The National Stuttering Association (NSA) Research Committee

About the presenters: J. Scott Yaruss, PhD, University of Pittsburgh. NSA board member, chair of the the NSA Research Committee (NSARC).

Anthony J. Caruso, PhD, Kent State University. 2001 Keynote speaker for the NSA conference in Boston, MA.

Gerald Maguire, MD, University of California, Irvine. Newest member of the NSARC, coordinator for "professional corner" for Letting Go, and 1997 Keynote speaker for NSA conference in Buffalo.

James A. McClure, APR, is an accredited public relations consultant and former public opinion research director. He is the co-founder of the NSA's Chicagoland chapter and a member of the NSA's board of directors and chair of the public relations committee.

Lawrence F. Molt, PhD, Auburn University. 1999 Keynote speaker for the NSA conference in Tacoma, WA.

Robert W. Quesal, PhD, Western Illinois University. Coordinator for NSA's new publication, "CARE," and 1998 Keynote speaker for the NSA conference in Atlanta, GA.

Lee Reeves, DVM, National Stuttering Association. NSA Chairman of the Board of Directors.

Kenneth O. St. Louis, PhD, West Virginia University, is the newest member of the National Stuttering Association's Research Committee and also a member of the steering committee for the NSA's upcoming research symposium to be held in June, 2002.

The National Stuttering Association (NSA)
Research Committee

by J. Scott Yaruss (chair), Anthony J. Caruso, Fred Lewis, Gerald Maguire,
James A. McClure, Lawrence F. Molt, Robert W. Quesal, and Lee Reeves

Overview

What is the NSA Research Committee (NSARC)?

The NSARC, created in 1998, is a committee consisting of people who stutter and speech-language pathologists who specialize in stuttering treatment and research.

What is the purpose of the NSARC?

The purpose of the NSARC is to promote research on stuttering, particularly research on the role of support groups in the recovery process. The NSARC mission is to facilitate interactions between the NSA Membership and scientists conducting research on stuttering. The NSARC also conducts research on issues of importance to people who stutter, such as improving treatment techniques and advocating for better training for speech-language pathologists.

NSA Position Statement on Research Involving NSA Sponsored Meetings and NSA Members

The NSA membership provides a unique resource for scientists seeking to conduct research on the many facets of stuttering. Recognizing this, the NSA Board of Directors has issued the following guidelines the use of the NSA organization,
members, and resources in research:

That the first and foremost function of the NSA is to provide support and education for people who stutter and their families. Research activities must in no way interfere with this function. Research activities that would possibly serve to alienate NSA members and/or their family members from the organization, or that would result in an apparent breach of trust between the NSA organization and its members, or that would reflect negatively upon the members will not be approved/authorized by the National Stuttering Association.
That priority in research activities involving the NSA be given to research that may validate the purpose and activities of the organization, and/or that would assist NSA leadership and members in decision making concerning NSA objectives and activities.
That investigators wishing to utilize the NSA organization, members, and/or
resources in research submit a formal research proposal to the NSA national office for review and approval. Use of the NSA organization, members, and/or resources in research requires NSA national office approval.
Given the unique relationship between the NSA national office and its membership-wide initiatives and functions, and the local NSA chapters, the NSA national office recognizes the right of chapters to make their own decisions regarding participation in research activities at the local level; however, to protect the integrity and reputation of the NSA, the national organization requests that chapters follow NSA Research Guidelines. The NSA national office will provide to chapters any and all assistance used in the national research review process.

Review and Approval Process for Researchers
Interested in Partnering with the NSA

Applicants wishing to conduct research involving the NSA organization, members, and/or resources must submit a description of the proposed research project to the NSA national office This should include:

- purpose
- how NSA will be involved (including location, number of expected participants, and how participants will be recruited)
- potential benefits to NSA & participants
- potential risks to NSA & participants
- background on all investigators (place of employment, position, education and training; prior research experience; potential benefit of this research to the investigator)
- timeline (when research is to be conducted, and its duration)
IRB approval:The NSA review process follows the basic process for
review by University Institutional Review Boards (IRB). Investigators
located at institutions with a federally accredited IRB should submit their research proposal to their own IRB for review and approval first. While IRB approval does not guarantee NSA approval, NSA will not approve proposals that have not received IRB approval. If the sponsoring institution requires documented approval from the NSA before granting final IRB approval, NSA will review the IRB application and recommendations, then decide whether to provide approval for the project.

(For investigators who do not have access to an institutional review board, identical information utilized in standard IRB applications must be provided to the NSA Research Committee for approval. This includes information pertaining to the purpose of the research; potential benefits to participants; potential risks to participants; research protocol/procedures, including samples of all tests/instruments that will be utilized; informed consent procedures, including sample informed consent form; and how confidentiality of research participants will be protected. Contact the NSA national office for an application form.)

The NSA National Office will review the application and forward it to the Research Committee for review and recommendations. Final decisions regarding: (a) approval, (b) disapproval, or (c) return of the application to the investigator for additional information or modification and resubmission for review, will rest with the NSA executive officers.
Changes may not be made in the approved research procedures without approval from the NSA national office.
Investigators should forward a copy of their final report, or a summary of outcome of the research project to the NSA national office. NSA requests that NSA's role be acknowledged in any presentations or publications stemming from the research project.

Research Projects Approved by the NSARC

The NSARC regularly receives requests from scientists seeking to recruit NSA members for research. Following is a list of the projects we have reviewed and approved to date:

Illinois International Genetics of Stuttering Project
Nicoline Ambrose, Ph.D., University of Illinois
Measurement of pH and testosterone as a biological indicator of stuttering
Kristen Chapin, Wooster College
The adaptation effect in bilingual people who stutter: An examination of the oral-motor rehearsal theory
David Evans, University of Maine
Application of stages of change to stuttering
Jennifer Floyd, University of Iowa
Impact of stuttering on employment and job performance
Joe Klein, University of South Alabama
The influence of speech gesture priming on stuttering frequency
Greg Snyder, East Carolina University
Stuttering and employment survey
Billy Stewart, Central Michigan University

Approval from the NSARC means that these researchers may recruit study participants through the NSA. This may involve submitting descriptions of their studies for publication in Letting Go, placing a summary of the study on the website with information about how to participate in the studies, or working with local chapter leaders to attend chapter meetings to describe the studies and recruit participants.

We encourage you to participate in these research projects if you are interested. It is ALWAYS up to you whether you choose to participate, and you can always withdraw at any time without consequence.

If, at any time, NSA Members have concerns about the research projects, the researchers, or the NSA's role in facilitating research, they should contact Dr. J. Scott Yaruss, Chair of the NSARC and member of the NSA Board of Directors, at (412) 383-6538 or mailto:jsyaruss@csd.pitt.edu.

Research Projects Conducted by Members of the NSARC

In addition to facilitating research conducted by other scientists, the NSARC has conducted research projects of its own. Following is a brief summary of two recent studies:

Speech Treatment and Support Group Experiences of NSA Members

Support groups are rapidly becoming an important part of the recovery process for many people who stutter, and it appears that a growing number of speech-language pathologists are encouraging their clients who stutter to participate in support groups. As support group participation increases, it is important to consider the effects of this participation in the same way that the outcomes of other components of treatment are assessed. This paper presents the first in a series of studies, conducted by the research committee of the National Stuttering Association (NSA), to evaluate the effects of support group participation for its membership. Respondents were 71 people who stutter who attended the 1999 NSA conference in Tacoma, WA and completed a detailed survey about their experiences in speech treatment and support groups. The majority of respondents had participated in treatment at several times during their lives, using a variety of treatment techniques, though few were in treatment at the time they completed the survey. Although respondents indicated that fluency shaping approaches were beneficial, those who had participated in fluency-shaping treatment were also likely to report that they had experienced a relapse of stuttering. A similar relationship was not found between relapse and participation in stuttering modification or combined treatments. Also, there was a strong positive correlation between respondents’ satisfaction with treatment and their judgments of clinicians’ competence, suggesting that improved training in fluency disorders for speech-language pathologists should lead to improved clinical service for people who stutter. Finally, those aspects of treatment which respondents found to be the most beneficial were the same as those aspects of support group participation that were most beneficial, namely, meeting other people who stutter, reducing their fear of stuttering, etc. Results will be used to provide a foundation for further evaluations of the benefits of support group participation for people who stutter.

NSA Members’ Opinions about Speech Treatment

As stuttering support groups grow popularity and visibility, it is increasingly important for speech-language pathologists (SLPs) to learn about support groups and the people who participate in support groups. This study involved a brief survey, completed by 200 randomly selected NSA members, about a variety of issues regarding speech treatment for people who stutter. Findings provide insights into the opinions NSA members have about the resources they would consider if they were interested in pursuing speech treatment for themselves or a family member and the views NSA members hold about speech-language professionals in different practice settings. Findings also highlight some areas in which the field of speech-language pathology can improve efforts to reach out to people who stutter.

August 17, 2001