Early detection and intervention for young children with early developmental disabilities in Western Uganda: a mixed-methods evaluation

Abstract

Background Early support for children with developmental disabilities is crucial but frequently unavailable in low-resource settings. We conducted a mixed-methods evaluation to assess the feasibility, acceptability, and impact of a programme of early detection and intervention for young children with developmental disabilities in Western Uganda. Methods Early child development training for healthcare workers (HCWs) was implemented in three rural districts, and attendance was tracked. HCW knowledge and confidence were assessed pre-/post-intervention, and referral numbers tracked to evaluate impact. Facilitators were trained and mentored to deliver a participatory, group, early intervention programme (EIP) for young children with developmental disabilities and their families. Facilitators were tracked as they were identified, trained, and delivered the intervention, and attendance of families was tracked. Pre−/post-intervention assessments evaluated changes in family quality of life (PedsQL 2.0, Family Impact Module), and child nutritional outcomes. Focus group discussions with stakeholders also assessed feasibility, acceptability and impact. Results Overall, 93 HCWs from 45 healthcare facilities received training. In the pre−/post-evaluation, median knowledge and confidence scores increased significantly (from 4.0 to 7.0 and from 2.7 to 4.7, respectively (p < 0.001)). HCWs reported feeling empowered to refer and offer care for families with a young child with disability. Referral rates increased significantly from 148 to 251 per annum (70%; p = 0.03). Eleven EIP facilitators were trained, and all delivered the intervention; 84 families were enrolled, of which 78% attended at least 6 out of 10 modules. Amongst those with paired pre−/post-intervention data (n = 48), total family quality of life scores increased significantly (21%, p < 0.001). Improvements were seen across all domains of quality of life, with the largest impacts on emotional functioning and social functioning (p < 0.001). The programme was acceptable to caregivers and facilitators. Caregivers reported improved knowledge, family relationships, hope, emotional wellbeing, and reduced self-stigma. Conclusions A programme of early detection and intervention for children with early developmental disabilities and their families was feasible and acceptable in a rural community-based Ugandan setting. HCW training positively impacted knowledge, confidence, attitudes, and referral rates. Families enrolled to the EIP reported significant improvements in quality of life. Important programmatic barriers identified included geographical spread, poverty, gender inequality, and stigma.

Early care and support for young children with developmental disabilities and their caregivers in Uganda: The Baby Ubuntu feasibility trial

“…It is also possible, that a longer period of administration (dose dependence) is required to have a positive and holistic impact on the child, caregiver and family. These may explain the significant improvement in family quality of life seen in pre- and post-evaluations, in previous non-controlled studies ( 15 , 34 ).…”

“…The Baby Ubuntu program manual is freely available to download (footnote 1). The program is divided into ten modules, each lasting 2–3 h, covering understanding disability, positioning and carrying, feeding, mobilizing, communication, play, everyday activities, and the child within the community ( 34 ). Modules are delivered over 4–6 months, incorporating at least one home visit.…”

“…1 A conceptual framework of potential pathways to impact of the program at scale is shown in Figure 1 . Previous non-controlled pre/post mixed-methods evaluations in Uganda and Rwanda have shown a 15–20% increase in family impact quality of life post-intervention ( 15 , 34 ), however the feasibility, acceptability, impact and scalability of the program have not previously been formally evaluated. We conducted an individually randomized, pilot feasibility trial of the Baby Ubuntu program, inclusive of a mixed-methods evaluation of (i) program feasibility and acceptability for caregivers and healthcare workers (ii) preliminary evidence of impact when compared with standard care (iii) factors important for scale-up and (iv) provider costs of implementation.…”

Provision of rehabilitation for congenital conditions

“…Early detection, education, intervention, and interdisciplinary coordination for rehabilitation optimizes a child’s quality of life. 4 The limited evidence available shows major gaps and unmet needs for such services, with 240 million children and adolescents with disabilities lacking access to health services that would support their highest level of functioning. 5 The long-term implications for socioeconomic development and human capital are profound.…”

Learning from the Implementation of the Child Nutrition Program: A Mixed Methods Evaluation of Process

“…There is need for interventions which support children’s development and these programs need to be inclusive of children with disabilities and provide support to caregivers [ 6 , 8 , 9 , 10 ]. Evaluation of the implementation of such programs could provide insights into ways to enhance programs to better the outcomes for children and their caregivers [ 10 , 11 , 12 ].…”