Towards a new understanding of HIV-related stigma in the era of efficient treatment- A qualitative reconceptualization of existing theory.
HIV
HIV-related stigma
framework approach
normalization
nursing
qualitative interviews
stigma
Journal
Journal of advanced nursing
ISSN: 1365-2648
Titre abrégé: J Adv Nurs
Pays: England
ID NLM: 7609811
Informations de publication
Date de publication:
May 2021
May 2021
Historique:
revised:
03
12
2020
received:
28
06
2020
accepted:
16
01
2021
pubmed:
19
2
2021
medline:
22
6
2021
entrez:
18
2
2021
Statut:
ppublish
Résumé
To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. Qualitative study using interviews and a framework approach to analysis. People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach. Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature. The HIV stigma framework could benefit from revision for people living with virally suppressed HIV. The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2472-2480Subventions
Organisme : Doctoral School in Health Care Sciences, Karolinska Institutet
Informations de copyright
© 2021 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.
Références
Andersson, G. Z., Reinius, M., Eriksson, L. E., Svedhem, V., Esfahani, F. M., Deuba, K., Rao, D., Lyatuu, G. W., Giovenco, D., & Ekström, A. M. (2019). Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV, 7(2), e129-e140. https://doi.org/10.1016/S2352-3018(19)30343-1
Chaudoir, S. R., Fisher, J. D., & Simoni, J. M. (2011). Understanding HIV disclosure: A review and application of the Disclosure Processes Model. Social Science and Medicine, 72(10), 1618-1629. https://doi.org/10.1016/j.socscimed.2011.03.028
Dulin, A. J., Dale, S. K., Earnshaw, V. A., Fava, J. L., Mugavero, M. J., Napravnik, S., Hogan, J. W., Carey, M. P., & Howe, C. J. (2018). (2018) Resilience and HIV: A review of the definition and study of resilience. AIDS Care., 30(sup5), S6-S17. https://doi.org/10.1080/09540121.2018.1515470
Earnshaw, V. A., & Chaudoir, S. R. (2009). From conceptualizing to measuring HIV stigma: A review of HIV stigma mechanism measures. AIDS and Behavior, 13(6), 1160-1177. https://doi.org/10.1007/s10461-009-9593-3
Earnshaw, V. A., Smith, L. R., Chaudoir, S. R., Amico, K. R., & Copenhaver, M. M. (2013). HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS and Behavior, 17(5), 1785-1795. https://doi.org/10.1007/s10461-013-0437-9
Feigin, R., Sapir, Y., Patinkin, N., & Turner, D. (2013). Breaking through the silence: The experience of living with HIV-positive serostatus, and its implications on disclosure. Social Work in Health Care, 52(9), 826-845. https://doi.org/10.1080/00981389.2013.827143
Fisher, M., & Henrickson, M. (2019). Are statutory protections sufficient to protect people living with HIV who are employed in the medical workplace? Int J Healthc Manag, 12(1), 75-80. https://doi.org/10.1080/20479700.2017.1398387
Fletcher, F., Ingram, L. A., Kerr, J., Buchberg, M., Bogdan-Lovis, L., & Philpott-Jones, S. (2016). "She Told Them, Oh That Bitch Got AIDS": Experiences of multilevel HIV/AIDS-Related Stigma Among African American Women Living with HIV/AIDS in the South. AIDS Patient Care and STDs, 30(7), 349-356. https://doi.org/10.1089/apc.2016.0026
Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13, 117. https://doi.org/10.1186/1471-2288-13-117
Gisslén, M., Svedhem, V., Lindborg, L., Flamholc, L., Norrgren, H., Wendahl, S., Axelsson, M., & Sönnerborg, A. (2016). Sweden, the first country to achieve the Joint United Nations Programme on HIV/AIDS (UNAIDS)/World Health Organization (WHO) 90-90-90 continuum of HIV care targets. HIV Medicine, 18(4), 305-307. https://doi.org/10.1111/hiv.12431
Goffman, E. (1963). Stigma; notes on the management of spoiled identity. Prentice-Hall.
Henrickson, M., & Fisher, M. (2016). ‘Treating Africans differently’: Using skin colour as proxy for HIV risk. Journal of Clinical Nursing, 25, 1941-1949. https://doi.org/10.1111/jocn.13212
InfCareHIV. A National quality register. https://qrcstockholm.se/register/anslutna-register/infcarehiv-och-infcarehepatit/
Langebeek, N., Gisolf, E. H., Reiss, P., Vervoort, S. C., Hafsteinsdóttir, T. B., Richter, C., Sprangers, M. A. G., & Nieuwkerk, P. T. (2014). Predictors and correlates of adherence to combination antiretroviral therapy (ART) for chronic HIV infection: A meta-analysis. Bmc Medicine, 12, 1-14. https://doi.org/10.1186/s12916-014-0142-1
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage Publications.
Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363-385. https://doi.org/10.1146/annurev.soc.27.1.363
Logie, C. H., James, L., Tharao, W., & Loutfy, M. R. (2011). HIV, gender, race, sexual orientation, and sex work: A qualitative study of intersectional stigma experienced by HIV-positive women in ontario, Canada. PLoS Medicine, 8(11), 12. https://doi.org/10.1371/journal.pmed.1001124
Mazanderani, F., & Paparini, S. (2015). The stories we tell: Qualitative research interviews, talking technologies and the 'normalisation' of life with HIV. Social Science & Medicine, 131, 66-73. https://doi.org/10.1016/j.socscimed.2015.02.041
McGrath, J. W., Winchester, M. S., Kaawa-Mafigiri, D., Walakira, E., Namutiibwa, F., Birungi, J., Ssendegye, G., Nalwoga, A., Kyarikunda, E., Kisakye, S., Ayebazibwe, N., & Rwabukwali, C. B. (2014). Challenging the paradigm: Anthropological perspectives on HIV as a chronic disease. Medical Anthropology, 33(4), 303-317. https://doi.org/10.1080/01459740.2014.892483
Medley, A., Garcia-Moreno, C., McGill, S., & Maman, S. (2004). Rates, barriers and outcomes of HIV serostatus disclosure among women in developing countries: Implications for prevention of mother-to-child transmission programmes. Bulletin of the World Health Organization, 82(4), 299-307.
Moyer, E., & Hardon, A. (2014). A disease unlike any other? Why HIV remains exceptional in the age of treatment. Medical Anthropology, 33(4), 263-269. https://doi.org/10.1080/01459740.2014.890618
Murphy, P. J., Hevey, D., O'Dea, S., Rathaille, N. N., & Mulcahy, F. (2016). Serostatus disclosure, stigma resistance, and identity management among HIV-positive gay men in Ireland. Qualitative Health Research, 26(11), 1459-1472. https://doi.org/10.1177/1049732315606687
Nguyen, V. K. (2013). Counselling against HIV in Africa: A genealogy of confessional technologies. Cult Health Sex, 15(Suppl 4), S440-452. https://doi.org/10.1080/13691058.2013.809146
Patton, M. Q., & Patton, M. Q. (2002). Qualitative research and evaluation methods. , 3rd ed. Sage Publications.
Paxton, S. (2002). The paradox of public HIV disclosure. AIDS Care, 14(4), 559-567. https://doi.org/10.1080/09540120208629674
Persson, A. (2013). Non/infectious corporealities: Tensions in the biomedical era of 'HIV normalisation'. Sociology of Health & Illness, 35(7), 1065-1079. https://doi.org/10.1111/1467-9566.12023
Rai, T., Bruton, J., Day, S., & Ward, H. (2018). From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014. Health Expectations, 21(6), 1134-1141. https://doi.org/10.1111/hex.12816
Rao, D., Feldman, B. J., Fredericksen, R. J., Crane, P. K., Simoni, J. M., Kitahata, M. M., & Crane, H. M. (2012). A structural equation model of HIV-related stigma, depressive symptoms, and medication adherence. AIDS and Behavior, 16(3), 711-716. https://doi.org/10.1007/s10461-011-9915-0
Reinius, M., Wiklander, M., Wettergren, L., Svedhem, V., & Eriksson, L. E. (2018). The relationship between stigma and health-related quality of life in people living with HIV who have full access to antiretroviral treatment: An assessment of earnshaw and Chaudoir's HIV stigma framework using empirical data. AIDS and Behavior, 22(12), 3795-3806. https://doi.org/10.1007/s10461-018-2041-5
Ritchie, J., & Lewis, J. (2003). Qualitative research practice: A guide for social science students and researchers. Sage Publications.
Ritchie, J. S., & Liz, S. (1994). Qualitative data analysis for applied policy research. In A. B. Bryman & G. Robert (Eds.), Analyzing qualitative data. Routledge.
Rodger, A. J., Cambiano, V., Bruun, T., Vernazza, P., Collins, S., Degen, O., Group, P. S. (2019). Risk of HIV transmission through condomless sex in serodifferent gay couples with the HIV-positive partner taking suppressive antiretroviral therapy (PARTNER): Final results of a multicentre, prospective, observational study. Lancet, 393(10189), 2428-2438. https://doi.org/10.1016/S0140-6736(19)30418-0
Rueda, S., Mitra, S., Chen, S., Gogolishvili, D., Globerman, J., Chambers, L., Wilson, M., Logie, C. H., Shi, Q., Morassaei, S., & Rourke, S. B. (2016). Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: A series of meta-analyses. British Medical Journal Open, 6(7), e011453. https://doi.org/10.1136/bmjopen-2016-011453
Rydstrom, L. L., Wiklander, M., Naver, L., Ygge, B. M., & Eriksson, L. E. (2016). HIV-related stigma and health-related quality of life among children living with HIV in Sweden. AIDS Care, 28(5), 665-671. https://doi.org/10.1080/09540121.2015.1120267
Smith, C., Cook, R., & Rohleder, P. (2017). 'When it comes to HIV, that's when you find out the genuinity of that love': The experience of disclosing a HIV+ status to an intimate partner. J Health Psychol, 24(8), 1011-1022. https://doi.org/10.1177/1359105317691588
The Public Health Agency of Sweden (2018). Tillämpning av smittskyddslagens förhållningsregler vid hivinfektion. Retrieved from www.folkhälsomyndigheten.se/publicerat-material.
Turan, B., Budhwani, H., Fazeli, P. L., Browning, W. R., Raper, J. L., Mugavero, M. J., & Turan, J. M. (2017). How does stigma affect people living with HIV? the mediating roles of internalized and anticipated HIV stigma in the effects of perceived community Stigma on health and psychosocial outcomes. AIDS and Behavior, 21(1), 283-291. https://doi.org/10.1007/s10461-016-1451-5
Vaughan, E., Power, M., & Sixsmith, J. (2020). Experiences of stigma in healthcare settings by people living with HIV in Ireland: A qualitative study. AIDS Care, 32(9), 1162-1167. https://doi.org/10.1080/09540121.2020.1781761
Zeluf-Andersson, G., Eriksson, L. E., Schonnesson, L. N., Hoijer, J., Manehall, P., & Ekstrom, A. M. (2019). Beyond viral suppression: The quality of life of people living with HIV in Sweden. AIDS Care, 31(4), 403-412. https://doi.org/10.1080/09540121.2018.1545990