Challenges and opportunities of implementing early interventions for autism spectrum disorders in resource-limited settings: A South African example

Schlebusch, Liezl; Chambers, Nola; Dawson-Squibb, John-Joe; Harty, Michal; Franz, Lauren; Vries, Petrus J. de

doi:10.1016/b978-0-12-819749-3.00005-1

Cited by 13 publications

(19 citation statements)

References 64 publications

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“…The cultural fit of an intervention is critical for uptake and sustainability (Schlebusch et al, 2020). Evidence on the acceptability and cross-cultural relevance suggests that the 'Well-Beans for Caregivers' programme adapted from the WHO CST caregiver well-being module was acceptable in a rural South African town and that existing models of cultural adaptation (i.e.…”

Section: Discussionmentioning

confidence: 99%

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

Schlebusch,

Chambers,

Rosenstein

et al. 2022

Autism

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Caring for children with developmental delays or disabilities places significant stress on caregivers, which is often exacerbated in low-resource settings. The World Health Organization developed a caregiver skills training for families of children with developmental delays or disabilities, which includes a three-session caregiver well-being module based on Acceptance and Commitment Therapy, that aims to help caregivers build psychological flexibility (i.e. the ability to focus on the present moment, make space for difficult thoughts and emotions and commit to value-driven actions that enrich their lives). We investigated whether this brief caregiver well-being programme was feasible, acceptable and contributed to positive outcomes for caregivers in a rural South African town. We adapted the intervention to the local context using a participatory approach. The ‘Well-Beans for Caregivers’ adaptation of the World Health Organization Caregiver Skills Training Caregiver Wellbeing module was then delivered by trained facilitators to a group of 10 caregivers in three weekly, 2-h sessions. Most caregivers were single and unemployed. Feedback from the facilitators, caregivers and trainee observers was obtained before, during and after the programme. Results suggested that this brief programme shows promise as a feasible and acceptable intervention, which may lead to improved caregiver well-being and mental health in communities in South Africa. Lay abstract Young children with developmental disabilities and delays who live in low- and middle-income countries are at significant risk of not reaching their full potential. We know that daily interactions with their caregivers (parents or other people taking care of them) play an important role in promoting their development. However, having a child with developmental disabilities can have a negative impact on carers’ mental health and well-being, which in turn can influence their capacity to care for their children. To date, very little attention has been given to the caregivers’ capacity to care. The World Health Organization developed a Caregiver Skills Training programme which includes a brief, three-session module that focuses on improving caregivers’ well-being and mental health. This well-being programme is based on acceptance and commitment therapy. Acceptance and commitment therapy shows increasing evidence of helping people respond to their stressors, thoughts, feelings and experiences a little differently and commit to small changes that are in line with their personal values. Acceptance and commitment therapy has shown promise in improving feelings of well-being in caregivers of children with developmental disabilities. We adapted the World Health Organization Caregiver Skills Training Caregiver well-being module to suit the South African context. The resultant ‘Well Beans for Caregivers’ was then delivered to caregivers from a rural, low-resource setting in South Africa. We found the intervention easy to implement, highly acceptable to caregivers and showed promising impacts on caregivers’ well-being and mental health. This intervention has the potential to be implemented widely and sustainably to build caregivers’ capacity to care for their children.

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Section: Discussionmentioning

confidence: 99%

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

Schlebusch,

Chambers,

Rosenstein

et al. 2022

Autism

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“…In Africa and other LMIC contexts, people are diverse, systems, services and providers are diverse, and cultural expectations and interpretations of health and care are even more diverse. So, without contextually relevant research , we will not find solutions that are meaningful, scalable and sustainable for the populations that need them (Schlebusch et al., 2020; Simelane & de Vries, 2021).…”

Section: The Challenges Of Research In Child and Adolescent Mental He...mentioning

confidence: 99%

Editorial perspective: Transforming child and adolescent mental health services and systems (CAMHSS) around the globe – the importance of diversity, inclusion and equity in CAMHSS research

de Vries

2024

Child Adoles Ment Health

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Children and adolescents around the globe have mental health and neurodevelopmental needs. However, no country or region of the world has found good solutions to meet these needs, which are often long‐term and complex. Most child and adolescent mental health research comes from high‐income, mostly English‐speaking, contexts even though 95% of the world's children and adolescents live in low‐ and middle‐income countries (LMIC), where there is vast cultural, linguistic, and socio‐economic diversity, with limited services and systems for child and adolescent mental health (CAMH). There is therefore both a ‘knowledge gap’ (more than 90% of all research represents less than 10% of the global population) and an ‘identification and treatment gap’ (fewer than 1 in 10 children in LMIC ever receive a diagnosis or any kind of treatment). The purpose of this editorial perspective was to consider the challenges of diversity, inclusion and equity in CAMH research around the globe, and to present some practical things we can all do to close these gaps and transform the global CAMH research agenda.

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“…caregiver wellbeing and sense of parenting competency) outcomes, alongside an implementation evaluation (e.g. examination of fidelity or the degree to which the delivery of an intervention programme utilizes and adheres to the intended materials and procedures) is limited to non-existent in LMIC [ 13 , 14 ]. Promising scalable non-specialist and caregiver-mediated services and supports, adapted for racially, ethnically, and linguistically diverse families in Africa, remains a significant gap to be addressed [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

Improving access to early intervention for autism: findings from a proof-of-principle cascaded task-sharing naturalistic developmental behavioural intervention in South Africa

Rieder

Viljoen

Seris

et al. 2023

Child Adolesc Psychiatry Ment Health

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Background Despite the high number of children living with neurodevelopmental disabilities in sub–Saharan Africa, access to early intervention is almost non-existent. It is therefore important to develop feasible, scalable early autism intervention that can be integrated into systems of care. While Naturalistic Developmental Behavioural Intervention (NDBI) has emerged as an evidence-based intervention approach, implementation gaps exist globally, and task-sharing approaches may address access gaps. In this South African proof-of-principle pilot study, we set out to answer two questions about a 12-session cascaded task-sharing NDBI—whether the approach could be delivered with fidelity, and whether we could identify signals of change in child and caregiver outcomes. Methods We utilized a single-arm pre-post design. Fidelity (non-specialists, caregivers), caregiver outcomes (stress, sense of competence), and child outcomes (developmental, adaptive) were measured at baseline (T1) and follow-up (T2). Ten caregiver-child dyads and four non-specialists participated. Pre-to-post summary statistics were presented alongside individual trajectories. Non-parametric Wilcoxon signed rank test for paired samples was used to compare group medians between T1 and T2. Results Caregiver implementation fidelity increased in 10/10 participants. Non-specialists demonstrated a significant increase in coaching fidelity (increases in 7/10 dyads). Significant gains were seen on two Griffiths-III subscales (Language/Communication—9/10 improved, Foundations of Learning—10/10 improved) and on the General Developmental Quotient (9/10 improved). Significant gains were also seen on two Vineland Adaptive Behaviour Scales (Third Edition) subscales (Communication—9/10 improved, Socialization—6/10 improved) and in the Adaptive Behaviour Standard Score (9/10 improved). Caregiver sense of competence improved in 7/10 caregivers and caregiver stress in 6/10 caregivers. Conclusions This proof-of-principle pilot study of the first cascaded task-sharing NDBI in Sub-Saharan Africa provided fidelity and intervention outcome data which supported the potential of such approaches in low-resource contexts. Larger studies are needed to expand on the evidence-base and answer questions on intervention effectiveness and implementation outcomes.

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Challenges and opportunities of implementing early interventions for autism spectrum disorders in resource-limited settings: A South African example

Cited by 13 publications

References 64 publications

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

Supporting caregivers of children with developmental disabilities: Findings from a brief caregiver well-being programme in South Africa

Editorial perspective: Transforming child and adolescent mental health services and systems (CAMHSS) around the globe – the importance of diversity, inclusion and equity in CAMHSS research

Improving access to early intervention for autism: findings from a proof-of-principle cascaded task-sharing naturalistic developmental behavioural intervention in South Africa

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