HIV and ageing Health Sociology Review online version

VITAL SCIENTIFIC PUZZLE OR LIVED UNCERTAINTY? 1

* This is a pre-edited/pre-publication version of a paperwhose definitive version is available at:

Rosenfeld, Dana and Ridge, Damien T. and Von Lob,Genevieve, on behalf of the HALL team (2014) Vital scientific

puzzle or lived uncertainty? Professional and lived approaches to theuncertainties of ageing with HIV. Health Sociology Review, 23 (1).

pp. 20-32. ISSN 1446-1242

Official URL:

http://hsr.e-contentmanagement.com/archives/vol/23...


Abstract

The ageing of the HIV population is unfolding within the context of a politicised history of medical care, medical breakthroughs changing HIV from a fatal to a chronic illness, and a long-standing treatment partnership between medical professionals and HIV patients. This article draws on in-depth interviews with those living with HIV in later life (aged 50 and over), as well as those working with them, to uncover how these various actors 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 informants describedthe interaction between ageing and HIV as complex and incompletely understood, and accounted for their own uncertainties about this interplay as due to a global knowledge gap produced by the novelty of ageing with HIV. In these data, working in the area of, or being personally affected by, ageing with HIV emerged as ‘experiments in living’, with those variously involved in the phenomenon forced to take tentative, exploratorysteps while navigating ‘uncharted territory’. Yet, the poorly-understood nature of the ageing/HIV interplay was framed differently, with clinicians and scientists constructing it as a temporary gap in technical knowledge (a scientific puzzle), and non-medical stakeholders and older people living with HIV describing it as an anxiety-provoking source of chronicuncertainty permeating daily life. These differences and similarities can help us to reformulate what medical sociology has often constructed as a static ‘gulf’ between the clinical and the life worlds as, instead, gravitational pulls towards clinical and experiential dimensions of chronic illness as it unfolds in later life.


Keywords: HIV, ageing, chronic illness, uncertainty, sociology, lay and medical knowledge, lived experience, accounts

This research was funded by the Lifelong Health and Wellbeing (LLHW) programme, a funding collaboration between the UK research councils that enables them to jointly fund research into what influences health and wellbeing in older age. LLHW is managed by the Medical Research Council on behalf of the funders. The research was also supported by Keele University.

Dana Rosenfeld, Damien Ridge, and Genevieve Von Lob, on behalfof the HIV and Later Life Team*

*Professor Jane Anderson, Dr. David Asboe, Dr. Jose Catalan, and Dr. Valerie Delpech

The ageing of the population of people living with HIV

(PLWHi) 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 shift is

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; LeBlanc 2011; Emlet, Tozay,

& Raveis, 2011; Foster & Gaskins 2009; 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 & Rosenfeld

2010; Charmaz 1991; 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 & Braithwaite 2012; Justice et al. 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, 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 et al (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. Specifically, older

PLWH listed premature ageing; premature mortality; and

difficulties of distinguishing between the physical effects of

ageing and of HIV and, therefore, of knowing when to seek

medical advice, and from whom, as core features of their


experience with HIV. Thus, despite a long-standing and

distinctive concordanceii between clinicians and patients with

HIV (see below), these findings signal enduring perspectival

differences whose impact on the emerging landscape of HIV and

ageing merit consideration as the social and medical needs of

this growing population increasingly overlap.

The Voice of Medicine versus the Voice of the Lifeworld:

Medical Sociology and the Clinical/Lay Relationship

From medical sociology’s origins, the distinctive

approaches to, and experiences and management of, illness

adopted by medical professionals on the one hand and patients

on the other has been a core topic of investigation. This

focus began with Parsons’ (1951) ‘competence gap’ between

allegedly expert and scientifically knowledgeable clinicians

and scientifically inept patients, later developing into a

more moderate, and even critical, documentation of patients’

experiences of this division (e.g. Mishler 1984), this gap’s

historical construction by medical professionalization and

more wide-ranging forms of governmentality and regulation

(e.g. Foucault, 1973; Petersen & Bunton, 1997), and its


continued reproduction and elaboration in clinical encounters

(e.g. Maynard, 1989; Strong, 1979; Waitzkin, 1989).

These seminal works established the gulf between clinical

and lay knowledge and experience as medical sociology’s

definitive concern. Later studies documented both patients’

use of lay understandings and techniques to manage their

chronic conditions (e.g. Anderson & Bury, 1988; Gregory, 2005;

Prout, Hayes & Gelder, 1999), documenting both the rationality

of these lay practices and the lack of dialogue between lay

and professional approaches and knowledge within the doctor-

patient relationship (see e.g. Heritage & Maynard, 2006;

Pilnick & Dingwall, 2011). But the more patient-centred

approach to health care developed over recent years (see e.g.

Hughes, Bamford & May, 2008; Marinker, 1997), patients’

increasing sophistication and knowledge due to the rise of

patient movements (Klawiter, 2005; Scambler & Kelleher, 2006;

Williamson, 2008) and to internet-based medical information

(Ayers & Kronenfeld, 2007; Barker, 2008; Gillet, 2003;

Ziebland, 2004), and the increasing role of corporate factors

in health care delivery (e.g. Bury &Taylor, 2008; Vanderminden

& Potter, 2010) have complicated this purportedly strict


division between clinical and patient knowledge. Moreover, the

social and medical histories of HIV reflect a more

cooperative, egalitarian relationship between clinician and

patient, inspired by the pressing need for information and

treatment during the epidemic’s early years, when the clinical

world found itself treating severely ill PLWH with little if

any firm knowledge of HIV or of how to treat it (Bayer &

Oppenheimer, 2000). Indeed, many clinicians acted, and still

act, as HIV activists and/or advocates engaged in wide-spread

HIV causes that are often as political as they are clinical.

Thus, while the strict division between patient and clinical

knowledge, concerns, and approaches that are often invoked

within related literatures is blurring in the face of the

changes briefly mentioned above, the world of HIV care is,

arguably, one of the clearest examples of the dynamic

interplay between clinical and experiential dimensions of

chronic illness.

Yet, distinctive orientations to any illness, and, in

this case, HIV, do endure, as social actors approach these

from the standpoint of their own lives, actions, and

expertise. Thus, without presupposing a priori that this


professional/lay split necessarily dominates understandings of

ageing with HIV, we are mindful that these speakers’ accounts

are likely to engage with aspects of the phenomenon that are

most relevant to their own professional and/or biographical

relationship to HIV in later life. This is especially likely

when informants are asked, at interview, to provide their own

understandings of the domain. We thus explore these interview

data with sensitivity to the presence of distinctive

discursive frames that signal informants’ understandings of

ageing with HIV. Our analysis of stakeholder interviews and

life-history interviews with older PLWH shows that uncertain

connections between ageing and HIV are, in fact, framed and

experienced in very different ways, specifically, as a

scientific problem to be solved through research, and as a

source of anxiety permeating present and imagined future

lives, with older PLWH viewing age and life course location as

factors in the experience of HIV in later years.

Methods

These data were collected throughout a two-year research

project investigating how social support, mental health, and

quality of life intersect within the lives of PLWH aged 50 and


above. The project unfolded over several stages, from

composing a community advisory board iii advising us on ethics

and research procedures, to stakeholder interviews, focus

groups, and, finally, life-history interviews and mental

health surveys conducted with older PLWH.

After securing ethical approval, the team’s research

associate interviewed 17 stakeholders, using a semi-structured

interview guide to capture views on the challenges that older

PLWH face and any obstacles to developing effective policies

and services to address them. These stakeholders included

health professionals (6); non-clinical HIV service providers

(3); academics specialising in HIV (2); policy makers (4 -

three in the HIV and one in the ageing arenas); and HIV

activist/advocates (2)iv. Three stakeholders were of Black

African heritage (OBAH), and at least five were PLWH. These

interview data shaped our focus group and life-history

interview topic guides.

Life-history interviews posed open-ended questions

designed to capture the everyday lives of older PLWH; personal

histories before and after HIV diagnosis; social relations,

networks, and support; lived experience of HIV; use of


community support groups and organisations, if any; concerns

and plans for the future; sense of the distinctive impact of

HIV on ageing, and of ageing on the experience of HIV; and

quality of life. As the study progressed, and adhering to

grounded theory processes, the interview schedule was adapted

to further explore emerging concerns (e.g. employment, long-

term care).

We sought a purposive sample (Curtis, Gesler, Smith, &

Washburn 2000) of 90 older PLWH, both long-term (LT) and recently

diagnosed (RD) - those living with HIV for more or less than

ten years, respectively. This desired sample reflects the

current older PLWH UK population’s demographic composition in

terms of sex, ethnicity, sexual orientation, and years since

diagnosis. Given recruitment challenges, the secured sample

consisted of 21 LT diagnosed, and the following RD PLWH: 22

men who have sex with men (MSM); 9 heterosexual men OBAH, 11

heterosexual women OBAH, eight white heterosexual men, and

five white heterosexual women. Informants’ ages ranged from

50-86, and length of diagnosis from 1-28 years. In keeping

with our grounded theory approach, we halted recruitment of RD

MSM when we reached saturation (our initial target was 30 of


these informants). Moreover, we did not reach our target

number of 12 male and nine female RD white heterosexuals – a

notoriously difficult group to recruit.

We recruited these older PLWH through London-based NHS

HIV specialist outpatient clinics and HIV-specific support

organisations. In HIV clinics, HIV nurses and physicians pre-

selected patients who fitted the study’s inclusion criteria

and whom they considered sufficiently robust to interview

(i.e. not suffering from an acute clinical problem) and

informed them of the study. Patients approaching the

researcher were given information packs detailing the study

and clarifying the interview procedure. A similar procedure

was used in HIV-specific service organisations, with staff

searching their service user data bases for potential

participants. After obtaining written consent, interviews took

place in private spaces within clinics, interviewees’ homes,

or rooms in HIV community organisations.

Interviews lasted between 60-120 minutes, and were

digitally recorded, then transcribed verbatim. Identifying

information (i.e. names, places of birth and residence,


occupation, and clinic name) were changed or removed before

transcripts were coded and analysed, using NVivo coding.

To make sense of the data, we conducted thematic analysis

– identifying both self-evident patterns explicit or manifest

in the data, and implicit, or ‘latent’, meanings uncovered by

the analyst (Boyatzis, 1998). We used a ‘hybrid’ analytic

method combining inductive and deductive coding construction

(Fereday & Muir-Cochrane, 2006). In short, we devised codes in

response to themes that had shaped the project but preceded

actual data collection (deductive) and to themes that emerged

in the course of the research and through close readings of

the data (inductive). Taking a ‘modified constant comparison’

approach to compare bits of data to other (similar and

different) bits of data (Dye, Schatz, Rosenberg & Coleman,

2000; Glaser, 1994), we drew meaning from the data, developed

concepts, and linked them to other emerging concepts in the

data, as well as to the project’s core concerns (e.g. lived

experience).

HIV + Age = X

The uncertain interplay between ageing and HIV was both raised

as a topic by all informants and approached in one of two


broad ways: as a pressing scientific puzzle, in the case of

HIV clinicians, and as an enduring source of existential

uncertainty, in the case of older PLWH and non-clinical

stakeholders. These approaches represent different frames of

understanding the uncertain HIV/ageing interplay: a primarily

scientific one, in which uncertainty becomes a scientific

puzzle, or a primarily experiential one, in which uncertainty

is expressed through such themes as premature ageing,

premature mortality, the inability to distinguish the symptoms

of ageing and HIV, and the practical quandary as to how to

interpret and manage physical changes. Again, these were not

competing frames in the classic ‘medical versus lifeworld’

sense, but gravitational pulls towards the clinical or

experiential dimensions of ageing with HIV – pulls exerted by

the professional and/or biographical relationship of the

speaker to ageing with HIV. But underlying these differences

was a relatively stable set of accounts for the individual

speaker’s limited knowledge of how HIV and ageing inter-

relate. In accounting for their own limited understanding of

this relationship, these speakers referenced a general lack of

knowledge regarding ageing with HIV. These accounts


neutralised the possibility that their personal ignorance was

due to a personal failure to ‘keep up with’ current

development in their field, in the case of professionals, or

to their inability to ‘read’ their own bodies and to link

physical changes to ageing, HIV, or other factors, in the

case of older PLWH.

Uncertainty as Scientific Puzzle

Regardless of their relationship to HIV, all informants

described older PLWH as physically weaker and sicker than

their HIV-negative contemporaries, on the one hand, and

younger PLWH, on the other. But informants were unclear as to

what exactly was responsible for these differences, in which

older PLWH purportedly suffered earlier onset, and higher

rates, of conditions normally seen in much older persons (e.g.

diabetes, ischemic heart disease, osteoporosis, and dementia).

Clinical and policy stakeholders suggested such causal factors

as length of time spent living with HIV, and thus as the

product of the intersection between HIV and ageing; long- or

short-term side-effects of HIV medication; and long-term

consequences of lifestyle behaviours which are more common in

PLWH compared to HIV negative people (smoking, alcohol and


recreational or injecting drug use etc.) One health

professional, for example, stated that:

[W]hen you’ve got a chronic illness, whether it be HIV or

hepatitis or diabetes, you may be looking at ageing earlier

on, and that could be due to the co-morbidities, it could

be due to inherent effects of, at least in HIV and

hepatitis, the agent itself, or it could be the lifestyle

of the people who have been involved or affected by HIV.

Another health professional spoke in almost identical terms,

saying ‘It is unclear, biologically, whether some of the

changes occurring with people who are older with HIV are to do

just with ageing per se, to the effects of the very powerful

antiretroviral drugs, or whether HIV itself is playing a role

in some of those changes’.

Despite this admitted lack of clarity, health

professionals spoke with more certainty about the interactions

between ageing, HIV, and HIV medication than did other

stakeholders and older PLWH, whose accounts we consider below.

For example, one clinician cited the ‘scientific basis of

people ageing faster’, attributed to ‘a mixture of genetics,

the effect of HIV on the immune system and probably chronic


use of antiretrovirals’, and new scientific findings that

could help to predict clinical outcomes of ageing with HIV.

This is not to say that this clinician did not appreciate the

lived consequences of these uncertainties for older PLWH. On

the contrary, he noted that despite PLWH having ‘a relatively

good quality of life’ and experiencing ‘healthcare issues’

that are ‘no worse, certainly, than somebody with chronic

diabetes’, there remains ‘an awful lot not known, there’s some

uncertainties about the future’.

Accounting for the knowledge gap

These clinicians’ characterizations of the ageing/HIV

interface as uncertain appeared alongside accounts explaining

that these uncertainties were due to the current state of

scientific knowledge rather than to the inherent limits of

scientific investigation or to the commitment of the

scientific community. Several clinicians explained that

uncertainties regarding the clinical interface between ageing,

HIV and HIV medication were at least partly due to the

relative novelty of scientific research into HIV, itself

grounded in the only recent emergence of older PLWH. As one

noted, health providers ‘used to tell patients 30 years ago


that we’re dealing with an era of uncertainty, and in a way 30

years later not a lot has changed, because we still don’t know

what the future holds. We never thought that we’d be treating people that

were living longer or be over the age of 50 ’. Another clinician said that

‘Compared to, say, diabetes where we have many, many years of

experience of what happens when you get old with diabetes, we

have no experience with HIV, so it’s a new phenomenon, and

therefore somewhat interesting’. This new phenomenon, he

further explained, meant that scientific knowledge had only

recently begun to emerge, allowing scientists to venture

explanations for ‘the problem’:

People have been somewhat scared to attribute where the

problem is coming from. I think, increasingly, there’s a

lot of science about mitochondrial issues, bone issues,

liver and brain issues, the actual effect of the virus and

its underlying science links to ageing. Prior to that, I

think people were, well, is it to do with this? Is it to do

with that?

In these and similar statements by clinicians, the lack

of scientific knowledge of the HIV/ageing interplay is due not

to the phenomenon’s ultimate impenetrability, but to the


absence of a scientific opus on which to draw, as ageing with

HIV is both a new reality and a new scientific field. Yet

these speakers are confident that clarity will emerge as

scientific investigation progresses. These emphases pull

uncertainties regarding ageing with HIV away from its

subjective burden and into the realm of the scientific –

indeed, even more specifically, into the realm of clinical

medicine, a realm which will, according to these speakers,

build on emerging scientific findings to ‘solve the puzzle’ of

ageing with HIV.

Uncertainty as Lived Experience

While health professionals generally invoked this

uncertainty without reference to its experiential dimensions,

other stakeholders, and older PLWH, explicitly characterised it

as underpinning the lived experience of ageing with HIV. Here,

uncertainty emerges as an essential, if not defining, feature

of living with HIV in later years.

Like the clinical stakeholders cited above, these non-

clinical stakeholders and older PLWH characterised ageing with

HIV as ‘a new phenomenon’ (a 58-year old LT white European

MSM), ‘new territory for all of us’ (a 52-year old white


British MSM) and ‘uncharted waters, as until relatively

recently HIV people didn’t grow old’ (a 58-year old RD white

British MSM), and, indeed, as an unknown quantity requiring

clinical and other forms of research. As one policy maker

phrased it:

The fact is, it’s still a condition that is relatively new,

and we don’t know. Some of the learning about the condition

is still emerging. We don’t know how it’s going to affect

people, particularly older people as they age or if they

happen to be diagnosed at an older age.

But for these speakers, the uncertainty over how HIV would play

out in later years was less of a scientific question to be

answered, although of course it was that as well, than a

chronic source of anxiety shaping daily life. One non-clinical

stakeholder stated that while many PLWH integrate their HIV

into their lives through medication, so that ‘it’s just living

with a chronic illness’, ageing with HIV still ‘creates a lot

of anxieties’. Specifically, the ‘idea that somehow, HIV mimics

ageing and that the two sort of feed off each other and make

things more difficult’ made ageing with HIV particularly


challenging. One older stakeholder living with HIV mentioned

‘the idea that HIV makes ageing worse and vice versa’:

I think there was that sort of idea of premature

ageing, or accelerated ageing. I think the jury is out

on this, but I think that’s a sort of anxiety for a

lot of people. I think that there is the potential for

other age related illnesses. There’s definitely a

concern about cancers, and all those sorts of things.

There’s a whole plethora of things that can cause a

level of anxiety about someone’s physical health.

This account identifies a range of subjective concerns on

the part of older PLWH: their own ignorance about the

intersection between ageing and HIV, and of the quality of

life they can expect in old age, and the spectre of premature

and/or accelerated ageing, meaning the early onset of ‘a

plethora’ of health-related conditions. Thus, unlike the more

scientifically-inflected accounts above, this statement

identifies ‘anxiety’, ‘concerns’ and ‘ideas about’ the

potential of accelerated ageing – terms that invoke the

emotional and psychological impact of uncertainty on those

living the ageing with the HIV ‘experiment’.


The themes through which this lived uncertainty was

articulated are premature ageing, premature mortality, symptom

identification, and health practices. Moreover, just as non-

clinical stakeholders accounted for their own ‘knowledge gap’

regarding the HIV/ageing interplay in ways that maintained the

validity of the scientific enterprise, so did older PLWH and

non-clinical stakeholders account for their own knowledge gap

in ways that maintained their own identities as reflexive,

committed actors – a theme we visit below.

Again, a central theme in these data was that of premature

ageing – the emergence of conditions and/or changes typically

associated with older groups at younger-than-expected ages. An

HIV policy maker described ‘a big inception of uncertainty at

the moment around, does HIV itself age you prematurely, is it

the way that people have taken treatments, is it side effects,

what is it?’, adding that while ‘HIV creates uncertainties,

now growing old with HIV’ introduces even more uncertainty:

‘it’s seriously uncharted territory’. For some informants, the

spectre of premature ageing due to HIV created a heightened

self-consciousness and sense of fragility. As a 50-year old LT

white heterosexual woman, stated, ‘Maybe it’s just because I


have just become 50, but I do feel as if I have aged quite a

lot recently’, explaining that she didn’t know if that was due

to the stress of raising her children or to the long-term

consequences of HIV medication. This suspicion of her own

premature ageing, and the uncertainty as to its cause, is ‘why

I feel slightly more fragile, more vulnerable again, probably

more like I did right at the beginning’ of her HIV career.

In these non-clinical accounts, the optimism expressed by

some clinicians – that science will, through appropriate

funding and research, solve these questions – is much less

apparent. Rather, these accounts highlight the lived

experience of uncertainty as it unfolds within personal,

idiosyncratic lives, as in the case of the LT white

heterosexual woman above. Indeed, according to an older HIV

activist living with HIV, experiencing these uncertainties

without the ability to plan for a range of HIV-related

contingencies as they unfold in later life, older PLWH ‘live

with that burden of “am I going to drop dead?”’ This concern

over premature mortality is particularly deeply felt among such

long-term survivors as a 52-year old LT white British MSM,

whose long-term HIV status, and his having lost his mother and


his partner in the past few years, has made him keenly aware

of ‘this mortality thing’:

I’m thinking, well, I’m 61 this year, and I can’t

imagine… but I might have ten more years of being okay.

No one knows, so that’s a fear. Because I’ve had this

virus for so long that it’s got to end. It’s like it

hangs over you. I do feel that a lot more as I become

older. … So I think it’s the fear of how much longer

have I got? Because it’s been hanging over for quite a

long time, and I do have these troughs and peaks, and

I’m thinking, well, will I get one more peak?

Thus, in contrast to the image of a steady progression towards

scientific discovery invoked by clinical stakeholders, this

informant depicts his life with HIV as a series of ‘peaks and

troughs’, with the uncertainty of how HIV will play out in his

later years ‘hanging over’ his present and his future and

obscuring a clear vision of his future.

Moreover, concerns over premature mortality are amplified

when they unfold within the context of social and family

relations. In the words of an allied health provider working

closely with older PLWH, ‘I think women worry about dying and


leaving their children. They’re trying to bring up a family’;

a 50-year old LT woman OBAH, described ‘thinking, well, how

long am I going to live? And then looking at the children we

are bringing up, how will the children cope, and how are we

going to leave the children? What support is there for them?’;

and a 54-year old RD heterosexual male OBAH explained that

‘the fear we have is for the future: your extension of your

life, living longer and seeing the children growing up’.

Lay and clinical reasoning about the uncertain interplay

between HIV and ageing was described in similar terms when

discussing the difficulties of distinguishing between aspects of ageing

more generally and physical symptoms of HIV and/or HIV

medication – what one stakeholder termed ‘the uncertainty of

identifying symptoms: are they related to HIV or to ageing?’

An HIV policy maker described the ‘temptation’ among PLWH to

‘to blame everything on the HIV’ adding that ‘actually, ageing

happens, but if you’re fairly isolated or most of your friends

have got HIV, you don’t have that yardstick’. Thus when her

‘contemporaries say, oh, I wake up in the morning and I ache

all over, it’s this new treatment, I go, no love, you’re in

your 50s, I ache too. It’s not your HIV – that’s what


happens’. A female HIV activist living with HIV described the

chronic challenge of discerning whether particular ailments

were HIV-related:

Of course when we are ageing, we get other ailments.

What is the interaction? How do you even determine

those interactions with HIV? How do you know? I didn’t

know when I was starting to have hot flushes. I was

like, why am I hot all of a sudden? And it was not that

kind of day to be that hot and it just dawned on me and

I’m thinking, oh my God, I’m that age!

Similarly, a 57-year old RD white heterosexual male described

‘having to go through all the wondering when I get niggles and

pains and aches, is it just because you’re getting older, or

is it to do with the virus?’ – a question made all the more

difficult to answer ‘now, because I’m generally quite well. So

it’s hard to tell. I don’t know whether it’s age related or

the virus’.

Taken together, these uncertainties ground concerns over

the future. As a 62-year old LT white heterosexual male put it,

‘What’s it going to be like in the future? I don’t know’. But

they also raised concerns over the immediate present, as


confusion over the source and nature of physical changes

introduced a specific dilemma regarding when to seek medical

advice, and from whom. Uncertainty over the meaning of

physical changes thus lead to uncertainty over which health

practices to pursue. Informants implied that this dilemma was, if

not unique to older PLWH, at least exacerbated by their HIV

status in later life. An older HIV activist living with HIV

described reading ‘a lot about what could possibly happen’:

[How] damaged my body is compared to a normal person,

what could hit me prematurely and all of that stuff, and

I have to stop myself from scaring myself to bits. But

I’ve also got a lot of different forums where doctors

have actually unpacked a lot of this and put it into

context. And I think we need some of that.

Similarly, a 52-year old RD woman OBAH described seeing her

doctor and/or consultant with symptoms of what turned out to

be menopause, but which she feared were HIV-related:

When you are sick you think it’s maybe HIV. Even now I

have a low immune system. When I’ve got flu or I’ve got

sores or something, I think it is caused by HIV. But

before I knew, I thought it was just an illness, it


will pass. But now I will run to the doctor and my

consultant thinking that it is HIV related even if it’s

not related, if it’s [just] an illness. So I will run

to my doctor. I had sores under my vagina, I had thrush

so I went to the doctor and since I’m not sexually

active now, my doctor said no, it’s because of

menopause. Even if I wasn’t HIV I was going to get it.

Now, if I had no HIV, I wasn’t going to think about

that.

Accounting for the knowledge gap

Given the deep personal impact of these uncertainties on

daily life, lack of knowledge about how ageing and HIV inter-

relate could be seen as a failure of personal responsibility

for one’s own health especially given the recent neoliberal

turn in health (Sointu, 2005). Perhaps in recognition of this

potential social judgment, informants attributed their own

lack of knowledge about this interplay to the absence of

definitive knowledge in the wider world, thus absolving

themselves of any potential blame for lacking the knowledge to

age successfully with HIV. Indeed, the very phrasing of the

accounts that appear below signify a wider, collective world,


as older PLWH use such pronouns as ‘we’ and ‘you’ rather than

‘I’ when describing the lack of knowledge in this domain,

retaining the term ‘I’ for discussions of the personal

consequences of this uncertainty. In terms reminiscent of

clinicians’ accounts (see above), a 54-year old RD

heterosexual woman OBAH situated the personal difficulty of

distinguishing between the effects of ageing and those of HIV

within the older PLWH’s lack of any biographical benchmark:

[With] HIV, when you get older, the problem is with

aches and pains; we don’t know whether these aches and

pains are HIV or it’s normal, just because you’ve never been old.

You’ve never been 50 before you have got HIV. So you never know

whether it’s HIV, these aches and pains which we have

sometimes.

This informant set this uncertainty against knowledge of

ageing in general: ‘Obviously, when you are ageing you are

going to die. So, as you get older and older, it gets worse

and worse, until nothing can be done and you die’. Yet, given

the added complications of HIV, ‘at the moment, we don’t

know’. Moreover, this lack of knowledge is a universal feature

within the larger world of HIV: ‘we don’t know, otherwise the


researchers will find something for us and we will have

prolonged life’. Other informants echoed this statement: the

57-year old RD white heterosexual male quoted above, for

example, stated that ‘it would be good to find out whether it

is age or the virus affecting certain things, which obviously

we don’t know, and obviously as doctors you don’t know … I

think probably medically that’s the problem now as well, that

that’s the same scenario where you’re not quite sure’. This

qualification situates uncertainty within the larger world:

rather than a product of lack of access to scientific

knowledge, or a failure to access this knowledge,

uncertainties over how HIV plays out in later life is shared

by those living with and treating/researching HIV. This

equalizes, in a sense, the epistemological capital held by

those in the scientific/clinical and the lived worlds: neither

medical practitioners, medical researchers, nor PLWH

themselves know ‘whether it is age or the virus’.

ConclusionAgeing with HIV is a complex phenomenon, with a

politicised history of medical care, recent medical

breakthroughs changing it from a fatal to a chronic illness,

and a history of treatment partnership between medical


professionals and patients. This complexity, the novelty of

ageing with HIV, and the ageing of the HIV population overall

demand social-scientific investigation into, in the first

instance, the views, understandings and experiences of a range

of actors variously affected by this new phenomenon. In our

data, health professionals, while acknowledging lived

experience (e.g. chronic health problems, uncertainty, and

anxiety), tended to focus their discussion on treatment

optimism, and to link uncertainty to a need for scientific

progress, rather than to the existential problems of living.

Those in closer proximity to living and ageing with HIV (e.g.

older PLWH, HIV activists/ advocates, and HIV policy makers),

on the other hand, were more focused on stories linked to the

difficulties of life with HIV. Their narratives fleshed out

the subjective experience of living – and ageing - with HIV,

while acknowledging that no one, even a clinician, was in a

position to untangle which experiences were related to HIV,

medication, or normal ageing. Non-clinical stakeholders, and

older PLWH, displayed an understanding of the medical optimism

over effective medications as valid, but as only one facet of

a much more complex experiential field. Appeals to scientific


progress were tempered by unease related to everyday living:

concerns over mortality, life expectancy, premature ageing,

and distinguishing between symptoms of ageing and of HIV were

all sources of uncertainty that shaped informants’ ability to

make sense of their current health and to plan for their

future lives. Moreover, age and life course location were

explicitly engaged as factors shaping experience of HIV in

later years, as older PLWH saw HIV as compromising their

likelihood of seeing children grow up and/or caring for them

as they did so, or living the same sort of life as their

parents.

These different perspectives – a medicalised one

highlighting the improved quality of life for older PLWH, and

a lived-experience one highlighting concerns about the

uncertain nature of ageing with HIV - grounded different

understandings of the nature and consequences of the lack of

knowledge about how HIV and older age intersect. These

accounts provide insight into how stakeholders with varying

investments in HIV (professional, biographical, or, in some

cases, both) construct the issues facing people with HIV who

are also ageing. They also point to HIV and ageing belonging


to a wider literature on living with chronic conditions, which

documents uncertainty and other lived as well as clinical

features of the illness in question. Yet the uncertainty

documented here is, we suggest, notably different than it is

in most other chronic conditions, being not only particularly

pronounced, but also uniquely located in socio-medical

historical context.

First, HIV has a specific history (especially but not

exclusively in the West) of highly effective community

activism. This lead to successful treatments eventually made

relatively widely available. It also lead to a distinctive (at

least at the time) reliance on patient knowledge and

experience by health providers forced to treat sometimes

critically ill patients in a clinically uncertain field. In

the resource rich world, professionals and lay people share

this history, or at least become part of this historical

project when they enter the UK (e.g. as migrants living with

HIV). Perhaps as a consequence of this history, and no doubt

due to the UK’s internationally-known success in treating

PLWH, patients with HIV are particularly complimentary about

health professionals who treat them (Weatherburn, Keogh, Reid,


Hammond & Jessup, 2013). This is not to say that tensions

between the agendas of professionals and patients, outlined

elsewhere (e.g. Gold & Ridge, 2001), do not remain. In

contrast to other areas of chronic health conditions (Fox &

Ward, 2006), however, the narratives we collected in this

study are notable for the degree of agreement between older

PLWH and clinical and non-clinical stakeholders (indeed, the

first two of these groups expressed gratitude and relief when

recounting breakthroughs in treatment): rather, again, there

is a continuum of emphasis from the clinical to the deeply

social, with clinical stakeholders and older PLWH generally

positioned at either of this continuum’s ends. While devoid of

conflict or suspicion, these remain noteworthy perspectival

differences, with, for example, clinical/scientific curiosity

on the part of a health professional holding a very different

position on the continuum than does the experience of

uncertainty, as with older PLWH.

Second, to extend Fox’s (2002) ‘experiments of living’

concept to chronic health issues, it is clear that PLWH are

encountering the limits of scientific knowledge, where their

lives could be viewed in terms of experimentation. With no


prior experience of a population ageing with HIV, there is no

‘community of experienced elders’, as it were, to whom those

currently ageing with HIV can turn for experience-based

guidance or advice regarding, for example, what to expect in

later years, which symptoms are typical of ageing versus of

HIV, and how to manage the realities of ageing with HIV within

the domains of medical care, social and family life. But, by

the same token, health professionals are conducting the same

experiment, albeit from the ‘other side of the telescope’, as

they seek to treat an entirely new group: older patients

living with HIV. Health professionals, policy makers, service

providers, and older PLWH can thus be considered pioneers: the

first generation involved in HIV and ageing taking tentative,

experimental steps towards ‘solving the puzzle’ or ‘managing

the problem’. In this context, it is not surprising that the

authoritative voice traditionally expected from medical agents

is, in these accounts, mitigated by a degree of uncertainty,

although some stakeholders did claim varying degrees of

scientific knowledge.

In conclusion, professional stakeholders and older PLWH are

positioned differently in terms of the subjective ‘experiment


of living’ with HIV and ageing. Yet there is no binary here.

Rather, these data display a ‘concordance’ in these varied

informants’ recognition of the newness of ageing with HIV as a

demographic phenomenon and an area of scientific

investigation, and of the novelty grounding the current

knowledge gap regarding the ageing/HIV interplay. Nor is there

reference to competing agendas: older PLWH assume that once

scientific research clarifies the ageing/HIV connection, that

knowledge will make its way into their worlds to, in one

informant’s words, ‘prolong life’. Here, it is not the

patient-centred movements, internet-based medical information,

or patient-centred approach to health care, cited in this

paper’s introduction as narrowing the gulf between medical and

lay knowledge established by early medical sociology, that

render this binary problematic. Rather, it is the shared lack of

knowledge, and the source of this lack in the novelty of ageing

with HIV, that produces the same epistemological ‘scenario’

wherein neither older PLWH nor HIV professionals both within

and outside of the clinical arena fully understand the nature

or consequences of ageing with HIV. This shared ‘scenario’ is,

we suggest, likely due to the distinctive history of HIV


activism and care, on the one hand, and to the novelty of

ageing with HIV, on the other. Yet, alongside the endurance of

perspectival differences adopted by members of the clinical

and lifeworlds, this scenario can help us to reformulate the

static ‘gulf’ between these worlds as, instead, gravitational

pulls towards clinical and experiential dimensions of chronic

illness as it unfolds in later life.


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ENDNOTES

i We use this term to avoid lengthy phrasing, not to depersonalise

people living with HIV or to elide this population’s diversity.

ii A clinical consultation that is ‘a negotiation between equals’

entailing the clinician’s ‘closest attention to and genuine

respect for the validity of the patient’s personal constructs and

coping strategies’ (Marinker 1997: 8).

iii By ‘community’, we mean those affected by and/or responding to

HIV on all levels. Our community advisory board was comprised of

PLWH engaged in e.g. service provision, patient group

organisation, and policy.

iv Some of these stakeholders held more than one of these positions

in relation to HIV. For example, three HIV service providers were

also activists, one health professional was a researcher, and

another health professional was an activist.

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