ENabling VISions and Growing Expectations (ENVISAGE) : Parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability

Journal article


Miller, Laura, Nickson, Grace, Pozniak, Kinga, Khan, Debra, Imms, Christine, Ziviani, Jenny, Cross, Andrea, Martens, Rachel, Cavalieros, Vicki and Rosenbaum, Peter. (2022). ENabling VISions and Growing Expectations (ENVISAGE) : Parent reviewers’ perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability. Research in Developmental Disabilities. 121, p. Article 104150. https://doi.org/10.1016/j.ridd.2021.104150
AuthorsMiller, Laura, Nickson, Grace, Pozniak, Kinga, Khan, Debra, Imms, Christine, Ziviani, Jenny, Cross, Andrea, Martens, Rachel, Cavalieros, Vicki and Rosenbaum, Peter
Abstract

Aims
This study reports parents’ perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE – co-designed by parents and researchers – is an early intervention program for parents raising children with neurodisability.

Methods and procedures
Using an integrated Knowledge Translation approach, this feasibility study explored parents’ perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description.

Outcomes and results
Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE.

Conclusions and implications
ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

Keywordsparent well-being; family empowerment; integrated knowledge translation; ICF; strengths-based approach
Year2022
JournalResearch in Developmental Disabilities
Journal citation121, p. Article 104150
PublisherElsevier Ltd
ISSN0891-4222
Digital Object Identifier (DOI)https://doi.org/10.1016/j.ridd.2021.104150
PubMed ID34942443
Scopus EID2-s2.0-85121420262
Page range1-14
FunderAmerican Academy for Cerebral Palsy and Developmental Medicine
Canadian Institutes of Health Research
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online20 Dec 2021
Publication process dates
Accepted08 Dec 2021
Deposited05 Oct 2023
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