One to one interviews Results!
Exploring strategies to support the health and well-being of people living with HIV
Background to the project
People living with HIV in the UK on treatment have normal life expectancy and receive excellent HIV clinical care. However, this care does not necessarily help with some social or psychological issues that people may face (for example, housing, employment or mental health problems).
The NHS Long Term Plan (https://www.longtermplan.nhs.uk) aims for people with long-term health conditions, like HIV, to be fully involved in decisions about their health and wellbeing. It recognises that ‘what matters to someone’ is not just ‘what’s the matter with someone’. Health and wellbeing coaching, social prescribing and community-based support could help people to better manage their own health and improve well-being but have not been tested yet in people with HIV in the UK.
The Needs Informed model of Care for people living with HIV (NICHE) (www.niche.ac) is a five-year NIHR funded research programme aiming to design a new, person-centred model of care to improve the health and well-being of people living with HIV. This includes the design and testing of a health coaching and social prescribing intervention in a trial.
What did we do and who took part?
Last year, we conducted focus groups with people living with HIV and interviews with clinical and non-clinical workers who support people living with HIV. We spoke with 37 people living with HIV and 20 clinical/non-clinical workers. We wanted to understand the challenges and concerns of people living with HIV in England and what ‘living well’ means. We also asked for feedback to help us design a health and well-being coaching intervention. This intervention is being tested in a randomised controlled trial called SPHERE within the NICHE programme. The aim of the trial is to see whether the intervention improves health and well-being in people with HIV.
What did we find?
People with HIV described living well to include:
• living in an unrestricted way (for example, experiencing life in the same way as other people)
• a desire to live fulfilled and satisfying sex lives without fear of stigma
• aspirations of choice (or autonomy) in health and healthcare (for example, having the self-confidence to advocate for the services you need)
We found that stigma and discrimination continue to affect the health and well-being of people with HIV. Living well means living beyond an HIV status and having good social support (from friends, family and loved ones) and supportive intimate relationships so people age well with HIV and live long, fulfilled and happy lives.