Socio-demographic Impact of AIDS Epidemic on Elderly in Thailand

John Knodel, PI
Mark VanLandingham
Wassana Im-em
Jiraporn Kespichayawattana
Chanpen Saengtienchai

Funding: National Institute on Aging (Grants AG15983 and AG18648)

Period: 01/01/1998 -

Abstract:
The overarching goal of this project is to advance an empirically grounded understanding of how the AIDS epidemic directly and indirectly affects older persons (defined as 50 and above) in a developing country setting, and to advance the methodologies necessary to achieve this understanding. Our research focused on Thailand, a country with a medium level of HIV. To achieve this goal, we collected extensive quantitative and qualitative data using a variety of methods and also took advantage of limited preexisting data. While we explore how older persons themselves may be put at risk of contracting HIV and AIDS, our main focus is on the various indirect impacts on older persons associated with the infection of their adult children. Such indirect impacts include economic and opportunity costs associated with care giving to infected children, potential loss of old age support from infected children, raising orphaned grandchildren, and health related effects, including physical and psychological strain. We also examine coummity reaction and AIDS related stigma. We use microsimulation techniques to estimate the number of older persons who will suffer the death of a child due to AIDS; and a combination of surveys, in depth interviews, and key informant interviews to assess the types and intensity of these effects. We published a large number of research reports, journal articles and book chapters from the project. (See longer description for more details).
Description:
Final Progress Report for R01 AG15983

This project results from two parallel NIA grants. The Principal Investigators are: John Knodel, University of Michigan and Mark VanLandingham, Tulane University. The overarching goal of this project is to advance an empirically grounded understanding of how the AIDS epidemic directly and indirectly affects older persons (defined as 50 and above) in a developing country setting, and to advance the methodologies necessary to achieve this understanding. We collected extensive quantitative and qualitative data using a variety of methods and published a large number of reports relating to a large number of relevant projects.

Our major findings are listed below under topics.

Parental Caregiving

Older-aged parents of adults with AIDS commonly serve as caregivers for their son or daughter once the illness becomes severe. Two-thirds of adults who died of AIDS received at least some personal care from a parent and for half, a parent was a main caregiver. This care giving burden falls disproportionately on mothers who do most of the personal care tasks. Fathers also usually helps even if in a more limited role.

At least a third of adult children who were cared for by parents at the terminal stage returned home from elsewhere, often at an advanced stage of the illness, with many dying within a few months of return. The duration of parental caregiving tends to be short since it is concentrated during the terminal stage when the child doe not have long to live. On average parents gave care for about three months. However, because it occurs during the most disabling stage of the illness the experience is emotionally and physically draining for both parent and child.

Health impact of caregiving

Health problems among the caregivers are common. More than half of parents who provided care for their ill adult child experienced fatigue, insomnia, and anxiety. Substantial minorities also experienced strained muscles, headaches, or stomachaches. In-depth interviews with AIDS parents reveal that emotionally the experience is wrenching and the grief long lasting.

Health providers

Health staff at community hospitals and local health centers generally are aware that the older age parents of persons with AIDS play some role in caregiving. However, health providers rarely recognize that this group of caregivers should be targeted for guidance or assistance. This is very unfortunate given how widespread parental caregiving to persons with AIDS is and how difficult the challenges are that parents face when caring for their terminally ill sons and daughters.

Economic impact

Parents commonly play an important role in paying for their ill adult child’s medical treatment. In half of the cases where a parent gave care to the ill child, one or both parents had to either stop or reduce their economic activities and in a third of such cases, this created serious economic difficulties for the parents. For about a third of all parents whose adult child succumbed to AIDS, the deceased child had been the main income earner for their household. While only 27 percent of all parents judged that the loss of their child’s financial or other contributions to the household made their economic situation much more difficult, over half of those in the poorest economic stratum reported this adverse consequence. Thus the economic impact on parents is not evenly distributed. Poorer parents are clearly far more adversely affected than better off ones.

Government assistance

The wide availability in Thailand of basic government health insurance helped moderate the economic impact on families. Sixty percent of parents reported that health insurance helped pay for medical costs and of these over half of these said that the insurance help very much. At the time of the research, however, very few parents were aware of antiretroviral treatment (ART). Since most parents desperately want to do what ever they can to save their son or daughter, the expenses they bear may increase sharply in the near future as awareness and availability of ART increases among them unless the government covers most of the costs. Welfare assistance was less common and less helpful. Only 19 percent reported that either their adult child with AIDS or the family received assistance welfare programs targeting AIDS and, of those who received assistance less than a fifth said it helped very much.

Community Reaction

One surprising finding from the research is that community reaction to the parents and their adult children with AIDS has become much more positive in recent years than typically portrayed in the media and most public statements regarding the epidemic. While negative community reactions are not absent, sympathetic and supportive reactions are far more common. Both local health workers and parents themselves report either a generally positive community response or a neutral one to the parents even during periods of caregiving. This predominance of positive community reaction suggests that programs designed to build on community support to assist families affected by AIDS would meet little resistance.

Knowledge and Attitudes Related to AIDS

We explored AIDS knowledge and attitudinal data we collected during 1999 from a sample of 773 older Thais from four provinces and Bangkok. We find an overall high level of awareness about AIDS but there are important deficiencies among both the young adults and especially among the older Thais. Older persons in this survey often cite friends and acquaintances as important sources of information, and are less likely than young adults to be reached by official AIDS educational campaigns and much more likely than young adults to overstate the risks of contracting HIV by casual contact, e.g., by sharing a meal, eating utensils, or a home with a PHA. Many also appear overly concerned about the risks for acquiring HIV should they ever have to engage in care giving activities, even though in fact such risks are extremely slight.

Conclusions

Programs dealing with the AIDS epidemic need that recognize and address the plight of older persons who lose a child to AIDS. The emotional drain of caregiving and losing a son or daughter to AIDS is common to parents regardless of their economic status. Thus programs providing counseling and caregiving guidance should be available to all parents with an adult child who has AIDS. Programs aimed at easing the financial burden, however, should take into account the considerable range of vulnerability that exists and target those who are particularly susceptible to resulting economic hardship.

List of publications from the grant

Mark VanLandingham, Wassana Im-em, and Fumihiko Yokota. "Access to Treatment and Care Associated with HIV Infection among Members of AIDS Support Groups in Thailand." AIDS Care (forthcoming). Also issued as Population Studies Center, University of Michigan, Research Report 04-550. February 2004.

Mark VanLandingham, Wassana Im-em, and Chanpen Saengtienchai. “Community Reaction to Persons with HIV/AIDS and their Parents in Thailand.” Journal of Health and Social Behavior (Dec 2005). Also issued as University of Michigan, Population Studies Center Research Report No. 02-530, November 2002.

John Knodel and Chanpen Saengtienchai. “Older Aged Parents: The Final Safety Net for Adults Sons and Daughters with AIDS in Thailand.” Journal of Family Issues 26: 665-698, July 2005. Also issued as Population Studies Center, University of Michigan, Research Report 02-503. May 2002

John Knodel and Chanpen Saengtienchai. “AIDS and Older Persons: The View from Thailand.” In P. Lloyd-Sherlock (ed), Living longer. Ageing, development and social protection. London: ZED, 2004, pp. 249-274. Also issued as Population Studies Center, University of Michigan, Research Report 02-497, February 2002.

John Knodel and Wassana Im-em. “The Economic Consequences for Parents of Losing an Adult Child to AIDS: Evidence from Thailand.” Social Science & Medicine 59(5): 987-1001, September 2004. Also issued as Population Studies Center, University of Michigan, Research Report 02-504, Revised Oct. 2003.

Jiraporn Kespichayawattana and Chanpen Saengtienchai. “Health Services, Problems, and Needs of Health Personnel at Community Hospital and Health Center Level in Providing Care to HIV/AIDS Patients and Their Families.” Journal of Health Sciences vol. 13(3):632-640, July-Aug. 2004 (in Thai).

Jiraporn Kespichayawattana and Mark VanLandingham. "Health impacts of co-residence with and care giving to persons with HIV/AIDS (PHAs) on older parents in Thailand." Journal of Nursing Scholarship 35(3): 217-224 (Third quarter, 2003). Also issued as University of Michigan, Population Studies Center Research Report No. 02-527, September 2002.

Chanpen Saengtienchai and Jiraporn Kespichayawattana. “Health services of sub-district health center for person with HIV/AIDS: Views of staff of health centers.” Journal of Health Science 12(4): 573-83 July-August 2003 (in Thai).

John Knodel and Mark VanLandingham. “Return Migration in the Context of Parental Assistance in the AIDS Epidemic: The Thai Experience.” Social Science & Medicine 57(2):327-342, July 2003. Also issued as Population Studies Center, University of Michigan, Research Report 01-492, November 2001.

John Knodel, Mark VanLandingham, Chanpen Saengtienchai, Wassana Im-em and Jiraporn Kespichayawattana . “Data Collection Strategies for Studying the Impacts of AIDS on Older Parents: Lessons from Research in Thailand.” Population Studies Center, University of Michigan, Research Report 03-537, June 2003

Mark VanLandingham and John Knodel. “Sex and the Single (Older) Guy: Sexual Lives of Older Unmarried Thai Men During the AIDS Era.” Population Studies Center, University of Michigan, Research Report 03-536, June 2003

John Knodel, Susan Watkins, and Mark VanLandingham. “AIDS and Older Persons: An International Perspective.” JAIDS Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology, 33:S153-S165 (June 2003, Supplement 2). Also issued as Population Studies Center, University of Michigan, Research Report No. 02-495, January 2002

Kenneth Wachter, John Knodel and Mark VanLandingham. “Parental Bereavement: Heterogeneous Impacts of AIDS in Thailand.” Journal of Econometrics 112: 193-206 (2003). Also issued as Population Studies Center, University of Michigan, Research Report 01-493, November 2001.

John Knodel and Mark VanLandingham. “The impact of the AIDS epidemic on older persons.” AIDS 2002, 16 (suppl 4):S77-S83.

John Knodel, Wassana Im-em, Chanpen Saengtienchai, Mark VanLandingham and Jiraporn Kespichayawattana. “The Impact of an Adult Child's Death due to AIDS on Older-aged Parents: Results from a Direct Interview Survey.” Publication No. 266, Institute for Population and Social Research, Mahidol University, Thailand, 2002 (available in a Thai Language translation published 2004). Also issued as Population Studies Center, University of Michigan, Research Report 02-498, April 2002.

Wassana Im-em, Mark VanLandingham, John Knodel, and Chanpen Saengtienchai. “HIV/AIDS-related Knowledge and Attitudes: A Comparison of Older Persons and Young Adults in Thailand.” AIDS Education and Prevention 2002, 14:246-262.

Kenneth Wachter, John Knodel and Mark VanLandingham. “AIDS and the Elderly of Thailand: Projecting Familial Impacts.” Demography 39(1) 25-41, 2002. Also issued as Population Studies Center, University of Michigan, Research Report 00-446, May 2000.

Chanpen Saengtienchai and John Knodel. Parents providing care to adult sons and daughters with HIV/AIDS in Thailand. UNAIDS Case Study, Best Practice Collection, Geneva: UNAIDS, November 2001. Also issued as “Parental Caregiving to Adult Children with AIDS: A Qualitative Analysis of Circumstances and Consequences in Thailand.” Population Studies Center, University of Michigan, Research Report 01-481, July 2001

John Knodel, Chanpen Saengtienchai, Wassana Im-em and Mark VanLandingham. “The Impact of AIDS on Parents and Families in Thailand: A Key Informant Approach.” Research on Aging 23(6): 633-670 (Nov. 2001)

Mark VanLandingham and Wassana Im-em. “Living with HIV/AIDS in Thailand: Results from a Self-administered Survey.” Population Studies Center, University of Michigan, Research Report No. 01-488, September 2001

Wassana Im-em, Mark VanLandingham, John Knodel, and Chanpen Saengtienchai. “Knowledge and Attitudes of Older People about HIV/AIDS in Thailand: A Comparison with Young Adults” is available as Publication No. 257, Institute for Population and Social Research, Mahidol University, Thailand, 2001. Also issued as Population Studies Center, University of Michigan, Research Report No. 01-464, 2001.

John Knodel and Napaporn Chayovan. “Sexual Activity among the Older Population in Thailand: Evidence from a Nationally Representative Survey.” Journal of Cross-Cultural Gerontology 16(2): 173-200. 2001. Also issued as Population Studies Center, University of Michigan, Research Report 00-445, May 2000.

John Knodel, Mark VanLandingham, Chanpen Saengtienchai, and Wassana Im-em. “Older People and AIDS: Quantitative Evidence of the Impact in Thailand.” Social Science & Medicine 52 (9): 1313-1327 May 2001. Also issued as Population Studies Center, University of Michigan, Research Report 00-443, January 2000.

John Knodel, Chanpen Saengtienchai, Wassana Im-em and Mark VanLandingham. “The Impact of Thailand’s Aids Epidemic on Older Persons: Quantitative Evidence from a Survey of Key Informants.” Publication No. 252, Institute for Population and Social Research, Mahidol University, Thailand. 2000. Also issued as Population Studies Center, University of Michigan, Research Report 00-448, July 2000.

Mark VanLandingham, John Knodel, Wassana Im-em and Chanpen Saengtienchai. “The Impacts of HIV/AIDS on Older Populations in Developing Countries: Some Observations based upon the Thai Case.” Journal of Family Issues 21(6): 777-805, Sept. 2000. Also issued as Population Studies Center, University of Michigan, Research Report 99-441, October 1999 (Revised June 2000).

Obtaining Copies of These Reports

1. Download them as PDF files from the project’s website (below).
2. Request paper copies by email. Send requests to: psc-pubs [at] umich [dot] edu
3. Request paper copies by mail. Address requests to:
PSC Publications
Population Studies Center of the University of Michigan
PO Box 1248
Ann Arbor, MI 48106-1248 USA.

More Information: http://aidseld.psc.isr.umich.edu/


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