Patient priority setting in HIV ageing research: exploring the feasibility of community engagement and involvement in Tanzania

Abstract

Plain English summary The population in sub-Saharan Africa is ageing. The majority of people living with HIV infection also live in Africa, and they are ageing now that treatment is widely available. Current research on the chronic complications of ageing with and without HIV in sub-Saharan Africa is very limited, meaning that little is known on how to improve symptoms. In this pilot study, researchers from Tanzania and the UK worked with older people living with HIV, and community elders in Tanzania in a health research priority-setting exercise. Thirty older people living with HIV and thirty community elders attended workshops where they listed issues important to them, and then voted for each item as a group. Priorities were ranked in order of importance by adding up the number of votes. We also asked how interested and motivated older people were to work jointly with academic researchers and what might help and support them to do this. Both groups reported that they felt very motivated to participate in, conduct and oversee future research studies. A key finding was that basic needs, such as being able to see a doctor regularly and buying medications, were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were important issues for older people with HIV. Our pilot findings suggest that meeting basic needs should be a key part of future work on living and ageing with chronic disease in Tanzania. The importance of working with patients and communities is also highlighted.

Keywords

• HIV
• HIV-associated neurocognitive disorders (HAND)
• Older adults
• Sub-Saharan Africa
• Community engagement and involvement (CEI)
• Patient and public involvement (PPI)