“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

Busza, Joanna; Simms, Victoria; Chikwari, Chido Dziva; Dauya, Ethel; Bandason, Tsitsi; Makamba, Memory; McHugh, Grace; Ferrand, Rashida A

doi:10.1080/09540121.2018.1445826

Cited by 13 publications

(13 citation statements)

References 38 publications

(42 reference statements)

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“…In addition to text messaging challenges, community adolescent treatment supporters were unable to visit some adolescents' homes-a recurring issue in community-based interventions. 35 Community adolescent treatment supporters were, however, able to meet study participants in neutral spaces, highlighting the value of differentiated service delivery in responding to beneficiaries' preferences. 14 Finally, although process evaluation data suggested the mechanisms of effect of the Zvandiri intervention, it is possible that unmeasured or unassessed variables might also have played a role in the intervention effect.…”

Section: Discussionmentioning

confidence: 99%

Effect of a differentiated service delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-randomised controlled trial

Mavhu

Willis²,

Mufuka

et al. 2020

The Lancet Global Health

141

189

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Background Adolescents living with HIV face challenges to their wellbeing and antiretroviral therapy adherence and have poor treatment outcomes. We aimed to evaluate a peer-led differentiated service delivery intervention on HIV clinical and psychosocial outcomes among adolescents with HIV in Zimbabwe. Methods 16 public primary care facilities (clusters) in two rural districts in Zimbabwe (Bindura and Shamva) were randomly assigned (1:1) to provide enhanced HIV care support (the Zvandiri intervention group) or standard HIV care (the control group) to adolescents (aged 13-19 years) with HIV. Eligible clinics had at least 20 adolescents in pre-ART or ART registers and were geographically separated by at least 10 km to minimise contamination. Adolescents were eligible for inclusion if they were living with HIV, registered for HIV care at one of the trial clinics, and either starting or already on ART. Exclusion criteria were being too physically unwell to attend clinic (bedridden), psychotic, or unable to give informed assent or consent. Adolescents with HIV at all clinics received adherence support through adult counsellors. At intervention clinics, adolescents with HIV were assigned a community adolescent treatment supporter, attended a monthly support group, and received text messages, calls, home visits, and clinic-based counselling. Implementation intensity was differentiated according to each adolescent's HIV vulnerability, which was reassessed every 3 months. Caregivers were invited to a support group. The primary outcome was the proportion of adolescents who had died or had a viral load of at least 1000 copies per μL after 96 weeks. In-depth qualitative data were collected and analysed thematically. The trial is registered with Pan African Clinical Trial Registry, number PACTR201609001767322.

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Section: Discussionmentioning

confidence: 99%

Effect of a differentiated service delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-randomised controlled trial

Mavhu

Willis²,

Mufuka

et al. 2020

The Lancet Global Health

141

189

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“…To support the implementation of the intervention at scale, continuing to budget for intensive mentor support for new cohorts of CATS and investing in it as an integral principle of youth peer support is vital [26]. This would ensure that there is adequate support to ameliorate the cluster of challenges relating to stakeholder resistance, concerns around the occupational risks of deductive disclosure and related stigma [30,31] and under-appreciating the value of peer-supporters, which can occur upon initial roll out of the intervention within communities. The findings demonstrate the supportive value that the CATS gain from each other, in common with various manifestations of peer support [32], but also illustrate that this can be further reinforced by the opportunities to mentor and be mentored through the provision of ongoing training and coordination meetings with peers [17].…”

Section: Discussionmentioning

confidence: 99%

Scaling up peer‐led community‐based differentiated support for adolescents living with HIV: keeping the needs of youth peer supporters in mind to sustain success

Bernays

Tshuma

Willis³

et al. 2020

J Intern AIDS Soc

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Introduction Low rates of viral suppression among adolescents living with HIV (ALHIV) indicate that more effective support is urgently required at scale. The provision of peer support has generated considerable enthusiasm because it has the potential to ameliorate the complex social and relational challenges which underpin suboptimal adherence. Little is known about the impact on young peer supporters themselves, which is the focus of this paper. Methods We present qualitative findings from the Zvandiri trial investigating the impact of a peer support intervention on the viral load for beneficiaries (ALHIV, aged 13 to 19 years) in Zimbabwe. The Zvandiri peer supporters aged 18 to 24 years, known as community adolescent treatment supporters (CATS), are themselves living with HIV. Individual in‐depth interviews were conducted in late 2018 with 17 CATS exploring their experiences of delivering peer support and their own support needs. Interviews were analysed iteratively using thematic analysis. Results The CATS reported that being peer supporters improved their own adherence behaviour and contributed to an improved sense of self‐worth. The social connections between the CATS were a source of comfort and enabled them to develop skills to manage the challenging aspects of their work. Two substantial challenges were identified. First, their work may reveal their HIV status. Second, managing the emotional labour of this caring work; given how commonly the complexity of the beneficiaries’ needs mirrored the circumstances of their own difficult lives. Both challenges were ameliorated by the support the CATS provided to each other and ongoing supervision from the adult mentor. There was variation in whether they felt their roles were appropriately valued through the remuneration they received and within the health system. There was a consensus that their experience meant that they would graduate from being a CATS with transferable skills that could enhance their employability. Conclusions Their experiences illustrate the advantages and opportunities of being a CATS. To minimize potential harms, it is vital to ensure that they feel valued in their role, which can be demonstrated by the provision of appropriate remuneration, recognition and respect, and that there is continued investment in ongoing support through ongoing training and mentoring.

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“…Our review search was conducted on 9 December 2016 and it is possible that some of the landscape regarding stigma and access to care may have changed in the ‘test and treat’ and differentiated service delivery era. However, after conducting an updated search and rapidly appraising recently published studies (up till 1 August 2018), we identified several studies which supported our findings, specifically regarding quality of health services [130–133], disrespectful health workers and the role of power in health service delivery [132, 134], lack of access to health services [130, 131], competing priorities and unpredictable life circumstances [135–138], the role of the social world [131, 132, 139], influence of gender roles [140], medical pluralism [132, 141], the motivating influence of having dependents [142, 143], the challenges of same day ART initiation[144], the barriers to care caused by stigma [130, 131, 138, 143, 145, 146], challenges to accessing care for PWD [147], the benefits of support [131, 132, 148, 149], and fluctuations in engagement over time [131]. We therefore feel that the findings of this review remain relevant to current HIV populations.…”

Section: Discussionmentioning

confidence: 99%

Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model

et al. 2019

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BackgroundAdherence to antiretroviral therapy (ART) and long-term uninterrupted engagement in HIV care is difficult for HIV-positive people, and randomized trials of specific techniques to promote adherence often show small or negligible effects. Understanding what influences decision-making in HIV-positive people in Africa may help researchers and policy makers in the development of broader, more effective interventions and policies.MethodsWe used thematic synthesis and a grounded theory approach to generate a detailed narrative and theoretical model reflecting life with HIV in Africa, and how this influences ART adherence and engagement decisions. We included qualitative primary studies that explored perspectives, perceptions and experiences of HIV-positive people, caregivers and healthcare service providers. We searched databases from 1 January 2013 to 9 December 2016, screened all studies, and selected those for inclusion using purposeful sampling methods. Included studies were coded with Atlas.ti, and we assessed methodological quality across five domains.ResultsWe included 59 studies from Africa in the synthesis. Nine themes emerged which we grouped under three main headings. First, people who are HIV-positive live in a complicated world where they must navigate the challenges presented by poverty, competing priorities, unpredictable life events, social identity, gender norms, stigma, and medical pluralism—these influences can make initiating and maintaining ART difficult. Second, the health system is generally seen as punishing and uninviting and this can drive HIV-positive people out of care. Third, long-term engagement and adherence requires adaptation and incorporation of ART into daily life, a process which is facilitated by: inherent self-efficacy, social responsibilities, previous HIV-related illnesses and emotional, practical or financial support. These factors together can lead to a “tipping point”, a point in time when patients choose to either engage or disengage from care. HIV-positive people may cycle in and out of these care states in response to fluctuations in influences over time.ConclusionThis analysis provides a practical theory, arising from thematic synthesis of research, to help understand the dynamics of adherence to ART and engagement in HIV care. This can contribute to the design of service delivery approaches, and informed thinking and action on the part of policy makers, providers, and society: to understand what it is to be HIV-positive in Africa and how attitudes and the health service need to shift to help those with HIV lead ‘normal’ lives.

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“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

Cited by 13 publications

References 38 publications

Effect of a differentiated service delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-randomised controlled trial

Effect of a differentiated service delivery model on virological failure in adolescents with HIV in Zimbabwe (Zvandiri): a cluster-randomised controlled trial

Scaling up peer‐led community‐based differentiated support for adolescents living with HIV: keeping the needs of youth peer supporters in mind to sustain success

Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model

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