This is a story of helping patients to stick with their treatment for HIV, informed by qualitative evidence synthesis and theoretical understanding, all complementing clinic staff’s intuition, to find new ways of working.

Staying healthy, even when HIV positive, is hard work. Patients have to stick with attending clinics for antiretroviral therapy (ART) indefinitely. They can feel stressed, ashamed, and guilty if they’ve not kept up with their regimen, and overworked staff become frustrated and disrespect these ‘bad patients’, thereby discourage further clinic visits.

This story of evidence-informed decision-making has two strands. One strand began on the front line, at a Medecins Sans Frontieres (MSF) clinic in Khayelitsha, a peri-urban settlement in South Africa. When clinic staff recognised that patients dropping out of care was a growing problem they made it a priority for the organisation. Collaborating with the Department of Health and the University of Cape Town, they launched a new ‘Welcome Service’ in August 2018.

Another strand of the story began with a research team (where I was one of five) wanting to address this important problem. All sorts of ways to help patients keep going with the treatment have been tried and tested in randomised controlled trials and systematic reviews, including text message reminders and incentives for turning up, education, social support, and cognitive-behavioural therapy. But the effects on patient adherence have been negligible, even when interventions have been combined.

So for us, it was back to the beginning, to investigate why patients find treatment so difficult. Rather than pulling together the findings of randomised controlled trials that examine specific strategies to increase adherence, we turned to qualitative research. We found some studies that drew on interviews and focus groups with patients, care givers or health workers; or engaged patients in discussion through thematic drawing, photography or role play. In others, researchers or health workers observed what was happening in clinics. Between us, we brought experience of HIV and clinical care in Africa and qualitative synthesis skills to discussing their findings. Looking for explanations rather than simple solutions, we delved in to explore the fundamental drivers of adherence and avoidance and how they interact.

We found that poverty, competing priorities, unpredictable life events, and the complexities of interpersonal and community relationships often got in the way. Moreover, patients found health systems punishing and uninviting, which sometimes drove them out. Despite these challenges, patients needed to fit ART into their day-to-day life indefinitely, which could be helped by their inherent self-efficacy, and emotional, practical or financial support. When stressors became too much, patients would pass a ‘tipping point’ to disengage from care; with support or after health deterioration they could tip back to re-engage. We worked hard with this qualitative evidence synthesis to move beyond a list of factors creating barriers to adherence, to develop our coherent ‘tipping point’ theory.

The two strands of this story came together when MSF used our tipping point theory to help shape their new ways of working for patients who had dropped out of care, to support them in the direction of engagement. They built a ‘treatment interruption checklist’ of reasons a patient may be struggling, to see where help might be offered. The checklist drew on clinical practice for drug resistant tuberculosis patients. It also drew on our tipping point theory, which helped them recognise opportunities to encourage more positive staff attitudes towards patients, organise a smoother patient journey, and build a counselling package. At the same time a light mentorship approach developed strong staff ownership. Also required was emphasising potential benefits over following the restrictive protocols that excluded some patients, and repeatedly encouraging a welcoming approach.

Signs are promising. More patients are sticking with care, and viral loads are lower than they were. However, qualitative interviews with the clinic’s doctors, nurses, counsellors, social workers, data clerks, security guards, and allied health professionals found that staff had a problem too. They felt empathy with patients when asking them about barriers to engagement, and anger and frustration when patients’ extra support needs added to their workload. Nevertheless, three more clinics are piloting the Welcome Service and a formal evaluation is on the way.

In this story, staff were first persuaded that something needed to be done by their intuition and clinical experience. Compelling evidence came from numerous qualitative research teams spending time with patients and frontline health workers to understand why sticking with care is so difficult. Lastly and convincingly, it came from our team of systematic reviewers pooling that evidence, and pushing the analysis beyond a list of influential factors, to crystallise them into a credible theory. MSF, known for their research and innovation, then turned all this, and their local investigations, into better care and better health.

Further reading

Eshun-Wilson I, Rohwer A, Hendricks L, Oliver S, Garner P (2019) Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model. PLoS ONE 14(1): e0210408.

Keene, C. Casidy, T. Makeleni-Leteze, T. Dutyulwa, T. Dumile, N. Euvrard, J. Fouche, G. Isaakidis, P. Goemaere, E. Trivino Duran, L. 2019. Médecins Sans Frontières' Welcome Service: a collaborative reorganisation of HIV services to address disengagement from care in Khayelitsha, South Africa. 9th SA AIDS Conference, Durban, South Africa, 11-14 June 2019. Track 3 13 June 2019.

Nhemachena T, Cassidy T, Swartz A, Spath C, Keene C, Zokufa N, Arendse N, Wagner L, Heyden E. Between empathy and anger: healthcare worker’s perspectives on patient disengagement from antiretroviral treatment-a qualitative study in Khayelitsha, Cape Town. 24th International AIDS Conference, Virtual, 18-21 July 2021.

Sandy Oliver, Professor of Public Policy at UCL Institute of Education and Distinguished Visiting Professor at University of Johannesburg
~ Sandy Oliver, Professor of Public Policy at UCL Institute of Education and Distinguished Visiting Professor at University of Johannesburg