Introduction:
This research project explores the issues and challenges people living with HIV (aged 50 years and over) may experience if they need care and support in later life and support with housing options. The number of older people living with HIV is increasing in line with the increasing numbers of older people in the UK. We know from research carried out in mostly other countries outside the UK that some older people with HIV experience stigma and discrimination when accessing care services and support for older patients. We don’t know much about the situation in the UK or what the experience may be for older people with HIV seeking social care support or support with housing and independent living. Our study is based in Wales, which has its own HIV Action Plan and Strategy for Older People.
Background:
This study aims to identify the key issues of care, housing, and ageing for PLWH aged 50 and above in Wales, from the perspectives of those with lived experience and health and social care professionals providing direct support.
Our research questions are:
- What are the ageing experiences and concerns of PLWH aged 50 and above (50+)?
- What are the housing and social care needs and priorities for PLWH aged 50+?
- What are the priority areas for practice and future research?
We held a meeting in the summer of 2024 with stakeholders (including people living with HIV) about this topic which has helped inform this bid.
We plan to recruit and work with a small group of people living with HIV as co-researchers. This group will help with designing research tools, doing some interviews with other people with lived experience, and inputting on how we look at the data and identify key findings.
Study methods and activities:
There are two work packages.
Work Package 1) A scoping review will be conducted to map the existing literature on the topic, identifying key concepts, types of evidence, and specific gaps in the research.
Work Package 2) A DELPHI Study: We will implement a three-stage Delphi method to identify and prioritise key issues affecting PLWH aged 50 and above, as well as those providing direct support. Data collection will be assisted by co-researchers who will be individuals living with HIV who will be trained to assist with interviewing and data analysis.
Stage 1. Identifying Issues: We will conduct semi-structured interviews to identify key issues faced by people ageing with HIV. The study population will include PLWH aged 50 and above residing in Wales (n=25) and those providing direct support, including HIV specialist workers, social workers, and social care support staff (n=24).
Stage 2. Prioritising Key Issues: The second stage will focus on prioritising the key issues identified in Stage 1 through a workshop and an online survey.
Stage 3. Consensus Meeting: The third stage will involve a consensus meeting to review and finalise the prioritised items. This meeting will provide a structured forum for stakeholders to discuss each issue in detail, aiming to reach a consensus on the most critical issues and develop actionable strategies.
CARE affiliation:
This project is CARE-led in collaboration with the Centre for Trials Research at Cardiff University.
Research Leads:
Prof Paul Willis – co-lead, CARE, Cardiff University
Dr Adam Williams – principal investigator, Centre for Trials Research, Cardiff University
Research Members and collaborations:
Dr David Gillespie, Principal Research Fellow / Co-Director (Wales Applied Virology Unit) – co-investigator
Mr. Neil Llewellyn-Griffiths, UNITY Counselling & Psychotherapy – public co-applicant
Funder(s): Health and Care Research Wales
Funding amount: £285,879.00
Project start date 1st October 2025
Project end date: 30th September 2027
Findings:
Ongoing