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/
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.
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)
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)
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)
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)
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
Findings•Narratives of naturalisation: medicalisation, normalisation andmarketisation, 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 ofhealth and welfare services; recession and cuts; reframing of disabilityliving allowance•Punishing the ill: the sequestering of people living with HIV (cf Wacquant,2009).•Difficulties of resistance: the ongoing difficulties of ‘survival’.
• 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.
• 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.
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 psychosocialservices •Cross-pandemic differences•HIV prevalence•HIV history•HIV and other health resources•Social and economic resources
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)
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
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
Fundiswa: I got disability grant for Im disabled/Oh right, not for HIV/Not HIV/Okay/But now I review it. They stop it/Really?/MhmInterviewer: They did stop it already or they might?Fundiswa: Theyve already stop it. I did go and renew it so Im 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, its a problem. Its a very big problem now. I was used with that money, now I dont have money, that I, you see at home I buy fridge, then I said to the shop I cant 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) its 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) Ive got at least money that I can see, but if there was, there is no work at all, you dont 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, thats a problem...We had help from Mandela.Interviewer: Oh from Mandela Foundation/Mhm/Okay. And they dont give thatFundiswa: They dont give us anything this year. So thats 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...
Mandisa: No, they dont 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 cant/Yes/you cant get that.Mandisa: I only get only six months. By the time I was taking ARVs...(health became better)Mandisa: I didnt go back and do it (grant application) again, I say, no, the grant is not important more than my health. I dont 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 ARVs because they want CD4 count to drop.Interviewer: Do you think many people do that/I dont encourage that./do you think peopleMandisa: Some people do it.
References • Main referencesHIV: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: RoutledgeUNAIDS (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.pdfGood 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.htmThrough Positive Eyes: http://throughpositiveeyes.org/ and http://throughpositiveeyes.org/participantsNarrative:Andrews, C., Squire, C. and Tamboukou, M. (eds) (2008) Doing narrative research. London: SageRiessman, C. (2008) Narrative methods for the human sciences Further referencesBrandt, R. (2008) Is it all chaos, loss and disruption? The narratives of poor, HIV-infected South African women. CSSR Working Paper 224Bury, 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: 517–40Crenshaw, K, (2003) Traffic at the Crossroads: Multiple Oppressions. In Sisterhood is Forever: The Womens Anthology for a New Millennium, ed Robin Morgan. New York: Washington Square Press.
Crossley, M. (2000) Introducing Narrative Psychology: Self, Trauma and the Construction of Meaning. Buckinghamshire: Open UniversityPress.Crimp, D. (1988) AIDS: Cultural Analysis/Cultural Activism. Boston, MASS: MIT PressFrank, A. (1997) The Wounded Storyteller. Chicago, IL: University of Chicago Press.Herek, G. (2002) Thinking about AIDS and stigma: A psychologists 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 BenjaminsKelly, J., St Lawrence, J., Diaz, Y., Stevenson, L., Hauth, A., Brasfield, T., Kalichman, S., Smith, J. and Andrew, M. (1991). HIV risk behaviorreduction following intervention with key opinion leaders of a population: An experimental community level analysis. American Journal ofPublic Health 81: 168–71Kleinman, 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 PressPlummer, K. (1995) Telling Sexual Stories. London: Routledge.Polletta, F. (2006). It Was Like A Fever. Chicago: Chicago University PressRose, N. (2007) The politics of life itself: biomedicine, power and subjectivity in the twenty-first century. Princeton: Princeton UniversityPress.Seckinelgen, H. (2010) Global governance of success in HIV/AIDS policy: emergency action, everyday lives and Sen’s capabilitiesSquire, C. (2010) ‘Being naturalized, being left behind: The HIV citizen in the era of treatment possibility’. Critical Public Health 10, 4: 401-27Squire, 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 ofFeeling, 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 PressYuval-Davis, N. (2006) Intersectionality and feminist politics. European Journal of Women’s Studies Special issue on intersectionality, 13. 3:193-209.