3 - Between the Clinic and the Community: Temporality and Patterns of ART Adherence in the Western Cape Province, South Africa1
Corresponding Author(s) : Saris A.J.
African Sociological Review,
Vol. 19 No. 2 (2015): African Sociological Review
Abstract
In an ethnographic study conducted over thirty months in South Africa’s Western Cape
Province ending in 2012, we explored ART adherence amongst almost 200 patients attending
three clinics. This setting contained significant political, structural, economic and socio-cultural
barriers to the uptake of, and adherence to, treatment. Such barriers certainly impacted patient
drug use and the labelling of clients as ‘adherent’ or ‘non-adherent’. Yet, as our fieldwork
developed, it became apparent that these labels also bore little relationship to the amount and
regularity of drug consumption outside the clinic. Indeed, the people that we knew moved
through these labels in ways that could not simply be explained by brute socio-economic
circumstances, poor understanding of the functions of the drugs, or varying levels of family
and community support, which themselves often changed over time. This paper presents four
on-going ‘patterns of adherence’, which are clearly discernible in the communities in which
we worked. Each pattern is demonstrated through the life of an ‘index patient’ whose case
is seen to be representative of the range of experiences and practices observed under the terms
‘adherent’ and ‘non-adherent’. We argue that such terms are deeply contextual and, crucially,
temporally situated. The complex intertwining of political, economic, socio-cultural, gender,
and biological factors that constitute the lives of participants exists in time and we call for a
focus on evolving lives in relationship to changing health systems that can follow (and respond
to) such developments to better deliver both information and services.
Keywords
Download Citation
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- Abel, E. and Painter L. (2003) Factors that Influence Adherence to HIV Medications: Perceptions of Women and Health Care Providers. Journal of the Association of Nurses in Aids Care. 14(4) 61-69.
- Alwan, A. Global status report on noncommunicable diseases 2010. WHO. http://whqlibdoc.who.int/publications/2011/9789240686458_eng.pdf
- Ammassari, A., Antinori, A., Aloisi, M.S., Trotta, M.P., Murri, R., Bartoli, L., D’Arminio Monforte, A., Wu, A., Starace, F. (2004). Depressive Symptoms, Neurocognitive Impairment, and Adherence to Highly Active Antiretroviral Therapy Among HIV-Infected Persons. Psychosomatics. 45(5) 394-402.
- Baer, H. A., M. Singer and I Susser. (2013 [1993]) Medical Anthropology and the World System: Critical Perspectives, Third Edition. Santa Barbara, CA: Praeger.
- Bam, K., Rajesh M Rajbhandari, Dibesh B Karmacharya and Sameer M Dixit. (2015) Strengthening adherence to Anti Retroviral Therapy (ART) monitoring and support: operation research to identify barriers and facilitators in Nepal. Health Services Research. 15:188.
- Bardel A., Wallander M., Svarsdsudd, K. (2007). Factors associated with adherence to drug therapy: a population-based study. European Journal of Clinical Pharmacology, 63: 307-314 Battaglioli-DeNero, A. (2007). Strategies for Improving Patient Adherence to Therapy and Long-Term Patient Outcomes. Journal of the Association of Nurses in AIDS Care. 18(15) S17-S22.
- Biehl, J. (with photographs by T. Eskerod). (2007). Will to Live: AIDS Therapies and litics of Survival.
- Boulle A., Van Cutsem G., Hilderbrand, K. Cragg. C., Abrahams M., Mathee S., Ford N., Knigh L., Osler M., Myers, J., Goemaere E., Coetzee D., and Maartens, G. (2010). Seven Yeards Experience of a Primary Care Antiretroviral Treatment Programme in Khaylitsha, South Africa. AIDS 24:563-572.
- Brandt R. (2009) The Mental Health of People Living with HIV/AIDS in Africa: A Systematic review.
- African Journal of AIDS Research. 8:2:123-133. [accessed on 4 June 2014] Bruera, E. (2006). The Political Economiy of Antiretroviral Drugs. CSSR Working Paper No. 179.
- http://www.cssr.uct.ac.za/sites/cssr.uct.ac.za/files/pubs/wp179.pdf [accessed 11.02.2015]
- Burton, R. P. D., & Hudson, T. (2001). Achieving individually sustained commitment to treatment through self-constructed models of medical adherence. Sociological Spectrum, 21, 393-422.
- Conen, A., Fehr, J., Glass,T.R., Furrer, H., Weber, R., Vernazza, P., Hirschel, B., Cavassini, M., Bernasconi, E., Bucher, H.C. & Battega, M. (2009). Self-reported alcohol consumption and its association with adherence and outcome of antiretroviral therapy in the Swiss HIV Cohort Study.
- Antiviral Therapy, 14: 349-357.
- Crespo-Fierro, M. (1997). Compliance/Adherence and Care Management in HIV Disease. Journal of the Association of Nurses in AIDS Care. 8(4) 43-54.
- Daughters S., Magidson J., Schuster R., and Safren S. ACT Health: Combined Cognitive-Behavioral Depression and Medication Adherence Treatment for HIV-Infected Substance Users. Cognitive and Behavioural Practice. 17:309-321. [accessed on 17 March 2015] Deumert, A. (2010). ‘It would be nice if they could give us more language’ – Serving South Africa’s multilingual patient base. Social Science and Medicine. 71, 53-61. Donovan J., Blake D. (1992) Patient non-compliance: deviance or reasoned decision-making? Social Science and Medicine, 34:507-13.
- Ezekiel, Mangi Job, Aud Telle, James M Juma, Knut-Inge Klepp (2009). “When in the Body, It Makes You Look Fat and HIV Negative: The Constitution of Antiretroviral Therapy in Local Discourse Among Youth in Kahe, Tanzania. Social Science and Medicine. 68(2009):957-964.
- Farmer, P. (2001 [1999]) Infections and Inequalities. University of California Press: Berkeley.
- Gallant, J. (2002). Initial therapy of HIV infection. Journal of Clinical Virology. 25, 317-333.
- Gao X. Nau DP. Rosenbluth SA. Scott V. Woodward C. (2000). The relationship of disease severity,health beliefs and medication adherence among HIV patients. AIDS Care. 12:387–398.
- Garcia, P., Cote, J. (2003) Factors Affecting Adherence to Antiretroviral Therapy in People Living with HIV/AIDS. Journal of the Association of Nurses in AIDS e, 14(4): 37-45.
- Gay, C., Portillo, C., Kelly, R., Coggins, T., Davis, H., Aouizerat, B., Pullinger, C., Lee, K. (2010). Self-Reported Medication Adherence and Symptom Experience in Adults with HIV. Journal of the Association of Nurses in AIDS Care. 22(4) 257-268.
- Grant, E., Logie, D., Masura, M., Gorman, D., Murray, S. (2008). Factors facilitating and challenging access and adherence to antiretroviral therapy in a township in the Zambian Copperbelt: a qualitative study. AIDS Care 20(10) 1155-1160.
- Gray, J. (2006). Becoming Adherent: Experiences of Persons Living with HIV/AIDS.
- Journal of the Association of Nurses in AIDS Care. 17(3) 47-54.
- Guion, L., Diehl, D., McDonald, D. (2011). Triangulation: Establishing the Validity of Qualitative Studies. University of Florida, IFAS Extension. http://www.ie.ufrj.
- br/hpp/intranet/pdfs/texto_7_-_aulas_6_e_7.pdf [accessed 6.2.2015] Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF, Gerrits T. (2007). Hunger, waiting time and transport costs: Time to confront challenges to ART adherence in Africa. AIDS Care, 19(5): 658-665 Hargie, O., Morrow, N., Woodman, C. (1999). Pharmacists evaluation of key communication skills in practice. Patient Education and Counselling. 39, 61-70.
- Harries, D., Schouten, E., Libamba, E. (2006). Scaling up antiretroviral treatment in resource-poor settings. The Lancet. 367; 1870-1872.
- Hubbard M. (2006) Dealing with obstacles in adhering to Highly Active Antiretroviral Therapy.
- Journal of the Association of Nurses in AIDS Care, 17(1): 18-25 Ingersoll, K., Cohen, J. (2008). The impact of medication regimen factors on adherence to chronic treatment: a review of literature. Journal of Behavioural Medicine, 31: 213-224.
- Irving, A. (2011) Strange Distance: Towards an Anthropology of Interior Dialogue.
- MAQ, Vol. 25, Issue 1, pp. 22–44.
- Kaijee, L. and Beardsley, R. (1992). Pscyhotropic Drugs and Concepts of Compliance in a Rural Mental Health Clinic. Medical Anthropology Quarterly, 6(3): 271-287.
- Kalichman, S., Cherry, J., Cain, D. (2005). Nurse-delivered Antiretroviral Treatment Adherence Intervention for People with Low Literacy Skills and Living With HIV/AIDS. Journal of the Association of Nurses in AIDS Care. 16(5) 3-15.
- Katzenstein, D., (1997). Adherence as a Particular Issue with Protease Inhibitors. Journal of the Association of Nurses in AIDS Care. 8, 10-17.
- Larkan, F., Van Wyk, B., and Saris, AJ (2010). Of Remedies and Poisons: Recreational Use of Antiretroviral Drugs in the Social Imagination of South African Carers. African Sociological Review, 14 (2) 62-73.
- Leonard, L., J. L. Greene, E. Erbelding. (2007) Persons, Places, and Times: The Meanings of Repetition in an STD Clinic. MAQ. Vol. 21, Issue 2, pp. 154–168.
- Libby, A., Fish, D., Hosokawa, P., Linnebur, A., Metz, K., Nair, K., Saseen, J., Griend, J., Vu, S., Hirsch, J. (2013). Patient-Level Medication Regimen Complexity ith Chronic Disease. Clinical Therapeutics. 35(4) 385-398
- Lima, V., Fernandes, K., Rachlis, B., Druyts, E., Montaner, J., Hogg, R.(2008). Migration adversely affects antiretroviral adherence in a population-based cohort of HIV/ AIDS patients. Social Science & Medicine 68, 1044-1049.
- London, L. (2000). Alcohol consumption amongst South African farm workers: a challenge for post-apartheid health sector transformation. Drug Alcohol Depend; 59(2) 199-206.
- Maskovsky, J. (2005). Do People Fail Drugs, or Do Drugs Fail People?: The Discourse of Adherence. Transforming Anthropology, 13(2) 136-142.
- Mattes, D. (2012).“I am also a Human Being!”: Antiretroviral Treatment in Local Moral Worlds.
- Anthropology & Medicine. 19(1):79-84. [accessed on 3 February 2014].
- McKinstry, J. (2005) Using the Past to Step Forward: Fetal Alcohol Syndrome in the Western Cape Province of South Africa. American Journal of Public Health; 95(7) 1097-1099.
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- Mills, E. (2008) ‘Swimming in Confusion’: A Qualitative Appraisal of Factors Affecting Uptake and Adherence to Antiretroviral Treatment in South Africa. CSSR Working Paper no. 208.
- http://www.cssr.uct.ac.za/publications/working-paper/2008/swimming-confusion-qualitative-appraisal-factors [accessed 11.02.2015] Mitchell, G., and Linsk, N. (2004). A Multidimensional Conceptual Framework for Understanding HIV/AIDS as a Chronic Long-Term Illness. Social Work, 49(3) 469-477.
- Montoya, M. (2011) Making the Mexican Diabetic: Race, Science and the Genetics of Inequality.
- Berkeley: University of California Press.
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- Naimak, TH. (2006). Antiretroviral treatment in the western cape: a success story facilitated by the global fund, Centre for Social Science Research, Aids and Society Research unit working paper No.161,
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- Nattrass, N. (2004). Trading-Off Income and Health: AIDS And the Disability Grant in South Africa.
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- Trends in Microbiology, 16(12) 574-579.
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References
Abel, E. and Painter L. (2003) Factors that Influence Adherence to HIV Medications: Perceptions of Women and Health Care Providers. Journal of the Association of Nurses in Aids Care. 14(4) 61-69.
Alwan, A. Global status report on noncommunicable diseases 2010. WHO. http://whqlibdoc.who.int/publications/2011/9789240686458_eng.pdf
Ammassari, A., Antinori, A., Aloisi, M.S., Trotta, M.P., Murri, R., Bartoli, L., D’Arminio Monforte, A., Wu, A., Starace, F. (2004). Depressive Symptoms, Neurocognitive Impairment, and Adherence to Highly Active Antiretroviral Therapy Among HIV-Infected Persons. Psychosomatics. 45(5) 394-402.
Baer, H. A., M. Singer and I Susser. (2013 [1993]) Medical Anthropology and the World System: Critical Perspectives, Third Edition. Santa Barbara, CA: Praeger.
Bam, K., Rajesh M Rajbhandari, Dibesh B Karmacharya and Sameer M Dixit. (2015) Strengthening adherence to Anti Retroviral Therapy (ART) monitoring and support: operation research to identify barriers and facilitators in Nepal. Health Services Research. 15:188.
Bardel A., Wallander M., Svarsdsudd, K. (2007). Factors associated with adherence to drug therapy: a population-based study. European Journal of Clinical Pharmacology, 63: 307-314 Battaglioli-DeNero, A. (2007). Strategies for Improving Patient Adherence to Therapy and Long-Term Patient Outcomes. Journal of the Association of Nurses in AIDS Care. 18(15) S17-S22.
Biehl, J. (with photographs by T. Eskerod). (2007). Will to Live: AIDS Therapies and litics of Survival.
Boulle A., Van Cutsem G., Hilderbrand, K. Cragg. C., Abrahams M., Mathee S., Ford N., Knigh L., Osler M., Myers, J., Goemaere E., Coetzee D., and Maartens, G. (2010). Seven Yeards Experience of a Primary Care Antiretroviral Treatment Programme in Khaylitsha, South Africa. AIDS 24:563-572.
Brandt R. (2009) The Mental Health of People Living with HIV/AIDS in Africa: A Systematic review.
African Journal of AIDS Research. 8:2:123-133. [accessed on 4 June 2014] Bruera, E. (2006). The Political Economiy of Antiretroviral Drugs. CSSR Working Paper No. 179.
http://www.cssr.uct.ac.za/sites/cssr.uct.ac.za/files/pubs/wp179.pdf [accessed 11.02.2015]
Burton, R. P. D., & Hudson, T. (2001). Achieving individually sustained commitment to treatment through self-constructed models of medical adherence. Sociological Spectrum, 21, 393-422.
Conen, A., Fehr, J., Glass,T.R., Furrer, H., Weber, R., Vernazza, P., Hirschel, B., Cavassini, M., Bernasconi, E., Bucher, H.C. & Battega, M. (2009). Self-reported alcohol consumption and its association with adherence and outcome of antiretroviral therapy in the Swiss HIV Cohort Study.
Antiviral Therapy, 14: 349-357.
Crespo-Fierro, M. (1997). Compliance/Adherence and Care Management in HIV Disease. Journal of the Association of Nurses in AIDS Care. 8(4) 43-54.
Daughters S., Magidson J., Schuster R., and Safren S. ACT Health: Combined Cognitive-Behavioral Depression and Medication Adherence Treatment for HIV-Infected Substance Users. Cognitive and Behavioural Practice. 17:309-321. [accessed on 17 March 2015] Deumert, A. (2010). ‘It would be nice if they could give us more language’ – Serving South Africa’s multilingual patient base. Social Science and Medicine. 71, 53-61. Donovan J., Blake D. (1992) Patient non-compliance: deviance or reasoned decision-making? Social Science and Medicine, 34:507-13.
Ezekiel, Mangi Job, Aud Telle, James M Juma, Knut-Inge Klepp (2009). “When in the Body, It Makes You Look Fat and HIV Negative: The Constitution of Antiretroviral Therapy in Local Discourse Among Youth in Kahe, Tanzania. Social Science and Medicine. 68(2009):957-964.
Farmer, P. (2001 [1999]) Infections and Inequalities. University of California Press: Berkeley.
Gallant, J. (2002). Initial therapy of HIV infection. Journal of Clinical Virology. 25, 317-333.
Gao X. Nau DP. Rosenbluth SA. Scott V. Woodward C. (2000). The relationship of disease severity,health beliefs and medication adherence among HIV patients. AIDS Care. 12:387–398.
Garcia, P., Cote, J. (2003) Factors Affecting Adherence to Antiretroviral Therapy in People Living with HIV/AIDS. Journal of the Association of Nurses in AIDS e, 14(4): 37-45.
Gay, C., Portillo, C., Kelly, R., Coggins, T., Davis, H., Aouizerat, B., Pullinger, C., Lee, K. (2010). Self-Reported Medication Adherence and Symptom Experience in Adults with HIV. Journal of the Association of Nurses in AIDS Care. 22(4) 257-268.
Grant, E., Logie, D., Masura, M., Gorman, D., Murray, S. (2008). Factors facilitating and challenging access and adherence to antiretroviral therapy in a township in the Zambian Copperbelt: a qualitative study. AIDS Care 20(10) 1155-1160.
Gray, J. (2006). Becoming Adherent: Experiences of Persons Living with HIV/AIDS.
Journal of the Association of Nurses in AIDS Care. 17(3) 47-54.
Guion, L., Diehl, D., McDonald, D. (2011). Triangulation: Establishing the Validity of Qualitative Studies. University of Florida, IFAS Extension. http://www.ie.ufrj.
br/hpp/intranet/pdfs/texto_7_-_aulas_6_e_7.pdf [accessed 6.2.2015] Hardon AP, Akurut D, Comoro C, Ekezie C, Irunde HF, Gerrits T. (2007). Hunger, waiting time and transport costs: Time to confront challenges to ART adherence in Africa. AIDS Care, 19(5): 658-665 Hargie, O., Morrow, N., Woodman, C. (1999). Pharmacists evaluation of key communication skills in practice. Patient Education and Counselling. 39, 61-70.
Harries, D., Schouten, E., Libamba, E. (2006). Scaling up antiretroviral treatment in resource-poor settings. The Lancet. 367; 1870-1872.
Hubbard M. (2006) Dealing with obstacles in adhering to Highly Active Antiretroviral Therapy.
Journal of the Association of Nurses in AIDS Care, 17(1): 18-25 Ingersoll, K., Cohen, J. (2008). The impact of medication regimen factors on adherence to chronic treatment: a review of literature. Journal of Behavioural Medicine, 31: 213-224.
Irving, A. (2011) Strange Distance: Towards an Anthropology of Interior Dialogue.
MAQ, Vol. 25, Issue 1, pp. 22–44.
Kaijee, L. and Beardsley, R. (1992). Pscyhotropic Drugs and Concepts of Compliance in a Rural Mental Health Clinic. Medical Anthropology Quarterly, 6(3): 271-287.
Kalichman, S., Cherry, J., Cain, D. (2005). Nurse-delivered Antiretroviral Treatment Adherence Intervention for People with Low Literacy Skills and Living With HIV/AIDS. Journal of the Association of Nurses in AIDS Care. 16(5) 3-15.
Katzenstein, D., (1997). Adherence as a Particular Issue with Protease Inhibitors. Journal of the Association of Nurses in AIDS Care. 8, 10-17.
Larkan, F., Van Wyk, B., and Saris, AJ (2010). Of Remedies and Poisons: Recreational Use of Antiretroviral Drugs in the Social Imagination of South African Carers. African Sociological Review, 14 (2) 62-73.
Leonard, L., J. L. Greene, E. Erbelding. (2007) Persons, Places, and Times: The Meanings of Repetition in an STD Clinic. MAQ. Vol. 21, Issue 2, pp. 154–168.
Libby, A., Fish, D., Hosokawa, P., Linnebur, A., Metz, K., Nair, K., Saseen, J., Griend, J., Vu, S., Hirsch, J. (2013). Patient-Level Medication Regimen Complexity ith Chronic Disease. Clinical Therapeutics. 35(4) 385-398
Lima, V., Fernandes, K., Rachlis, B., Druyts, E., Montaner, J., Hogg, R.(2008). Migration adversely affects antiretroviral adherence in a population-based cohort of HIV/ AIDS patients. Social Science & Medicine 68, 1044-1049.
London, L. (2000). Alcohol consumption amongst South African farm workers: a challenge for post-apartheid health sector transformation. Drug Alcohol Depend; 59(2) 199-206.
Maskovsky, J. (2005). Do People Fail Drugs, or Do Drugs Fail People?: The Discourse of Adherence. Transforming Anthropology, 13(2) 136-142.
Mattes, D. (2012).“I am also a Human Being!”: Antiretroviral Treatment in Local Moral Worlds.
Anthropology & Medicine. 19(1):79-84. [accessed on 3 February 2014].
McKinstry, J. (2005) Using the Past to Step Forward: Fetal Alcohol Syndrome in the Western Cape Province of South Africa. American Journal of Public Health; 95(7) 1097-1099.
Mfecane, S. (2012). Narratives of HIV disclosure and masculinity in a South African village, Culture, Health & Sexuality. 2012:1-13 http://dx.doi.org/10.1080/136 91058.2011.647081 [accessed 16 June 2015]
Mfecane, S. (2011) To drink or not to drink? Identity dilemmas of men living with HIV, Agenda:Empowering women for gender equity, 25:4, 8-17. http://dx.doi.org/ 10.1080/10130950.2011.630520 [accessed 16 June 2015]
Mills, E. (2008) ‘Swimming in Confusion’: A Qualitative Appraisal of Factors Affecting Uptake and Adherence to Antiretroviral Treatment in South Africa. CSSR Working Paper no. 208.
http://www.cssr.uct.ac.za/publications/working-paper/2008/swimming-confusion-qualitative-appraisal-factors [accessed 11.02.2015] Mitchell, G., and Linsk, N. (2004). A Multidimensional Conceptual Framework for Understanding HIV/AIDS as a Chronic Long-Term Illness. Social Work, 49(3) 469-477.
Montoya, M. (2011) Making the Mexican Diabetic: Race, Science and the Genetics of Inequality.
Berkeley: University of California Press.
Murray, L., Semrau, K., McCurley, E., Thea, D., Scott, N., Mwiya, M., Kankasa, C., Bass, J., Bolton, P. (2009). Barriers to acceptance and adherence of antiretroviral therapy in urban Zambian women: a qualitative study. AIDS Care 21(2) 78-86.
Naimak, TH. (2006). Antiretroviral treatment in the western cape: a success story facilitated by the global fund, Centre for Social Science Research, Aids and Society Research unit working paper No.161,
Nam, S., Fielding, K., Avalos, A., Dickinson, D., Gaolathe, T., Geissler, P. (2008). The relationship of acceptance or denial of HIV-status to antiretroviral adherence among adult HIV patients in urban Botswana. Social Science and Medicine, 67: 1-310.
Nattrass, N. (2004). Trading-Off Income and Health: AIDS And the Disability Grant in South Africa.
CSSR Working Paper no. 82 http://cssr.uct.ac.za/sites/cssr. uct.ac.za/files/pubs/wp82.pdf [accessed 11.02.2015]
Nattrass, N. (2008). The (political) economics of antiretroviral treatment in developing countries.
Trends in Microbiology, 16(12) 574-579.
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