This research study is a pilot project using a quantitative and qualitative questionnaire to examine the effects of the Covid pandemic and the accompanying restrictions on the lives of people living with HIV in England.
HIV is a long-term, manageable condition affecting a significant UK cohort. Significant proportions of this population are in groups that are marginalised or experience challenges in accessing health and social care, and mirror those groups experiencing disproportionate morbidity and mortality due to COVID-19.
HIV care is provided through clinical and non-clinical settings including specialist hospital care, primary care, dedicated clinics, community-based agencies, and social services. The evolution of HIV into a manageable condition has been possible due to treatments that require careful monitoring and support to be effective.
The health experience of people living with HIV is complex, including the experience of multiple conditions that interact with HIV and HIV medication.
This research, conducted in collaboration with Chelsea and Westminster NHS Trust and Positive UK, will use a tried and tested methodology of online surveying with a large cohort of people living with HIV to evaluate their experience of the COVID-19 epidemic.
While there has been some research into the clinical impact of COVID-19 on people living with HIV, there is a marked paucity of investigation into the broader impact of COVID-19 on this group in relation to their service access, general health, mental health, sexual health, wellbeing, and social health in the UK.
The focus of this research will therefore be on changes in health (physical and mental), wellbeing, service access, social connectedness, optimism, and community engagement at distinct phases of the UK experience of the COVID-19 pandemic.
Participant demographics will help us to understand the ways in which other social factors may exacerbate or ameliorate negative change (for example, living long-term with HIV, geography of residence, ethnicity, and gender).
This project seeks to map:
The findings will provide key guidance for service providers and policy makers to build preparedness and strategy as they re-establish service provision ‘post’ Covid and adapt to ongoing challenges.
While the findings from this study will be invaluable on their own and will inform policy at a national level, it will also function as a proof of concept so that the methodology may be rapidly expanded to other people living with HIV populations through other clinical and community sites in the UK.
Supporting data that provides insight into local and regional specificities could be sought through additional research funding that uses the existing research framework and recruits though other settings.
The main findings of the study will be published in both a peer-reviewed scientific paper and a community report. Further academic publication will focus on key findings and multi-factor predictors of key outcomes.
Findings will be fed back to affected community, practitioners and policymakers to ensure discussion and action. We will produce key fact sheets and a downloadable Slideshare set for practitioners and policymakers, and materials to feed back to participant groups, including non-English versions and a short animation.
Six months: Early descriptive breakdown of results, main themes, identified unmet needs.
12 months: Preliminary results to policy makers and NGOs, brief summary report to participant groups, service providers and the HIV sector.
18 months: Slideshare set, and animation developed and shared.