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

Abstract

BackgroundA 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.MethodsThe 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.DiscussionThe 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.

Rehabilitation approaches for children living with HIV in sub-Saharan Africa: a protocol for scoping review

“…Children living with HIV who have disabilities are at risk of being excluded from participation in communities and the societies in which they live [4, 7]. Furthermore, their school readiness is at risk, which will be a challenge throughout the lives of these children.…”

“…Furthermore, their school readiness is at risk, which will be a challenge throughout the lives of these children. Only a little evidence is available about how to address these impairments and disabilities in order to prepare them for school and day-to-day life [7, 11] and the existing evidence needs, therefore, to be systematised to inform further research and programming. This scoping review protocol endeavors to lay down a foundation for mapping evidence in order to promote an integrated rehabilitative approach to care and provide a foundation for further investigation into children living with HIV experiencing impairments and/or disabilities.…”

“…These disabling effects of living with chronic HIV need to be addressed through a holistic approach to HIV care. Studies in sub-Saharan Africa suggest that there are many children living with HIV, including those on ARTs, who are experiencing various disabilities manifesting as developmental delays, and neurocognitive and behavioural impairments, as well as communication and sensory disorders [3, 6, 7]. Impairments and disabilities experienced by children living with HIV can be addressed through a diverse set of rehabilitation interventions.…”

“…Without rehabilitation interventions for children living with HIV who develop functional limitations, disabilities will develop and consequently influence school readiness, a key predictor of school performance, and employment and standards of living in adulthood [11]. An integral shift is needed to offer children living with HIV healthcare that incorporates a comprehensive continuum of integrated care including rehabilitation, especially in the sub-Saharan African region where HIV is still a public health concern [7, 8]. This study is part of a larger study that aims to assess the feasibility (acceptability, practicality, preliminary efficacy) of an integrated model of rehabilitation and paediatric HIV-care in order to improve the diagnosis of, and interventions for, disability in children living with HIV between the ages of 5 and 10 years [7].…”

Child functioning and disability in children living with human immunodeficiency virus in a semi-rural healthcare setting in South Africa

“…This study is part of an umbrella project that aims to assess the feasibility (acceptability, practicality and preliminary efficacy) of an integrated model of rehabilitation and paediatric HIV care in order to improve the identification of and interventions for disability in CLHIV. 16 The purpose of this study is to determine the level of child functioning and the prevalence and types of disabilities in CLHIV, aged between 5 and 10 years, in a resource-poor setting and to also investigate the access to rehabilitation. This study is crucial in the advocation for early interventions for children and rehabilitation to strengthen paediatric HIV care in the region.…”