Community Reaction to Older Age Parental AIDS Caregivers and Their Families: Evidence From Cambodia
Abstract
Accounts of community reactions to persons with HIV/AIDS and their families typically focus only on negative reactions stemming from stigmatization, with little acknowledgement of variation over time and across settings. To usefully guide local interventions, a broader view is needed that also encompasses attitudes and actions stemming from sympathy and friendship. The authors examined community reactions in Cambodia to families from the perspectives of parents of adults who died of AIDS or currently receive antiretroviral therapy. Survey evidence and open-ended interviews revealed a mixture of reactions with respect to social relations, interactions with local officials, gossip, business patronage, funeral participation, and orphaned grandchildren. Positive support was often dominant, and reactions typically improved substantially over time. Misplaced fears of contagion through casual contact underlay most negative reactions. Moral condemnation or blame was not evident as a source of negative reactions. Overall, a sufficiently supportive atmosphere likely exists in many localities to facilitate community-based efforts to mitigate the epidemic’s impact on affected families.
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1.
1. In this article we use the term community to refer to persons linked together by living in the same locality. We note that in the AIDS literature, community can also refer to groups of persons who have a common sense of identity and belonging because they share common circumstances or experiences (e.g., persons living with HIV/AIDS, being gay, or being commercial sex workers; Commission on AIDS in Asia 2008:153-54).
2.
2. Among men aged 15 to 49 years, 99% had heard of AIDS, 91% agreed that condoms can prevent HIV, 60% agreed that a healthy-looking person can have AIDS, and 84% agreed that breast-feeding can transmit HIV.
3.
3. The supplemental respondents resided in Phnom Penh and all but one of the five provinces covered in the original survey.
4.
4. In 5 interviews, both parents participated, and in the remaining 20, only one parent served as the respondent.
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5. For example, interviews were often conducted inside the home instead of outside, where public access is easier. People who were not direct respondents were politely encouraged to leave during the interviews.
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6. Some visits could be motivated by curiosity and associated with subsequent gossip, in which case the visits would not necessarily represent positive reactions (Ogden and Nyblade 2005). It was not possible from the brief survey question to know the reasons for reported visits from others. However, our open-ended interviews suggested that respondents overwhelmingly viewed visits in a positive light and rarely mentioned those of a voyeuristic nature.
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7. A summary measure was created using principal component analysis, with results converted into a percentile score (Filmer and Pritchett 2001). A dichotomous measure was formed by regrouping the scores according to whether they fell in the upper or lower half.
8.
8. A 2003 HelpAge International (no date) study presented findings at variance with the present study: “Older carers face exclusion and discrimination, which often results in isolation, and leaves carers without adequate and reactive community support networks” (p. 2), and “There was also a common perception among many of the older people interviewed that HIV/AIDS infection is due to ‘immoral’ and ‘sinful’ behaviour” (p. 11). The research was described as “an informal qualitative study” (p. 4) conducted in 15 villages in the province of Battambang. The difference could reflect differences in sample sites, data collection methodologies, analytical strategies, and time periods, especially considering that the several case studies presented referred to deaths between 1995 and 2000. No mention is made of positive aspects of community reactions. In contrast, a recent HelpAge International report based on focus groups and interviews conducted in Cambodia, Thailand, and Vietnam notes that many who participated said that discrimination had decreased, and some emphasized the valuable support received from community members (Orbach 2007).
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Article first published online: October 8, 2009
Issue published: January 2010
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PubMed: 20161630
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