Focus Group discussion results

What did we do and who took part?
Last year, we conducted focus groups (small group discussions) 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 will be 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. The feedback from the focus groups and interviews was also used to design our intervention.

What happens next?
• The findings about the concerns and ongoing challenges being faced by people with HIV have been written up into a journal article. We can share this once it is published.
• Recruitment to the SPHERE trial will open this summer across seven HIV clinics in England.
• We will be interviewing trial participants and staff of the SPHERE trial to understand their
views and experiences of coaching sessions, including how they might be improved. The interviews will form part of a process evaluation sub-study.

A summary of the focus group discussion results can be found here.

A summary of the one to one interview discussion results can be found here.