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Introduction: Children living with HIV experience particular challenges in accessing HIV care. Children usually rely on adult caregivers for access to care, including timely diagnosis, initiation of treatment and sustained engagement with HIV services. The aim of this study was to inform the design of a community-based intervention to support caregivers of HIV-positive children to increase children’s retention in care as part of a programme introducing decentralized HIV care in primary health facilities. Methods: Using an existing conceptual framework, we conducted formative research to identify key local contextual factors affecting children’s linkages to HIV care in Harare, Zimbabwe. We conducted semi-structured interviews with 15 primary caregivers of HIV-positive children aged 6-15 years enrolled at a hospital clinic for at least six months, followed by interviews with nine key informants from five community-based organizations providing adherence support or related services. Results: We identified a range of facilitators and barriers that caregivers experience. Distance to the hospital, cost of transportation, fear of disclosing HIV status to the child or others, unstable family structure and institutional factors such as drug stock-outs, healthcare worker absenteeism and unsympathetic school environments proved the most salient limiting factors. Facilitators included openness within the family, availability of practical assistance and psychosocial support from community members. Conclusions: The proposed decentralization of HIV care will mitigate concerns about distance and transport costs but is likely to be insufficient to ensure children’s sustained retention. Following this study, we developed a package of structured home visits by voluntary lay workers to proactively address other determinants such as disclosure within families, access to available services and support through caregivers’ social networks. A randomized controlled trial is underway to assess impact on children’s retention in care over two years. © 2014 Busza J et al; licensee International AIDS Society.
We used the Skovdal et al. [15] conceptual framework as an assessment tool, gathering information for each of its dimensions to build up a picture of locally salient material, symbolic, relational and institutional determinants of children’s retention in care. We also sought to identify and map existing community-based initiatives that provide adherence support or similar outreach to families of HIV-positive children to avoid duplication and integrate our intervention within available support mechanisms to create synergy and strengthen access. The study was conducted between October and November 2012 at the Harare Central Hospital HIV clinic, which has provided HIV diagnosis and care to children since the inception of the National Paediatric HIV treatment programme. Children who have been diagnosed with HIV are referred to this clinic for ART eligibility screening, initiation of treatment, and all follow-up care. Children continue to rely on the hospital for their clinical monitoring and ART drug supply until they transition to adult care. The hospital serves the same high-density suburbs in Harare that make up the catchment area of our planned intervention trial, making it likely that participants would reflect the socio-demographic profile, economic status, and living conditions of the trial communities. We conducted semi-structured interviews with primary caregivers of HIV-positive children aged 6–15 years enrolled at the clinic for at least six months, followed by interviews with key informants from any community-based organizations (CBO) mentioned by caregivers as providing adherence support or related services in the hospital’s catchment area. The 6–15 age group was selected because it includes children eligible for paediatric HIV care; younger children are the responsibility of maternal health programmes and those diagnosed after age 15 are classified as adults. Caregivers were sampled to reflect diversity by relationship to the child(ren) for whom they care, and background characteristics including age, sex, and residence. Interviews were conducted in a private room at the hospital while caregivers were waiting for an appointment. The topic guide addressed experiences of supporting children in health-seeking, diagnosis, disclosure (if applicable), attending regular appointments, undertaking medical tests, taking medication and positive living more broadly (mitigation of stigma, relationships at school, nutrition, psychosocial care, etc.) CBO key informants were interviewed at their workplace about the services they provided and their perceptions of how to successfully support adherence. All interviews were conducted in Shona by four fieldworkers (three female and one male) with prior qualitative research experience who were further trained on the study tools and helped to pilot them. Fieldworkers transcribed their own interviews and translated them into English. The first author conducted thematic data analysis that organized excerpts from interview transcripts into the four structured dimensions of the Skovdal et al. conceptual framework, allowing for additional categories to emerge directly from the data to create new dimensions or refine their attributes. Ethical approval for the study was granted by the London School of Hygiene and Tropical Medicine (UK), Biomedical Research & Training Institute (Zimbabwe), the Medical Research Council of Zimbabwe and the Harare Hospital Ethics Committee. Fieldworkers obtained written informed consent from all study participants prior to interview and emphasized that enrolment would not affect access to services at Harare Hospital.
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