Spinning plates: livelihood mobility, household responsibility and anti-retroviral treatment in an urban Zambian community during the HPTN 071 (PopART) study

Virginia Bond, Fredrick Ngwenya, Angelique Thomas, Melvin Simuyaba, Graeme Hoddinott, Sarah Fidler, Richard Hayes, Helen Ayles, Janet Seeley, HPTN 071 (PopART) study team, Virginia Bond, Fredrick Ngwenya, Angelique Thomas, Melvin Simuyaba, Graeme Hoddinott, Sarah Fidler, Richard Hayes, Helen Ayles, Janet Seeley, HPTN 071 (PopART) study team

Abstract

Introduction: Qualitative data are lacking on the impact of mobility among people living with HIV (PLHIV) and their decision-making around anti-retroviral treatment (ART). We describe challenges of juggling household responsibility, livelihood mobility and HIV management for six PLHIV in urban Zambia.

Methods: Six PLHIV (three men and three women, aged 21 to 44) were recruited from different geographic zones in one urban community drawn from a qualitative cohort in a social science component of a cluster-randomized trial (HPTN071 PopART). Participants were on ART (n = 2), not on ART (n = 2) and had started and stopped ART (n = 2). At least two in-depth interviews and participant observations, and three drop-in household visits with each were carried out between February and August 2017. Themed and comparative analysis was conducted.

Results: The six participants relied on the informal economy to meet basic household needs. Routine livelihood mobility, either within the community and to a nearby town centre, or further afield for longer periods of time, was essential to get by. Although aware of ART benefits, only one of the six participants managed to successfully access and sustain treatment. The other five struggled to find time to access ART alongside other priorities, routine mobility and when daily routines were more chaotic. Difficulty in accessing ART was exacerbated by local health facility factors (congestion, a culture of reprimanding PLHIV who miss appointments, sporadic rationed drug supply), stigma and more limited social capital.

Conclusions: Using a time-space framework illustrated how household responsibility, livelihood mobility and HIV management every day were like spinning plates, each liable to topple and demanding constant attention. If universal lifelong ART is to be delivered, the current service model needs to adjust the limited time that some PLHIV have to access ART because of household responsibilities and the need to earn a living moving around, often away from home. Practical strategies that could facilitate ART access in the context of livelihood mobility include challenging the practice of reprimand, improving drug supply, having ART services more widely distributed, mapped and available at night and weekends, and an effective centralized client health information system.

Keywords: ART; HIV; Household responsibility; Livelihood Mobility; Time-Geography; Zambia.

© 2018 The Authors. Journal of the International AIDS Society published by John Wiley & sons Ltd on behalf of the International AIDS Society.

References

    1. UNAIDS . Zambia Country Overview. UNAIDS: Geneva; 2018. Available from:
    1. Tanser F, Bärnighausen T, Vandormael A, Dobra A. HIV treatment cascade in migrants and mobile populations. Curr Opin HIV AIDS. 2015;10(6):430 Available from:
    1. Seeley JA, Allison EH. HIV/AIDS in fishing communities: challenges to delivering antiretroviral therapy to vulnerable groups. AIDS Care. 2005;17(6):688–97. Available from:
    1. De Bruijn M, van Dijk RA, Foeken DE. Mobile Africa: changing patterns of movement in Africa and beyond. Boston: Brill; 2001.
    1. Kagee A, Remien RH, Berkman A, Hoffman S, Campos L, Swartz L. Structural barriers to ART adherence in Southern Africa: challenges and potential ways forward. Glob Public Health. 2011;6(1):83–97. Available from:
    1. Lehane E, McCarthy G. Intentional and unintentional medication non‐adherence: a comprehensive framework for clinical research and practice? A discussion paper Int J Nurs Stud. 2007;44(8):1468–77. Available from:
    1. Blalock AC, McDaniel JS, Farber EW. Effect of employment on quality of life and psychological functioning in patients with HIV/AIDS. Psychosomatics. 2002;43(5):400–4. Available from:
    1. Weiser S, Wolfe W, Bangsberg D, Thior I, Gilbert P, Makhema J, et al. Barriers to antiretroviral adherence for patients living with HIV infection and AIDS in Botswana. JAIDS J Acquir Immune Defic Syndr. 2003;34(3):281–8. Available from:
    1. Takahashi LM, Wiebe D, Rodriguez R. Navigating the time‐space context of HIV and AIDS: daily routines and access to care. Soc Sci Med. 2001;53(7):845–63. Available from:
    1. Harvey D. The condition of postmodernity: an enquiry into the origins of cultural change. Cambridge, MA: Blackwell; 1990.
    1. Prince R. HIV and the moral economy of survival in an East African city. Med Anthropol Q. 2012;26(4):534–56. Available from:
    1. Kalofonos I. “All I Eat Is ARVs!” The paradox of AIDS treatment interventions in Mozambique. Med Anthropol Q. 2010;24(3):363–80. Available from:
    1. Nguyen VK. The republic of therapy: triage and sovereignty in West Africa's time of AIDS. Duke University Press: North Carolina, United States; 2011. Available from: 11.594075
    1. Castro A. Adherence to antiretroviral therapy: merging the clinical and social course of AIDS. PLoS Med. 2005;2(12):1217–21.
    1. Mizuno Y, Purcell D, Borkowski TM, Knight K; SUDIS Team . The life priorities of HIV‐seropositive injection drug users: findings from a community‐based sample. AIDS Behav. 2003;4:395–403. Available from:
    1. Fassin D. Another politics of life is possible In: Fassin D, editor. Theory, Culture & Society. Oxford: Wiley; 2009. p. 44–60. Available from:
    1. Mills EJ, Nachega JB, Bangsberg DR, Singh S, Rachlis B, Wu P, et al. Adherence to HAART: a systematic review of developed and developing nation patient‐reported barriers and facilitators. PLoS Med. 2006;3(11):2039–64.
    1. Ferguson J. Expectations of modernity: myths and meanings of urban life on the Zambian Copperbelt (review). Anthropol Q. 2001;74(2):89–90. Available from:
    1. Hardon A, Dilger H. Global AIDS medicines in east African health institutions. Med Anthropol. 2011;30(2):136–57.
    1. Ware NC, Idoko J, Kaaya S, Biraro IA, Wyatt MA, Agbaji O, et al. Explaining adherence success in sub‐Saharan Africa: an ethnographic study. PLoS Med. 2009;6(1):e1000011 Available from:
    1. Taylor BS, Garduño LS, Reyes EV, Valiño R, Rojas R, Donastorg Y, et al. HIV care for geographically mobile populations. Mt Sinai J Med. 2011;78(3):342–51. Available from:
    1. Seeley J, Watts CH, Kippax S, Russell S, Heise L, Whiteside A. Addressing the structural drivers of HIV: a luxury or necessity for programmes? J Int AIDS Soc. 2012; 15(Suppl 1):1–4.
    1. Shanaube K, Schaap A, Floyd S, Phiri M, Griffith S, Chaila J, et al. What works – reaching universal HIV testing. AIDS. 2017;31(11):1555–64. Available from:
    1. Taylor BS, Reyes E, Levine EA, Khan SZ, Garduño LS, Donastorg Y, et al. Patterns of geographic mobility predict barriers to engagement in HIV care and antiretroviral treatment adherence. AIDS Patient Care STDS. 2014;28(6):284–95. Available from:
    1. Hayes R, Ayles H, Beyers N, Sabapathy K, Floyd S, Shanaube K, et al. HPTN 071 (PopART): rationale and design of a cluster‐randomised trial of the population impact of an HIV combination prevention intervention including universal testing and treatment ‐ a study protocol for a cluster randomised trial. Trials. 2014;15(1):57 Available from:
    1. Hayes R, Floyd S, Schaap A, Shanaube K, Bock P, Sabapathy K, et al. A universal testing and treatment intervention to improve HIV control: one‐year results from intervention communities in Zambia in the HPTN 071 (PopART) cluster‐randomised trial. PLoS Med. 2017;14(5):1–22. Available from:
    1. Kielmann K, Cataldo F, Seeley J. Introduction to qualitative research methodology: a training manual. UK: Department for International Development (DfID); 2012.
    1. Bond V, Hoddinott G, Viljoen L, Simuyaba M, Musheke M, Seeley J. Good health and moral responsibility: key concepts underlying the interpretation of treatment as prevention in South Africa and Zambia before rolling out universal HIV testing and treatment. AIDS Patient Care STDS. 2016;30(9):425–34. Available from:
    1. Stake RE. The art of case study research. London: Sage; 1995.
    1. Seeley J, Bond V, Hoddinott G, Floyd S, Macleod D, Viljoen L, et al. Understanding time needed to link to care and start ART. Paper Presented at: The 9th International AIDS Society (IAS) conference on HIV Science; 2017 Jul 23–7; Paris.
    1. Central Statistical Office . Living conditions monitoring survey report Lusaka; 2015. Available from: .
    1. Bond V, Chiti B, Hoddinott G, Reynolds L, Schaap A, Simuyaba M, et al. “The difference that makes a difference”: highlighting the role of variable contexts within an HIV Prevention Community Randomised Trial (HPTN 071/PopART) in 21 study communities in Zambia and South Africa. AIDS Care. 2016;28:99–107.
    1. Ware NC, Wyatt MA, Geng EH, Kaaya SF, Agbaji OO, Muyindike WR, et al. Toward an understanding of disengagement from HIV treatment and care in Sub‐Saharan Africa: a qualitative study. PLoS Med. 2013;10(1):e1001369.
    1. Ministry of Community Development M and CH (MCDMCH). Harmonised manual of operations, social cash transfer scheme. Department of Social Welfare: Lusaka, Zambia; 2013.
    1. Renju J, Moshabela M, Mclean E, Ddaaki W, Skovdal M, Odongo F, et al. “Side effects “are” central effects” that challenge retention in HIV treatment programmes in six sub‐Saharan African countries: a multicountry qualitative study. Sex Transm Infect. 2017;93(Supplement 3):1–5.
    1. Campbell C, Scott K, Skovdal M, Madanhire C, Nyamukapa C, Gregson S. A good patient ? How notions of “a good patient” affect patient‐nurse relationships and ART adherence in Zimbabwe BMC Infect Dis. 2015;15:1–11. Available from: 10.1186/s12879-015-1139-x
    1. Musheke M, Bond V, Merten S. Individual and contextual factors influencing patient attrition from antiretroviral therapy care in an urban community of Lusaka, Zambia. J Int AIDS Soc. 2012;15(Suppl 1):1–9.
    1. Simuyaba M, Bond V, Hoddinott G, Bwalya C, Ndubani R, Ngwenya F, et al. A qualitative study exploring community stakeholder perceptions and experiences with rolling out universal treatment in HPTN 071 (PopART) study sites in Zambia. Paper Presented at: 8th South Africa AIDS Conference; 2017 Jun 13‐15; Durban.
    1. Mutevedzi PC, Lessells RJ, Heller T, Bärnighausen T, Cooke GS, Newell ML. Scale‐up of a decentralized HIV treatment programme in rural KwaZulu‐Natal, South Africa: does rapid expansion affect patient outcomes? Bull World Health Organ. 2010;88(8):593–600. Available from:
    1. Palk L, Blower S. Mobility and circular migration in Lesotho: implications for transmission, treatment and control of a severe HIV epidemic. HHS Public Access. 2015;68(5):604–8. Available from:
    1. Prust ML, Banda CK, Nyirenda R, Chimbwandira F, Kalua T, Jahn A, et al. Multi‐month prescriptions, fast‐track refills, and community ART groups: results from a process evaluation in Malawi on using differentiated models of care to achieve national HIV treatment goals. J Int AIDS Soc. 2017;4(S4):41–50.
    1. Ministry of Health . Assessment of the Health Information System in Zambia. Evaluation. Lusaka, Zambia; 2007.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe