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

Content Provider	Springer Nature : BioMed Central
Author	Clarke, Ellisiv Anderson-Saria, Grace Kisoli, Aloyce Urasa, Sarah Moloney, Susan Safic, Ssenku Rogathi, Jane Walker, Richard Robinson, Louise Paddick, Stella-Maria
Abstract	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.
Related Links	https://researchinvolvement.biomedcentral.com/counter/pdf/10.1186/s40900-022-00409-y.pdf
Ending Page	10
Page Count	10
Starting Page	1
File Format	HTM / HTML
ISSN	20567529
DOI	10.1186/s40900-022-00409-y
Journal	Research Involvement and Engagement
Issue Number	1
Volume Number	9
Language	English
Publisher	BioMed Central
Publisher Date	2023-02-17
Access Restriction	Open
Subject Keyword	Medicine Public Health HIV HIV-associated neurocognitive disorders (HAND) Older adults Sub-Saharan Africa Community engagement and involvement (CEI) Patient and public involvement (PPI) Research priority setting Research prioritisation Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Health Professions Health (social science)

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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