HIV/AIDS-Associated Stigma among Afro-Caribbean People Living in United States

Estimates of Afro-Caribbean people living with HIV/AIDS are questionable (UNAIDS, 2008), because this population is especially unwilling to be tested or disclose their status fearing stigmatization (Azumu, 2008). Anderson, Elam, Gerver, Solarin, Fenton and Easterbrook (2008) describe the “Caribbean cocktail” (fear of contamination, homophobia, religious beliefs and ignorance) as a unique combination of factors that influences HIV/AIDS-associated stigma. Stigma associated with HIV poses a major threat to HIV treatment and prevention (Chiu, Grobbelaar, Sikkema, Vandormoel, Bomela, & Kershaw, 2008) in Afro-Caribbean people, a fast-growing segment of the population (Passel & Cohn, 2009).

Goffman (1993) defined stigma as people's attitude towards someone who is discredited by physical or personality deformity or association with a group. HIV/AIDS stigma is tied to a disease that is not clearly understood with symptoms related to rejected lifestyles (Herek, Capitanio, and Widaman, 2002). The Caribbean cocktail has the potential for threatening Afro-Caribbean community well-being. The central place of religious beliefs in the cocktail suggests that understanding the attitudes of a church-going community may provide meaningful information. The purpose of this pilot study was to explore attitudes about HIV/AIDS-associated stigma for church-going Afro-Caribbean people in the United States.

Design and Procedure

This pilot study used focus group data from a parent study to develop a culturally appropriate intervention for HIV/AIDS prevention in Afro-Caribbean American adolescents. Two focus groups (one adolescent; one adult) were convened in private rooms at Caribbean church sites. Ten female adolescents from13-17 years old and ten mothers of female adolescents participated. The question to elicit information about stigma for the adolescents was, “How do young people your age feel about having a friend who is HIV positive?”. Among the parents, the question was, “How do mothers feel about their daughters having a friend who is HIV positive”? Each focus group session lasted 45-60 minutes, was audio taped and documented with notes about the context of the discussion. Information from mothers and daughters was evaluated separately through content analysis using the processes of careful reading, identifying recurring expressions, and synthesizing the expressions into the two major themes.

Findings

Participants were all Caribbean natives from Antigua, Barbados, Jamaica, St Kitts, and Trinidad. The average age of mothers was 35 years; they were single and employed with a minimum of high school education. Eighty percent of the adolescents were born in the US and 20% in the Caribbean. The average age of adolescents was 15.5 years; all were in school and active in youth ministries. Participants were people with strong religious beliefs who were avid church-goers, describing themselves as “convicted and converted” believers who will “speak of their conviction with the same fervor as a tent revivalist”. Five participants had family members living with HIV/AIDS. Two major themes were identified in the focus group data: anger with HIV/AIDS discrimination and discrimination based in fear.

Anger with HIV/AIDS Discrimination

Discriminatory attitudes towards people with HIV/AIDS engendered anger. Teens who had family member(s) with HIV/AIDS expressed disappointment in church members' behaviors; one used scripture to support her feelings: …they make her feel like she was having sex all over the place…she was fine and going to church like everyone else. She made a mistake…and they condemn her. The Bible says ‘let him that is without sin cast the first stone’.

Another described her frustration with discriminatory labeling: If they're trying to tell someone who you are, they say…the girl whose [family member] got HIV. I don't have AIDS…I don't want them to look on me like that.

Adults were angry because people's HIV status was known beyond the local church extending “back home”: …we should spread the good things that God has done for us here; and treat people like Jesus said, help to restore people for it could be you [in that situation].

Discrimination Based in Fear

Family members perceived discrimination from members of the church community due to fear of transmission: the children are not allowed to play together even after services. The adolescents expressed being constantly warned “not to hang with people with HIV/AIDS” because their parents wished to discourage involvement in “inappropriate behaviors”. Sometimes the discrimination was expressed by exclusion from church festivities: when we have church dinners, they wouldn't ask her to fix anything… and when the food is serving, folks in line asking who cooked this or who cooked that…trying to make sure they don't eat what the lady [with HIV] cooked.

The group of mothers in this sample preferred that their daughters not have close friendships with someone with HIV/AIDS. These mothers did not think that they were being discriminatory but concerned for the welfare of their children. One mother expressed her support for her daughter if she wants to maintain friendship with a newly HIV-infected friend: I would be concerned for my child…if that friend comes to our home, I would treat her well not to embarrass my daughter, but I would separate the plate she ate from. “… and the towels she used I'd probably not use again them but wouldn't let my daughter know”, interrupted another mother. Out of fear of contamination the mothers all concurred that they would rather their daughter's [HIV+] friend visit them than have their daughters going to the HIV-infected friend's house.

Discussion/Implication/Conclusion

Study results converge with findings from other stigma studies adding to literature that stigma reinforces marginalization (Aggleton, Wood, Malcolm, & Parker, 2005), a serious mental health concern contributing to escalating HIV/AIDS. The church is a powerful force in Afro-Caribbean communities and mental health nurses can play an essential role in affecting HIV/AIDS prevention and treatment through church-community engagement. The words of the participants indicate that all ingredients of the Caribbean cocktail…. fear of contamination, homophobia, religious beliefs, and ignorance…are at play for female Afro-Caribbean adolescents and their mothers. Although angry about discrimination, they participate in discrimination. Education by mental health nurses who are sensitive to the components of the Caribbean cocktail is a logical starting point for addressing stigma in this population.