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

Journal article


Miller, L., Imms, C., Cross, A., Pozniak, K., O'Connor, B., Martens, R., Cavalieros, V., Babic, R., Novak-Pavlic, M., Rodrigues, M., Balram, A., Hughes, D., Ziviani, J. and Rosenbaum, P.. (2022). Impact of “early intervention” parent workshops on outcomes for caregivers of children with neurodisabilities : A mixed-methods study. Disability and Rehabilitation. 45(23), pp. 3900-3911. https://doi.org/10.1080/09638288.2022.2143579
AuthorsMiller, L., Imms, C., Cross, A., Pozniak, K., O'Connor, B., Martens, R., Cavalieros, V., Babic, R., Novak-Pavlic, M., Rodrigues, M., Balram, A., Hughes, D., Ziviani, J. and Rosenbaum, P.
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.

Keywordsearly intervention; neurodevelopmental; disability; parent empowerment; consumer engaged research; family-centred service
Year2022
JournalDisability and Rehabilitation
Journal citation45 (23), pp. 3900-3911
PublisherTaylor & Francis
ISSN0963-8288
Digital Object Identifier (DOI)https://doi.org/10.1080/09638288.2022.2143579
PubMed ID36404703
Scopus EID2-s2.0-85142434525
Web address (URL)https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2143579
Research or scholarlyResearch
Page range3900-3911
FunderCanadian Institutes of Health Research
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online20 Nov 2022
Publication process dates
Accepted16 Oct 2022
Deposited05 Jul 2023
Grant IDPJT 159500
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