st. louis et.al.

About the presenters: Kenneth O. St. Louis, co-founder of the International Fluency Association, has carried out research in the areas of stuttering and cluttering for 25 years. He has actively collaborated with researchers, including investigators from other countries, on several large projects, e.g., a special edition of the Journal of Fluency Disorders on cluttering. Bobbie Boyd Lubker is a certified speech-language pathologist with a doctoral degree in Public Health Epidemiology. Her publications focus on comparisons of epidemiologic and clinical research methods, principles of epidemiology applied to communication disorders, the changing epidemiology of child language disorders, and epidemiology as a necessary science for prevention. J. Scott Yaruss is an assistant professor at the University of Pittsburgh and Co-Director of the Stuttering Center of Western Pennsylvania. He teaches classes and workshops about stuttering and conducts research on the nature and treatment of stuttering. Recent research has focused on source factors contributing to disfluencies and documentation of treatment outcomes. Jaan Pill has founded or served in the Stuttering Association of Toronto, the Canadian Association for People Who Stutter, the International Stuttering Association, and the International Fluency Association on behalf of people who stutter. He is particularly active in media projects (print, radio, television interviews, and video documentaries). Charles C. Diggs, Director of State and Consumer Advocacy at ASHA, has developed numerous educational materials for people with communication disabilities and their families and regularly consults with national self-help groups for people with speech, language, or hearing disabilities. He has been an ASHA staff member for nearly 20 years.

International Project on Attitudes Toward Stuttering: Initial Planning and Status Report

by Kenneth O. St. Louis (WV, USA), Bobbie Boyd Lubker (NC, USA), J. Scott Yaruss (PA, USA), Jaan Pill (ON, CA), and Charles C. Diggs (MD, USA)

Abstract

Increasingly, initiatives are underway internationally to improve public acceptance and understanding of stuttering; yet, a reliable and valid measure of public beliefs and attitudes toward stuttering does not currently exist. Accordingly, authors will describe the ongoing process of developing such an instrument for an "International Project on Attitudes Toward Stuttering," focusing on issues, problems, and benefits associated with the endeavor.

Rationale

Accumulating evidence indicates that most nonstuttering individuals in Western society hold negative beliefs and attitudes about those who stutter. In many countries around the world, resources have been devoted to (1) educating the public about stuttering and (2) changing public reactions to stuttering. These initiatives have come from individuals in several professions; intervention programs; and private, self-help, professional, or government organizations. Collaboration on international efforts is increasing.

The supposition generally is that when members of the public have accurate information about stuttering, they will have more positive behaviors and attitudes toward stuttering, and they will share their new found information with others who, in turn, will change their behaviors. Those who stutter seem also to assume that accurate information will be sought and utilized by stakeholders such as other people who stutter and parents in order to decrease negative life impacts of stuttering and to motivate pursuit of effective treatment.

In spite of these public education efforts, no measures have been widely used to examine public beliefs and opinions or to measure change in beliefs as an outcome of educational efforts. Three important implications of this state of affairs are evident.

First, from existing data it is difficult to provide any objective information that such initiatives have achieved their desired effects.
Second, it is impossible to determine which communities, regions, or societies are more or less knowledgeable about stuttering or punitive toward individuals who stutter.
Third, investigators have not ascertained whether or not some societies, by virtue of behaviors, attitudes, or reactions, tend to stigmatize persons who stutter more than other societies, either in association with -- or independent of -- their knowledge and understanding of stuttering.

Status Report of an "International Project on Attitudes Toward Stuttering"

This brief report summarizes initial stages and long range planning for a collaborative international initiative (ÒInternational Project on Attitudes Toward StutteringÓ [IPATS]). Long and short term goals of IPATS include:

Designing and piloting an instrument that (1) accurately measures public beliefs and opinions about the nature of stuttering, (2) measures such changes by repeated measures of study and control groups, (3) conforms to accepted standards of reliability and validity, and (4) is relatively short and simple to administer.
Developing an instrument that can be translated into different languages permitting use all around the world.
Field testing the prototype in selected countries where anecdotal data suggest that differences in beliefs and opinions may be expected.
Making recommendations for systematic standardization.
Disseminating information from field testing and standardization procedures.

A Design Task Force first met in Morgantown, WV from April 9 - 11, 1999. Currently, Task Force members are reviewing relevant literature on public attitudes relating to stuttering and other conditions; survey methodologies; and the design, distribution, and difficulties with scientific rigor inherent in developing a mulit-language, multi-nation instrument employing principles of survey research.

A prototype survey, tentatively labeled the "Comparative Attitude Survey of Personal Attributes" (CASPA), has been drafted in English. It is a paper-and pencil instrument designed to obtain primary data on public opinion toward stuttering and to allow comparisons with other familiar conditions. (The CASPA will cover attitudes, defined here to include beliefs, feelings, and actions.) It is currently being field tested around the USA and Canada. Results and relevant issues will be presented at the upcoming convention of the American Speech-Language-Hearing Association in San Francisco in November, 1999.

Thereafter, the Task Force will complete the next phase of the pilot effort: design and implement translation procedures in 15 selected countries, recruit ÒpartnersÓ in research sites in each country, explore country-specific sample representativeness, and seek the availability of population data in each country against which the respondent samples can be compared. Subsequent steps will include data reduction and analyses. Application to present the pilot data will be submitted to the 3rd World Congress on Fluency Disorders to be held in Nyborg, Denmark, in August, 2000.

After pilot data have been analyzed, the CASPA will be reevaluated, hopefully into its final form. The Task Force again will make plans to translate and field test the instrument in a number of places around the world. This process will require approximately three years to complete. Once finished, translated versions of will be made available to any responsible persons or groups for use in assessing public attitudes toward stuttering.

For More Information, Please Contact: Kenneth O. St. Louis
Department of Speech Pathology and Audiology
805 Allen Hall, PO Box 6122
West Virginia University
Morgantown, WV 26506-6122
(304) 293-4242, Ext. 1843
FAX: (304) 293-7565
E-mail: kstlouis@wvu.edu

August 25, 1999