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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


Participant pool
Participant Pool? Underrepresented Groups in Research


Convenience sampling
Convenience Sampling Underrepresented Groups in Research


The challenge
The Challenge Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Underrepresented Groups in Research

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? Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Underrepresented Groups in Research

  • Discovery

  • Expanding the knowledge base

  • Theory building

  • Integrating research, theory, and intervention


Catalysts for casting a wider net
Catalysts for Casting a Wider Net Underrepresented Groups in Research

  • 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 Underrepresented Groups in Research

  • mistrust and suspicion

  • lack of perceived agency

  • lack of knowledge

  • cultural alienation


Best practices
Best Practices Underrepresented Groups in Research

  • Developing relationship, building trust

  • Community buy-in through collaboration

  • Mutual educational efforts


Adapting an intercultural approach to research participant interaction
Adapting an Intercultural Approach Underrepresented Groups in Research to Research-Participant Interaction

The Goal: Third-culture building

Third Culture

Culture A

Culture B


Adapting an intercultural approach
Adapting an Intercultural Approach Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Underrepresented Groups in Research

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 Approach Underrepresented Groups in Research to Increasing Research Participation

The Goal: Third-culture building

A Diverse Pool of

Research

Volunteers

Culture A

Culture B


Convenience sampling1
Convenience Sampling Underrepresented Groups in Research


Casting a wider net
Casting a Wider Net Underrepresented Groups in Research


Thank you
Thank You! Underrepresented Groups in Research

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

The University of Texas at Austin

[email protected]


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