The Potential for Stigmatization through Culturally Sensitive Health Care Interventions: Why Just Me?

Introduction:The growing diversity within the U.S. population has driven research on the cultural dimensions of health in hope that as research becomes more culturally sensitive, it will eventually ensure the establishment of culturally competent health care to eliminate health disparities. In 2006, the National Kidney Foundation (NFK) found that education of kidney transplant recipients (KTRs) on their increased cancer (particularly skin cancer) risk varied between transplant centers. Furthermore, attitudes towards sun protective behaviors, which can reduce the risk of skin cancer, vary considerably among different racial/ethnic groups (Robinson 2010). The purpose of this study was to explore normative beliefs and to develop an educational intervention about the risk of developing skin cancer among KTRs who self-identified as Non-Hispanic Whites (NHWs), Hispanic/Latinos (H/Ls) and Non-Hispanic Blacks (NHBs).

Methods:Recruitment, which was stratified to assure representation of the three groups, was limited to KTRs who expressed a desire to participate in research. Cognitive testing of one of four educational brochures was performed; three were culturally sensitive with textual information and images specific to the race/ethnicity of each individual participant while the fourth included textual information and images of all three groups. Cognitive interviews were audio recorded using think-aloud/probing techniques to address: a) understanding risk of developing squamous cell carcinoma and melanoma, b) need for sun protection, and c) reaction to images (graphs, tables, pictures of individuals, etc.).

Results:25 cognitive interviews were performed; 15 specific to the race/ethnicity of each participant (NHWs=5, H/Ls=4, NHBs=6) and 10 that included information of all three race/ethnic groups (NHWs=3, H/Ls=4, NHBs=3). Qualitative data analysis involved a search for common themes arising a priori and by repetition across interviews. The responses of two coders were compared and discrepancies resolved to establish inter-rater reliability (Cohen’s kappa=.98). One theme identified during the testing of culturally sensitive brochures was the concern over its limitation to one racial/ethnic group, specifically 10 out 15 participants. One NHB participant stated, “If everyone needs to use sun protection, why do all the pictures in the workbook look like me?” In contrast, none of these concerns were raised over the brochure that included all three racial/ethnic groups.

Conclusions: All KTRs undergo lifelong immunosuppressive therapy that is associated with the development of skin cancer. Even though the risk in developing skin cancer varies among them, the burden imposed by their medication is universal. This study highlights the potential of a culturally sensitive intervention targeted to one racial/ethnic group for a disease that is not recognized as having a racial or ethnic association, being perceived as stigmatizing.