Excellent adherence in Africa due to social networks

The very high levels of adherence to antiretroviral therapy observed in some settings in sub-Saharan Africa appear to be explained by the need to preserve a network of social relationships that people with HIV rely upon to survive, rather than being a consequence of individual motivation, according to a study conducted in Nigeria, Tanzania and Uganda.

The findings, published in the open access journal PLoS Medicine, come from an ethnographic study in which 252 patients, treatment partners and healthcare professionals were interviewed at three treatment sites (Jos, Nigeria; Dar es Salaam, Tanzania; Mbarara, Uganda). Two-thirds of patients were women, less than half were married, and two-thirds had experienced serious HIV-related illness (World Health Organization stage 3 or 4 disease). Around a quarter of healthcare providers were physicians, a third were nurses, 19% were counsellors and 16% were pharmacists.

The researchers, led by Norma Ware of Harvard University, conducted interviews designed to understand the patients’ views of adherence, of clinic visits and of help received from treatment partners. Healthcare providers were asked about clinic visits and how the topic of adherence emerged during clinic visits, and about their perceptions of barriers to adherence. Treatment partners were asked about the types of help they provided, what impact they thought it had, and their feelings about being a treatment partner. The questions were unscripted in order to allow unanticipated themes to emerge.

Interviews were reviewed to identify key obstacles to adherence and the ways in which these obstacles were negotiated by individuals.

The biggest obstacles to adherence were those caused by a scarcity of resources – money for transport to the clinic, food for self and family – and these obstacles had to be overcome by borrowing money or going without food in order to maintain good health through excellent adherence.

But maintaining good health was not an end in itself, the interviews revealed. Ill health placed a burden on others, and placed the individual at risk of losing support from others – support that, in times of good health, was critical for overcoming hardships distinct from HIV. Good adherence and good health reduced the calls on the goodwill of others, and made it more likely that, when future needs arose, potential helpers would be willing to help.

Poor adherence, on the other hand, was perceived as letting down helpers and, by raising the spectre of ill-health, caused individuals to question whether family and neighbours might abandon them or downgrade their needs if they became burdensome.

Health care providers revealed that they too offered help above and beyond their roles, by providing money for transport, by keeping clinics open late to accommodate latecomers, or by providing food at their own expense. But, in return, providers expected good adherence, and made this known to patients. Some healthcare providers said that they had threatened patients with discontinuation of treatment if they persistently failed to take medication.

Treatment partners had a similar expectation of good adherence in return for their help.

The authors say their findings suggest the importance of social capital – trust, co-operation, reciprocity and sociability – in maintaining adherence. Social capital also explains the fear of stigma, they argue, because stigma isolates people from social relationships that would improve the chances of survival. Hence the strenuous efforts to avoid stigma, even at potential long-term costs to the individual.

“Adherence preserves social capital by protecting relationships required for survival in settings of poverty. This may be what patients are referring to when they tell us they have 'no choice' but to adhere,” the authors conclude. They note that their findings may not be applicable to all settings in Africa, and urge further research on social capital in order to guide interventions that will maintain adherence and sustain treatment effectiveness.

In an accompanying commentary, Agnes Binagwaho of the Rwandan Ministry of Health and Niloo Ratnayake of the University of Virginia note that while Americans take the drugs they are given for themselves, “in Africa taking prescribed ART is a community effort.” They say that although the study “will not affect future clinical decisions, it can be a useful tool to create support for access to treatment in Africa.”