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

Disabil Rehabil. 2023 Nov;45(23):3900-3911. doi: 10.1080/09638288.2022.2143579. Epub 2022 Nov 20.

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 rehabilitationENVISAGE (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; consumer engaged research; family-centred service; neurodevelopmental disability; parent empowerment.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers*
  • Child
  • Early Intervention, Educational
  • Female
  • Humans
  • Mothers
  • Parenting
  • Parents*

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