Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays.

BACKGROUND: This study evaluated the impact on caregiver strain and family empowerment among caregivers of children with disabilities who received training and education as part of a family-centred community-based early intervention programme in South India. METHODS: This prospective open cohort longitudinal study compared change from baseline to two years post-intervention among caregivers of the first cohort of children who were enrolled in the programme. Paired t-tests determined effect on the Modified Caregiver Strain Index (MCSI) and Family Empowerment Scale (FES), and p-values were adjusted for multiple comparisons using the False Discovery Rate approach. RESULTS: Of the 308 caregivers (91% women), 44% provided care to children with cerebral palsy and 56% to children with other developmental delays. The mean age of the children at baseline was 3.3 (±1.5 years). The overall mean change from baseline in the FES was 4.1 (95% CI: 3.3, 4.9; p < 0.001) representing improved empowerment. The mean change for the MCSI score was -3.7 (95% CI: -4.5, -2.9; p < 0.001) representing reduced caregiver strain. CONCLUSIONS: A family-centred early intervention programme that provides training and education to caregivers of children with developmental delays demonstrated positive change in caregiver strain and family empowerment.Implications for RehabilitationThe well-being of a child is influenced by the well-being of their caregiver.Improving caregiver well-being can help improve care and support for children with developmental delays.A family-centred early intervention therapy programme that includes training and education to caregivers can reduce strain and improve family empowerment.

An integrated knowledge translation project to develop, implement, and evaluate a train-the-trainer program at a community rehabilitation program in Tamil Nadu, India.

PURPOSE: This project aimed to develop, implement and evaluate a train-the-trainer initiative for community rehabilitation workers (CRWs) and rehabilitation specialists within a community rehabilitation program for children with delayed development in Tamil Nadu, India. METHODS: Guided by the Knowledge to Action framework, non-governmental and academic partners collaboratively developed two 2-day workshops for (1) rehabilitation specialists and (2) CRWs. Outcomes were evaluated using mixed methods, with pre and 2.5-months post surveys (59 participants) and three focus groups (17 participants) involving trainers and trainees (including rehabilitation specialists and CRWs). RESULTS: There were significant increases in the CRWs' self-perception of their capacity to assess comprehension, provide explanations, respond to questions, adjust teaching, motivate learners, communicate effectively, and provide feedback. Significant changes were noted for rehabilitation specialists in five of seven domains, and for rehabilitation specialist leads in six of seven domains. Participants appreciated the interactive training style, and the use of immersive methods such as role play, though noted challenges when instructions were unclear or when they felt that material was more theoretical. CONCLUSIONS: This collaboratively developed train-the-trainer project demonstrates the value of such an intervention, provides an example of how a tailored program can be developed, and suggests the importance of stakeholder-driven design processes.Implications for RehabilitationThe ability to provide effective training is a core skill set for people engaged in community-based rehabilitation (CBR) programs, yet examples of initiatives to train trainers are lacking, as is their evaluation.This project demonstrates the value of a collaborative and tailored train-the-trainer program to support community rehabilitation workers and rehabilitation specialists in their training roles within a CBR program in India.A stakeholder-driven design process supported by a collaboration between non-governmental organization and academic partners enhanced the capacity to develop, implement and evaluate the train-the-trainer program.