conducting disability research with people from diversity ethnic groups: challenges and...

Conducting Disability Research with People from Diversity Ethnic

Groups: Challenges and Opportunities

Fabricio E. Balcazar, Ph.D. Department of Disability and Human Development

University of Illinois at Chicago

Copyright © Department of Disability and Human Development University of Illinois at Chicago. Center for Capacity Building for Minorities with Disabilities Research. Project funded by the US Department of Education. National Institute on Disability and

Rehabilitation Research, Award # H133A040007)

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Presentation Overview1. Researcher-identified challenges

and opportunities

2. Recommendations for Research and Practice

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What the literature indicates:Lack of access & poor outcomes

1. African American, Latino,

and Native American

individuals

with disabilities

often have

poor access to disability

and health-related

services

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2. Minority individuals with disabilities are less likely toachieve positive independent and rehabilitation outcomes when compared with whites

Obstacles include:

• Lack of affordable services• Providers who do not speak their language and/or understand the cultural differences • Limited knowledge about community resources and services • Cultural mistrust• Limited family and community support

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Need for Research• The Rehabilitation Act of 1973 (P.L. 93-

112) and amendments have led the Federal Government to increasingly promote and fund research and services involving minorities with disabilities.

• Researchers often claim that it is hard to recruit minorities with disabilities.

• There are few minority researchers.• Yet there has been little to no research on

the specific challenges experienced by researchers in recruiting and involving ethnic minorities with disabilities in research activities.

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Our Study

Participants and Procedure

•79 NIDRR-funded researchers

•Two stages of recruitment

•NIDRR Section 21 Conference attendees (n=23)

• Mail & electronic mail survey sent to 115 center directors

(n=56; 49% response rate)

Instrument

• Survey about experiences with recruitment, research and dissemination with minorities with disabilities

•20 Likert-type items

•2 open-ended questions

•2 Yes/No questions

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Respondents

• Director or Research Coordinator (66%)

• Professor (14%)

• Other professional (5%)

Research with Minorities

• 72% conduct research with minorities with disabilities• African Americans (54%)• Latinos (54%)• Asian Americans (42%)• Native Americans (40%)• Pacific Islanders (29%)

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• 60% of respondents conduct research with more than one ethnic minority group

African American

Latino Asian American

Native American

Pacific Islander

23% Yes Yes Yes Yes Yes

10% Yes Yes

8% Yes Yes Yes

4% Yes Yes Yes Yes

Research Team Diversity

At Least One Researcher

Team Member Percent

African American 34

Latino 35

Asian American 30

Native American 11

Pacific Islander 4

Caucasians Only 45

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Centers that provided ethnic data on staff and participants (n=41)

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Races Percent Matches

Latinos 80 Staff & Participants

African American

78 Staff & Participants

Asian 59 Staff & Participants

Pacific Islanders

20 Staff & Participants

Native American

17 Staff & Participants

Centers that reported working with all ethnic groups (n=18)

Races Percentage Matches

All 61 Incomplete

All 39 None

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Most Significant Challenges*Recruitment: • Challenges related to recruiting and

motivating minorities with disabilities to participate in research • Establishing contacts and building trust

in ethnic minority communities • Motivating participants to stay involved

and successfully complete follow up contacts

*Means greater than 3.0 “to some extent” and more than 10% of respondents indicated a “very great challenge”

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Most Significant ChallengesQualitative Responses

Research:• Finding research protocols, surveys and

questionnaires developed or adapted for minorities with disabilities.

• Ensuring that the focus and methods of the research were relevant to their research participants with disabilities who were ethnic minorities.

• Recruiting research team members who are ethnic minorities or ethnic minorities with disabilities.

Research: (continued)

• Findings someone who can translate materials into the preferred language (other than English) of research participants. • The cost of translating materials into other

languages, including Braille.

• Having insufficient funding to provide the support that participants need to be involved in research activities (e.g., transportation)

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Most Significant ChallengesQualitative Responses

Dissemination:

• Disseminating findings to minorities with disabilities in a language other than English.

• Using dissemination outlets that reach minorities with disabilities and those serving them.

• Translating research findings into practice

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Least Significant Challenges*

Recruitment• Identifying social and community settings

attended by minorities with disabilities

Research• Including the views of minorities with

disabilities when conducting research and outreach

Dissemination• Disseminating materials about their

project*<3% of respondents reported challenges

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Satisfaction • Participants reported being between

“neutral” and “satisfied” with their:

• outreach to minorities with disabilities (X=3.19, SD=1.09),

• culturally competent research (X=3.47, SD=.84),

• efforts to disseminate information and research findings to minorities with disabilities (X=3.09, SD=.94)

• what they could offer to minorities with disabilities (X=3.28, SD=.99).

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Significant Resources or SupportsQualitative Responses

• Relationships with key community contacts • Leaders within minority communities including

tribal governments and translators • Relationships with organizations

• Independent living centers, community-based organizations, churches, schools and vocational rehabilitation offices

• Federal initiatives to increase and improve research with minorities with disabilities• NIDRR, the National Institute of Health, the

Rehabilitation Services Administration and the National Science Foundation

Resources or Supports (continued)

• Research partnerships within and across universities • Students with disabilities from minority

backgrounds• Ethnic minority center [in-house] staff• University offices related to minorities• Historically Black Colleges and

Universities; Hispanic Colleges• Research partners from large urban areas

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Researchers’ Need for Cultural Competence Training

• 40% of NIDRR researchers reported needing cultural competence training for their staff and themselves • 13% believe that there is always an

ongoing need for training• 10% want training to be tailored to their

program and address research• 8% believe their staff lacks diversity or

experience• 6% reported that they already provide

ongoing cultural competence training to their staff

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Recommendations for outreach, research and dissemination• Partnerships with universities located in

large urban cities and/or minority institutions of higher education.

• Partnerships with CBOs serving minorities with disabilities.

• Integrate outreach with local community events.

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Recommendations (continued)

• Recruit research team members who are ethnic minorities with disabilities from the target community.

• Train community leaders.

• Support participants’ needs that facilitate participation

• Use Participatory Research approaches

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Recommendations (continued)

• The National Center for Dissemination of Disability Research is working to create a forum where researchers can discuss strategies that work, learn about best practices, and about successful ways to increase minority participation in researcher efforts

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Recommendations (continued)

• Future research could examine types of initiatives and programs that agencies like ADD and NIDRR may introduce in order to increase collaboration, and promote successful involvement of ethnic minorities with disabilities in research activities among grantees.

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How are we at the Center examining issues of recruitment, research and dissemination?

• Development of standards for culturally competent and linguistically appropriate research (Glen Fujiura).

• Racial identity and cultural mistrust as psychological cultural correlates of rehabilitation success (Reginald Alston).

• Intersection of disability and race in self-views of Latinos and African Americans (Carol Gill).

• Disability determination and provision of vocational rehabilitation services (Brigida Hernandez).

• Building CBOs capacity for evaluating outcomes (Yolanda Suarez-Balcazar & Tina Taylor-Ritzler)

• Training service providers, practitioners and researchers on cultural competence (Fabricio Balcazar & Celestine Willis)