A study protocol “saving futures: developing an integrated model of rehabilitation and paediatric HIV care to foster success at school”

Abstract Background A significant number of children experience disabilities as a result of living with HIV, including those on antiretroviral therapy (ART). Current paediatric HIV care does not prioritise rehabilitation. Furthermore, little attention is paid to cognitive development and educational needs, thereby placing the future of these children at risk. This can be mitigated by providing rehabilitation services to help overcome these disabilities. Methods The study will assess the feasibility (acceptability, practicality, preliminary efficacy) of an integrated model of rehabilitation and paediatric HIV care in order to improve diagnosis and interventions for disability amongst children living with HIV between the ages of 5 and 10 years. The model will integrate data entry and management tools, improving identification, referral, and linkage to care, with an intervention approach that can be used by trained lay health professionals. The study targets both physical and cognitive impairments that lead to disabilities to improve school readiness and success. Phase 1 will inform the design of an optimal integrated model of rehabilitation and paediatric HIV care in a public healthcare setting in South Africa. The study will first undertake a formative investigation of the factors impacting integration of rehabilitation with paediatric HIV care from the perspective of caregivers and health professionals. It will use qualitative methods, including in-depth interviews and focus group discussions. The knowledge from this phase will inform the design of the model in phase 2, and phase 3 will pilot the integrated rehabilitation and paediatric HIV model with the aim to improve school readiness for the participants at the study site. The pilot intervention will be formally evaluated. Discussion The results from this study will determine whether the model has potential for widespread application in South African paediatric HIV care and recommend further possible modifications. This will inform the development of a proposal to support the current government initiative to strengthen disability and rehabilitation services. The study results will also inform South Africa’s current efforts to strengthen early interventions for children with disabilities and will be an important and critically needed step in the use of rehabilitation to strengthen paediatric HIV care in the region