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.

Keywords: Developmental disability; Early detection; Early intervention; Uganda.

Fig. 1

Map of Kyenjojo, Kabarole and Kasese districts in the Western region of Uganda. All distances and locations are approximate. Created by authors in Windows XP MS Paint, adapted from Map of Uganda published by OCHA (2006) accessed 21st July 2021: https://reliefweb.int/map/uganda/map-uganda-including-new-districts-region-jul-2006

Fig. 2

Timeline for healthcare worker training in Early Detection of developmental disability, and Early Intervention facilitator training

Fig. 3

Flow of participants for healthcare worker (HCW) training

Fig. 4

Healthcare worker knowledge and confidence scores; pre-initial training, post-initial training, and pre-refresher training

Fig. 5

Total number of referrals to KCDC for children under 2 years with suspected developmental disability, by month

Fig. 6

Flow of participants for the early intervention programme

Fig. 7

Total Pediatric Quality of Life family impact module scores and sub-scores for each domain, pre- and post- Early Intervention Programme (n = 48)