‘Yummy or crummy?’ The multisensory components of medicines-taking among HIV-positive youth

ABSTRACT

The global rollout of Antiretroviral Treatment (ART) has revealed an urgent need to understand the medicines-taking practices of HIV-positive adolescents. In the last decade, the literature on the social determinants of health has broadened the evidence-base on ART adherence. Interdisciplinary studies have expanded conceptions of medicines-taking beyond clinical or health systems frameworks, recognising the importance of socio-structural conditions and of patients’ beliefs and experiences. Participatory research techniques which foreground the perspectives of adolescents provide greater insights still into their adherence. This article explores the use of participatory methods within a broader study on the social determinants of ART adherence among HIV-positive adolescents in South Africa. We describe how participatory methods were incorporated into this study (n = 1,059 in the quantitative baseline). We focus on an exercise, ‘Yummy or crummy?’, that explored the multisensory dimensions of medicines-taking, including their colour, smell, shape, and delivery mechanism. We describe two principal findings: first, adolescents’ preference for greater understanding of the chemical workings of medicines, manifested in their preferences for colour, taste and shape of medicines; and second, the vital relationship between sensory preferences and the social imperatives of discretion and confidentiality regarding HIV-status.

KEYWORDS:

• HIV-positive youth
• antiretroviral treatment
• adherence
• multisensory components of medicines
• participatory research

Acknowledgments

The Mzantsi Wakho study was supported by the Nuffield Foundation under Grant CPF/41513, the International AIDS Society through an award of the Collaborative Initiative for Paediatric HIV Education and Research (CIPHER) (155-Hod); Evidence for HIV Prevention in Southern Africa (MM/EHPSA/UCT/05150014); Johnson and Johnson, and the John Fell Fund (103/757). Additional support for LC was provided by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement n8313421, and the Leverhulme Trust (PLP-2014-095). The project received ESRC Impact Acceleration Account Support. Authors thank participants and their families, and acknowledge the crucial support of the Mzantsi Wakho research team: Nontuthuzelo Bungane, Lizzy Button, Marisa Casale, Eda He, Alex Heusel, Sarah Hoeksma, Zukolwethu Jantjies, Chunyiswa Kama, Beauty Kamile, Bulelani Kinana, Vuyiseka Luke, Blessings Madondo, Kanya Makabane, Babalwa Makwenkwe, Thembani Mampangashe, Zoliswa Marikeni, Amanda Mbiko, Sally Medley, Phumla Mngese, Sibulele Mngese, Philiswa Mjo, Sindiswa Mona, Mavis Mpumlwana, Siyavuya Mqalo, Sinazo Mwellie, Phumla Myoyo, Unathi Ngesi, Sabatha Ngozi, Phumla Nobatye, Nisso Nurova, Marija Pantelic, Thandokazi Ramncwana, Julia Rosenfeld, Bongiwe Saliwe, Izidora Skracic, Janina Steinert, Babalwa Taleni and Mildred Thabeng. For their insights into participatory research, we thank Rachel Bray, Inge Corles, Caroline Kuo, Marija Pantelic and Morten Skovdal. For their fortitude in co-facilitating the exercises described here, we thank Lesley Gittings and Samantha Malunga. We are grateful to two anonymous reviewers who commented on previous drafts of this article.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Nuffield Foundation under [grant number CPF/41513]; the International AIDS Society through CIPHER grant [grant number 155-Hod]; Evidence for HIV Prevention in Southern Africa [grant number MM/EHPSA/UCT/05150014]; Johnson and Johnson, and the John Fell Fund [grant number 103/757]. Additional support for LC was provided by the European Research Council (ERC) under the European Union’s Seventh Framework Programme [grant numbers FP7/2007–2013/ERC grant agreement n8313421], and the Leverhulme Trust [grant number PLP-2014-095]. The project benefited from ESRC Impact Acceleration Account Support.