This document provides an overview of a conference presentation on narrative methods in health research related to the HIV epidemic in the UK and South Africa. The presentation discusses: 1) Why studying HIV is important given its psychosocial impacts and ongoing challenges with treatment and stigma. 2) Different types of social research that have been conducted on HIV including behavioral studies, stigma research, and narrative approaches. 3) Details of the presenter's narrative research studies interviewing people living with HIV in the UK and South Africa about medical, social and other support systems. 4) Key findings from the research including stories of normalizing HIV, resistance to changes in health systems, and difficulties accessing resources.

1. BSA Teaching Group Conference, 2012
Narrative methods in health research:
Studying responses to the HIV epidemic in the
UK and South Africa
Corinne Squire
Centre for Narrative Research,
School of Law and Social Sciences,
University of East London
https://www.uel.ac.uk/cnr/

2. Why study HIV?
• HIV is a psychosocial and media as well as medical condition (Treichler,
1999).
• HIV is not a solved problem. Despite effective and more available
treatment, treatment is not available everywhere, is not always effective,
and has longterm uncertainties
• HIV’s scale; stigma and stereotyping
• Intersectionalities (Crenshaw, 2003; Yuval-Davis, 2006) of living with or
being affected by HIV
• HIV’s different levels of interacting social contexts, from the intrapsychic
effects of social stigma, to social identity, media representations and
global policy.

3. Social research on HIV
• Behaviour change research (Kelly, 1991)
• Therapy and counselling-derived research
• Econometrics with social surveys (Natrass, 2003)
• Cultural, media studies and activist research (Treichler, 1999; Crimp, 1988)
• Stigma research: Building on Goffman: enacted, felt normative, vicarious and
internalised; intrumental and symbolic (Herek, 2002)
• HIV competence: Building on Puttnam and Bourdieu: bonding and bridging
social capital (Campbell, 2007)
• HIV and capabilities (Seckinelgen, 2010)
• Psychodynamic approaches (Brandt, 2008; Long, 2009)
• Biological citizenship (Rose, 2007)

4. Narrative research and health
• Enhancing understanding and advocacy (Bury, 1982; Ciambrone, 2001;
Frank, 1997; Kleinman, 1989; Mishler, 1986)
• Positive role in social movements (Polletta, 2006; Plummer, 1995; Tilly,
2002)
• HIV stories: which ones ‘work’? (Crossley, 2000; Carricaburu and Pierret,
1995; Brandt, 2008; Squire, 2007)
• ‘Telling HIV stories’ in research: something that research participants
already do; as a way of getting heard more widely; openness is liked;
promotes comprehension of uncertainties, multiplicities and
contradictions; brings different levels of story into dialogue (Squire, 2005,
2008; Hyvarinen, 2010)

5. HIV in the world:
is HIV plateauing out, becoming endemic?
World AIDS Day 2011, Aiming for zero: new infections, deaths, stigma.
At end 2010, around 34m people were living with HIV. Numbers remain high because
of new infections, increased access to testing and increased access to treatment.
Women are 50% of the total (59% in subsaharan Africa). 68% live in subsaharan
Africa.
1.8m people died of AIDS-related causes in 2010, down from 2.2m in the mid-2000s
(reduced by treatment; increased by number of people progressing in their illness,
and by continuing new diagnoses)
2010 saw 2.7m new infections – 21% down on 1997. HIV incidence has fallen in 22
countries, 22 in subsaharan Africa.
The epidemic is more or less stable in Latin America and (despite resources) in North
America and Western and Central Europe. Many high-income countries have HIV
epidemics (above 1% prevalence) in particular communities or areas (eg 3% in the
adult population in Washington DC).
Treatment reaches over 6.6m people and is reducing new infections
(UNAIDS, 2011)

6. The UK HIV situation
• Around 91,500 people are thought to be living with HIV in the UK (end 2010),
with 24% unaware of being HIV positive.
• 2010 saw 6,600 new diagnoses, 3000 among MSM – the highest number
ever reported (this may partly indicate renewed testing).
• 50% were late diagnoses
• 90% of people were in regular touch with HIV services
• Deaths among people who are HIV positive remain around 4-500 a year.
(HPA, 2011)

7. •

8. HIV Support in the UK: Study Procedure
• 50 interviews with people living with HIV (one-third previously
interviewed)
• 1-2 hour interviews, semistructured, cover topics of medical, social,
family, friendship, work, online and other media, and faith support
• Interviews are content analysed and narratively analysed

9. Findings
•Narratives of naturalisation: medicalisation, normalisation and
marketisation, and resistance to them (Squire, 2010)
•Moves away from entitlement in earlier UK accounts of living with HIV
(Squire, 2006)
•Many stories, throughout interviews, of the neoliberal restructuring of
health and welfare services; recession and cuts; reframing of disability
living allowance
•Punishing the ill: the sequestering of people living with HIV (cf Wacquant,
2009).
•Difficulties of resistance: the ongoing difficulties of ‘survival’.

10.
• Penelope: I don’t want anything I just want to live a normal life and er, I’m
not after benefits, where I come from, nobody gives you anything you
have to work for everything /yeah/ you can go to the hospital if you don’t
have money they will not treat you so I really appreciate being in this
country and um getting my treatment and accommodation you know in
my country nobody will give you that and if I could I would really want to
pay back you know, just do something just help somebody/ of course of
course sure/yeah like a/like a support worker or a/Yeah help somebody, an
elderly lady, somebody, I want to pay back and do something but it’s not
easy because there a lot of um, I dunno if I should say it nasty, nasty
criminals you know who are after something who are not really willing to
help, I don’t want, I don’t want any payment I just want to help somebody
you know because to be where I am now if I was in my country I would of
been dead… yes, I don’t know what else to do, you know who to turn to,
can’t do anything can’t plan can’t do nothing just doing the same thing
every day, go out come back sit watch TV go to bed wake up same thing.

11. • Gerry: And as well, I had lately, been medically reassessed through
benefits and, and quite, left a number of stresses um and again I don’t
know if I am about to be reassessed but when I do I am sure I am going to
be quite upset because I know who I am or ah, I mean I have read on the
internet that there are charities that deal with that but again it’s a little
bit, that seems a little bit like, there’s isn’t a personal, someone to put
inside, to put around, something to say ‘don’t worry’, to be called for an
interview with you…um it’s almost that I feel like, I feel I am being told
that I am out of life , because if you have a life then you don’t need
benefit and support, you can get up and work.

12. Cross-pandemic commonalities:
UK-South Africa
•Large numbers of people living longterm with ARV treatment and its difficulties,
HIV and its difficulties.
•Contemporary emphasis on testing
•Large numbers of people living with HIV also highly resource constrained
•Global financial crisis causing restrictions in medical and large cuts in psychosocial
services
•Cross-pandemic differences
•HIV prevalence
•HIV history
•HIV and other health resources
•Social and economic resources

13. HIV in South Africa: the current situation
• 5.6 million people living with HIV
• c.300 000 people dying from HIV-related causes yearly
• Over 50% of those who need them, taking ARVs
• 2010: HIV counselling and testing campaign
(UNAIDS, 2011)

15. HIV Support in South Africa: Study
Procedure
• 17 interviews with people living with HIV (one-third previously
interviewed)
• The interviews are semistructured and cover topics of medical, social,
family, friendship, work, online and other media, and faith support
• Interviews are 30 minutes-2 hours
• Interviews are content analysed and narratively analysed

16. Findings
• ‘HIV competence’ stories of knowledge, ownership, openness and
collectivity
• Many accounts of the difficulties of living, independent of HIV, between
work, social welfare and poverty
• Stories of the difficulties of being good HIV positive citizens in the
contemporary context
• Some stories of the marginality of HIV citizenship in South Africa

17. Fundiswa: I got disability grant for I'm disabled/Oh right, not for HIV/Not HIV/Okay/But now I
review it. They stop it/Really?/Mhm
Interviewer: They did stop it already or they might?
Fundiswa: They've already stop it. I did go and renew it so I'm waiting, they said September I
will have it I guess.
Interviewer: So is that a problem, I mean, in terms of getting work?
Fundiswa: Yes, it's a problem. It's a very big problem now. I was used with that money, now I
don't have money, that I, you see at home I buy fridge, then I said to the shop I can't afford
to pay that fridge, you must come and take it, because I want to have that money for /For
instalment/For instalment, yes. Because the money that I have here at (centre) it's the
money that I can bring food home, for my children, and my family.
Interviewer: So do you earn, you have a wage at (centre) or you can, or you sell things, or how
does it work?
Fundiswa: It um, I can say, when I have worked hard on that (sewing) I've got at least money
that I can see, but if there was, there is no work at all, you don't earn nothing. We just eat
and go home/Right/You go home and the children at home are hungry and then how can
you get the money, that's a problem...We had help from Mandela.
Interviewer: Oh from Mandela Foundation/Mhm/Okay. And they don't give that
Fundiswa: They don't give us anything this year. So that's it. Big problem/Yes/They used of
that money/Right. Yes/Because that money we can afford to do anything that we want,
even the clothes, if you want to buy yourself something new, or whatever, you can use
with that Mandela, but now this year...

18. Mandisa: No, they don't give any disability, yes/yes/Maybe they would be better
if only one of the, if only one was getting, I think it would be maybe better.
Interviewer: If, can you explain?
Mandisa: I think maybe it would be better if maybe the one of the kids is getting
disability grant.
Interviewer: No, I was meaning for you, also, but maybe your health is good, so
you can't/Yes/you can't get that.
Mandisa: I only get only six months. By the time I was taking ARV's...
(health became better)
Mandisa: I didn't go back and do it (grant application) again, I say, no, the grant is
not important more than my health. I don't want go back and start it again.
Interviewer: No. Do you think some people want the grant more than their
health?
Mandisa: Mhm, some people. Some people they default with ARV's because they
want CD4 count to drop.
Interviewer: Do you think many people do that/I don't encourage that./do you
think people
Mandisa: Some people do it.

19. References
• Main references
HIV:
Barnett, A. and Whiteside, A. (2006) AIDS in the twenty-first century. London: Palgrave
• HPA (2011) HIV in the United Kingdom. London.
• http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317131685847
• Squire, C. (2007) HIV in South Africa: talking about the Big Thing. London: Routledge
UNAIDS (2011) Report on the global AIDS epidemic. Geneva: UNAIDS
http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2011/JC2216_WorldAIDSday_report_2011_en.pdf
Good websites:
UNAIDS: http://www.unaids.org/en/
HPA: http://www.hpa.org.uk/
Avert: http://www.avert.org/universal-access-to-treatment-in-south-africa.htm
Through Positive Eyes: http://throughpositiveeyes.org/ and http://throughpositiveeyes.org/participants
Narrative:
Andrews, C., Squire, C. and Tamboukou, M. (eds) (2008) Doing narrative research. London: Sage
Riessman, C. (2008) Narrative methods for the human sciences
Further references
Brandt, R. (2008) Is it all chaos, loss and disruption? The narratives of poor, HIV-infected South African women. CSSR Working Paper 224
Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4(2): 167–82.
Campbell, C., Nair, Y, Maimane, S, & Sibiya, Z (2007) Building contexts that support effective community responses to HIV/AIDS. American
Journal of Community Psychology. 39, 3-4:347-363.
Carricaburu,D. and Pierret ,J.(1995) From biographical disruption to biographical reinforcement: the case of HIV-positive men. Sociology of
Health and Illness 17,1: 65-88.
Ciambrone, D. (2001) Illness and other assaults on self: The relative impacts of HIV/AIDS on women’s lives. Sociology of Health and Illness 23:
517–40
Crenshaw, K, (2003) Traffic at the Crossroads: Multiple Oppressions. In Sisterhood is Forever: The Women's Anthology for a New Millennium, ed
Robin Morgan. New York: Washington Square Press.

20. Crossley, M. (2000) Introducing Narrative Psychology: Self, Trauma and the Construction of Meaning. Buckinghamshire: Open University
Press.
Crimp, D. (1988) AIDS: Cultural Analysis/Cultural Activism. Boston, MASS: MIT Press
Frank, A. (1997) The Wounded Storyteller. Chicago, IL: University of Chicago Press.
Herek, G. (2002) Thinking about AIDS and stigma: A psychologist's perspective. Journal of Law, Medicine, and Ethics, 30, 594-607.
Hyvarinen, M., Hyden, L-C., Saarenheimo, M. and Tamboukou, M. (2010) Beyond narrative coherence. Amsterdam: John Benjamins
Kelly, J., St Lawrence, J., Diaz, Y., Stevenson, L., Hauth, A., Brasfield, T., Kalichman, S., Smith, J. and Andrew, M. (1991). HIV risk behavior
reduction following intervention with key opinion leaders of a population: An experimental community level analysis. American Journal of
Public Health 81: 168–71
Kleinman, A. (1988) The illness narratives. New York: Basic Books.
Long, C. (2009) Contradicting maternity: HIV positive motherhood in South Africa. Johannesburg: Wits University Press.
Mishler, E. (1986) Research interviewing: context and carrative. Cambridge, MA: Harvard University Press.
Natrass, N. (2003) The moral economy of AIDS in South Africa. Cambridge: Cambridge University Press
Plummer, K. (1995) Telling Sexual Stories. London: Routledge.
Polletta, F. (2006). It Was Like A Fever. Chicago: Chicago University Press
Rose, N. (2007) The politics of life itself: biomedicine, power and subjectivity in the twenty-first century. Princeton: Princeton University
Press.
Seckinelgen, H. (2010) Global governance of success in HIV/AIDS policy: emergency action, everyday lives and Sen’s capabilities
Squire, C. (2010) ‘Being naturalized, being left behind: The HIV citizen in the era of treatment possibility’. Critical Public Health 10, 4: 401-
27
Squire, C. (2008) ‘From experience-centred to culturally-oriented narrative research.’ In M.Andrews, C.Squire and M.Tamboukou (eds)
Doing Narrative Research, London: Sage.
Squire, C. (2006). Feeling entitled: HIV, entitlement feelings and citizenship. In P.6, S.Radstone, C.Squire and A. Treacher (eds), Matters of
Feeling, London: Palgrave.
Squire, C. (2005) Reading narratives. Group Analysis 38(1): 91–107.
Treichler, P. (1999), How to have theory in an epidemic: cultural chronicles of AIDS, Durham, Duke University Press.
Tilly, C. (2002). Stories, Identities and Political Change. Oxford: Rowman and Littlefield.
Wacquant, L. (2009) Punishing the poor. Durham, NC: Duke University Press
Yuval-Davis, N. (2006) Intersectionality and feminist politics. European Journal of Women’s Studies Special issue on intersectionality, 13. 3:
193-209.