Research Article: Patient experiences of ART adherence clubs in Khayelitsha and Gugulethu, Cape Town, South Africa: A qualitative study

Date Published: June 20, 2019

Publisher: Public Library of Science

Author(s): Emilie Venables, Catriona Towriss, Zanele Rini, Xoliswa Nxiba, Tali Cassidy, Sindiso Tutu, Anna Grimsrud, Landon Myer, Lynne Wilkinson, Karine Dubé.


Globally, 37 million people are in need of lifelong antiretroviral treatment (ART). With the continual increase in the number of people living with HIV starting ART and the need for life-long retention and adherence, increasing attention is being paid to differentiated service delivery (DSD), such as adherence clubs. Adherence clubs are groups of 25–30 stable ART patients who meet five times per year at their clinic or a community location and are facilitated by a lay health-care worker who distributes pre-packed ART. This qualitative study explores patient experiences of clubs in two sites in Cape Town, South Africa.

A total of 144 participants took part in 11 focus group discussions (FGDs) and 56 in-depth interviews in the informal settlements of Khayelitsha and Gugulethu in Cape Town, South Africa. Participants included current club members, stable patients who had never joined a club and club members referred back to clinician-led facility-based standard care. FGDs and interviews were conducted in isiXhosa, translated and transcribed into English, entered into NVivo, coded and thematically analysed.

The main themes were 1) understanding and knowledge of clubs; 2) understanding of and barriers to enrolment; 3) perceived benefits and 4) perceived disadvantages of the clubs. Participants viewed membership as an achievement and considered returning to clinician-led care a ‘failure’. Moving between clubs and the clinic created frustration and broke down trust in the health-care system.

Adherence clubs were appreciated by patients, particularly time-saving in relation to flexible ART collection. Improved patient understanding of enrolment processes, eligibility and referral criteria and the role of clinical oversight is essential for building relationships with health-care workers and trust in the health-care system.

Partial Text

Globally, 37 million people are in need of lifelong ART with 21.7 million accessing treatment in 2016 [1]. Acceptance and increasing implementation of the ‘Treat All’ approach to anti-retroviral (ART) provision has changed the emphasis from ‘who’ is eligible to start ART and ‘when’, to ‘how’ to provide ART care and drug delivery to all HIV-infected patients [1]. With the continual increase in the number of patients starting ART and the need for life-long retention and adherence, increasing attention is being paid to differentiated service delivery (DSD) across the HIV cascade to better serve the diverse needs of people living with HIV [2]. DSD initially focused on designing and implementing ART delivery models that made access to ART care and drug refills simpler for clinically stable people living with HIV.

Of the 144 participants, 28 were male and 116 were female. Twenty-five interviewees had never attended a club; 30 had been referred-back to the clinic for viral rebound, poor attendance or other reasons and the remaining participants were all members of home, community or facility clubs. Interviewees ranged in age from 25 to 67, with a mean age of 41 years.

This qualitative study suggests that ACs are both acceptable and valued among people living with HIV in Gugulethu and Khayelitsha. The main gap in knowledge was around eligibility for enrolment and the criteria and rationale for patients to be referred back to standard care. Based on these findings and the perceived benefits and disadvantages of Adherence Clubs, recommendations for improving Adherence Clubs and suggestions for further research are outlined.

ACs provide stable patients with a flexible solution to receiving ongoing HIV care, importantly including collecting their drug refills. Patients are curious about joining and feel privileged to belong to an AC, but this sense of privilege heightens the frustrations and sense of failure if a patient no longer qualifies as ‘stable’ and is referred-back to standard care, risking both short- and long- term retention. Improved patient understanding of recruitment as well as buy-in to the requirement to continuously qualify as stable, allowing for less intensive follow-up and simpler drug refill options, is important. This will particularly benefit patients during periods of clinical instability where more intensive follow-up is appropriate. Further research should determine whether increased adherence and clinical support alongside continued AC membership improves outcomes for these patients.




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