Casting a Wider Net: Increasing Participation of Underrepresented Groups in Research

1. Casting a Wider Net: Increasing Participation of Underrepresented Groups in Research Lessons for Success March 27-29, 2008 Joyce L. Harris, Ph.D., CCC-SLP The University of Texas at Austin

2. Participant Pool?

3. Convenience Sampling

4. The Challenge Changing demographic patterns in the United States challenge the assumption that existing knowledge bases encompass universal truths for all segments of the population.

5. Life-Span Health Disparities Birth defects are highly associated with structural and developmental communication disorders, including hearing loss, feeding problems, and delays in speech and language acquisition.

6. Life-Span Health Disparities Inner-city environments, home to large concentrations of teen-agers and young adults from racially and ethnically diverse backgrounds, are the setting for disproportionately high incidences of traumatic brain injury, a major cause of chronic disability.

7. Life-Span Health Disparities Individuals with diabetes are at higher risk of developing complications, such as limb amputation or stroke, a leading cause of acquired neurogenic language disorders.

8. Life-Span Health Disparities Cardiovascular disease is a leading cause of stroke, which in turn is the leading cause of chronic disability, including aphasia and related disorders of communication. Older adults from culturally diverse backgrounds are disproportionately affected by communication-impairing diseases, resulting in dementia, dysphagia, and motor speech disorders.

9. The Solution? Research designed to: • uncover the factors that cause and maintain health disparity • develop accessible and acceptable services for persons from culturally diverse populations • provide outreach to underserved populations

10. Health Disparities: A Societal Problem Health disparities are a major concern of all Americans due to our fundamental belief that everyone, irrespective of gender, race, or heritage, is entitled to adequate levels of health information and clinical services.

11. Scientific Imperative • Discovery • Expanding the knowledge base • Theory building • Integrating research, theory, and intervention

12. Catalysts for Casting a Wider Net • rapidly increasing population diversity • need for normative referents for a diverse society • mandates from federal funding sources • emphasis on translational research

13. Barriers to Volunteer Participation • mistrust and suspicion • lack of perceived agency • lack of knowledge • cultural alienation

14. Best Practices • Developing relationship, building trust • Community buy-in through collaboration • Mutual educational efforts

15. Adapting an Intercultural Approachto Research-Participant Interaction The Goal: Third-culture building Third Culture Culture A Culture B

16. Adapting an Intercultural Approach Building a “third culture” through Bi-directional Education : • Transmission of information about the research community’s values and goals • Learning about the host culture’s values and beliefs

17. Adapting an Intercultural Approach Building a “third culture” through Familiarization • Getting to know the community • Its needs • Its values • Its fears • Mutual disclosure

18. Adapting an Intercultural Approach Building a third culture through Realization that: • intercultural competence is an elusive goal • there are multiple challenges surrounding intercultural encounters • the potential rewards outweigh the effort

19. An Intercultural Approachto Increasing Research Participation The Goal: Third-culture building A Diverse Pool of Research Volunteers Culture A Culture B

20. Convenience Sampling

21. Casting a Wider Net

22. Thank You! Joyce L. Harris, Ph.D., CCC-SLP The University of Texas at Austin joyceharris@mail.utexas.edu