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Journal of the Australasian Society for the Study of Brain Impairment
RESEARCH ARTICLE (Open Access)

Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury

Marnie Drake https://orcid.org/0000-0003-2651-1223 A B C # , Taylor Jenkin https://orcid.org/0000-0003-2567-4514 A B # , Kate Heine A , Penelope Analytis A B , Michael Kendall A , Adam Scheinberg B D E and Sarah Knight https://orcid.org/0000-0002-9908-2231 B C D E *
+ Author Affiliations
- Author Affiliations

A Heads Together for ABI, Melbourne, Vic., Australia.

B Clinical Sciences, Murdoch Children’s Research Institute, Melbourne, Vic., Australia.

C Melbourne School of Psychological Sciences, The University of Melbourne, Vic., Australia.

D Department of Paediatrics, The University of Melbourne, Vic., Australia.

E Victorian Paediatric Rehabilitation Service, Royal Children’s Hospital, Melbourne, Vic., Australia.

* Correspondence to: sarah.knight@unimelb.edu.au
# These authors contributed equally to this paper

Handling Editor: Sharon Kramer

Brain Impairment 25, IB23101 https://doi.org/10.1071/IB23101
Submitted: 20 September 2023  Accepted: 2 April 2024  Published: 7 May 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents’ and clinicians’ perspectives regarding HOPE’s usability, acceptability, and future implementation.

Methods

Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis.

Results

Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE’s family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI.

Conclusions

HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study’s findings demonstrate HOPE’s usability and acceptability from end-users’ perspectives and will guide implementation.

Keywords: co-design, family support, paediatric acquired brain injury, parent support, peer support, rehabilitation, integrated knowledge translation, implementation.

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