Conducting disability research with people from diverse ethnic groups: challenges and opportunities

Journal of Rehabilitation,  Jan-March, 2008  by Tina Taylor-Ritzler,  Fabricio E. Balcaza,  Yolanda Suarez-Balcazar,  Edurne Garcia-Iriarte

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The most recent U.S. census data show that people from diverse ethnic and racial backgrounds represent about one third of the country s total population (30%). Migration patterns have contributed to increases in the cultural and linguistic diversity of the U.S., including the number of people with disabilities from different ethnic or cultural backgrounds. About 15.3% of all Latinos (who represent 12.55% of the population), 20% of African Americans (representing 12.06% of the population), 9.9% of Asians (representing 3.73% of the population), and 21.9% of Native Americans (representing 0.74% of the population) have disabilities compared to 19.7% for Whites (representing 69.13% of the population) (Fujiura, Yamaki & Czechowicz, 1998; U.S. Bureau of the Census, 2000).

African, Hispanic, Asian and Native American individuals with disabilities have been identified as generally underserved in terms of their overall access to social and public health services (Granados, Puwula, Berman, & Dowling, 2001; Wilson, 2005; Wilson & Senices, 2005). People from these ethnic backgrounds with disabilities typically receive fewer comprehensive services (see Belgrave & Walker, 1991; Zea, Quezada, & Belgrave, 1994) and experience significant obstacles in obtaining the services they need when compared with White consumers. Some of these obstacles include: lack of affordable health services, limited availability of bilingual health providers, limited knowledge about resources, and communication and cultural barriers to obtaining meaningful information and support from local agencies (Balcazar, 2001; Balcazar, Keys, & Suarez-Balcazar, 2001; Granados et al., 2001; Lillie-Blanton & Hudman, 2001; National Council on Disability, 1997; Suarez-Balcazar, 1998). As a result of these obstacles, individuals with disabilities from these ethnic groups are less likely to achieve positive independent living and rehabilitation outcomes. For example, research has found that African Americans have lower acceptance rates for vocational rehabilitation services, fewer successful employment closures, and less income than Whites who received similar services (Capella, 2002; Feist-Price, 1995; Herbert & Martinez, 1992; Olney & Kennedy, 2002; Wilson, 2002). The rehabilitation field needs a better understanding of the factors that limit access for people with disabilities from diverse ethnic backgrounds to vocational, health and other social services which in turn may lead to poor independent living and rehabilitation outcomes. The federal government promoted outreach to minorities with disabilities through the Rehabilitation Act of 1973 (P.L. 93-112) and its subsequent amendments; it has also promoted and funded research on issues and strategies that would help people from diverse ethnic groups with disabilities achieve positive outcomes (NIDRR, 2006). Despite these efforts, researchers have difficulty recruiting minorities with disabilities to their studies, but no research in our field has specifically documented why that is the case.

Several scholars in other fields have noted the challenges of conducting research with populations from diverse ethnic backgrounds. For example, Papadopoulus and Lees (2002) pointed out the difficulty of responding to the different needs, experiences, values and beliefs of ethnically diverse groups in health research. Porter and Villarruel (1993) argued that a unicultural perspective in research prevails, which assumes that the constructs and explanations of relationships between variables are universally applicable across different cultures. This bias, they propose, curtails researchers' awareness or use of alternative strategies in research, outreach, and dissemination. A similar point was raised by Leininger (1995) who proposed that without cultural awareness, researchers and service providers tend to impose their beliefs, values and patterns of behavior upon cultures other than their own, making it harder to recruit and sustain the participation of people from diverse ethnic groups in research.

Moreover, the rehabilitation field must improve the access and involvement of people from diverse ethnic groups in disability-specific research endeavors. For instance, Balcazar (2001) and Wright and Leung (1993) advocated that outreach, recruitment and dissemination research efforts should be culturally sensitive to the linguistic differences, communication styles, and cultural attributes of various minority groups. Likewise, a 1997 National Council on Disability (NCD) report, and others (e.g., Miyakee, 2002) have discussed the need to develop culturally appropriate information and research about disability issues. According to the NCD report, all individuals, including service providers and researchers who work with people with disabilities need to build their capacity to conduct their work in culturally appropriate ways.

The lack of representation of ethnically diverse people with disabilities in rehabilitation research creates shortcomings in the new knowledge that is produced, our collective understanding of issues that impact minority populations and the programs and policies that might be developed based on research findings (Brach & Fraser, 2000; Goode, Sockalingam, Brown, & Jones, 2000; Vihn-Thomas, Bunch & Card, 2003). Yancey, Ortega and Kumanyika (2006) conducted a review of the participation of minority populations in health-related research. They concluded that although there has been a substantive increase in both quantitative and qualitative scholarly work on the topic of minority recruitment and retention in public health research, there are still few leading investigators from populations with substantive health disparities. Identifying and recruiting minorities with disabilities to participate in research, understanding different cultural belief systems, or communicating with prospective participants to make the research process a comfortable experience can be overwhelming tasks for many researchers. Unfortunately, many investigators may not have bicultural and bilingual staff in their research teams and many may not have access to interpreters. In fact, those few with access to interpreters have often reported challenges related to the quality of interpreter services (Mayeno & Hirota, 1994). Further, many researchers may not have critically examined the ways in which their research practices influence their ability to effectively involve people with disabilities from diverse ethnic backgrounds in their work.