Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership

Journal article


Pozniak, Kinga, Cross, Andrea, Babic, Rose, Cavalieros, Vicki, Martens, Rachel, Rosenbaum, Peter, Imms, Christine, Novak-Pavlic, Monika, Balram, Abha, Hughes, Debra, O'Connor, Bridget and Miller, Laura. (2022). Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent–researcher partnership. Australian Occupational Therapy Journal. 69(6), pp. 653-661. https://doi.org/10.1111/1440-1630.12811
AuthorsPozniak, Kinga, Cross, Andrea, Babic, Rose, Cavalieros, Vicki, Martens, Rachel, Rosenbaum, Peter, Imms, Christine, Novak-Pavlic, Monika, Balram, Abha, Hughes, Debra, O'Connor, Bridget and Miller, Laura
Abstract

Introduction
In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops.

Methods
Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned.

Findings
Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent–researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding.

Conclusion
Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Keywordschildhood disability; co-creation; co-development; family engagement in research; parents; participatory research
Year2022
JournalAustralian Occupational Therapy Journal
Journal citation69 (6), pp. 653-661
PublisherJohn Wiley & Sons, Inc.
ISSN0045-0766
Digital Object Identifier (DOI)https://doi.org/10.1111/1440-1630.12811
PubMed ID35599379
Scopus EID2-s2.0-85130266091
Page range653-661
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
Online22 May 2022
Publication process dates
Accepted27 Apr 2022
Deposited18 Jul 2023
Grant ID2017000261
PJT 159500
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