‘The own’ and ‘the wise’ as social support for older people living with HIV in the United Kingdom

Abstract

As the HIV population ages, how the ageing and HIV experiences intersect to shape the lives of older people living with HIV (PLWH) becomes an increasingly pressing question. This multi-method study investigated social support, mental health and quality of life among 100 older PLWH in the United Kingdom. Drawing on data from three focus groups and 74 life-history interviews with older (aged 50+) White men who have sex with men (MSM), and Black African and White heterosexual men and women, living with HIV, we explore participants’ distinctions between, evaluations of and access to sources of social support. Participants distinguished between support from the HIV-negative (Goffman's ‘the own’) and experientially based support from other PLWH (Goffman's ‘the wise’), and viewed the former, while valuable, as needing to be supplemented by the latter. Furthermore, access to experientially based support varied across participant groups, whose communities had different histories with HIV/AIDS and thus different degrees of knowledge about HIV and avenues for connecting to other PLWH. Thus, social support among older PLWH cannot be neatly divided into ‘formal’ and ‘informal’ domains, or fully appreciated by applying traditional social support measures, including, in the context of health conditions, ‘peer support’ created through formal service organisations. Rather, older PLWH's own distinctions and evaluations better illuminate the complexities of social support in the context of ageing with HIV.

Ageing with HIV: Medicine Optimisation Challenges and Support Needs for Older People Living with HIV: A Systematic Review

“…Moreover, there may be unmeasured confounding factors. Pharmacy refill data may overestimate adherence as patients may be collecting their medications without administering them Rosenfeld et al, 2020 (UK) [ 41 ] n = 100 Median = 56 years (50–87) Hospital and community Focus groups, life-history interviews, and surveys were used to collect data Distinguishing support from HIV-negative (Goffman's 'the wise') people and support based on experiences of PLWH themselves (Goffman's 'the wise'), participants viewed the former as requiring supplementation by the later. Experientially based support varied across groups A limitation to this study is that focus groups may have led to social desirability bias or moderator bias Gardenier et al, 2010 (USA) [ 80 ] n = 56 M = 50.5 years (SD = 8.5) Community (AIDS day health care program) Information was extracted from medical records then reviewed and corrected by participants.…”

“It’s Still in the Test Tube and Finding out How the Experiment Ends… ”. A Qualitative Study on Health and Aging in Older Gay Males Living with HIV in England

“…Participants have highlighted how the link between HIV and aging is not clear and how this is affecting their aging process or vice versa as also find in the literature. 31 , 40 Indeed, participants reported the feeling of how the intersection between HIV, sexuality and aging is still in development and more studies are needed to explore the intersection of those elements from a medical and psychosocial point of view. It is important that the interaction of HIV and aging is studied and analysed from multiple perspectives to answer clearly to the doubts that both healthcare professionals and patients have in relation to aging and HIV.…”

How older people living with HIV narrate their quality of life: Tensions with quantitative approaches to quality-of-life research

“…While living and ageing with HIV introduces distinctive circumstances, concerns, and experiences (e.g., intersections between HIV-related stigma and ageism, premature development of comorbidities - see Rosenfeld & Anderson, 2018 ; Rosenfeld, Catalan, & Ridge, 2018a ; Emlet, 2006 ) that shape OPLWH's perceived QoL, we suggest that our findings are relevant for younger PLWH and, indeed, for other groups, as they highlight quantitative measures' inability to capture the biographical and interpretive work that narrative approaches are designed to capture – work that reflects the complexities of defining and evaluating QoL itself.…”

“…This article draws on 74 life-history interviews with men who have sex with men (MSM) and black African and white heterosexual men and women, aged 50+ and living with HIV in England (we have elected not to share our primary data), gathered in 2011–2013 as part of a two-year study into the mental health, QoL and social support of PLWH aged 50+, living in England (see Rosenfeld & Anderson, 2018 ; Rosenfeld et al., 2016 ). With continuous guidance from a community advisory board comprised of PLWH, we conducted three focus groups with OPLWH, then gathered life-history interviews with 76 OPLWH living or securing HIV services in the London area (we excluded two interviews from qualitative analysis due to technical issues but included their completed surveys in the survey data set).…”

“… Faircloth et al., 2004 ; Rosenfeld, 2006 ), and manage ( Townsend et al., 2006 ; Zinn, 2005 ) their experiences of illness, (re)constructions of self ( Charmaz, 1991 ), and recovery approaches ( Ridge & Ziebland, 2006 ). Research into HIV narratives have uncovered a range of factors that shape the lived experience of HIV diagnosis, social relations and relationships ( Rosenfeld & Anderson, 2018 ), and disclosure ( Rosenfeld, Ridge, Catalan, & Delpech, 2016 ), and ageing with HIV. These findings include the enduring impacts of having lived through the AIDS epidemic in younger years, with memories of the epidemic before effective medications shaping experiences of living with HIV in later years and in the HAART era ( Catalan, Ridge, Cheshire, Hedge, & Rosenfeld, 2020 ; Halkitis, 2013 ).…”