Research Article: “It is not possible to go inside and have a discussion”: how fear of stigma affects delivery of community-based support for children’s HIV care

Date Published: February 28, 2018

Publisher: Taylor & Francis

Author(s): Joanna Busza, Victoria Simms, Chido Dziva Chikwari, Ethel Dauya, Tsitsi Bandason, Memory Makamba, Grace McHugh, Rashida Abbas Ferrand.


Caregivers mediate children’s access to HIV care and their adherence to treatment. Support for caregivers may improve health outcomes in children, but fear of HIV stigma and discrimination can affect both uptake and delivery of support services. Within a trial evaluating community-based support for caregivers of newly HIV diagnosed children in Harare, Zimbabwe, we conducted a longitudinal qualitative study to explore how stigma affected delivery and acceptance of the intervention. We conducted semi-structured interviews with 36 caregivers, 15 children, and 20 community health workers (CHWs). Children and caregivers described experiencing or witnessing stigma and discrimination, causing some to resist home visits by CHWs. Anxiety around stigma made it difficult for CHWs to promote key messages. In response, CHWs adapted the intervention by meeting caregivers outside the home, pretending to be friends or relatives, and proactively counteracting stigmatising beliefs. As members of local communities, some CHWs shared concerns about discrimination. HIV stigma can hinder “getting a foot over the threshold” in community-based programmes, particularly for households most affected by discrimination and thus least likely to engage with services. For community support programmes to be effective, stigma-related resistance should be addressed from the outset, including CHWs’ own concerns regarding HIV stigma.

Partial Text

The negative effects of HIV-related stigma on people’s willingness to test, initiate treatment, and maintain adherence are well-documented (Katz et al., 2013; Merten et al., 2010; Parker & Aggleton, 2003). Targeted stigma reduction programmes and increasing familiarity with HIV have somewhat mitigated these effects (Stangl, Lloyd, Brady, Holland, & Baral, 2013). Widespread availability of antiretroviral therapy (ART) has further shifted perceptions of HIV from a fatal disease to a chronic condition (Chan, Tsai, & Siedner, 2015; Roura et al., 2009). Nonetheless, stigma continues to inhibit timely and appropriate engagement at every step of the HIV care cascade (Kelly, Weiser, & Tsai, 2016; Nyika et al., 2016; Treves-Kagan et al., 2016).

HIV prevalence in Zimbabwe remains high at 13.8% of the adult population, and 2.7% among children aged 10–14 (ZIMSTAT & ICT International, 2016), among whom over one third are undiagnosed (Simms et al., 2017). Children and adolescents with HIV exhibit lower engagement with health services and higher loss to follow-up (Kranzer et al., 2017). Due to the high HIV burden, local organisations increasingly rely on home based workers to deliver health care (Drew, Mgombane, Nyaruwa, & Foster, 1997; Rödlach, 2009). As in other countries, these are mostly volunteers who originally provided palliative care, but now support HIV testing, care and adherence (Schneider, Schaay, Dudley, Goliath, & Qukula, 2015).

We conducted semi-structured interviews with caregivers of children receiving the intervention 12 and 18 months after enrolment. Caregivers were purposively selected for diversity in age, sex, relationship to the child, residence, and level of participation. At 12 months we interviewed 26 caregivers, but found that we reached thematic saturation after analysing 7–8 transcripts (i.e., we found broad agreement across themes with few outliers, suggesting additional sampling would be unlikely to yield new insights) (Bradley, Curry, & Devers, 2007; Hennink, Kaiser, & Marconi, 2017). We therefore reduced the number of caregivers interviewed at 18 months to 10. We interviewed different caregivers at each round. Topic guides explored caregivers’ decision to join the trial, experiences of home visits, and whether/how they felt the intervention influenced their care for a child living with HIV.

Findings are presented in three sections. First, we briefly characterise discrimination experienced by respondents and their perceptions of HIV stigma in the community to confirm its pervasive existence. Next, we focus on how fears of being stigmatised affected households’ acceptance of the ZENITH intervention. Third, we illustrate CHWs’ experiences of these challenges to delivery of activities and how they mitigated these.

We interrogated qualitative data collected during the ZENITH trial to assess how children’s, caregivers’ and CHWs’ experiences of stigma affected implementation of the intervention. Our findings confirm that increased “normalisation” of HIV has not reduced related stigma as much as hoped (Roura et al., 2009; Treves-Kagan et al., 2016). As in other studies (Machine et al., 2016), we found children and caregivers were afraid of discrimination, and wary that home visits might expose their HIV status. These fears were rational, as HIV-related discrimination featured prominently in respondents’ life accounts, and reflects Zimbabwe’s HIV Stigma Index in which 65.5% of people living with HIV reported having ever experienced HIV-related stigma or discrimination (ZNPP+, 2014).




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