Exploring the meaning of living with HIV as a chronic illness in Kenya: A narrative inquiry
DOI:
https://doi.org/10.1558/cam.27949Keywords:
coherence, biographical disruption, HIV, Kenya, narrative inquiryAbstract
Since the introduction of antiretroviral medications, HIV has been regarded as a chronic illness. However, people living with HIV continue to experience social consequences of HIV infection such as stigma, discrimination, violence, and other human rights violations. In this paper, we focus on the experiences of Atoti, a person living with HIV in Kenya. We argue that HIV remains a biographically disruptive and exceptional illness that is complicated by its invisibility and unpredictable trajectory. Based on Atoti’s experiences, we argue that Bury’s (1982) concept of biographical disruption, used to explain the social processes of a person suffering a chronic illness, does not fully capture the complexity of experiencing living with HIV. Focusing on life as a whole, rather than on the disease response and process as a biographical disruption, allows for a deeper appreciation of HIV’s complexity as a medical illness with major social ramifications.References
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Caine, V., Estefan, A. and Clandinin, D. J. (2013) A return to methodological commitment: Reflections on narrative inquiry. Scandinavian Journal of Educational Research 57 (6): 574–586. https://doi.org/10.1080/00313831.2013.798833
Carricaburu, D. and Pierret, J. (1995) From biographical disruption to biographical reinforcement: The case of HIV-positive men. Sociology of Health & Illness 17 (1): 65–88. https://doi.org/10.1111/1467-9566.ep10934486
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du Plessis, G. and Bezuidenhout, F. (2009) HIV/AIDS as biographical disruption: A qualitative study of female clinic attendees. The Social Work Practitioner-Researcher 21 (2): 202–218.
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McAdams, D. P. (1988) Power, Intimacy, and the Life Story: Personological Inquiries into Identity. New York: Guilford.
Mill, J. E. and Anarfi, J. K. (2002) HIV risk environment for Ghanaian women: Challenges to prevention. Social Science & Medicine 54 (3): 325–337. ttps://doi.org/10.1016/S0277-9536(01)00031-4
Nigatu, T. (2012) Integration of HIV and noncommunicable diseases in health care delivery in low- and middle-income countries. Preventing Chronic Diseases 9: 1–3. https://doi.org/10.5888/pcd9.110331
Parker, R. and Aggleton, P. (2003) HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Sciences and Medicine 57 (1): 13–24. https://doi.org/10.1016/S0277-9536(02)00304-0
Reeve, J., Lloyd-Williams, M., Payne, S. and Dowrick, C. (2010) Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer. Health 14 (2): 178–195. https://doi.org/10.1177/1363459309353298
Ruddick, W. (2005) ‘Biographical lives’ revisited and extended. Journal of Ethics 9 (3): 501–515. https://doi.org/10.1007/s10892-005-3520-2
Smith, J. H. and Whiteside, A. (2010) The history of AIDS exceptionalism. Journal of the International AIDS Society 13 (47): 1–8. https://doi.org/10.1186/1758-2652-13-47
WHO and UNAIDS. (n.d.) Violence against Women and HIV/AIDS: Critical Intersections, Intimate Partner Violence and HIV/AIDS. Information Bulletin Series 1. Retrieved from http://www.who.int/hac/techguidance/pht/InfoBulletinIntimatePartnerViolenceFinal.pdf
Williams, G. (1984) The genesis of chronic illness: Narrative re-construction. Sociology of Health & Illness 6 (2): 175–200. https://doi.org/10.1111/1467-9566.ep10778250
Williams, S. J. (2000) Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness 22 (1): 40–67. https://doi.org/10.1111/1467-9566.00191
Wilson, S. (2007) ‘When you have children, you’re obliged to live’. Sociology of Health & Illness 29 (4): 610–626. https://doi.org/10.1111/j.1467-9566.2007.01008.x
AIDS Gov (2015) CD4 count. Retrieved from https://www.aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-aids/understand-your-test-results/cd4-count/
Alonzo, A. A. and Reynolds, N. R. (1995) Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science & Medicine 41 (3): 303–315. https://doi.org/10.1016/0277-9536(94)00384-6
Bruner, J. (1991) The narrative construction of reality. Critical Inquiry 18 (1): 1–21. https://doi.org/10.1086/448619
Bruner, J. (2002) Making Stories: Law, Literature, Life. Cambridge, MA: Harvard University Press.
Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health & Illness 4 (2): 167–182. https://doi.org/10.1111/1467-9566.ep11339939
Bury, M. (1991) The sociology of chronic illness: A review of research and prospects. Sociology of Health & Illness 13 (4): 451–468. https://doi.org/10.1111/j.1467-9566.1991.tb00522.x
Caine, V., Estefan, A. and Clandinin, D. J. (2013) A return to methodological commitment: Reflections on narrative inquiry. Scandinavian Journal of Educational Research 57 (6): 574–586. https://doi.org/10.1080/00313831.2013.798833
Carricaburu, D. and Pierret, J. (1995) From biographical disruption to biographical reinforcement: The case of HIV-positive men. Sociology of Health & Illness 17 (1): 65–88. https://doi.org/10.1111/1467-9566.ep10934486
Charmaz, K. (1983) Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness 5 (2): 168–195. https://doi.org/10.1111/1467-9566.ep10491512
Clandinin, D. J. and Connelly, F. M. (2000) Narrative Inquiry: Experience and Story in Qualitative Research. San Francisco, CA: Jossey-Bass.
Clandinin, D. J. and Huber, J. (2002) Narrative inquiry: Toward understanding life’s artistry. Curriculum Inquiry 32 (2): 161–169. https://doi.org/10.1111/1467-873X.00220
Clandinin, J. and Rosiek, J. (2007) Mapping a landscape of narrative inquiry: Borderland spaces and tensions. In J. Clandinin (ed.) Handbook of Narrative Inquiry: Mapping Methodology, 35–75. Thousand Oaks, CA: Sage. https://doi.org/10.4135/9781452226552.n2
Connelly, F. M. and Clandinin, D. J. (1990) Stories of experience and narrative enquiry. Educational Researcher 19 (5): 2–14. https://doi.org/10.3102/0013189X019005002
Covin, C. J. (2011) HIV/AIDS, chronic diseases and globalisation. Globalization & Health 7 (1): 31–36. https://doi.org/10.1186/1744-8603-7-31
Crites, S. D. (1971) Narrative quality of experience. Journal of the American Academy of Religion 39 (3): 291–311. https://doi.org/10.1093/jaarel/XXXIX.3.291
Dewey, J. (1938) Experience and Education. New York: Kappa Delta.
du Plessis, G. and Bezuidenhout, F. (2009) HIV/AIDS as biographical disruption: A qualitative study of female clinic attendees. The Social Work Practitioner-Researcher 21 (2): 202–218.
Frank, A. W. (1995) The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. https://doi.org/10.7208/chicago/9780226260037.001.0001
Holzemer, W. L., Human, S., Arudo, J., Rosa, M. E., Hamilton, M. J., Corless, I., Robinson, L., Nicholas, P. K., Wantland, D. J., Moezzi, S., Willard, S., Kirksey, K., Portillo, C., Sefcik, E., Rivero-Méndez, M. and Maryland, M. (2009) Feature: Exploring HIV stigma and quality of life for persons living with HIV infection. Journal of the Association of Nurses in AIDS Care 20 (3): 161–168. https://doi.org/10.1016/j.jana.2009.02.002
Hydén, L. C. (1997) Illness and narrative. Sociology of Health & Illness 19 (1): 48–69. https://doi.org/10.1111/j.1467-9566.1997.tb00015.x
Kawewa (n.d.). Situational analysis on HIV/AIDS in Kenya. Geneva: UNESCO. Retrieved from http://www.unesco.org/education/uie/pdf/Kawewa.pdf
Lekas, H., Siegel, K. and Schrimshaw, E. W. (2006) Continuities and discontinuities in the experiences of felt and enacted stigma among women with HIV/AIDS. Qualitative Health Research 16 (9): 1165–1190. https://doi.org/10.1177/1049732306292284
Link, B. G. and Phelan, J. C. (2001) Conceptualizing stigma. Annual Review of Sociology 27: 363–385. https://doi.org/10.1146/annurev.soc.27.1.363
Maina, G. M. (2015) Negotiating Identities: A Narrative Inquiry into the Experiences of People Living with HIV in Kenya. Unpublished doctoral dissertation, University of Alberta, Edmonton.
McAdams, D. P. (1988) Power, Intimacy, and the Life Story: Personological Inquiries into Identity. New York: Guilford.
Mill, J. E. and Anarfi, J. K. (2002) HIV risk environment for Ghanaian women: Challenges to prevention. Social Science & Medicine 54 (3): 325–337. ttps://doi.org/10.1016/S0277-9536(01)00031-4
Nigatu, T. (2012) Integration of HIV and noncommunicable diseases in health care delivery in low- and middle-income countries. Preventing Chronic Diseases 9: 1–3. https://doi.org/10.5888/pcd9.110331
Parker, R. and Aggleton, P. (2003) HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Sciences and Medicine 57 (1): 13–24. https://doi.org/10.1016/S0277-9536(02)00304-0
Reeve, J., Lloyd-Williams, M., Payne, S. and Dowrick, C. (2010) Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer. Health 14 (2): 178–195. https://doi.org/10.1177/1363459309353298
Ruddick, W. (2005) ‘Biographical lives’ revisited and extended. Journal of Ethics 9 (3): 501–515. https://doi.org/10.1007/s10892-005-3520-2
Smith, J. H. and Whiteside, A. (2010) The history of AIDS exceptionalism. Journal of the International AIDS Society 13 (47): 1–8. https://doi.org/10.1186/1758-2652-13-47
WHO and UNAIDS. (n.d.) Violence against Women and HIV/AIDS: Critical Intersections, Intimate Partner Violence and HIV/AIDS. Information Bulletin Series 1. Retrieved from http://www.who.int/hac/techguidance/pht/InfoBulletinIntimatePartnerViolenceFinal.pdf
Williams, G. (1984) The genesis of chronic illness: Narrative re-construction. Sociology of Health & Illness 6 (2): 175–200. https://doi.org/10.1111/1467-9566.ep10778250
Williams, S. J. (2000) Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness 22 (1): 40–67. https://doi.org/10.1111/1467-9566.00191
Wilson, S. (2007) ‘When you have children, you’re obliged to live’. Sociology of Health & Illness 29 (4): 610–626. https://doi.org/10.1111/j.1467-9566.2007.01008.x
Published
2017-05-04
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How to Cite
Maina, G. M., Caine, V., Mill, J., & Wimmer, R. (2017). Exploring the meaning of living with HIV as a chronic illness in Kenya: A narrative inquiry. Communication and Medicine, 13(2), 215-226. https://doi.org/10.1558/cam.27949
