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.
Disclosure of HIV status to sexual partners and others has been presented as positive health behaviour and is widely encouraged by antiretroviral treatment (ART) programmes, providers and policies. However, disclosure is also highly contextual and its positive effects are not universal. We explore the dimensions of disclosure amongst post-partum women who initiated ART during pregnancy in Cape Town, South Africa. Forty-seven semi-structured interviews with post-partum women were conducted as part of the Maternal Child Health-Antiretroviral Therapy (MCH-ART) study. Primary elements of disclosure were coded and interpreted according to dominant themes and subthemes. Disclosure was commonplace in the sample, ranging from widely disclosing status (rare); to disclosing to some family, friends and partners; to tacit disclosure, where participants took medication in front of others without explicitly discussing their status. Women described reasons for non-disclosure in terms of not being ready, fear of negative reactions (including violence and loss of financial support), and fear of their status being widely known. Self-reported adherence was uniformly high throughout the range of disclosure. Even those who made special efforts to avoid disclosure, such as attending clinics distant from their homes, reported good adherence. Those who disclosed experienced a range of responses to their disclosure, from support to shunning. Despite access to ART, stigma remained a persistent feature in descriptions of disclosure, particularly in relation to partner disclosure. Our findings suggest that disclosure is not always positive and adherence can be maintained within a wide range of disclosure behaviours. It is important that clinic settings allow women to retain control over their disclosure process.
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