This study will shed light on how families - parents/caregivers and young siblings - respond to and cope with the death of a young child from AIDS. Furthermore, it will evaluate the effectiveness of a support group intervention that has been designed to assist these families. South Africa has the largest number of people living with HIV/AIDS in the world. Because AIDS is the leading cause of death in this country, children and parents/caregivers are confronted with ongoing loss within their families as well as their communities. The objectives of the proposed project are (1) to investigate how families (caregivers and siblings) respond to the death of a child from AIDS, and (2) to develop, implement, and evaluate the efficacy of a family bereavement intervention to help parents/caregivers and children cope with the loss of a child from AIDS. The project is exploratory in nature because little empirical research exists on the impact of a child's death from AIDS on parents/caregivers and siblings, especially in resource- limited countries like South Africa. We will focus on families living in KwaZulu-Natal, a province that has been hard hit by the HIV/AIDS epidemic in South Africa. The protocol describes a mixed method, sequential study that will pursue emic and etic aspects of bereavement associated with the loss of a child to AIDS. The emic phase will be conducted in Year 1 and it will employ (a) in-person interviews with approximately 25 children and 25 parents/caregivers who have lost a sibling or child to AIDS within the past 2 years; (b) a focus group of 15 children (youth advisory group) who have lost a sibling to AIDS; and (c) a focus group consisting of 10 bereaved parents/caregivers and 10 professionals and community members (community advisory group). Qualitative data collected in Year 1 will not only help elucidate the bereavement experiences of children and parents/caregivers but it will be used to inform our efforts to develop, implement, and pilot-test a bereavement intervention for children and parents/caregivers. In the etic phase in Year 2, we will recruit 100 families (consisting of 100 parents/caregivers and 300 children) who will be randomly assigned to a control group (booklet on grief) or an experimental group involving 8 weekly 2 hour group sessions at the Open Door Crisis Center, a non-profit community-based organization in KwaZulu-Natal, which specializes in providing support services to families affected by HIV/AIDS and training community members to become lay counselors. Participants will complete pre-and post-intervention assessments. We hypothesize that children and parents/caregivers who participate in the experimental condition will demonstrate greater reductions in psychological distress, reduced depression and increased coping self-efficacy than those randomized to the control condition. A training manual will be developed for community-based organizations, hospitals, hospices and other organizations to help families deal with the loss of a child to AIDS that is specially geared for resource-limited settings. ? ? ?
| Demmer, Craig; Rothschild, Nina (2011) Bereavement among South African adolescents following a sibling's death from AIDS. Afr J AIDS Res 10:15-24 |
| Demmer, Craig (2011) Experiences of families caring for an HIV-infected child in KwaZulu-Natal, South Africa: an exploratory study. AIDS Care 23:873-9 |
