2003 IFA Congress: Montreal, Canada

How Can Consumer Associations Support Research And Researchers?

Tom Weidig1 and J. Scott Yaruss2
1British Stammering Association, 15 Old Ford Road, London E2 9PJ, United Kingdom.
2Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower; Pittsburgh PA 15260, USA

SUMMARY

The British Stammering Association (in the UK) and the National Stuttering Association (in the USA), among other consumer organizations, have created research committees to support stuttering research. These organizations sought to gather representatives from various consumer associations around the world to exchange ideas and explore opportunities for collaboration. This paper summarizes the interactions among these organizations, both before and after the face-to-face meeting at the IFA World Congress, about issues relevant to stuttering research. Key activities for collaboration that were discussed included the creation of a mailing list of all research representatives, establishment of an electronic information archive on stuttering research, and expansion of a dialogue between organizations regarding lobbying and fundraising experiences.

  1. Introduction
Both the British Stammering Association (in the UK) and the National Stuttering Association (in the USA) have established research committees to support stuttering research. During an information exchange between the present authors, it was decided that we should gather representatives from different consumer associations around the world to exchange ideas and explore possible avenues of collaboration. Dr. Tom Weidig is chair of the research committee of the British Stammering Association and its initiator; Dr. J. Scott Yaruss is chair of the US National Stuttering Association’s Research Committee and is a member of its board of directors.

The authors gathered a panel of representatives on research matters from a wide variety of national and international stuttering associations. Panel members were Prof. Hans-Georg Bosshardt (representing a group of researchers linked to the German self-help association), Dr. Moussa Dao (Head of the National Stuttering Association of Burkina Faso), Judith Eckardt (International Stuttering Association, representative on research matters), Jaan Pill (the Canadian Association of People who Stutter, representative on research matters), Michael Sugarman (representing the IFA), Per Knudsen (representing research matters for the Association for Stutterers in Denmark.)

This paper summarizes interactions among these individuals prior to and during the IFA meeting in Montreal in August, 2003. Specifically, before the workshop at the IFA congress, the panel engaged in an extensive email discussion in response to a set of five questions about how research issues are dealt with within the associations. Answers from this discussion form the first part of the article. At the IFA congress, the workshop was attended by panel members, and an opportunity was provided for participants to voice their opinions about stuttering research. The topics and a summary of the pre-workshop email discussion are found in the second part of the paper. (A more detailed document of the pre-workshop email discussion is available upon request. Please Contact the authors.)

How consumer associations deal with research issues

Prior to the meeting, representatives of the stuttering support associations were interviewed, via email, to collect basic information about the how their associations supported research. Specific questions included: (a) “Does your association have a formal research committee?” (b) “What does your association do in terms of support for research(ers)?” (c) “Is your association involved in internal or external projects?” (d) “How does your association communicate research to your members?” and (e) “Does your association help researchers identify participants for research projects?” Following are responses provided by each of the participants. (Note that the answers were slightly edited for consistency, though they largely represent the direct responses provided by the participants.)

  1. British Stammering Association (BSA)
Does your association have a formal research committee?

The BSA created a research committee (RC) in Autumn 2001, to (a) advise the trustees on research issues, (b) promote research into stammering, and (c) communicate about research to BSA members. Aims of the BSARC 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 BSARC meets every 3-4 months and has members from the BSA and the speech-language therapy, social sciences, and scientific communities. Most members have been actively involved in research. Current members include: Dr. Tom Weidig (chair, ex-BSA trustee), 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).

What does your association do in terms of support. for research(ers)?

In the past, the BSA has admittedly been rather passive in promoting research or researchers. In 2001, the board of trustees took the strategic decision to be more pro-active, and has supported the creation of a RC. The RC’s “consolidation phase” is now over, and 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 pursue a PhD in stammering. This year, we have awarded four such scholarships, which allow them to conduct research over the summer holidays. We are currently looking into lobbying institutions for a greater allocation of research grants, an on-line research discussion, and others.

Is your association involved in internal or external projects?

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, e.g., we put notices on the website and newsletter. However, the researchers come to us for help rather than the opposite. Unfortunately, there is not so much research, especially fundamental research like brain or gene research, being done in the UK.

How does your association communicate research to your members? We now have a research page on our website (www.stammering.org/research.html). Researchers gave talks at the BSA conferences or wrote articles for the BSA magazine Speaking Out. At the next conference, we will have a roundtable on research.

Does your association help researchers identify participants for research projects? 9 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.

  1. U.S. National Stuttering Association (N SA)
Does your association have a formal research committee?

The NSARC was formed in 1999 by chairman Lee Reeves. The committee consists of three “consumer” members (who may or may not be researchers), 3 researcher members (who may or may not be people who stutter), and a chair representing the board of directors. The N SARC meets during annual conferences and other meetings, and maintains regular contact via email.

What does your association do in terms of support for research(ers)?

The NSARC’s primary function is to facilitate interactions between NSA members and researchers interested in partnering with the N SA. The NSARC does not provide funding; however, it has reviewed more than 20 submitted projects. Reviews ensure compliance with human subjects protection. Once a project is approved, the NSARC helps researchers contact chapter leaders or members, through mailings or meetings (support group meetings or annual conference). The NSARC also helps to disseminate of findings to the membership or advertises for ongoing studies.

Is your association involved in internal or external projects?

The NSA is primarily involved in external projects, though the committee has conducted two internal projects, (several members of the committee are researchers, so they worked together on some projects).

How does your association communicate research to your members? The NSA has a section on its website (www.WeStutter.org) that describes ongoing research projects.

Does your association help researchers identify participants for research projects?

Part of the proposal process’ involves asking the researcher how the NSA can be helpful with subject recruitment. The committee then tries to serve that need through advertisement, insert in the monthly newsletter, word of mouth at chapter meetings, email to members, mailings, etc.

  1. PEVOS - German research committee
Does your association have a formal research committee?

Since 1986, the Demosthenes Institute has provided the institutional background for all research-related work within the German self-help association (Bundesvereinigung Stotterer-Selbsthilfe). The members of this institute meet several times per year 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 treatment settings. The results of PEVOS were presented in a session at the 2003 IFA World Congress.

What does your association do for research(ers)? / Is your association involved in research projects?

The creation of the PEVOS project was one of the major research-oriented activities of the Demosthenes Institute. The association has so far only taken few other initiatives to actively support research. For example, in one recent project the emotional stress of stuttering school children has been investigated.

How do your association communicate research to your members? Through the home page of the Demosthenes Institute: http://www.demosthenes-institut.de/

Does your association 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 the “Kieselstein” which is the official journal of the Bundesvereinigung St0tterer- Selbsthilfe.

  1. Burkina Faso Stuttering Association (ACB)
Does your association have a formal research committee? “The ACB is a young association. In our part of world, there is no research in the field of stuttering. So, research is important for our association. We have a research committee led by myself (a biological pharmacist ) and 2 other members. We work with a university professor as consultant."

What does your association do in terms of support for research(ers)?

“We do not provide funding because we don’t have it. Our objective is to support surveys to get data. We will also facilitate researchers who would like to do studies comparing different cultures.”

Is your association involved in internal or external projects?

“We did the pilot phase of our first study. It is about the knowledge and therapeutic methods for stuttering by African traditional healers. We will probably take part at one international survey about stuttering.”

How does your association communicate research to your members? “During meetings, as our country is small, it is very easy to contact our members.”

Does your association help researchers identify participants for research project? . “Yes. We are willing to help foreign researchers to do research with our members.”

  1. Association for Stutterers in Denmark (FSD)
Does your association have a formal research committee?

The FSD does not have a formal RC, but one member of the Board is responsible for issues related to research.

What does your association do in terms of support for research(ers)? The FSD has financially supported some researchers and projects during the last ten year.

Is your association involved in internal or external projects?

The FSD is not involved in external projects (except from partly funding a few projects). But, the Chair of the FSD, Hermann Christmann, runs a project - in co-operation with treatment sites in seven municipalities of Denmark - with the purpose of developing models for establishing a service for children and their parents. This project is more systematic and system-based than today. The project, which is a four year, project, is supported financially by the Danish Ministry of Social Affair. This is not fundamental research, but a project of high interest for children who stutter and their parents living in small municipalities in Denmark.

How does your association communicate research to your members? The FSD bimonthly magazine “Udtryk” sometimes refer to research, but not very often.

Does your association help researchers identify participants for research project?

Some years ago, when the Stuttering Information Center of Denmark did a project about stuttering and the labour-market, the FSD helped with getting in touch with Stutterers who had different experiences with their jobs and with applying for a job. Last year, the FSD again helped the Stuttering Information Center of Denmark to contact stutterers who had any experiences with alternative treatment for stuttering.

  1. International Fluency Association (IFA)
Does your association have a formal research committee? No.

What does your association do in terms of support for research(ers)?

The major contribution to research comprises congress organisation (every three years), and the publication of a journal which provides the widest range of research articles on fluency and stuttering, as well as philosophical and review articles and letters.

Is your association involved in internal or external projects? No.

How do your association communicate research to your members? Through journals and congresses.

Does your association help researchers identify participants for research projects? Not at the moment.

  1. Canadian Association for People Who Stutter (CAPS) & Internationals Stuttering Association (ISA)
Does your association have a formal research committee? “CAPS (Canadian Association for People Who Stutter) does not have a research committee. Nor does ISA.”

What does your association do in terms of support for research(ers)?

CAPS has become involved in external projects that we support. We have encouraged members to serve as research subjects for PET studies conducted by De Nil of the University of Toronto. CAPS and the ISA have also assisted with finding partners, in countries around the world, to join in the International Project on Attitudes Toward Stuttering (IPATS) project organized by Ken St. Louis of Morgantown, West Virginia (see Question #3 below). Some CAPS members have also been involved more directly in that research project (e.g. through serving as a member of the original task force, or through recruiting survey subjects). CAPS and the ISA have publicized the research-based anti-bullying program developed by Marilyn Langevin of the University of Alberta, in Edmonton.

Is your association involved in internal or external projects?

CAPS, along with the ISA, offers support for an external project, the IPATS. The project is aimed at getting more accurate information about precisely how stuttering is viewed in different countries. The project also seeks to develop a way of measuring changes in public attitudes in response to public education efforts aimed at changing public attitudes toward stuttering, and toward people who stutter.

How do your association communicate research to your members?

A column in our national newsletter features reports on recent research about stuttering. The column is written by Luc De Nil, a researcher at the University of Toronto who specializes in research on the neurology of stuttering. The CAPS newsletter has also offered summaries of media reviews featured in the Journal of Fluency Disorders. We post media reports on the CAPS email distribution list, which includes email accounts from around the world). The CAPS website features links to research-oriented websites. As well, some research is reported by researchers who offer workshops at CAPS national conferences, which are held every two years.

Does your association help researchers identify participants for research projects?

Yes (as described above). Both CAPS and_ISA have also publicized the work of the IPATS project, and in that process have helped to recruit partners and survey respondents for that project.

  1. Topics of discussion at the World Congress meeting
Using the preceding information as a starting point, the participants met at the World Congress to discuss possible options for collaboration among organizations. The following specific topics were highlighted during the meeting:

The definition of research and an appropriate research project for collaboration among Consumer organizations. It was agreed that an appropriate research project for this effort should follow some guidelines and be implemented in a systematic way, but should not be narrowed down to specific research areas. Research would be helped by informing members about scientific results. Based on the pre-meeting discussion, it appeared that associations have been active in this respect.

Evaluation of speech therapy. It was suggested that speech therapy should be judged by some scientific study or standard, which is established through a partnership between consumers and researchers. Most of the representatives present at the meeting welcomed evidence-based outcome studies, but were cautious to come to a conclusion that would limit research or treatment to a specific subset of available treatments based on presently available literature. Most associations do not endorse a specific therapy.

Role of associations. The role of the international versus the national associations was discussed, and everyone agreed to work together, both within their own countries and within umbrella organizations such as ISA.

Funding. Funding and lobbying for research was discussed at length; however, it was evident that there were no focused or concerted action by the associations ongoing at the time. Participants discussed the sources of funding and the complexity of obtaining funds. The fact that different countries have different means of funding charities and influencing government decisions.

Interactions between researchers and consumers. Participants discussed Ways in which researchers can interact with consumer associations, and all affirmed the importance of encouraging members to participate in research.

The “cost” of stuttering to society. .A potential study on the cost of stuttering to society was discussed, and participants affirmed that it was a worthwhile topic. Such an impact study could support the argument in a grant application that this disorder is worthy of study, not just because of the human cost to individuals who experience it, but also because of the larger cost to society due to lost or under employment, productivity, etc. Unfortunately, participants also acknowledged that the organizations present did not have the expertise to accomplish it. Several panel members agreed to pursue this idea further after the workshop.

Specific projects. Two specific projects were discussed: (a) a database on information on research and researchers, and (b) a framework in which to do world-wide surveys. Both projects were judged interesting, but it was agreed that implementation would involve a considerable amount of work and dedication. None of the representatives of the organizations were able to commit to such projects, though all agreed that it would be worthwhile to participate.

BSA Vacation Scholarship. The BSA explained their vacation scholarship scheme to encourage undergraduates to pursue a career in stuttering research or therapy. Other associations suggested that they might organise similar schemes.

Mailing List. It was agreed that a mailing list or web page could keep people informed about various Ways of fund raising. Newsletters or digest on research news for members were also discussed, and J aan Pill showed interest in pursuing this idea.

  1. Summary
In sum, the purpose of this discussion was to highlight Ways that consumer organizations around the world could support research on stuttering. Several ideas were reviewed, both in a pre- meeting email dialogue and in a face-to-face meeting held at the IFA World Congress. Although consumer organizations may be limited in what they can actually pursue due to funding, staffing, and other concerns, it was widely agreed that supporting research is a very worthwhile and viable activity for consumer organizations to consider. It is hoped that this meeting will pave the way for future meetings and, ultimately, direct collaboration among various organizations to support future research on stuttering.

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