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

Abstract

ObjectiveThe chronic complications of ageing with HIV are not well studied in sub-Saharan Africa (SSA) where general healthcare resources are limited. We aimed to collaborate with individuals living with HIV aged ≥ 50 years, and community elders (aged ≥ 60 years) living with non-communicable diseases in the Kilimanjaro region of Tanzania in a health research priority-setting exercise.MethodsWe conducted structured workshops based on broad questions to aid discussion and group-based patient priority setting, alongside discussion of the feasibility of future community research engagement. Participant priorities were tallied and ranked to arrive at core priorities from consensus discussion.ResultsThirty older people living with HIV and 30 community elders attended separate priority setting workshops. Both groups reported motivation to participate in, conduct, and oversee future studies. In this resource-limited setting, basic needs such as healthcare access were prioritised much higher than specific HIV-complications or chronic disease. Stigma and social isolation were highly prioritised in those living with HIV.ConclusionsCommunity engagement and involvement in HIV and ageing research appears feasible in Tanzania. Ageing and non-communicable disease research should consider the wider context, and lack of basic needs in low-income settings. A greater impact may be achieved with community involvement.