Older people living with HIV in Uganda: understanding their experience and needs

Abstract

Older adults ageing with HIV in Africa have been largely neglected, despite the distinctive healthcare needs of this population. This article examines the medical care experiences of older Ugandans living with HIV. Data were collected from 40 HIV-positive adults, aged 50 years or older, attending two clinics in Uganda. Individual in-depth interviews were conducted with 16 adults and four focus groups were conducted with a total of 24 adults. Observations of clinic interactions were also recorded. Mean age of the participants was 65 years (range 50 to 80 years), and 50% were females. Interview transcripts were analysed using thematic content analysis. Although most issues raised were not qualitatively different for older individuals versus younger ones, from the analysis, nine major themes emerged, revealing healthcare needs distinctive to older people living with HIV: 1) stigma (43%); 2) difficulty disclosing (8%); 3) delayed diagnosis and care-seeking (55%); 4) access to care (80%); 5) quality of patient–provider relationship (75%); 6) adherence support (25%); 7) serodiscordance (20%); 8) continuity of care (14%); and, 9) end-of-life issues (13%) and other issues (20%). Most participants attributed a double burden of stigma — from HIV and old age — as a major factor affecting access to healthcare for HIV. Most of the participants expressed anxiety about securing healthcare in the future and concern about the lack of social services. Many participants had problems with transportation and food that compromised their adherence to antiretroviral therapy. HIV-prevention, treatment and care programmes should seek to meet the special needs of older people through focused and innovative approaches. Further research with larger samples is needed to explore the impact of these healthcare needs on the quality of life of older people living with HIV.

Keywords: ageing, participant observation, qualitative research, serodiscordance, social support, socio-cultural aspects, stigma, sub-Saharan Africa, treatment access

African Journal of AIDS Research 2012, 11(4): 295–305