Academic journal article Health Sociology Review

Vital Scientific Puzzle or Lived Uncertainty? Professional and Lived Approaches to the Uncertainties of Ageing with HIV

Academic journal article Health Sociology Review

Vital Scientific Puzzle or Lived Uncertainty? Professional and Lived Approaches to the Uncertainties of Ageing with HIV

Article excerpt

The ageing of the population of people living with HIV (PLWH1) is spurred by increasing HIV acquisition among those aged 50 and above and by the introduction of effective antiretroviral therapy that has moved HIV from a fatal to a potentially chronic condition (Bhavan, Kampalath, & Overton, 2008; Kearney, Moore, Donegan, & Lambert, 2010). This shiftis increasingly recognised and researched within the realms of clinical medicine, epidemiology, and health policy, and is slowly finding its way into the social scientific literatures. Yet, despite a substantial social science literature on HIV (e.g., Doyal & Anderson, 2005; Doyal & Doyal, 2013; Pierret, 2007; Rosenfeld, Bartlam, & Smith, 2012; Thorpe, 2008), empirical research into the lived experience of HIV in older age (Brennan, Karpiak, Shippy, & Cantor, 2010; Chesney, Chambers, Taylor, & Johnson, 2003; Emlet, Tozay, & Raveis, 2011; Foster & Gaskins, 2009; LeBlanc, 2011; Owen & Catalan, 2012; Sankar, Nevedal, Neufeld, Berry, & Luborsky, 2011) has yet to be taken up by medical sociologists and social gerontologists. In keeping with medical sociology's long-standing interest in the lived experience of chronic illness (Charmaz, 1991; Charmaz & Rosenfeld, 2010; Lawton, 2003; Strauss & Glaser, 1975), in which uncertainty is a central theme, our paper draws on interviews with those living with HIV in later life, as well as those working with them, to uncover how these various participants understand the nature and consequences of this new phenomenon, and whether their understandings and approaches vary according to the individual's connection to it.

All of those whom we interviewed (older PLWH, and a range of stakeholders in the HIV and ageing arenas) understood the interplay between ageing and HIV as complex and incompletely understood, were uncertain about how HIV would play out in later life, and called for more research into ageing with HIV - a position shared by HIV researchers more widely, who have recently questioned the validity of claims that PLWH are prone to 'premature' and 'accelerated' ageing (see e.g., High et al., 2012; Justice et al., 2012; Justice & Braithwaite, 2012; Reiss, 2012). Moreover, both health and other professionals and older PLWH stated that these uncertainties were largely due to the novelty of this population: Neither health and other professionals nor older PLWH had routinely encountered ageing with HIV, either professionally or biographically. In short, clinicians lacked precedent, and older PLWH lacked a biographical benchmark. All participants used accounts - 'statement[s] made by a social actor to explain unanticipated or untoward behaviour' (Scott & Lyman, 1968, p. 46) - to frame their lack of understanding about the ageing/HIV interplay by reference to the limited information that existed, establishing their own professional or lived uncertainties as a feature of the current landscape rather than a product of their own failure to avail themselves of knowledge about ageing with HIV.

Given their position of having to negotiate ageing with HIV, either as health or other HIV-focussed professionals, or as people ageing with HIV, within an essentially uncertain terrain, these speakers were, by necessity, engaged in what Fox (2002), when writing about allegedly 'risky behaviours,' termed 'experiments in living': Here, taking tentative, exploratory steps as they navigate 'uncharted territory,' be it scientific investigation, professional treatment and practice, or interpreting and responding to unprecedented physical changes. But despite this shared vocabulary of accounts, and shared experimental mode of practice, the extent and meaning of these uncertainties were spread across a continuum of emphasis, from purely clinical gaps in knowledge regarding the HIV/ ageing connection (which, through the lens of scientific progress, would eventually be filled through research) to the lived reality of uncertainty underpinning life with HIV in later years. …

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