1963-2013 - 50 years of Research for Social Change

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Back | Project: Ageing, Development and Social Protection

Case Study by John Knodel & Chanpen Saengtienchai

  • Project from: 2001 to 2003



The global AIDS epidemic is typically associated with adults in their 20s, 30s and 40s and to a lesser extent with their young children who are left behind as AIDS orphans and who sometimes are infected themselves through perinatal transmission. Older adults are also very much impacted by the epidemic even though their situation has largely been ignored in the discourse about AIDS. Not only can older adults contract HIV themselves but, far more commonly, they experience multiple consequences as older generation relatives, particularly in their role as parents of younger adults who become ill and die from AIDS. Older persons also make significant contributions to the well-being of younger adults who suffer from AIDS by playing a major role in caregiving to their infected sons and daughters and by assuming the role of foster parents for their grandchildren who are left behind as AIDS orphans. In addition, older persons have considerable untapped potential for contributing to efforts to expand and improve the treatment of persons with AIDS. Very little research has been conducted so far on these issues, especially in developing world settings. One exception is the comprehensive study of AIDS and older persons that we and our colleagues are conducting in Thailand. This paper addresses the impact of the AIDS epidemic for older adults based on that research. Since parents of adults with AIDS are the most common group of older persons who experience direct consequences of the epidemic, the primary focus is on the consequences for and the contributions by older persons in their role as AIDS parents.

Our analysis is based primarily on three components of our research project: interviews with key informants about individual AIDS cases and their families; direct survey interviews with AIDS parents and a comparison group of older persons; and in-depth interviews with AIDS parents. The first two permit quantitative analysis while the third is suited for qualitative analysis.

There are several major findings from our analysis that deserve emphasis. Probably the most important is that substantial numbers of older-aged persons are adversely affected by the AIDS epidemic through the infection of their adult children. Not only do these AIDS parents far exceed the number of older persons who are HIV infected themselves but, at least in Thailand, they far outnumber AIDS orphans, a group that has received extensive publicity and attention. Yet these older-aged AIDS parents have been largely overlooked by national governments, international organizations, and private organizations concerned with the epidemic.

AIDS parents can suffer a wide variety of adverse consequences as a result their adults child's illness and death. The only aspect of the situation of AIDS parents that has received some attention, however, is in their role in fostering orphaned grandchildren. But this is only one of many pathways through which older age AIDS parents can be affected and, in contexts such as Thailand, involves only a minority of older persons among those who lose their adult son or daughter to the disease. In other settings, particularly in high prevalence African countries, where the fertility levels of those in the ages most susceptible to AIDS is much higher, care for AIDS orphans will be more common. While the care of orphaned grandchildren remains an important pathway through which the epidemic affects older persons, its extent and consequences for grandparents is likely to vary substantially with the particular setting. Moreover, the almost exclusive emphasis on older people as foster parents for AIDS orphans gives the misleading impression that this is both the most common and most significant way that older people are affected, neither of which is necessarily correct.

At the same time that older-aged parents suffer adverse impacts they also make very substantial contributions in helping the society cope with the epidemic through the care-giving of their infected sons and daughters. Our results suggest that the majority of Thai adults with AIDS live with and are cared for by a parent by the terminal stage of the illness and in half of the cases, a parent serves as a main caregiver. This is very similar to findings from Uganda, the only other country for which a systematic assessment is available. By providing care for their adult children at home, AIDS parents take a tremendous burden off the health care system. Our results also reveal that many of the adverse impacts experienced by parents are linked with their contribution as caregivers and are particularly pronounced in situations in which a parent acts as a main caregiver. Parents also often serve as critical links between their ill adult child and the health care system. They frequently accompany their infected son or daughter to health service outlets, stay with them in the hospitals, consult with health care providers about appropriate treatment, administer the prescribed medications, and provide a full range of personal care at home. Yet at present there is little recognition in Thailand or elsewhere of this major contribution of older-aged parents. Thus almost no programs exist that are designed to provide guidance to them as they carry out this arduous and painful role.

Our in-depth interviews with AIDS parents clearly reveal the dedication with which most AIDS parents involved with caregiving carry out their role and their desperate wishes to reduce the suffering and improve the health of their infected sons and daughters. Older parents are thus ideally situated and motivated to help in efforts to improve the quality of care of persons with HIV/AIDS. Their potential contribution is likely to increase in importance as new, more ambitious programs promote more extensive prophylaxis and treatment for opportunistic infections, complex antiretroviral treatment of HIV, and palliative care.

Overall, the loss of a child to AIDS has a serious economic impact only for a minority of AIDS parents. Those parents who spent substantial amounts on treatment tend to be economically better off than average and hence can afford to do so without lasting financial hardship. At the same time, the poor appear to be the most adversely affected. Even though they spent less on treatment, caregiving and funeral expenses, the amounts were more devastating for them relative to their economic resources. One implication of this finding is that interventions intended to help older-aged parents deal with the financial strains associated with losing an adult child to AIDS should take into account the considerable range of vulnerability that exists and target those who are particularly susceptible to resulting economic hardship.

Some potential impacts of losing an adult son or daughter to AIDS, such as loss of old age support, may not become apparent until long after the adult child's death. Our research is likely to miss these potential long-term effects because insufficient time had past at the time of data collection. However, most AIDS parents have other surviving children on whom they can depend. Thus for many the loss of just one adult child may not seriously jeopardize their old age care and support from adult children. If the AIDS epidemic continues on any significant scale, however, subsequent generations of AIDS parents will have had smaller families and the impact a losing even just one adult child could have a more extensive impact on support from children in old age. In some African countries, where HIV prevalence is far higher than in Thailand, parents are at much greater risk of losing multiple children and thus more vulnerable to serious erosion of potential old age support.

Sustained social stigma directed at parents of persons who died of AIDS is far from universal in Thailand at present. Sympathetic and supportive reactions from others in the community are more frequently reported than negative ones. Clearly negative reactions are not absent in many community settings and our open-ended interviews revealed many such examples. However, anecdotal evidence of extreme negative reaction, especially during early stages of the epidemic, has lead to an exaggerated and out-dated view of the predominance of stigmatization and to resistance to recognizing that community members can also be sympathetic and helpful to a family unfortunate enough to lose a member to AIDS.

One implication of the relative predominance of positive community reaction is that programs designed to build on community support in order to assist families with a member ill with AIDS or who have suffered an AIDS death would meet less resistance than might otherwise be thought. A more accepting community attitude is also likely to increase the willingness of an ill adult child to return home from elsewhere and that of the parents to accept responsibility for an AIDS inflicted son or daughter.

Thailand shares important characteristics with many of countries with moderate to severe levels of the HIV/AIDS epidemic that are likely to condition the implications for parents and families. These include the heterosexual nature of most transmission and the dependence of parents on adult children for old age support. There are also features of the Thai situation that distinguish it from many other developing countries, particularly those in Africa where the severity of the epidemic is far worse. Many of these features are likely to moderate the impact of the epidemic on older-aged Thai parents compared to parents in other settings where they are absent. These include a well developed public health system, reasonably widespread availability of government health insurance, an unusually successful effort to openly confront the epidemic and to educate the public about it, and low fertility among the generation of adults in the prime AIDS ages combined with high past fertility of their parents. Thailand also has it's own particular cultural setting, strongly influenced by its heritage of Theravada Buddhism, within which the causes and consequences of epidemic play out. Thus the findings of the present study are likely to have considerable relevance for other developing countries with AIDS epidemics but also need to be understood in terms specific to the Thai context.