A systematic review of the experiences of caregivers in providing home-based care to persons with HIV/AIDS in Africa

OBJECTIVES: The broad objective of this review was to describe the experiences of caregivers of people living with HIV/AIDS, in home-based settings in Africa, including the challenges and difficulties of caring as well as the positive aspects. INCLUSION CRITERIA: This review considered studies in which family members were the primary informal caregivers of the person living with HIV/AIDS (adults and children) in Africa as well as studies in which informal caregivers (volunteers) from the community provided home-based care to persons living with HIV/AIDS in Africa. The phenomena of interest were the experiences of caregivers' in delivering home-based care to people living with HIV/AIDS and the types of data included experiential accounts of caregivers. SEARCH STRATEGY: The search strategy sought to find both published and unpublished studies and papers, limited to the English language. An initial limited search strategy of MEDLINE and CINAHL was undertaken to identify relevant keywords contained in the title, abstract and subject descriptors. Terms identified in this way and the synonyms used by respective databases were used in an extensive search of the literature. Reference lists and bibliographies of the articles chosen searched and unpublished abstracts were searched through NEXUS. METHODOLOGICAL QUALITY: Each paper was assessed independently by two reviewers for methodological quality. The internal validity (quality) of research papers was assessed using the Joanna Briggs Institute's Qualitative Assessment and Review Instrument and the authenticity of opinion papers was assessed using the Joanna Briggs Institute's Narrative, Opinion, and Text Assessment and Review Instrument. There were no disagreements between the two reviewers and therefore a third reviewer was not required. DATA EXTRACTION: Data were extracted from relevant studies using the JBI-QARI and the NOTARI data extraction tools Data that were extracted related to the population and country in which the study had taken place; the methods used in the study. The study findings that were extracted related to experiences in caring. DATA SYNTHESIS: Data synthesis aimed to portray an accurate description and interpretation of the experiences of those caring for people living with HIV/AIDS in Africa. RESULTS: A total of 32 papers were retrieved. Of these, 14 were included in the review with nine being qualitative research papers and the remaining five being opinion or text papers. Reasons for the 18 papers being excluded from the review, were because experiences of caregivers were not addressed (10 papers); the definition of caregiver did not fit the inclusion criteria (two papers); the concept "home-based care" was not addressed (one paper) and five papers were not from Africa. Of the nine papers that were critically appraised using the JBI-QARI critical appraisal tool, three were excluded because of poor or incomplete descriptions of the methodology. The findings of the remaining six papers were extracted and used in the metasynthesis. Burden of caring, challenges in caring, stigma and support were the main categories that arose from the data. CONCLUSION: Providing home-based care in Africa for persons with HIV/AIDS is a challenging experience for their caregivers. These challenges and burdens of the caregivers may be lessened by formal or informal support structures or be aggravated by the stigma surrounding HIV/AIDS.