AEGiS-09IAC: Families affected by pediatric AIDS: sources of stress and coping.

9th International AIDS Conference

Berlin, Germany — June 6-11, 1993

Families affected by pediatric AIDS: sources of stress and coping.

Int Conf AIDS 1993 Jun 6-11; 9:120 (abstract no. WS-D17-5)
Mellins CA, Ehrhardt AA; HIV Center for Clinical and Behavioral Studies, NYS Psychiatric Institute.

OBJECTIVE: The present study is one of the first to systematically explore stress and coping in inner-city, ethnically diverse families caring for an HIV-infected child.

METHOD: Multiple family members (caregivers, siblings, HIV-infected children) from 25 families were administered a semi-structured interview concerning family structure, the psychosocial impact of HIV on the family, and resources for coping. Families were primarily Black and Latino, from a low SES background; approximately 1/3 of the children lived with an HIV-infected parent, 1/3 with a grandmother, and 1/3 in foster or adoptive care.

RESULTS: The sample reflects the changing composition of family. The majority of primary caregivers were women and single parents who were playing multiple roles, confronting major life events, and who were often overwhelmed with family caregiving responsibilities. Compared to foster care parents and grandmothers, HIV-infected mothers reported more social isolation, fewer financial resources and fewer support services for managing children's HIV disease. Un-infected siblings were also particularly vulnerable to separations and losses, reporting considerable anger and burden from caring for younger siblings or ill parents. Frequently reported stressors included: (1) multiple deaths of other children and/or parents due to AIDS, (2) discontinuity of health care, and (3) at least one child with a behavioral or learning problem. While some families had resources which allowed them to cope effectively (e.g., religion), many families could benefit from mental health services, particularly those which reduce social isolation, promote family functioning and provide respite care.

CONCLUSION: The data suggest these interventions need to be family focused, and address social, economic, and health care issues, in addition to mental health problems.

Keywords: AEGIS, Family, Adaptation, Psychological, Acquired Immunodeficiency Syndrome, Caregivers, Stress, HIV Infections, Foster Home Care, Stress, Psychological, Health Services Needs and Demand, Family Health, Blacks, Child Rearing, Child of Impaired Parents, Child, Human, Female, ICA9
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