13th International AIDS Conference Durban, South Africa - July 9-July 14, 2000

Int Conf AIDS 2000 Jul 9-14; 13:(abstract no. ThOrD694)

Poindexter C
C. Poindexter, Boston University, School of Social Work, 264 Bay State Road, Boston, MA 02215, United States, Tel.: +1 617 353 77 21, Fax: +1 617 353 56 12, E-mail: ccp@bu.edu

ISSUE: Family members are typically the primary source of emotional and physical support for adults and children with HIV in the U.S.; many of these informal caregivers are parents and grandparents over the age of who are caring for adult children or minor grandchildren with HIV disease. Elderly caregivers face the usual stresses of HIV caregiving, such as an unpredictable medical and social trajectory, the difficulties of performing logistical caregiving tasks, living with the physical and emotional pain of the care recipient, conflicts associated with reintegration the adult or child with AIDS into the household, HIV-related stigma, and hidden grief . In addition, they are often caring for multiple impaired or dependent persons and have neglected health concerns of their own.Project: This study reports on qualitative interviews with 7 older HIV-affected caregivers in the Boston area between February and September of 1998. Although specific questions about their needs and assets were not asked during the interviews, analysis of the data through grounded theory principles generated this framework.Results. It appears that the stresses and blessings are often two sides of the same coins. For example, family is both a strength and a need; the reciprocity with the adult or child with HIV is both a joy and a burden; when they have services it's a help; when they don't, it's a problem; they had some extraordinary emotional resources, but also faced some incredible emotional pressures; and their coping was helped if they and their family members went public and fought for justice; yet stigma, ignorance, and discrimination took a toll.Lessons Learned: When allowed to tell their stories in an unstructured ways, elderly HIV-affected caregivers describe the burdens and joys of caregiving in similar terms. Researchers, advocates, and practitioners should recognize that the experiences of caregivers are contextual and complex. Formal supports should be developed and offered to help them maximize their existing resources and minimize their challenges.

Copyright © 2000 - International AIDS Society (IAS). Reproduction of this abstract (other than one copy for personal reference) must be cleared through the IAS.