'We are fragile, but we are strong': A qualitative study of perspectives, experiences and priority outcomes for people living with HIV and frailty.

Abstract

Advances in antiretroviral therapy have meant that the focus of HIV care has shifted to chronic disease management. The HIV population is ageing, and the prevalence of frailty is increasing. This study aimed to explore the perspectives and experiences of the impact of living with HIV and frailty and priority outcomes in relation to wellbeing and ageing. In-depth qualitative interviews were undertaken with older people living with HIV who screened positive for frailty using the FRAIL scale. Participants were recruited from a UK outpatient HIV clinic. Interviews were analysed using reflexive thematic analysis. In total, 24 people living with HIV were interviewed. Frailty was described as not being able to do the things you could and living with limitations that impacted physical, psychological and social wellbeing. Being identified as frail was not always surprising, but acceptance of this diagnosis required an understanding of what frailty means and what they can do to address it. For people living with HIV, the word 'frail' was largely acceptable when its clinical meaning was explained. However, participants questioned whether a different term is needed if this is a new 'HIV-associated frailty'. Priority outcomes were slowing the progression of frailty, retaining independence and being treated holistically. When talking about frailty with people living with HIV, professionals need to balance honesty and sensitivity and provide clear information about the meaning and impact for the person. Holistic management plans must recognize the physical and psycho-social impact of frailty and prioritize slowing its progression and reducing its impact on independence.