A collaborative approach to HIV nursing research in southern Africa.
Int Conf AIDS 2004 Jul 11-16; 15:(abstract no. E10429)
Seboni NM, Human S, Sukati NA, Makoae LN, Holzemer WL University of Botswana Department of Nursing, Gaborone, Botswana
Supported by Bristol-Myers Squibb's Secure the Future Foundation, and coordinated by the University of California, San Francisco, universities in Botswana, Lesotho, South Africa and Swaziland collaboratively explored self and family symptom management strategies for people living with AIDS (PLWAs). Interviews (743) were conducted with PLWAs and their caregivers. Items focused on frequency and severity of HIV-related symptoms, how symptoms were managed, perceived effectiveness of intervention strategies, and quality of life. This collaborative research posed specific challenges and resulted in enriched outcomes. Challenges included the establishment of country teams; ethical issues such as balancing scientific rigor with interviewers' compassion; standardization of research instruments across cultures, languages and distances; meeting time lines; frequent team meetings; and maintaining continuity and enthusiasm. Benefits included empowerment of participants, supportive networks, and development of knowledge and experience. Extreme poverty and unemployment, isolation, fear and stigma, and concern over disclosure of HIV diagnosis due to participation in the research were additional challenges. These problems are not always understood in the context of HIV research. The collaborators were challenged to develop skills in cross-country collaboration, to work effectively with extremely resource-poor communities, and to make the research findings on effective symptom management strategies available for community members and health policy advisers. Recommendations include: 1) Dissemination of results to policy makers to ensure that findings are incorporated into health policies and programmes; 2) Validation of the management strategies to enhance the level of evidence-based home care symptom management; and, 3) Translation of the self care symptom management guidelines into local languages to ensure cultural acceptability, affordability and accessibility.
Keywords: AEGIS, Acquired Immunodeficiency Syndrome, HIV Seropositivity, HIV Infections, Africa, Southern, Nursing Research, Research, Health Policy, South Africa, Health Services Accessibility, Research Support, Health Services, Self Care, Botswana, Lesotho, Swaziland, California, San Francisco, economics, organization & administration
