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‘The own’ and ‘the wise’ as social support for older people living with HIV in the United Kingdom

Published online by Cambridge University Press:  02 August 2018

Dana Rosenfeld  and
Jane Anderson
Dana Rosenfeld*
Affiliation:
School of Social Science and Public Policy, Keele University, Keele, UK
Jane Anderson
Affiliation:
Centre for the Study of Sexual Health and HIV, Homerton University Hospital NHS Foundation Trust, London, UK
*
*Corresponding author. Email: [email protected]
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Abstract

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.

Keywords

social supportHIVGoffman
Type
Article
Information
Ageing & Society , Volume 40 , Issue 1 , January 2020 , pp. 188 - 204
Copyright
Copyright © Cambridge University Press 2018 

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Footnotes

†

HALL Team: Jose Catalan, Damien Ridge and Valerie Delpech

References

Attride-Stirling, J (2001) Thematic networks: an analytic tool for qualitative research. Qualitative Research 1, 385–405.Google Scholar
Beer, G, Matt, J and Summers, S (2014) Growing Older Positively: The Challenge of Ageing with HIV. Available at http://www.2020health.org/dms/2020health/downloads/reports/2020healthHIVdocMASTERONLINE.pdf.Google Scholar
Bekele, T, Rourke, SB, Tucker, R, Greene, S, Sobota, M, Koornstra, J, Monette, L, Rueda, S, Bacon, J, Watson, J and Hwang, SW (2013) Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS. AIDS Care 25, 337–346.Google Scholar
Boyatzis, RE (1998) Transforming Qualitative Information: Thematic Analysis and Code Development. Thousand Oaks, CA: Sage.Google Scholar
Brañas, F, Jiménez, Z, Sánchez-Conde, M, Dronda, F, López-Bernaldo De Quirós, JC, Pérez-Elías, MJ, Miralles, P, Ramírez, M, Moreno, A, Berenguer, J and Moreno, S (2017) Frailty and physical function in older HIV-infected adults. Age and Ageing 46, 522–526.Google Scholar
Brennan-Ing, M, Seidel, L and Karpiak, SE (2016) Social support systems and social network characteristics of older adults with HIV. HIV and Aging 42, 159–172.Google Scholar
Catalan, J, Tuffrey, V, Ridge, D and Rosenfeld, D (2017) What influences quality of life in older people living with HIV? AIDS Research and Therapy 14, 22–32.Google Scholar
Centers for Disease Control (2017) HIV Among People Aged 50 and Older. Available at https://www.cdc.gov/hiv/pdf/group/age/olderamericans/cdc-hiv-older-americans.pdf.Google Scholar
Charmaz, K (2014) Constructing Grounded Theory. London: Sage.Google Scholar
Chinouya, M, Hildreth, A, Goodall, D, Aspinall, P and Hudson, A (2014) Migrants and HIV stigma: findings from the Stigma Index Study (UK). Health and Social Care in the Community 25, 35–42.Google Scholar
Dennis, CL (2003) Peer support within a health care context: a concept analysis. International Journal of Nursing Studies 40, 321–332.Google Scholar
Eaton, AD, Craig, SL and Wallace, R (2017) The intersecting cognitive and aging needs of HIV-positive older adults: implications for social work practice. Social Work in Health Care 56, 733–747.Google Scholar
Emlet, CA (2006 a) ‘You're awfully old to have this disease’: experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS. The Gerontologist 46, 781–790.Google Scholar
Emlet, CA (2006 b) An examination of the social networks and social isolation in older and younger adults living with HIV/AIDS. Health and Social Work 31, 299–308.Google Scholar
Emlet, CA (2008) Truth and consequences: a qualitative exploration of HIV disclosure in older adults. AIDS Care 20, 710–717.Google Scholar
Furlotte, C and Schwartz, K (2017) Mental health experiences of older adults living with HIV: stigma, and approaches to resilience. Canadian Journal on Aging/La Revue canadienne du vieillissement 36, 125–140.Google Scholar
Glaser, BG and Strauss, A (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. New York, NY: Aldine.Google Scholar
Goffman, E (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall.Google Scholar
Grov, C, Golub, SA, Parsons, JT, Brennan, M and Karpiak, SE (2010) Loneliness and HIV-related stigma explain depression among older HIV-positive adults. AIDS Care 22, 630–639.Google Scholar
Guaraldi, G, Orlando, G, Zona, S, Menozzi, M, Carli, F, Garlassi, E, Berti, A, Rossi, E, Roverato, A and Palella, F (2011) Premature age-related comorbidities among HIV-infected persons compared with the general population. Clinical Infectious Diseases 53, 1120–1126.Google Scholar
Halkitis, PN (2013) The AIDS Generation: Stories of Survival and Resilience. New York, NY: Oxford University Press.Google Scholar
Health Foundation (2016) At the Heart of Health: Realising the Value of People and Communities. Available at http://www.nesta.org.uk/sites/default/files/at_the_heart_of_health_-_realising_the_value_of_people_and_communities.pdf.Google Scholar
Hearps, A, Schafer, K, High, K and Landay, A (2016) HIV and aging: parallels and synergistic mechanisms leading to premature disease and functional decline. In Sierra, F and Kohanski, R (eds), Advances in Geroscience. New York, NY: Springer, pp. 509–550.Google Scholar
Hutton, VE (2016) Older adults living with HIV: a valuable resource? Ageing & Society 38, 1–21.Google Scholar
Kordovski, VM, Woods, SP, Verduzco, M and Beltran, J (2017) The effects of aging and HIV disease on employment status and functioning. Rehabilitation Psychology 62, 591–599.Google Scholar
Mavandadi, S, Zanjani, F, Ten Have, TR and Oslin, DW (2009) Psychological wellbeing among individuals aging with HIV: the value of social relationships. Journal of Acquired Immune Deficiency Syndromes 51, 91–98.Google Scholar
McGowan, JA, Sherr, L, Rodger, AJ, Fisher, M, Miners, A, Anderson, J, Johnson, MA, Elford, J, Collins, S, Hart, G and Phillips, AN (2016) Age, time living with diagnosed HIV infection, and self-rated health. HIV Medicine 18, 89–103.Google Scholar
National AIDS Trust (2017) Why We Need HIV Support Services: A Review of the Evidence. Available at http://www.nat.org.uk/publication/why-we-need-hiv-support-services-review-evidence.Google Scholar
Nevedal, A and Sankar, A (2015) The significance of sexuality and intimacy in the lives of older African Americans with HIV/AIDS. The Gerontologist 56, 762–771.Google Scholar
Peterson, JL, Rintamaki, LS, Brashers, DE, Goldsmith, DJ and Neidig, JL (2012) The forms and functions of peer social support for people living with HIV. Journal of the Association of Nurses in AIDS Care 23, 294–305.Google Scholar
Poindexter, C and Shippy, RA (2008) Networks of older New Yorkers with HIV: fragility, resilience, and transformation. AIDS Patient Care and STDs 22, 723–733.Google Scholar
Porter, KE, Brennan-Ing, M, Burr, JA, Dugan, E and Karpiak, SE (2015) Stigma and psychological well-being among older adults with HIV: the impact of spirituality and integrative health approaches. The Gerontologist 57, 219–228.Google Scholar
Rosenfeld, D (2003) The Changing of the Guard: Lesbian and Gay Elders, Identity, and Social Change. Philadelphia, PA: Temple University Press.Google Scholar
Rosenfeld, D, Anderson, J, Ridge, D, Asboe, D, Catalan, J, Collins, S, Delpech, V and Tuffrey, V (2015) Social Support, Mental Health, and Quality of Life Among Older People Living with HIV. Available at www.keele.ac.uk/hall.Google Scholar
Rosenfeld, D, Bartlam, B and Smith, R (2012) Out of the closet and into the trenches: gay male baby boomers, aging, and HIV/AIDS. The Gerontologist 52, 255–264.Google Scholar
Rosenfeld, D, Catalan, J and Ridge, D (2018) Strategies for improving mental health and wellbeing used by older people living with HIV: a qualitative investigation. AIDS Care. doi:10.1080/09540121.2018.1468016 [Epub ahead of print].Google Scholar
Rosenfeld, D, Ridge, D, Catalan, J and Delpech, V, on behalf of the HIV and Later Life Team (2016) Age and life course location as interpretive resources for decisions regarding disclosure of HIV to parents and children: findings from the HIV and later life study. Journal of Aging Studies 38, 81–91.Google Scholar
Rosenfeld, D, Ridge, D and Lob, GV, on behalf of the HIV and Later Life Team (2014) Vital scientific puzzle or lived uncertainty? Professional and lived approaches to the uncertainties of ageing with HIV. Health Sociology Review 23, 20–32.Google Scholar
Rueda, S, Law, S and Rourke, SB (2014) Psychosocial, mental health, and behavioral issues of aging with HIV. Current Opinion in HIV and AIDS 9, 325–331.Google Scholar
Sabin, CA (2013) Do people with HIV infection have a normal life expectancy in the era of combination antiretroviral therapy? BMC Medicine 11, 251.Google Scholar
Sankar, A, Nevedal, A, Neufeld, S, Berry, R and Luborsky, M (2011) What do we know about older adults and HIV? A review of social and behavioral literature. AIDS Care 23, 1187–1207.Google Scholar
Schouten, J, Wit, FW, Stolte, IG, Kootstra, N, van der Valk, M, Geerlings, SG, Prins, M, Reiss, P, Wit, FWNM and van der Valk, M (2014) Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: the AGEhIV cohort study. Clinical Infectious Diseases 59, 1787–1797.Google Scholar
Schrimshaw, EW and Siegel, K (2003) Perceived barriers to social support from family and friends among older adults with HIV/AIDS. Journal of Health Psychology 8, 738–752.Google Scholar
Shippy, RA and Karpiak, SE (2005) The aging HIV/AIDS population: fragile social networks. Aging and Mental Health 9, 246–254.Google Scholar
Slomka, J, Lim, JW, Gripshover, B and Daly, B (2013) How have long-term survivors coped with living with HIV? Journal of the Association of Nurses in AIDS Care 24, 449–459.Google Scholar
Smith, RA (2012) Segmenting an audience into the own, the wise, and normals: a latent class analysis of stigma-related categories. Communication Research Reports 29, 257–265.Google Scholar
Solomon, P, O'Brien, K, Wilkins, S and Gervais, N (2014) Aging with HIV and disability: the role of uncertainty. AIDS Care 26, 240–245.Google Scholar
South, J (2015) A Guide to Community-centred Approaches for Health and Wellbeing. London: Public Health England. Available at www.gov.uk/government/uploads/system/uploads/attachment_data/file/417515/A_guide_to_community-centred_approaches_for_health_and_wellbeing__full_report_.pdf.Google Scholar
Terrence Higgins Trust (2017) Uncharted Territory: A Report into the First Generation Growing Older with HIV. Available at www.tht.org.uk/~/media/Files/Publications/Policy/uncharted_territory_final_low-res.pdf.Google Scholar
Tomaka, J, Thompson, S and Palacios, R (2006) The relation of social isolation, loneliness, and social support to disease outcomes among the elderly. Journal of Aging and Health 18, 359–384.Google Scholar
Veinot, T (2009) ‘A lot of people didn't have a chance to support us because we never told them’: stigma management, information poverty and HIV/AIDS information/help networks. Proceedings of the American Society for Information Science and Technology 46, 1–20.Google Scholar
Wallach, I and Brotman, S (2013) Ageing with HIV/AIDS: a scoping study among people aged 50 and over living in Quebec. Ageing & Society 33, 1212–1242.Google Scholar
Wallach, I and Brotman, S (2017) The intimate lives of older adults living with HIV: a qualitative study of the challenges associated with the intersection of HIV and ageing. Ageing & Society 38, 2490–2518.Google Scholar
Watkins-Hayes, C (2014) Intersectionality and the sociology of HIV/AIDS: past, present, and future research directions. Annual Review of Sociology 40, 431–457.Google Scholar
Yin, Z, Brown, A, Hughes, G, Nardone, A, Gill, O and Delpech, V (2014) HIV in the United Kingdom: 2014 Report. The HIV and AIDS Reporting Team, HIV and STI Department, Centre for Infectious Disease Surveillance and Control, Health Protection Directorate, London, UK.Google Scholar