Bangkok Post - June 21, 2001
John Knodel, Mark Vanlandingham and Chanpen Saengtienchai

Twenty years after Aids was first recognised in the West and more than a decade after its rapid spread through Thailand, nearly everyone in the country is familiar with the basic facts of the disease.

Programmes designed to prevent infection are paying off.

Efforts to assist those infected are improving, albeit hampered by the expense of the multiple drug therapies used in the West and sluggish progress on the treatment of opportunistic infections and palliative care, which are not expensive.

The plight of Aids orphans, the dependent children left behind by parents who succumb to the illness, is also receiving much needed attention.

One severely affected group that has received virtually no attention is Aids parents. Not only do people who die of Aids have children but they also have parents. And these Aids parents are profoundly affected by the illness and death of their adult son or daughter.

There are probably more Aids parents in the world than there are Aids orphans, yet we scarcely think of them, except occasionally in connection with the foster care they often provide for Aids orphans.

There is probably no tragedy greater in life than to lose a beloved child, and such losses are compounded when they occur in the prime of the child's life and after a debilitating illness resulting in long periods of suffering.

Why is there no mention of Aids parents in the discourse concerning the HIV/Aids epidemic in Thailand and in similarly affected countries?

We believe that the neglect results in part from the fact that the difficulties faced by people infected with HIV and Aids, and the vulnerability of their orphaned children, is much more apparent than it is for the older parents of those infected.

Yet older parents are heavily involved in giving care to their stricken young adult sons and daughters.

Many adult children routinely live either in the same house or the same compound as their older mothers and fathers. And as we are finding in our current research, infected young adult Thais who live away from their parental home frequently return there for care and support when they become seriously ill.

No wonder then that Thai parents provided care for almost two-thirds of the adults in our study who died of Aids and were the main care-givers for half. Similar figures are reported by other researchers working in Uganda, the only other country for which a systematic assessment has been made.

In addition to the emotional devastation and the time requirements involved in care giving, older people can be seriously affected by the infection of their adult children in other ways.

Care giving can be strenuous, resulting in physical strain and exhaustion.

Exposure to opportunistic infections such as tuberculosis puts their own health at risk.

Some may spend large sums of money on treatments that may or may not work. There are the grandchildren who must be raised.

And in some communities, older care-givers may experience negative social reaction resulting from having an infected family member in their household.

More recognition of how older persons fare with an Aids infection in their family would help direct efforts to alleviate some of these problems. Additionally, older persons could be used to help improve the treatment of their infected family members.

There is growing recognition that Thailand needs to direct more resources towards the treatment of opportunistic infections and palliative care of those infected with HIV/Aids.

It is also becoming increasingly clear that Thailand will soon join the small but growing number of middle-income countries offering some form of treatment that targets the more immediate consequences of HIV-that is, the compromised immune system.

Who better to facilitate such efforts than the older parents of the infected?

Older aged parents not only have the motivation and dedication to implement new practices that would improve the well being of their infected adult children but already, as our Thai research shows, often serve as the key links between health services and infected adult sons and daughters.

It is they who often accompany those infected to health service outlets, stay with them when they are hospitalised, administer prescribed medications at home, and act as major care-givers in general.

When these new efforts are mobilised, it is the older parents of the infected who are in the best position to facilitate their child's compliance with the regime of medication for palliative care, more extensive prophylaxis and treatment for opportunistic infections, and the fairly complex anti-retroviral treatment for HIV.

Older parents deserve a hand for being primary deliverers of end of life care to those infected with HIV/Aids. They also deserve a helping hand to extend this role to care giving that could extend and improve the quality of life of their children. Twenty years into the epidemic it is time that their unmet needs and under-utilised potential was recognised, not only in Thailand but wherever Aids is taking its toll.

- John Knodel is professor of sociology at the University of Michigan, Mark VanLandingham is associate professor of international health at Tulane University, New Orleans, and Chanpen Saengtienchai is former researcher at ChulalongkornUniversity.

010621
BP010609

Always watch for outdated information. This article first appeared in 2001. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 2001. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .