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

Lookup NU author(s): Dr Susan Moloney, Professor Richard Walker, Professor Dame Louise Robinson, Dr Stella Paddick

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).

Abstract

© 2023, The Author(s).Objective: The 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. Methods: We 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. Results: Thirty 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. Conclusions: Community 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.

Publication metadata

Author(s): Clarke E, Anderson-Saria G, Kisoli A, Urasa S, Moloney S, Safic S, Rogathi J, Walker R, Robinson L, Paddick S-M

Publication type: Article

Publication status: Published

Journal: Research Involvement and Engagement

Year: 2023

Volume: 9

Issue: 1

Online publication date: 17/02/2023

Acceptance date: 23/12/2022

Date deposited: 07/03/2023

ISSN (electronic): 2056-7529

Publisher: BioMed Central Ltd

URL: https://doi.org/10.1186/s40900-022-00409-y

DOI: 10.1186/s40900-022-00409-y

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