Non-specialist delivery of the WHO Caregiver Skills Training Programme for children with developmental disabilities: Stakeholder perspectives about acceptability and feasibility in rural Ethiopia

• Published in: Autism : the international journal of research and practice Vol. 28; no. 1; pp. 95 - 106
• Main Authors: Zerihun, Tigist, Kinfe, Mersha, Koly, Kamrun Nahar, Abdurahman, Rehana, Girma, Fikirte, Hanlon, Charlotte, de Vries, Petrus J, Hoekstra, Rosa A
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01-01-2024; SAGE PUBLICATIONS, INC
• Subjects: Autism; Autism Spectrum Disorder; Autistic children; Caregivers; Caregivers - education; Child; Children with disabilities; Developmental Disabilities; Domiciliary visits; Ethiopia; Feasibility; Feasibility Studies; Homework; Humans; Intervention; Interviews; Literacy; Parenthood education; Poverty; Skill development; Specialists; Stigma; Supervisors; Toys; World Health Organization; Ethiopia; developmental disabilities; caregivers; non-specialist facilitators; World Health Organization caregiver skills training
• ISSN: 1362-3613; 1461-7005; 1461-7005
• DOI: 10.1177/13623613231162155

Autism and other developmental disabilities are common in low- and middle-income countries. The World Health Organization developed the caregiver skills training programme to address the needs of families having children with developmental disabilities globally. This study explored the acceptability and feasibility of the caregiver skills training programme facilitated by non-specialists in rural Ethiopia, where contextual factors such as poverty, stigma and low literacy may affect training delivery. In-depth interviews were conducted with caregivers (n = 19) and four focus groups with non-specialist facilitators (n = 8) in two rural pilot tests of the caregiver skills training programme. Results suggested that participants experienced the caregiver skills training programme as acceptable and relevant for their context but suggested some modifications to improve the programme. Caregivers’ accounts showed that facilitation by non-specialists was acceptable; facilitators emphasised the importance of supervision throughout the programme. Participants indicated that the home visit and group training modalities were acceptable and feasible. Facilitators indicated that some caregiver skills training programme topics were difficult to explain to caregivers; the concept of formalised play between caregiver and child was particularly foreign to caregivers. Lack of available toys made it difficult to practise some of the caregiver skills programme training exercises. These findings may have relevance to non-specialist delivery of the caregiver skills programme training and other parent-mediated interventions in low-resource contexts.
Lay abstract
Children with developmental disabilities including autism who live in low- and middle-income countries have very limited access to care and intervention. The World Health Organization initiated the caregiver skills training programme to support families with children with developmental disabilities. In Ethiopia, contextual factors such as poverty, low literacy and stigma may affect the success of the programme. In this study, we aimed to find out if the caregiver skills training programme is feasible to deliver in rural Ethiopia and acceptable to caregivers and programme facilitators. We trained non-specialist providers to facilitate the programme. Caregivers and non-specialist facilitators were asked about their experiences in interviews and group discussions. Caregivers found the programme relevant to their lives and reported benefits of participation. Facilitators highlighted the skills they had acquired but also emphasised the importance of support from supervisors during the programme. They described that some caregiver skills training programme topics were difficult to teach caregivers. In particular, the idea of play between caregiver and child was unfamiliar to many caregivers. Lack of available toys made it difficult to practise some of the caregiver skills training programme exercises. Participants indicated that the home visits and group training programme components of the caregiver skills training were acceptable and feasible, but there were some practical barriers, such as transportation issues and lack of time for homework practice. These findings may have importance to non-specialist delivery of the caregiver skills training programme in other low-income countries.