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

Abstract

Background 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. Methods 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. Results 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. Conclusions 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.

Engaging men in HIV programmes: a qualitative study of male engagement in community‐based antiretroviral refill groups in Zimbabwe

“…Perceptions of CARG benefits and disadvantages among study participants were consistent with data from Malawi, South Africa and Mozambique [31][32][33][34][35][36]. When asked specifically about reasons why men might not participate in CARGs, participants identified fear of HIV-related stigma, lack of information about CARGs, lack of male-only groups and few perceived personal benefits of CARG membership.…”

“…When asked specifically about reasons why men might not participate in CARGs, participants identified fear of HIV-related stigma, lack of information about CARGs, lack of male-only groups and few perceived personal benefits of CARG membership. Although similar findings have been reported in other studies [32][33][34], we used an explicitly gendered perspective and examined these barriers from men's viewpoints.…”

“…Lack of information about health services has long been cited as a common barrier to men's healthcare-utilization behaviour globally [39] and more recently, to low uptake of community-based DSDM. In a Malawi study, ART patients not enrolled in CAGs also reported little awareness of the model [31,32], whereas in a South African study of adherence clubs, participants were confused about eligibility criteria, enrolment procedures and referral criteria [33]. Better and intensified information and education campaigns, preferably in workplace and entertainment venues, are needed to reach more men and more effectively.…”

Understanding implementation barriers in the national scale-up of differentiated ART delivery in Uganda

“…There are two community-based models; i) Community Drug Distribution Points (CDDP) and ii) Community Client-Led ART Delivery (CCLAD) [10]. Uganda is widely considered as a leader in DSD implementation because it was one of the first countries to provide for DSD in its national ART treatment guidelines as well in rolling it out nationally [11,12]. Uganda therefore presents a unique opportunity of generating implementation research lessons with potential for broader application to other countries with a high HIV burden, especially those in resourcelimited settings.…”

Understanding implementation barriers in the national scale-up of Differentiated ART delivery in Uganda

“…Uganda is widely considered as a leader in DSD implementation because it was one of the first countries to provide for DSD in its national ART treatment guidelines as well in rolling it out nationally [12], [13]. Uganda therefore presents a unique opportunity of generating implementation research lessons with potential for broader application to other countries with a high HIV burden, especially those in resource-limited settings.…”