Older-Age People Supporting HIV/AIDS Children and Household Relatives on Antiretroviral Treatment: Case Study of Six Communes of Banteay Meanchey Province, Cambodia

Introduction

In Cambodia access to antiretroviral therapy (ART) accelerated rapidly in the past decade and came to restructure in large part the circumstances and experience of those dealing intimately with the AIDS epidemic. Until very recently HIV infected persons living in Cambodia who had contracted opportunistic infections (OI) associated with AIDS were destined to endure debilitating illnesses terminating inexorably in death. Beyond those infected, the epidemic extended to family members including older-age parents who often bore the emotional, economic, and social consequences of intensive care giving and the premature deaths of their children and relatives. Expanded availability of ART in Cambodia drastically reconfigured the prevailing situations of those affected by the disease. With ART the onslaught of AIDS related infections could now be effectively treated and the health of the AIDS patient could be noticeably restored. Meanwhile increased testing for HIV enabled ART treatment to begin before OI became symptomatic and started to take their toll. As persons living with HIV/AIDS (PHLA) experienced improved health on ART, family members including parents similarly benefited as the adverse effects of the disease were mitigated or at least substantially delayed.

This Analyzing Development Issues (ADI) study focuses on older-age people supporting HIV/AIDS positive children and household relatives on ART in six communes of Banteay Meanchey province in northwest Cambodia. More specifically, the study seeks to examine the background characteristics of the older-age people and their ART recipient children and household relatives, to understand the involvement of the elders in care giving and assistance with treatment adherence, to assess the financial and health impacts of care giving on the older age people, to identify the consequence of ART use for the elders and their children and household relatives, and to explore the support services provided to the elderly caregivers. The study also gauges the scope of parental and family support from information supplied by ART recipients or their caregivers in the study communes. Older persons are largely ignored in the discourse concerning the AIDS epidemic despite the fact that they are intimately involved.

The study employs quantitative and qualitative methods. In May 2008 a one page questionnaire was used to gather information on 382 ART recipients in six purposively selected communes of Banteay Meanchey province. In the same month and in the same communes a total 108 people 50 years and older with ART recipient children living in the same or different households or with ART recipient relatives living in the same household were purposively selected and interviewed about their care giving experiences. In July 2008, 10 of the 108 survey respondents were approached again and interviewed in qualitative in-depth interviews. In Phnom Penh and Banteay Meanchey province the study also interviewed government officials involved in the provision of ART and NGOs involved in home based care support.

ART Recipient Survey

The ART recipient survey reveals that three-fifths of the 382 respondents had at least one living parent and that nearly three-fourths of those with a surviving parent lived in the same household or location as their parents. This placed parents in an advantageous situation to monitor and support ART use. More than two-fifths of the ART recipient parents, and almost two-thirds of the co-resident parents, often or daily reminded their children to take their ART medicines. Compared to older parents, younger parents and especially co-resident younger parents reminded their children often or daily to take ART. Moreover, among ART recipients who had a living parent, more than three-fifths had a parent who reminded them to get their medicines from the hospital or health center. Similarly almost one-third had a parent who had actually taken or accompanied them to get medicines.

Older-Age People’s Survey

The older-age people’s survey reveals that elderly respondents and/or their spouses in 101 (94 percent) of the 108 households interviewed provided care to HIV/AIDS positive children and household relatives. Moreover in these households elderly women comprised 82 percent of the primary care givers. The pronounced role of elderly women in care giving was striking considering their demographic and social characteristics. A majority were separated, divorced or widowed without partners to rely on, nearly half had never attended school, two-thirds were still working to support their households, and just over half were 60 years of age or over. Despite these constraints elderly women generally assumed primary responsibility for the care of HIV/AIDS positive children and household relatives.

While older persons’ and especially older women’s commitment to caring for HIV/AIDS positive children and household relatives was strongly evidenced in the research, the care giving of elders came at a cost. Slightly more than 90 percent of the elderly respondents incurred expenses for the care and treatment of their HIV/AIDS positive children and household relatives apparently before receiving the ART medicines for free. Most elders making these payments had depleted their savings and/or borrowed money. Many had sold land, gold or jewelry. Elderly respondents likewise incurred financial burdens for medical and/or funeral expenses as a result of HIV/AIDS deaths in their families. While more than 40 percent of the elderly respondents complained of poor or very poor health, the elders generally did not associate specific health complaints with the consequences of care giving.

The use of ART resulted in improved health for almost all of the elders’ children/household relatives and enabled them to care for themselves. Nearly threefourths of the elderly respondents reported that ART recipient children/household relatives were able to return to work and more than half had ART recipient children/household relatives who were able to contribute to the income of their households. While the time spent by the elders in care giving dropped sharply after ART use, the elderly respondents remained actively involved in reminding the ART recipients to take their medicines.

To provide effective assistance with ART treatment adherence, elders must have sufficient understanding of the treatment regimen. The study examined the association of ART knowledge and the extent to which older persons received instruction from the ART treatment program. The result indicated a strong association between the extent of instruction received and ART knowledge. This suggests that receiving advice from program sources considerably improves older persons’ knowledge.

In the study communes home based care teams led by NGOs assisted respondents’ children/household relatives on ART. Three-fourths of the households’ surveyed acknowledged their PLHA’s involvement in such programs. According to respondents in these households, the teams encouraged the ART users to take their medicine on time, to eat nutritious foods, and to practice good hygiene. The teams also provided the ART recipients with counseling and made referrals for them to health centers and hospitals. In some instances the teams provided ART beneficiaries with material goods such as sleeping mats, mosquito nets, and blankets.

Elders and their AIDS infected children/household relatives likewise participated in PLHA group meetings and this participation was highly valued. A large majority (87 percent) of the 108 respondents reported that their children/household relatives on ART had attended PLHA group meetings. By comparison, elders in about half (49 percent) of the 108 households surveyed had participated themselves in PLHA group meetings. Nearly all the respondents reporting either type of involvement acknowledged that the meetings were helpful for their PLHA children/household relatives and/or for themselves. While some discrimination towards HIV/AIDS positive children and household relatives existed before they came to be on ART, the prejudice was not particularly severe. A high incidence of respondents reported that neighbors had visited even before the start of ART treatment. During this time some neighbors even bought food or medicine. This noted, ART use had beneficial effects on community reactions. After ART treatment began the incidence of respondents reporting visits by neighbors increased while the incidence of respondents noting avoidance and gossip by neighbors decreased.

Policy Implications

Cambodia’s response to its AIDS epidemic has been remarkably effective albeit highly dependent on donor funding. Rigorous life long treatment adherence to ART regimens is crucial to sustain the health benefits achieved and lessen drug resistance associated with treatment failure. The ongoing success of Cambodia’s response to the disease relies on developing culturally appropriate, pragmatic and cost effective approaches to long-term ART adherence. This entails not only continued provision of drugs and medical personnel to dispense them, it requires persons to supply social and psychological support as well. The formation of PLHA support groups and home based care teams to augment treatment adherence constitutes the prevailing strategy in Cambodia to address this challenge. The results of this study which empirically document the contributions made by elders in response to HIV/AIDS suggest opportunities for expanding this strategy to include older-age persons and other family members.

Compelling arguments emerge from the research for involving older-age persons and other family members more inclusively in ART adherence programs. Elderly persons often live with or nearby ART patients and have deep emotional reasons for wanting the patient to achieve and maintain restored health. They are highly committed to caring and are often present at the specific times that medicines need to be taken. Moreover, they neither ask nor expect to be paid for their assistance. In short, older-age persons represent a largely untapped resource in Cambodia’s organized response to the AIDS epidemic. The underutilization of older-age persons in Cambodia’s ART adherence programs is perhaps due to health professionals’ perceptions that their advanced ages and general lack of formal education render them incapable of providing useful assistance. But as evidenced in this study neither their older ages nor their low levels of education and literacy prevented the elders from understanding the basic requirements of treatment adherence. Indeed ART knowledge was strongly associated with the extent of instruction received suggesting that training from program sources substantially improved older persons’ knowledge. This has implications for involving PLHA support groups more proactively in the education of older-age persons and other family members. Working in tandem PLHA support groups and older-age persons could generate greater synergy and contribute significantly to Cambodia’s response to the AIDS epidemic which will likely confront the country for years to come.