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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. Participant Pool?. Convenience Sampling. The Challenge.

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casting a wider net increasing participation of underrepresented groups in research

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

the challenge
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.

life span health disparities
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.

life span health disparities1
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.

life span health disparities2
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.

life span health disparities3
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.

the solution
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
health disparities a societal problem
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.

scientific imperative
Scientific Imperative
  • Discovery
  • Expanding the knowledge base
  • Theory building
  • Integrating research, theory, and intervention
catalysts for casting a wider net
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
barriers to volunteer participation
Barriers to Volunteer Participation
  • mistrust and suspicion
  • lack of perceived agency
  • lack of knowledge
  • cultural alienation
best practices
Best Practices
  • Developing relationship, building trust
  • Community buy-in through collaboration
  • Mutual educational efforts
adapting an intercultural approach to research participant interaction
Adapting an Intercultural Approachto Research-Participant Interaction

The Goal: Third-culture building

Third Culture

Culture A

Culture B

adapting an intercultural approach
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
adapting an intercultural approach1
Adapting an Intercultural Approach

Building a “third culture” through Familiarization

  • Getting to know the community
    • Its needs
    • Its values
    • Its fears
  • Mutual disclosure
adapting an intercultural approach2
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
an intercultural approach to increasing research participation
An Intercultural Approachto Increasing Research Participation

The Goal: Third-culture building

A Diverse Pool of

Research

Volunteers

Culture A

Culture B

thank you
Thank You!

Joyce L. Harris, Ph.D., CCC-SLP

The University of Texas at Austin

[email protected]

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