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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
Miller, Laura Nickson, Grace Pozniak, Kinga Khan, Debra Imms, Christine Ziviani, Jenny Cross, Andrea Martens, Rachel Cavalieros, Vicki Rosenbaum, Peter
Miller, Laura
Nickson, Grace
Pozniak, Kinga
Khan, Debra
Imms, Christine
Ziviani, Jenny
Cross, Andrea
Martens, Rachel
Cavalieros, Vicki
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.
Keywords
parent well-being, family empowerment, integrated knowledge translation, ICF, strengths-based approach
Date
2022
Type
Journal article
Journal
Research in Developmental Disabilities
Book
Volume
121
Issue
Page Range
1-14
Article Number
Article 104150
ACU Department
School of Allied Health
Faculty of Health Sciences
Faculty of Health Sciences
Collections
Relation URI
Source URL
Event URL
Open Access Status
License
All rights reserved
File Access
Controlled