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Picking Up the Pieces: Caregivers of Adolescents Bereaved by Parental AIDS

AIDS Institute, University of California, Los Angeles, rotheram{at}ucla.edu

Noelle R. Leonard

AIDS Institute, University of California, Los Angeles

Marguerita Lightfoot

AIDS Institute, University of California, Los Angeles

Laura H. Franzke

AIDS Institute, University of California, Los Angeles

Nim Tottenham

AIDS Institute, University of California, Los Angeles

Sung-Jae Lee

AIDS Institute, University of California, Los Angeles

This study describes caregivers of adolescents whose parents died of AIDS and examines how caregivers perceive the impact of raising bereaved adolescents. For adolescents bereaved by AIDS, 65 non-parental caregivers were recruited and assessed twice over 6 months. Most caregivers (89%) were female members of the extended family, 49% were married and 29% were employed. Caregivers were older and more likely to be employed than parents with HIV (PWH), but were similar in ethnicity, partnership and financial status, and religiosity. Caregivers had generally been selected by the parent prior to death (66%) and most caregivers (75%) had at least moderate involvement in the care of the youth prior to parental death. Caregiver–youth relationships were stable (91%) over a 6-month period. Caregivers were significantly less emotionally distressed than PWH had been. Caregiver burden was rated as moderate; the number of positive caregiver–youth relationships decreased significantly over 6 months. Family caregiving is a common, ongoing and stable relationship in families coping with AIDS.

Key Words: adolescents • AIDS • caregiver • orphans

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