Ongoing support and skills are needed to maintain intervention effects over longer periods.

No abstract

A B S T R A C TThis 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.

The experience described, while specific for establishing the VAU's research agenda for the safety of the current anthrax vaccine, may be useful and adapted for research planning in other areas of public health research.