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Life with HIV as a chronic illness: A theoretical and methodological framework for antiretroviral treatment studies in resource-limited settings

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Abstract

The large-scale introduction of antiretroviral treatment (ART) in the developing world has transformed HIV/AIDS into a manageable chronic condition. However, research is urgently needed to address the specific needs for sustainable ART scale-up in these high-prevalence, resource-limited settings. The current article aims to set a new agenda for future research on the facilitators of and impediments to lasting success of ART in resource-limited settings. There are two parts to this article: (1) construction of a robust theoretical framework labelled the Individual-Family-Community (IFC) model and including the potentially valuable concepts of hybrid identity, family resilience and competent communities, to explain the impact of HIV/AIDS and ART on those affected, and the response of society; and (2) specification of associated methodological tools, that is, latent growth modelling, to generate new knowledge and implement the IFC-model. The proposed theoretical framework and the associated methodology could guide future HIV/AIDS research by suggesting pathways to model the recent paradigm shift of AIDS care to chronic disease care, as well as a full-blown epidemic that affects all aspects of society in a resource-limited setting.

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References

  • Abaasa, A. et al (2008) Good adherence to HAART and improved survival in a community HIV/AIDS treatment and care programme: The experience of The AIDS Support Organization (TASO), Kampala, Uganda. BMC Health Services Research 8: 241.

    Article  Google Scholar 

  • Adams, S., Pill, R. and Jones, A. (1997) Medication, chronic illness and identity: The perspective of people with asthma. Social Science & Medicine 45 (2): 189–201.

    Article  Google Scholar 

  • Aujoulat, I., Marcolongo, R., Bonadiman, L. and Deccache, A. (2008) Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control. Social Science & Medicine 66 (5): 1228–1239.

    Article  Google Scholar 

  • Badia, X., Podzamczer, D., Casado, A., Lopez-David, C. and Garcia, M. (2000) Evaluating changes in health status in HIV-infected patients: Medical Outcomes Study-HIV and Multidimensional Quality of Life-HIV Quality of Life questionnaires. Spanish MOS-HIV and MQOL-HIV Validation Group. AIDS 14 (10): 1439–1447.

    Article  Google Scholar 

  • Barth, R.E., Schim Van Der Loeff, M.F., Schuurman, R., Hoepelman, A.I.M. and Wensing, A.M.J. (2010) Virological follow-up of adult patients in antiretroviral treatment programmes in sub-Saharan Africa: A systematic review. The Lancet Infectious Diseases 10 (3): 155–166.

    Article  Google Scholar 

  • Bhanjee, T., Mugabe, M. and Mawoneke, S. (2008) Measuring HIV and AIDS community competence using SAT's Competence Tool (SATCOMP): A Case Study of AIDS among us in Zimbabwe. Canadian Journal of Public Health. Revue Canadienne de Sante Publique 99 (Supplement 1): S27–S34.

    Google Scholar 

  • Brown-Baatjies, O., Fouché, P. and Greeff, A. (2008) The development and relevance of the resiliency model of family stress, adjustment and adaptation. Acta Academica 40 (1): 78–126.

    Google Scholar 

  • Burgoyne, R. and Renwick, R. (2004) Social support and quality of life over time among adults living with HIV in the HAART era. Social Science & Medicine 58 (7): 1353–1366.

    Article  Google Scholar 

  • Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health & Illness 4 (2): 169–182.

    Article  Google Scholar 

  • Bury, M. (1991) The sociology of chronic illness: A review of research and prospects. Sociology of Health & Illness 13 (4): 451–458.

    Article  Google Scholar 

  • Bury, M. (2002) Sociological theory and chronic illness: Current perspectives and debates. Österreichische Zeitschrift für Soziologie 27 (4): 7–22.

    Article  Google Scholar 

  • Bury, M. and Gabe, J. (eds.) (2004) The Sociology of Health and Illness. New York: Routledge.

    Google Scholar 

  • Campbell, C., Nair, Y. and Maimane, S. (2007) Building contexts that support effective community responses to HIV/AIDS: A South African case study. American Journal of Community Psychology 39 (3): 347–363.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Charmaz, K. (2000) Experiencing chronic illness. In: G.L. Albrecht, R. Fitzparick, S.C. Scrimshaw, (eds.) The Handbook of Social Studies in Health and Medicine. London: Sage, p. 546.

    Google Scholar 

  • Ciambrone, D. (2001) Illness and other assaults on self: The relative impact of HIV/AIDS on women's lives. Sociology of Health & Illness 23 (4): 517–540.

    Article  Google Scholar 

  • Crossley, M. (1998) Sick role or empowerment? The ambiguities of life with an HIV positive diagnosis. Sociology of Health & Illness 20 (4): 507–531.

    Article  Google Scholar 

  • Diez-Roux, A.V. (1998) Bringing context back into epidemiology: Variables and fallacies in multilevel analysis. American Journal of Public Health 88 (2): 216–222.

    Article  Google Scholar 

  • Diez-Roux, A.V. (2000) Multilevel analysis in public health research. Annual Review of Public Health 21: 171–192.

    Article  Google Scholar 

  • Duncan, C., Jones, K. and Moon, G. (1996) Health-related behaviour in context: A multilevel modelling approach. Social Science & Medicine 42 (6): 817–830.

    Article  Google Scholar 

  • Duncan, T.E., Duncan, S.C., Strycker, L.A., Li, F. and Alpert, A. (1999) An Introduction to Latent Growth Curve Modeling: Concepts, Issues, and Applications. Mahwah, NJ: Lawrence Erlbaum.

    Google Scholar 

  • Emmett, S.D. et al (2010) Predicting virologic failure among HIV-1-Infected children receiving antiretroviral therapy in Tanzania: A cross-sectional study. JAIDS Journal of Acquired Immune Deficiency Syndromes 54 (4): 368–375.

    Article  Google Scholar 

  • European Centre for the Epidemiological Monitoring of AIDS (Euro.Hiv). (2001) HIV/AIDS surveillance in Europe. End-year report 2000 No. 64. In: European Commission (ed.) Stockholm, Sweden: EuroHIV.

  • Fisher, J. and Corcoran, K. (2007) Measures for Clinical Practice and Research: A Sourcebook (Volume 1 Couples, Families and Children). Oxford, UK: Oxford University Press.

    Google Scholar 

  • Giddens, A. (2006) Sociology, 5th edn. Cambridge, MA: Polity Press.

    Google Scholar 

  • Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall.

    Google Scholar 

  • Haas, S. (2008) Trajectories of functional health: The ‘long arm’ of childhood health and socioeconomic factors. Social Science & Medicine 66 (4): 849–861.

    Article  Google Scholar 

  • Hayes, A. (2006) A primer on multilevel modeling. Human Communication Research 32 (4): 385.

    Article  Google Scholar 

  • Hermann, K. et al (2009) Community health workers for ART in sub-Saharan Africa: Learning from experience – Capitalizing on new opportunities. Human Resources for Health 7 (1): 31.

    Article  Google Scholar 

  • Hill, R. (1949) Families Under Stress: Adjustment to the Crisis of War, Separation and Reunion. New York: Harper.

    Google Scholar 

  • Hosegood, V., McGrath, N., Herbst, K. and Timaeus, I.M. (2004) The impact of adult mortality on household dissolution and migration in rural South Africa. AIDS 18 (11): 1585–1590.

    Article  Google Scholar 

  • Hosegood, V., Preston-Whyte, E., Busza, J., Moitse, S. and Timaeus, I.M. (2007) Revealing the full extent of households’ experiences of HIV and AIDS in rural South Africa. Social Science & Medicine 65 (6): 1249–1259.

    Article  Google Scholar 

  • Kazatchkine, M. and Fransen, L. (2008) Turning the world on its ear: Defining milestones on the road to Haart. In: J.M. Zuniga, A. Whiteside, A. Ghaziani and J.G. Bartlett (eds.) A Decade of Haart. The Development and Global Impact of Highly Active Antiretroviral Therapy. Oxford, UK: Oxford University Press.

    Google Scholar 

  • Kelly, M.P. and Field, D. (1996) Medical sociology, chronic illness and the body. Sociology of Health & Illness 18 (2): 241–257.

    Article  Google Scholar 

  • Kober, K. and Van Damme, W. (2004) Scaling up access to antiretroviral treatment in Southern Africa: Who will do the job? The Lancet 329: 103–107.

    Article  Google Scholar 

  • Kralik, D. (2002) The quest for ordinariness: Transition experienced by midlife women living with chronic illness. Journal of Advanced Nursing 39 (2): 146–154.

    Article  Google Scholar 

  • Kralik, D., Koch, T., Price, K. and Howard, N. (2004) Chronic illness self-management: Taking action to create order. Journal of Clinical Nursing 13 (2): 259–267.

    Article  Google Scholar 

  • Kralik, D., Van Loon, A. and Visentin, K. (2006) Resilience in the chronic illness experience. Educational Action Research 14 (2): 187–201.

    Article  Google Scholar 

  • Lamboray, J.L. and Skevington, S.M. (2001) Defining AIDS competence: A working model for practical purposes. Journal of International Development 13 (4): 513–521.

    Article  Google Scholar 

  • McCubbin, H. (2001) In search of resiliency in families – Vision quest of a native Hawaiian family scholar. Marriage & Family Review 30 (3): 47–81.

    Article  Google Scholar 

  • McCubbin, H.I. and McCubbin, M.A. (1988) Typologies of resilient families: Emerging roles of social class and ethnicity. Family Relations 37 (3): 247–254.

    Article  Google Scholar 

  • McCubbin, H.I., Thompson, A.I. and McCubbin, M.A. (1996) Family Assessment: Resiliency, Coping and Adaptation (Inventories for Research and Practice). Madison, WI: University of Wisconsin Publishers.

    Google Scholar 

  • McCubbin, J.A., Futrell, E.A., Thompson, E.A. and Thompson, A.I. (1998) Resilient families in an ethnic and cultural context. In: H.I. McCubbin, E.A. Thompson, A.I. Thompson and J.E. Fromer (eds.) Resilience in Families. Thousand Oaks, CA: Sage.

    Google Scholar 

  • McCubbin, M.A. and McCubbin, H.I. (1993) Families coping with illness: The resiliency model of family stress, adjustment and adaptation. In: C.B. Danielson, B. Hamel-Bissel and P. Winstead-Fry (eds.) Families, health & illness: Perspectives on coping and intervention, St. Louis: Mosby, pp. 21–64.

  • Moatti, J.-P. and Souteyrand, Y. (2000) Editorial: HIV/AIDS social and behavioural research: Past advances and thoughts about the future. Social Science & Medicine 50 (11): 1519–1532.

    Article  Google Scholar 

  • Mocroft, A. et al (2003) Decline in the AIDS and death rates in the EuroSIDA study: An observational study. The Lancet 362 (9377): 22–29.

    Article  Google Scholar 

  • Mykhalovskiy, E. and Rosengarten, M. (2009a) Commentaries on the nature of social and cultural research: Interviews on HIV/AIDS with Judy Auerbach, Susan Kippax, Steven Epstein, Didier Fassin, Barry Adam and Dennis Altman. Social Theory & Health 7 (3): 284–304.

    Article  Google Scholar 

  • Mykhalovskiy, E. and Rosengarten, M. (2009b) HIV/AIDS in its third decade: Renewed critique in social and cultural analysis – An introduction. Social Theory & Health 7 (3): 187–195.

    Article  Google Scholar 

  • Nam, S.L, Fielding, K., Avalos, A., Dickinson, D., Gaoloathe, T. and Geissler, P.W. (2008) The relationship of acceptance or denial of HIV-status to antiretroviral adherence among adult HIV patients in urban Botswana. Social Science & Medicine 67 (2): 301–310.

    Article  Google Scholar 

  • Ooms, G. (2007) The right to health and the sustainability of healthcare: Why a new global health aid paradigm is needed. Doctoral thesis, Ghent University.

  • Parsons, J.T. (1951) The Social System. Chicago, IL: Free Press.

    Google Scholar 

  • Patterson, J.M. (1988) Families experiencing stress: I. The Family Adjustment and Adaptation Response Model: II. Applying the FAAR Model to health-related issues for intervention and research. Families, Systems & Health 6 (2): 202–237.

    Google Scholar 

  • Patterson, J.M. (2002) Integrating family resilience and family stress theory. Journal of Marriage and Family 64 (2): 349–360.

    Article  Google Scholar 

  • Pierret, J. (2000) Everyday life with AIDS/HIV: Surveys in the social sciences. Social Science & Medicine 50 (11): 1589–1598.

    Article  Google Scholar 

  • Pierret, J. (2001) Interviews and biographical time: The case of long-term HIV nonprogressors. Sociology of Health & Illness 23 (2): 159–179.

    Article  Google Scholar 

  • Pierret, J. (2007) An analysis over time (1990–2000) of the experiences of living with HIV. Social Science & Medicine 65 (8): 1595–1605.

    Article  Google Scholar 

  • Raudenbush, S.W. and Bryk, A.S. (2002) Hierarchical Linear Models: Applications and Data Analysis Methods. Thousand Oaks, CA: Sage.

    Google Scholar 

  • Reynolds, N.R. et al (2004) Factors influencing medication adherence beliefs and self-efficacy in persons naive to antiretroviral therapy: A multicenter, cross-sectional study. AIDS and Behavior 8 (2): 141–150.

    Article  Google Scholar 

  • Russell, S. and Seeley, J. (2010) The transition to living with HIV as a chronic condition in rural Uganda: Working to create order and control when on antiretroviral therapy. Social Science and Medicine 70 (3): 375–382.

    Article  Google Scholar 

  • Scandlyn, J. (2000) When AIDS became a chronic disease. Western Journal of Medicine 172 (2): 130–133.

    Article  Google Scholar 

  • Seeley, J. et al (2008) Using in-depth qualitative data to enhance our understanding of quantitative results regarding the impact of HIV and AIDS on households in rural Uganda. Social Science & Medicine 67 (9): 1434–1446.

    Article  Google Scholar 

  • Shin, T. (2007) Comparison of three growth modeling techniques in the multilevel analysis of longitudinal academic achievement scores: Latent growth modeling, hierarchical linear modeling, and longitudinal profile analysis via multidimensional scaling. Asia Pacific Education Review 8 (2): 262–275.

    Article  Google Scholar 

  • Simon, J.B., Murphy, J.J. and Smith, S.M. (2005) Understanding and fostering family resilience. The Family Journal 13 (4): 427–436.

    Article  Google Scholar 

  • Simon, L.D. and Ismail, H. (2008) Southern African AIDS Trust: An evaluation of the process and outcomes of community-based partner graduation. Canadian Journal of Public Health. Revue Canadienne de Sante Publique 99 (Supplement 1): S35–S41.

    Google Scholar 

  • Singer, J.D. and Willett, J.B. (2003) Applied Longitudinal Data Analysis: Modeling Change and Event Occurrence. Oxford, UK: Oxford University Press.

    Book  Google Scholar 

  • Snijders, T.A.B. and Bosker, R.J. (1999) Multilevel Analysis: An Introduction to Basic and Advanced Multilevel Modeling. London: Sage Publications.

    Google Scholar 

  • Strauss, A. and Glaser, B. (1975) Chronic Illness and Quality of Life. Saint Louis, MO: Mosby.

    Google Scholar 

  • The Constellation for AIDS Competence. (2009) Annual Report 2008. Grez-Doiceau, Belgium: The Constellation for AIDS Competence.

  • Thorpe, R.D. (2009) Doing chronic illness? Complementary medicine use among people living with HIV/AIDS in Australia. Sociology of Health & Illness 31 (3): 375–389.

    Article  Google Scholar 

  • Twisk, J.W.R. (2007) Applied Multilevel Analysis: A Practical Guide. Cambridge, UK: Cambridge University Press.

    Google Scholar 

  • UNAIDS. (2005) Evaluation of the UNAIDS/UNITAR AIDS Competence Programme. Geneva, Switzerland: UNAIDS.

  • UNAIDS & WHO. (2010) Global Report. UNAIDS report on the global AIDS epidemic 2010. Geneva: UNAIDS & WHO.

  • Van Damme, W., Kober, K. and Kegels, G. (2008) Scaling-up antiretroviral treatment in Southern African countries with human resource shortage: How will health systems adapt? Social Science & Medicine 66 (10): 2108–2121.

    Article  Google Scholar 

  • Van Rensburg, H.C.J. and Ngwena, C. (2001) Health and health care in South Africa against an African background. In: W.C. Cockerham (ed.) The Blackwell Companion to Medical Sociology. Oxford, UK: Blackwell Publishing.

    Google Scholar 

  • Waller, M.A. (2001) Resilience in ecosystemic context: Evolution of the concept. American Journal of Orthopsychiatry 71 (3): 290–297.

    Article  Google Scholar 

  • Walsh, F. (2002) A family resilience framework: Innovative practice applications. Family Relations 51 (2): 130–137.

    Article  Google Scholar 

  • Weidle, P.J. et al (2006) Adherence to antiretroviral therapy in a home-based AIDS care programme in rural Uganda. Lancet 368 (9547): 1587–1594.

    Article  Google Scholar 

  • WHO & UNICEF. (2009) Report on the Review of ACP and COMATAA re HIV/AIDS in Papua New Guinea. Geneva, Switzerland: World Health Organization & UNICEF.

  • Williams, S. (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.

    Article  Google Scholar 

  • Wong, W.K.T. and Ussher, J.M. (2008) Life with HIV and AIDS in the era of effective treatments: Its not just about living longer! Social Theory & Health 6 (2): 117–131.

    Article  Google Scholar 

  • Wouters, E. (2009) Mobilising the community in the fight against HIV/AIDS. Lancet 374 (9693): 1501.

    Article  Google Scholar 

  • Wouters, E., Meulemans, H., Van Rensburg, H.C.J., Mortelmans, D. and Heunis, J.C. (2007) Short-term physical and emotional health outcomes of public sector ART in the Free State Province of South Africa. Quality of Life Research 16 (9): 1461–1471.

    Article  Google Scholar 

  • Wouters, E., Heunis, J.C., Van Rensburg, D. and Meulemans, H. (2009a) Physical and emotional health outcomes after 12 months of public-sector antiretroviral treatment in the Free State Province of South Africa: A longitudinal study using structural equation modelling. BMC Public Health 9: 103.

    Article  Google Scholar 

  • Wouters, E., Meulemans, H. and Van Rensburg, H.C.J. (2009b) Slow to Share: Social capital and its role in public HIV disclosure among public sector ART patients in the Free State province of South Africa. AIDS Care 21 (4): 411–421.

    Article  Google Scholar 

  • Wouters, E., Van Damme, W., Van Loon, F., Van Rensburg, D. and Meulemans, H. (2009c) Public-sector ART in the Free State Province, South Africa: Community support as an important determinant of outcome. Social Science & Medicine 69 (8): 1177–1185.

    Article  Google Scholar 

  • Wouters, E., Van Loon, F., Van Rensburg, H.C.J. and Meulemans, H. (2009d) Community support and disclosure of serostatus to family members by public-sector ART patients in the Free State Province of South Africa. Aids Patient Care and STDS, 23 (5): 357–364.

    Article  Google Scholar 

  • Wouters, E., Van Rensburg, H.C.J., Van Loon, F. and Meulemans, H. (2009e) State of the ART programme: Clinical effectiveness and physical and emotional quality-of-life improvements in the Free State Province, South Africa. AIDS Care 21 (11): 1401–1411.

    Article  Google Scholar 

  • Zachariah, R. et al (2007) Community support is associated with better antiretroviral treatment outcomes in a resource-limited rural district in Malawi. Transactions of the Royal Society of tropical Medicine and Hygiene 101 (1): 79–84.

    Article  Google Scholar 

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Acknowledgements

I would like to thank Prof. H.C.J. van Rensburg and Prof. H. Meulemans for their insightful comments on earlier drafts of the article.

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Wouters, E. Life with HIV as a chronic illness: A theoretical and methodological framework for antiretroviral treatment studies in resource-limited settings. Soc Theory Health 10, 368–391 (2012). https://doi.org/10.1057/sth.2012.12

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