emotional stress of stuttering school children is investigated.
- How do your assoc communicate research to your members? This is the home page of the Demosthenes Institute: http://www.demosthenes-institut.de/
- Does your assoc help researchers identify participants for research projects? There are no formal activities to help with the recruitment of participants for projects. Researchers are welcome to contact consumer groups and they can find contact addresses on the homepage and "Kieselstein" which is the official journal of the "Bundesvereinigung fuer Stotterer-Selbsthilfe".
Proposal for a "Science-Awareness Campaign" in consumer associations
Self help and consumer associations could help science if they increase the understanding of the rationale of science and scientifically based therapies. Such campaigns could be run under at least two perspectives.
- On the one hand such campaigns could increase the awareness that many events may qualify for a media show or for something that increases personal wellness but not necessarily be part of a scientifically based intervention strategy. Hypnotic treatment of stuttering, emotionally capturing reports of a successful therapy, a comforting meditation workshop, and a rhetoric course with excitingly interesting participants and discussions may qualify for interesting events. But this does not necessarily imply that these are effective stuttering therapies.
- In the second perspective campaigns should provide solid information about empirical treatment effects, about what we know and don't know about stuttering, its causes and treatment possibilities. Self-help associations should help to educate and inform consumers so that they are able to ask good questions, as for example for systematically collected empirical evidence for therapy effects, that they know about the difference between personal experience and systematic evidence, that they understand why it is not the best idea to refer someone, who has never been treated for stuttering, to the famous "Flowery Olfactory Therapy", etc. Consumers should not only be able to make a rational choice between therapy forms, but similarly ask for high quality and continuous information about progress during therapy.
Within the German self-help association Ulrich Natke, Konrad Schaefers, and Andreas Starke have already undertaken first steps along these lines. Science-related topics are presented at the annual membership meeting and researchers are invited to write a column about scientific issues in the journal of the "Bundesvereinigung Stotterer-Selbsthilfe" (Kieselstein).
I hope that more consumers, researchers, clinicians and their associations join us in these efforts.
Quality standards for stuttering therapy
Self-help and consumer associations could promote and support research efforts more than they presently do by helping to develop and propagate quality standards for therapy and therapy effects. Without neglecting the difficulties in the development of such standards, it seems to be a solvable problem if consumers, clinicians and reasearchers actively cooperate to create a solution.
- Therapy effects and efficiency: There has been a lot of debate about possible aims of stuttering therapies. From these discussions I would drew at least two consequences. The first consequence is that - whatever other goals a stuttering therapy may aim at - an increase in speech fluency should be an indispensable part of every stuttering therapy. We know that spontaneous fluency is not a realistic goal for all speakers. Alternative fluency goals are controlled fluency which speakers can only maintain by attentively controlling their speech, and acceptable stuttering which also requires an active monitoring to maintain an acceptable form of stuttering.
Client information: It is of course the speaker's right to speak as fluently or disfluently as she likes. If a speaker or the parents of a stuttering child decide to have speech therapy and improve their own speech fluency or that of their child then they need information about available treatment options. Professional stuttering therapies as a paid services must therefore offer valid and objective information about their fluency outcomes (spontaneous fluency, controlled fluency, acceptable stuttering) and provide a documentation about the extent to which a sample of clients achieved these outcomes. In addition, the amount of time should be estimated that clients must invest in order to reach fluency goals.
- Process-related information: In addition to the information about therapy effects and efficiency, continuous information about individual progress during therapy is another relevant quality characteristic. Therapy theory has almost exclusively analysed the motivational effects of process-related information. However, on the background of such continuous information during therapy, consumers can also make informed decisions about the continuation of therapy. Further process-related quality standards are whether probe sessions are offered to the clients and how flexible therapy sessions can be adapted to the client's temporal constraints.
- Consequences for consumer organizations: I wish that consumer organizations would be more reluctant to offer and promote therapy materials that do not meet quality standards.
The British Stammering Association Research Committee by Tom Weidig
I introduce the BSA research committee, its activities, and its so-far most prominent project, the BSA Vacation Scholarship Scheme. We hope, that our efforts and success will encourage other national associations to create research committees themselves or engage in similar projects. We are in contact with the other associations and their research representatives to discuss how consumer associations can support research and researchers. To this aim, we all had a meeting in Montreal in August 2003. I hope Scott’s Hans-Georg’s, and my papers for ISAD are further contributing towards this important debate.
- The research committee:
In the past, the British Stammering Association has admittedly been rather passive in promoting research or researchers. We only had ad-hoc contact with researchers, no expertise in research and were a very passive rather than active player in respect to research. However, the BSA is the accepted voice for people who stammer in the UK. It is a stable and centrally run organisation with nine permanent members of staff and an office in London. We have an extensive website, lots of information, contacts and fund raising experience, etc. Therefore, in 2001, the board of trustees took the strategic decision to be more pro-active, and has supported the creation of a research committee.
Its aims are:
- “To be actively involved in all activities relating to research with the objective of promoting high quality standards”.
- “To be pro-actively engaged in stammering research and provide a gateway between research and the general public.” “To advise BSA trustees on the quality of external research.”
The BSA RC members are from the BSA, the speech and language therapy and social sciences community, and the scientific community. Thus, the BSA RC brings researchers from different areas together and acts as an information exchange centre. As the BSA is neutral and does not endorse a specific therapy, and the members of the research committee are from different research areas, the RC should be perceived to be neutral, too. Most members have done PhD research or are actively involved in research. The members are: Dr. Tom Weidig (chair, ex-BSA trustee, PhD sciences), Prof. James Thornton (vice-chair, BSA trustee, academic) Colin Marsh (BSA trustee), Velda Osborne (BSA trustee, senior statistician), Norbert Lieckfeldt (BSA Chief Executive), Rosemarie Hayhow (SLT-researcher), Dr. Trudy Stewart (SLT-researcher), Dr. Rosemary Sage (SLT-lecturer in education), Prof. Peter Howell (professor in psychology), and Dr. Robin Lickley (lecturer in speech science).
- Its activities
The BSA RC meets every 3-4 months, and interacts via email. The meetings involve information sharing (on BSA activities and plans, and conferences), discussing and evaluating research proposals, and organising projects.
We now have a research page on the BSA website: (http://www.stammering.org/research.html) . Researchers gave talks at the BSA conferences or wrote articles for the BSA magazine Speaking Out. At the coming BSA conference, we will have a roundtable on research. We put notices from departments looking for volunteers on our website, newsletters, and sometimes mailing list. However, researchers report to us, that it is still hard for them to get volunteers to contact them.
We are currently looking into lobbying institutions for a greater allocation of research grants to stammering. We have successfully finished our first "big" project i.e. creation of a vacation scholarship scheme for undergraduates in their pre-final year. The idea is to encourage young talented students to do a PhD in stammering. This year, we have awarded four such scholarships, which allow them to conduct research over the summer holidays.
The BSA itself is involved in several projects, but they are on more practical issues like provision of speech and language therapy services, disability act etc. and they are an important source of income for the BSA. We do support research projects as much as we can i.e. we put notices on the website and newsletter. However, the researchers come to us for help rather than the opposite.
- Major project: BSA Vacation Scholarship Scheme
Background
This year the Research Committee of the British Stammering Association has decided to launch a Vacation Scholarship scheme to provide students with the opportunity to propose and execute a research project related to stammering. The project should help the BSA to fulfill its vision of a world that understands stammering. The immediate aim of the scheme is to assist those who wish to conduct research into stammering, or related areas, in their future careers. The long-term aim is to increase awareness of the importance of research amongst professionals working with people wanting to improve their fluency.
Applications are invited from departments of speech language, psychology, medicine, social science or any allied disciplines, for students to work on a research project during the summer vacation. All applications should be submitted by the sponsoring department on the student's behalf.
Eligibility
Applicants should be either undergraduates or students taking a degree in speech language therapy as a post-graduate course. In either case they must have completed at least a year's study of their course but should not be in their final year. They should be registered for a relevant degree at a university within the UK or the Republic of Ireland. There should be only one application per candidate and only one per supervisor. Scholarships are not available to complete projects that are part of the normal degree course or for students wishing to undertake research in laboratories outside the UK or the Republic of Ireland. They are not transferable.
There is flexibility over the course year in which the research may be undertaken due to the wide range of degree courses that are eligible. Applications should include evidence that the necessary skills have been acquired, either as part of the current degree or a previous qualification.
Remuneration Available
Scholarships are available for up to eight weeks work and currently carry a stipend of £165 per week. Research expenses will not be paid.
