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Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study

Author

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  • Norma C Ware
  • John Idoko
  • Sylvia Kaaya
  • Irene Andia Biraro
  • Monique A Wyatt
  • Oche Agbaji
  • Guerino Chalamilla
  • David R Bangsberg

Abstract

Background: Individuals living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of prescribed doses of antiretroviral therapy (ART). This number exceeds the levels of adherence observed in North America and dispels early scale-up concerns that adherence would be inadequate in settings of extreme poverty. This paper offers an explanation and theoretical model of ART adherence success based on the results of an ethnographic study in three sub-Saharan African countries. Methods and Findings: Determinants of ART adherence for HIV-infected persons in sub-Saharan Africa were examined with ethnographic research methods. 414 in-person interviews were carried out with 252 persons taking ART, their treatment partners, and health care professionals at HIV treatment sites in Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda. 136 field observations of clinic activities were also conducted. Data were examined using category construction and interpretive approaches to analysis. Findings indicate that individuals taking ART routinely overcome economic obstacles to ART adherence through a number of deliberate strategies aimed at prioritizing adherence: borrowing and “begging” transport funds, making “impossible choices” to allocate resources in favor of treatment, and “doing without.” Prioritization of adherence is accomplished through resources and help made available by treatment partners, other family members and friends, and health care providers. Helpers expect adherence and make their expectations known, creating a responsibility on the part of patients to adhere. Patients adhere to promote good will on the part of helpers, thereby ensuring help will be available when future needs arise. Conclusion: Adherence success in sub-Saharan Africa can be explained as a means of fulfilling social responsibilities and thus preserving social capital in essential relationships. Using ethnographic data from Nigeria, Tanzania, and Uganda, Norma Ware and colleagues examine why levels of adherence to HIV/AIDS drugs are so much higher in sub-Saharan Africa than in North America. Background.: The acquired immunodeficiency syndrome (AIDS) epidemic has killed more than 25 million people since 1981, and about 30 million people (22 million in sub-Saharan Africa alone) are currently infected with the human immunodeficiency virus (HIV), which causes AIDS. HIV destroys immune system cells, leaving infected individuals susceptible to other infections. Early in the AIDS epidemic, most HIV-infected individuals died within ten years but in 1996, combination antiretroviral therapy (ART)—a mixture of powerful drugs—was developed. For HIV-infected people living in affluent, developed countries, HIV/AIDS became a chronic disease, but for the millions of infected people living in low- and middle-income countries, HIV/AIDS remained a death sentence—ART was simply too expensive. In 2003, this situation was declared a global health emergency. Today, through the concerted efforts of governments, international organizations, and funding bodies, nearly one-third of the people in developing and transitional countries who are in immediate need of life-saving ART receive free, reliable supplies of the drugs they need. Why Was This Study Done?: For ART to work, it must be taken regularly. If drug doses are missed, the virus can rebound and resistance to ART is more likely to develop. In poor countries, even though free antiretroviral drugs are increasingly available, many obstacles to good adherence to ART remain. These include economic obstacles (for example, the cost of traveling to clinics and the loss of earning associated with clinic attendance), and social, cultural, and behavioral barriers. Some patients fear disclosure, for example. Others receive conflicting messages about the benefits of ART. However, despite worries that the scale-up of ART provision in developing countries would be dogged by inadequate adherence, people living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of their prescribed doses of ART, a better level of adherence than in North America. In this study, the researchers investigate why ART adherence is so high in sub-Saharan Africa by analyzing qualitative data from an ethnographic study done in Nigeria, Tanzania, and Uganda. Qualitative data are often used to address “how” and “why” research questions: ethnography is a comprehensive qualitative approach to describing and explaining human behavior and culture. What Did the Researchers Do and Find?: For their study, the researchers interviewed 158 patients, 45 treatment partners (lay-people who help HIV-positive people keep to their treatment), and 49 health care workers. Patients were asked about their experiences of ART and about the help they received from their treatment partners; partners were asked about the type of help they gave and about their feelings about this help; health care workers were asked to describe a typical clinic visit and to indicate how adherence was discussed. From these interviews and observations of clinic sessions, the researchers identified several strategies used by patients and their treatment partners to overcome economic obstacles to ART adherence. These included borrowing and “begging” funds to pay for travel to clinics and making “impossible choices” to prioritize adherence, and “doing without.” The researchers' analysis also indicates that the prioritization of adherence to ART reflects the importance of relationships as a resource for managing economic hardship. So, for example, they found that treatment partners and health care workers expected patients to adhere to ART (which, by improving patients' health, improves their ability to support themselves and their families) and made their expectations known, thereby creating a responsibility among patients to adhere. Patients, in turn, adhered to their treatment to promote good will from their helpers and thus ensure their continuing help. What Do These Findings Mean?: The findings offer a possible explanation of adherence success in sub-Saharan Africa. The high level of adherence to ART can be explained as a means of fulfilling social responsibilities. Adherence, the researchers suggest, not only improves personal health (the main driver for ART adherence in resource-rich environments) but also preserves “social capital” in essential relationships. In other words, in sub-Saharan Africa, adherence to treatment may protect the relationships that individuals living in extreme poverty rely on to help them survive. Additional Information.: Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000011.

Suggested Citation

  • Norma C Ware & John Idoko & Sylvia Kaaya & Irene Andia Biraro & Monique A Wyatt & Oche Agbaji & Guerino Chalamilla & David R Bangsberg, 2009. "Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study," PLOS Medicine, Public Library of Science, vol. 6(1), pages 1-7, January.
  • Handle: RePEc:plo:pmed00:1000011
    DOI: 10.1371/journal.pmed.1000011
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    1. DiClemente-Bosco, Kira & Weber, Alison Z. & Harrison, Abigail & Tsawe, Nokwazi & Rini, Zanele & Brittain, Kirsty & Colvin, Christopher J. & Myer, Landon & Pellowski, Jennifer A., 2022. "Empowerment in pregnancy: ART adherence among women living with HIV in Cape Town, South Africa," Social Science & Medicine, Elsevier, vol. 296(C).
    2. Ezumah, Nkoli & Manzano, Ana & Ezenwaka, Uchenna & Obi, Uche & Ensor, Tim & Etiaba, Enyi & Onwujekwe, Obinna & Ebenso, Bassey & Uzochukwu, Benjamin & Huss, Reinhard & Mirzoev, Tolib, 2022. "Role of trust in sustaining provision and uptake of maternal and child healthcare: Evidence from a national programme in Nigeria," Social Science & Medicine, Elsevier, vol. 293(C).
    3. Perkins, Jessica M. & Subramanian, S.V. & Christakis, Nicholas A., 2015. "Social networks and health: A systematic review of sociocentric network studies in low- and middle-income countries," Social Science & Medicine, Elsevier, vol. 125(C), pages 60-78.
    4. Viet-Thi Tran & Mariam Mama Djima & Eugene Messou & Jocelyne Moisan & Jean-Pierre Grégoire & Didier K Ekouevi, 2018. "Avoidable workload of care for patients living with HIV infection in Abidjan, Côte d’Ivoire: A cross-sectional study," PLOS ONE, Public Library of Science, vol. 13(8), pages 1-15, August.
    5. Christian Unge & Björn Södergård & Gaetano Marrone & Anna Thorson & Abigael Lukhwaro & Jane Carter & Festus Ilako & Anna Mia Ekström, 2010. "Long-Term Adherence to Antiretroviral Treatment and Program Drop-Out in a High-Risk Urban Setting in Sub-Saharan Africa: A Prospective Cohort Study," PLOS ONE, Public Library of Science, vol. 5(10), pages 1-12, October.
    6. Patou Masika Musumari & Edwin Wouters & Patrick Kalambayi Kayembe & Modeste Kiumbu Nzita & Samclide Mutindu Mbikayi & S Pilar Suguimoto & Teeranee Techasrivichien & Bhekumusa Wellington Lukhele & Chri, 2014. "Food Insecurity Is Associated with Increased Risk of Non-Adherence to Antiretroviral Therapy among HIV-Infected Adults in the Democratic Republic of Congo: A Cross-Sectional Study," PLOS ONE, Public Library of Science, vol. 9(1), pages 1-10, January.
    7. Mushavi, Rumbidzai C. & Burns, Bridget F.O. & Kakuhikire, Bernard & Owembabazi, Moran & Vořechovská, Dagmar & McDonough, Amy Q. & Cooper-Vince, Christine E. & Baguma, Charles & Rasmussen, Justin D. & , 2020. "“When you have no water, it means you have no peace”: A mixed-methods, whole-population study of water insecurity and depression in rural Uganda," Social Science & Medicine, Elsevier, vol. 245(C).
    8. Dorien Vanden Bossche & Sara Willems & Peter Decat, 2022. "Understanding Trustful Relationships between Community Health Workers and Vulnerable Citizens during the COVID-19 Pandemic: A Realist Evaluation," IJERPH, MDPI, vol. 19(5), pages 1-15, February.
    9. Faith Martin & Steve Russell & Janet Seeley, 2014. "Higher Quality of Life and Lower Depression for People on ART in Uganda as Compared to a Community Control Group," PLOS ONE, Public Library of Science, vol. 9(8), pages 1-8, August.
    10. Beth S Rachlis & Edward J Mills & Donald C Cole, 2011. "Livelihood Security and Adherence to Antiretroviral Therapy in Low and Middle Income Settings: A Systematic Review," PLOS ONE, Public Library of Science, vol. 6(5), pages 1-15, May.
    11. Solome Kiribakka Bakeera & George Pariyo & Max Petzold & Sandro Galea & Wamala SP, 2012. "Associations between Socioeconomic Factors and Social Capital amongst Child Caregivers in Eastern Uganda," Review of Economics & Finance, Better Advances Press, Canada, vol. 2, pages 51-62, February.
    12. Jessica E Haberer & Adrian Cook & A Sarah Walker & Marjorie Ngambi & Alex Ferrier & Veronica Mulenga & Cissy Kityo & Margaret Thomason & Desiree Kabamba & Chifumbe Chintu & Diana M Gibb & David R Bang, 2011. "Excellent Adherence to Antiretrovirals in HIV+ Zambian Children Is Compromised by Disrupted Routine, HIV Nondisclosure, and Paradoxical Income Effects," PLOS ONE, Public Library of Science, vol. 6(4), pages 1-8, April.

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