Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities: a mixed-methods study

Abstract

Purpose

This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities.

Methods

Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology.

Results

Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents’ needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers.

Conclusions

ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.

Implications for rehabilitation

• ENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher “early intervention and orientation” program for caregivers raising a child with neurodevelopmental disabilities (NDDs).

• ENVISAGE-Families empowered parents’ strengths-based approaches to their child, family, disability, and parenting.

• ENVISAGE-Families increased caregivers’ confidence in parenting children with NDD’s and provided them tools to support connection, collaboration, and wellbeing.

• Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.

Keywords:

• Early intervention
• neurodevelopmental disability
• parent empowerment
• consumer engaged research
• family-centred service

Acknowledgements

The authors acknowledge and thank all the parents who took part in the study. The authors also acknowledge the infrastructure support from CanChild at McMaster University, the Australian Catholic University and the Murdoch Children’s Research Institute.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Funding

This work was supported by the under grant Canadian Institutes of Health Research (PJT 159500).