Social support from peers living with HIV is of a different nature to the support received from people who do not have that direct, lived experience of the challenges of growing older with HIV, according to a qualitative study. Participants stated that they needed to be in contact with people who are “in the same boat” and who really “know what it’s like to live with HI”.
While many of the gay men interviewed were able to get this support in an informal way from friends living with HIV, heterosexual men and women tended not to have known other people living openly with HIV before their diagnosis. They had to go beyond their friendship and social networks and engage with support groups and HIV organisations.
However, there have been dramatic cuts to funding for HIV-specific services in the UK, due both to the government’s austerity policies and to a belief that generic services should be able to deal with the needs of people living with HIV. It is therefore likely to be increasingly hard for people to make contact with others who truly appreciate the challenges and uncertainties of living with HIV.
Dana Rosenfeld and colleagues at the School of Social Science and Public Policy, Keele University, and the Centre for the Study of Sexual Health and HIV, Homerton University Hospital NHS Foundation Trust, London, conducted three focus groups as well as 76 in-depth interviews with older people living with HIV for the HIV and Later Life (HALL) study. Participants were asked to describe their typical day, life history, social relations, and discuss living and ageing with HIV.
While all participants were over the age of 50 and the oldest was aged 87, half were in their early or mid-fifties and half had been living with HIV for ten years or less. Reflecting the largest groups in the UK epidemic, participants were a mix of white gay men, black African heterosexual men and women, and white heterosexual men and women. Over half lived alone, half were not in paid work and half had an annual income of less than £10,400.
Participants described a number of challenges of growing older with HIV. These included uncertainty about the impact of HIV on the ageing process and anxiety about future care needs. Many participants felt a sense of loss over disruptions to the lives and social roles that they had anticipated having in later years. Ageism appeared to exacerbate HIV stigma (for example, older people not being expected to have a sexually transmitted infection) and forming romantic partnerships was difficult.
To cope with these challenges, interviewees sought support from social connections that predated their diagnosis, such as partners, friends, family, work colleagues and neighbours. However, they could only get so much from this support.
A woman said that while her HIV-negative friends “offered a lot of support” and that “it was helpful being able to speak to them up to a point, obviously, they don’t quite understand what I’m going through”. (white woman, fifties, diagnosed in the past decade). Another interviewee said that there were “obvious differences” between those who did and did not have HIV. “It doesn’t mean relationships with non-HIV friends are any less strong, because they’re not… They’re all supportive, but the support from people who are HIV is usually a little more on the nose, a bit more aligned… If someone’s going through or has already gone through the same thing as you, then you’re going to attune and have a better empathy for those people, and vice versa.” (gay man, fifties, diagnosed in the past decade).
Living with HIV was described as being so complex and nuanced that only other people with HIV could fully understand its experience and impact. “I think to actually be able to empathise properly, you need to be in the same boat. It’s very easy to say ‘Well, you know, it must be difficult to live with it’ or ‘It must be easy to live with it’; if you aren’t in that situation, then it’s not so easy.” (gay man, fifties, diagnosed in the past decade).
“That’s the only answer: having friends in the same situation.” (white woman, sixties, long-term diagnosed).
Many gay men already had friends living with HIV before their diagnosis: “You can’t be a gay man on the gay scene and not know people that have got HIV.” (gay man, fifties, diagnosed in the past decade).
However, access to experientially based support varied across participant groups, whose communities have different histories with HIV. White heterosexual participants tended to have limited or no knowledge of HIV before their diagnosis and felt quite isolated from other people living with HIV. Black African heterosexuals knew more about HIV (many had lost friends and family to AIDS in their country of birth), but lived in a community in which stigma made it hard to talk about HIV and few were open about their HIV status.
As a result, heterosexual participants found it more difficult to make connections with other people living with HIV. Finding people who could provide this support often required knowledge of and access to specific venues and organisations. For many heterosexual participants, HIV groups were the first – and often the only – places where they could form supportive connections with ‘their own’.
Most did not know about support groups, HIV organisations and specialist websites before their diagnosis. Doctors or nurses at their HIV clinic played a key role in sharing information about these groups.
The following two African men explained the benefit of HIV-specific groups: “Here, you get a lot of moral support … White, black, anything, I try to interact with everybody, because we’re the same status, we’re one family here. We’re the same. You make friends, which is very important. You sit down, chat – even chatting for one minute, it’s enough. They’re there for you. I love to come, I don’t want to miss, and when I do miss, I feel I’m missing something.” (African man, fifties, long-term diagnoses). “Like in a group here now, you know that everybody coming here, we’re all in the same boat, and you can talk about it, but on the street, you can’t ask. You can’t just say to somebody, unless you met them in the clinic. You can’t know. It’s very difficult to know, very difficult.” (African man, fifties, diagnosed in the past decade).
When asked why they attended HIV groups, participants most often listed ‘emotional support’, ‘practical information’ (about disability benefits or immigration applications) and ‘meeting people’, followed by ‘social activities’ and ‘spending time in a safe space’.
This man contrasted HIV organisations with more generic services: “If you have HIV, there’s a tendency to stay with the HIV community because you know you’re safe there. Like here, you can talk freely. If I went to my local over-sixties afternoon tea party, I couldn’t talk about this.” (gay man, sixties, diagnosed in the past decade).
Direct contact with others living with HIV showed participants that they could live healthy and productive lives despite their age and HIV status. An African woman described stress, loneliness and homesickness following her HIV diagnosis. A friend introduced her to another person living with HIV, who took her to support groups. “I started seeing people; I said, ‘Oh, we’re in the same boat’. I started feeling relieved; I said, ‘I thought I was alone, but we are many’. When I saw those people, I couldn’t believe that they have HIV. I said, ‘Is that person sick?’ I said, ‘Well, if they’re sick, then I’ll be okay’.” (African woman, sixties, diagnosed in the past decade).
In an analysis of the study, the researchers point to Erving Goffman’s sociological analysis of stigma, published over 50 years ago. Goffman identified two types of sympathetic and supportive people who stigmatised individuals may turn to.
One sympathetic group is the individual’s ‘own’, who share his or her stigma, understand and can empathise with his experiences of it, and can provide “instruction in the tricks of the trade and with a circle of lament to which he can withdraw for moral support”. The second type is ‘the wise’: individuals without the stigma in question whose professional or family/friendship relationship with the stigmatised person makes them privy to their ‘secret life’. While accepting and supportive, they cannot provide the instruction or empathy offered by ‘the own’.
The authors find this classification useful, in addition to the more usual distinction between ‘formal’ support (provided by professionals and organisations) and ‘informal’ support (provided by families, friends and social networks). Moreover, they note that ‘peer support’ is often described as something that is only produced in settings such as support groups and community organisations. This study demonstrates that – especially for gay men – it often occurs in informal friendship networks.
“HIV-related experientially informed support from ‘the own’ is both distinctive and necessary to supplement the support supplied by ‘wise’ members of embedded networks,” say the authors. “Bundling this distinctive population’s needs into generic services for older people, which participants explicitly contrasted with HIV-specific settings providing access to ‘their own’, is inappropriate.”
However, HIV-specific non-clinical services are under threat. Since the interviews were conducted in 2011-13, funding cuts have been dramatic. According to the National AIDS Trust, in a single year funding dropped by 28%.
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.
Dana Rosenfeld, Jane Anderson