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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.

Introduction

Acquired brain injury (ABI) is a leading cause of death and acquired disability among children and adolescents (Bruns and Hauser 2003; Araki et al. 2017) and can significantly impact individuals and their families (Wade et al. 2006; Catroppa et al. 2008; Fay et al. 2009; Catroppa et al. 2012; McKinlay et al. 2016). During the early stages following a child’s injury, families face unfamiliar emotional territory and may experience fear and apprehension about their child’s and family’s future (DeMarle and le Roux 2001; Robson et al. 2005; Kirk et al. 2015). Parents and caregivers may worry about their ability to cope with changes and challenges that come with paediatric ABI and they often lack a ‘road map’ to anticipate the future (DeMarle and le Roux 2001; Kauffman 2002; Savage et al. 2005; Collings 2007; Jordan and Linden 2013). It is unsurprising that parents and caregivers can feel emotionally and socially isolated following ABI (Gan et al. 2010; Kirk et al. 2015). Unfortunately, children and families report unmet information and emotional support needs across the care trajectory (Keetley et al. 2019). Family-centred rehabilitation that addresses child and family needs is therefore considered best practice to facilitate family adjustment and to enable families to better support, and optimise outcomes for, the child with ABI (Jenkin et al. 2022).

Opportunities for families of children with ABI to connect with and learn from peers may be a useful support resource. Traditional peer support brings together individuals who share similar experiences or health conditions to provide unidirectional or bidirectional support (Pfeiffer et al. 2011; Thompson et al. 2022). Peer support can be delivered in-person, via telephone, or online, and offers a sense of connectedness and opportunities to learn from others’ experiential knowledge (Singer et al. 1994; Pfeiffer et al. 2011; Thompson et al. 2022). For families of children with ABIs, connecting with peers who have shared similar experiences can increase understanding of ABI, alleviate distress, promote family functioning, and instil hope (McCubbin et al. 1997; Yeates et al. 2007; Gan et al. 2010; Kirk et al. 2015; Luzinat et al. 2020). Connecting with peers also reduces parents’ and caregivers’ social isolation and provides reassurance that they are not alone in their experience (Kirk et al. 2015). Despite these potential benefits, few interventions involving peer connection within this population have been described (Singer et al. 1994; Aitken et al. 2005; Fraas and Bellerose 2010; Luzinat et al. 2020). These interventions are all delivered face-to-face by trained mentors or clinicians, or require significant community resources, posing barriers for sustainability (Aitken et al. 2004).

While opportunities to connect with peers who have shared similar experiences are important to children and families (Roscigno et al. 2011; Manning et al. 2018), they often need help to access such opportunities (Keetley et al. 2019). Family-related barriers can impact access to and engagement with peer connection opportunities, including scheduling difficulties, caregiving commitments, long travel times, and the cost of attending in person (Hibbard et al. 2002; Smith and Testani-Dufour 2002). During the early stages post-ABI, additional barriers include parents’ and caregivers’ prioritisation of the child’s care, meaning that they have limited capacity to seek out, and engage with, other parents and caregivers (Aitken et al. 2004; Kirk et al. 2015). Flexible online delivery therefore offers a useful and accessible alternative to in-person peer support (Nieuwboer et al. 2013; Shilling et al. 2013).

When developing new peer support and education resources, it is important to consider their acceptability and usefulness to intended users. This can be facilitated through co-creation and participatory community engagement research techniques (Fortuna et al. 2019, 2020). Community engagement research practices emphasise collaboration with identified communities to address their wellbeing needs (Centers for Disease Control and Prevention 2011). Community-based participatory research (CBPR) is a ‘higher order’ approach to community engagement research practices, characterised by an equitable relationship between researchers and community partners (Israel et al. 2005; Key et al. 2019). Co-creation involves generating knowledge through co-ideation, co-design, co-implementation, and co-evaluation. By employing rigorous research methods and actively involving end-users, this knowledge can inform effective delivery of programs and policies (Pearce et al. 2020). While resource co-design increases end-users’ engagement (Viswanathan et al. 2004; Wallerstein et al. 2008; Wallerstein and Duran 2010; Fortuna et al. 2019, 2020), the resources must first be provided to relevant end-users. Within healthcare settings, clinicians have a key role in deciding when and how resources are delivered to patients and families (Collyer et al. 2017; Delany et al. 2017; Mooney-Doyle et al. 2017). Consideration of parents’ and clinicians’ perspectives in the co-creation of resources is therefore essential and facilitates successful and sustainable implementation (Greenhalgh et al. 2016; Delany et al. 2017; Locock and Boaz 2019).

There is a clear need for accessible peer education opportunities for families of children with ABI, particularly early following a child’s ABI when parents/caregivers face unique challenges. Heads Together Online Peer Education (HOPE) is a co-designed, online peer education resource developed to address this gap. HOPE is a website where families with lived experience of paediatric ABI share their stories through video, providing information and support to families adjusting to living with paediatric ABI.

Aims

This study is part of a larger co-creation project that uses a CBPR approach to develop and implement an online peer education resource for families affected by paediatric ABI in Australia. The current study aimed to explore parents’/caregivers’ and clinicians’ experiences using HOPE, including whether they found it usable and acceptable, and their perspectives regarding how HOPE could be used by families in the early stages following paediatric ABI. This represents an essential component of knowledge mobilisation and co-creation, whereby end-users’ perspectives are incorporated into iterative co-design (Pearce et al. 2020; Grindell et al. 2022). Active engagement with parents and clinicians in HOPE’s co-design will ensure that it addresses the real-world needs and constraints of family end-users, and the healthcare setting in which HOPE will be implemented (Jull et al. 2017).

Methods

Study design

Ethical approval was granted by The Royal Children’s Hospital Human Research Ethics Committee (HREC/64985/RCHM-2020). A convergent parallel mixed methods study design was employed, in which quantitative and qualitative data were collected concurrently (Creswell and Plano Clark 2011). The overarching co-creation of HOPE followed a CBPR approach through collaborative partnership between Heads Together for ABI (HT; not-for-profit community organisation that provides connection and support to young people with ABI and families impacted by ABI), Murdoch Children’s Research Institute (MCRI), and the Victorian Paediatric Rehabilitation Service (VPRS; state-wide paediatric rehabilitation service that provides interdisciplinary rehabilitation to children and adolescents) (Israel et al. 2005; Key et al. 2019; Pearce et al. 2020). Partners were engaged as equal contributors and shared in decision-making throughout research and co-design processes (Holkup et al. 2004). Researchers and community representatives provided input and shared their unique knowledge through regular team meetings (Horowitz et al. 2009). Community representatives included the director of HT, family members of children with an ABI, and young persons with lived experience of paediatric ABI. The current study represents the ‘co-design’ phase of HOPE’s co-creation, whereby end-users’ feedback will be integrated into HOPE’s iterative development (Donetto et al. 2015; Pearce et al. 2020).

Heads Together Online Peer Education

HOPE is an online, video-based peer education resource where family storytellers share their accounts of paediatric ABI (Fig. 1). Five families share their experiences of ABI, with a range of family members contributing to family stories. HOPE includes approximately 5 h of self-navigable video content, presented as short videos. Users can filter content by family, following one family’s story chronologically from their experiences in hospital to where they are today, or by topic, watching videos of different families talking about a particular topic (Table 1).

Fig. 1.

Screenshot of ‘Meet the families’ page on the HOPE website.


IB23101_F1.gif
Table 1.Summary of topics presented on the HOPE website.

Topic ADescription
Life at the hospitalFamily members talk about life at the hospital and describe what they found helpful.
Returning homeFamily members talk about the initial return home following time in the hospital and what helped them to adjust. They talk about working with therapists, teachers, and other family members.
Getting back to lifeFamily members talk about their child and family returning to routines (e.g. returning to school, going on family holidays) and what was helpful.
What is possible: where are we now?Family members talk about where they are today, what the child with ABI is doing, and what the family has achieved. Families talk about their goals and hopes for the future.
Understanding brain injuryFamily members talk about how they started to understand brain injury and what they found helpful (e.g. looking for resources online, working closely with a therapist).
Getting the right resourcesFamily members share experiences of how they sought appropriate support and information at different stages.
Looking after self and familyFamily members talk about strategies and tips for looking after themselves and family members, including siblings.
A The first four topics represent stages in the family’s journey (‘Life at the hospital’, ‘Returning home’, ‘Getting back to life’, and ‘What’s possible’). The final three topics (‘Understanding brain injury’, ‘Getting the right resources’, and ‘Looking after self and family’) represent key content areas that are discussed by families across multiple stages of their journey.

HT led HOPE’s preliminary development in consultation with families, VPRS clinicians, and researchers. Development involved three stages:

  1. Project planning: community consultation with parents in the HT community to identify family peer support needs following paediatric ABI, and consultation with VPRS clinicians and MCRI researchers regarding potential content.

  2. Pre-production: storyboarding techniques used to develop topics with family storytellers from the HT community in consultation with a clinician-researcher (P. A.) and VPRS clinicians.

  3. Production: a website developer designed the HOPE website in consultation with family members, a clinician-researcher (P. A.), and HT staff (K. H.). Video production was completed with family storytellers and videos were edited and uploaded onto the website. Families in the HT community reviewed the website prototype and provided consultation as part of the initial user experience testing process.

Participants and recruitment

Participants were recruited from the VPRS, which comprises two metropolitan inpatient/outpatient services and six regional outpatient services. The VPRS employs a family-centred model whereby rehabilitation is provided in partnership with children and families. Clinician recruitment occurred over 4 months. The VPRS comprises approximately 140 clinicians from a variety of disciplines. All VPRS clinicians who routinely work with children and adolescents with ABIs and their families were invited to participate via email and dissemination at statewide education days. Clinicians who were interested in participating contacted the research team.

Recruitment of parents/caregivers occurred over 16 months. Family participants were eligible to participate if they were aged 18 years or older and were providing care to a child/adolescent aged 0–18 years who had sustained an ABI in the previous 24 months and was receiving rehabilitation through the VPRS. Parents/caregivers who could not speak English were excluded as current HOPE content is in English only. VPRS clinicians provided study information to eligible parents/caregivers either in person or via email. Thirty-one potential family participants were provided with study information and 16 consented to participate. Ten parent participants provided feedback regarding their experience using HOPE: eight via semi-structured interview and two via email (see Supplementary material for further information on participant flow). All participants provided verbal consent in compliance with the research ethics procedures.

Measures

Family needs

Parent/caregiver participants completed the Family Needs Questionnaire – Pediatric Version prior to accessing HOPE (FNQ-P; Gan and Wright 2019). The FNQ-P is a 40-item questionnaire about family needs after a child or adolescent has an ABI. It groups family needs into six categories: Health Information, Emotional Support, Instrumental Support, Professional Support, Community Support, and Involvement with Care. Items are rated on a 5-point likert scale (1 = not at all met, 5 = completely met). Given that families report unmet emotional and informational needs following paediatric ABI, family participants’ Health Information and Emotional Support needs have been reported to characterise the sample.

Usability and acceptability

Usability was assessed quantitatively and qualitatively. Participants completed the System Usability Scale (SUS; Brooke 1996), a validated 10-item scale that measures perceived usability of information systems. Participants’ perspectives regarding HOPE’s usability and acceptability were also explored through semi-structured interviews (see interview guide in Supplementary material).

Procedure

All participants completed a demographic questionnaire (Tables 2 and 3) and parent/caregiver participants completed the FNQ-P via REDCap (Harris et al. 2009). Website usage data was collected for each participant (number of times website accessed, number of videos watched). Participants were contacted by the research team 4–6 weeks after being provided with access to the website to discuss their progress and schedule an interview time. Participants were sent a link to complete the SUS prior to interviews. Semi-structured interviews were conducted via videoconference using Zoom software (n = 18) (Archibald et al. 2019), via telephone (n = 2), or face-to-face in a private room (n = 1), depending on the participant’s preference. Semi-structured interview guides were pilot tested with members of the HT community. The semi-structured nature of the interviews meant that the researchers were guided by areas of importance to participants. Interviews were audio-recorded and transcribed.

Table 2.Characteristics of parent participants.

ParticipantRelationship to childYoung person with ABIRehabilitation stage at recruitmentLocation of residenceFamily needs A
ABI typeAge at injuryTime since injuryHealth informationEmotional support
P01MotherTBI5 years, 2 months1 year, 5 monthsOutpatientRegionalMet a lotMet very little
P02MotherHypoxic12 years, 4 months1 year, 3 monthsOutpatientRegionalMet a lotSomewhat met
P03FatherTBI10 years, 3 months3 monthsInpatientMetropolitanCompletely metSomewhat met
P04MotherTBI16 years, 5 months4 monthsOutpatientMetropolitanMet a lotMet very little
P05MotherStroke14 years, 1 month11 monthsOutpatientMetropolitanSomewhat metMet very little
P06MotherStroke4 years, 8 months11 monthsOutpatientRegionalSomewhat metNot at all met
P07MotherTBI14 years, 4 months2 monthsInpatientMetropolitanSomewhat metMet very little
P08MotherStroke13 years, 7 months1 year, 2 monthsOutpatientRegionalMet a lotSomewhat met
P09MotherTBI8 years, 9 months1 year, 3 monthsOutpatientRegionalSomewhat metMet very little
P10MotherTBI12 years, 1 month8 monthsOutpatientRegionalMet very littleMet very little

TBI, traumatic brain iInjury.

A Family needs information derived from participants’ responses to the FNQ-P.
Table 3.Characteristics of clinician participants.

ParticipantAge (years)DisciplineSettingLocationYears working in disciplineYears working in paediatric rehabilitation
C0145–54NeuropsychologistOutpatientRegional2014
C0225–34Social workerOutpatientRegional11
C0365–74PaediatricianInpatient/outpatientMetropolitan4530
C0435–44PhysiotherapistOutpatientRegional2015
C0525–34PhysiotherapistOutpatientRegional73.5
C0635–44Social workerInpatient/outpatientMetropolitan94
C0735–44Occupational therapistOutpatientRegional914
C0825–34Social workerInpatient/outpatientMetropolitan4.50.75
C0965–74Social workerOutpatientRegional413
C1035–44Team leader AOutpatientRegional99
C1145–54Social workerOutpatientRegional203
C1245–54NeuropsychologistInpatient/outpatientMetropolitan1414
C1325–34Occupational therapistInpatient/outpatientMetropolitan54
A Team leaders coordinate intake of referrals, care planning, and goal setting processes, and ensure that children and families receive appropriate support from the rehabilitation team.

Reflexive statement

All interviews were conducted by authors T. J., an experienced qualitative researcher, and M. D., a novice qualitative researcher who received training regarding qualitative research methodologies and semi-structured interviewing. Both were female, Caucasian, and were undertaking a Master of Psychology (Clinical Neuropsychology) and PhD at the time of the study. The researchers had no pre-existing relationships with the participants.

Data analysis

Descriptive statistics were used for demographic data and questionnaire measures (SUS, FNQ-P). Given the preliminary nature of this study, inferential statistics were not applied. FNQ-P scores for Health Information and Emotional Support needs were calculated, ranging from 0 to 5. Higher FNQ-P scores indicate more needs met, with lower scores indicating fewer needs met. Participants’ scores were rounded to the nearest whole number, and descriptors are reported (Table 2; 1 = not at all met, 2 = met very little, 3 = somewhat met, 4 = met a lot, 5 = completely met). The SUS yields a single number ranging from 0 to 100 representing overall usability, with higher scores indicating greater perceived usability. SUS scores were interpreted in relation to norm-referenced data, with scores over 68 indicating above average usability (Brooke 2013).

Interview data were analysed by two members of the research team (T. J. and M. D.) using inductive content analysis (Vears and Gillam 2022). After each interview, T. J. or M. D. reviewed the recording, completed a reflective journal entry, and read and re-read transcripts. Preliminary data analysis was undertaken between all interviews. Further data analysis occurred concurrently to ongoing data collection, such that each transcript was uploaded to NVivo (ver. 12, QSR International) and analysed. Transcripts were first coded into ‘big picture’ content categories, then sections of data within these broad categories were compared and subcategories were developed. Recruitment ceased following 13 clinician and eight parent/caregiver interviews, at which point the research team reached consensus regarding data saturation.

Results

Participants

A total of 23 participants were enrolled in the study, including 13 clinicians and 10 parents. All eight VPRS sites were represented, including metropolitan (n = 2) and regional (n = 6) sites, and all but one clinician participant were female. Eight parents indicated that their family structure was a couple family with children, and two parents had single parent families with children. Nine parents were of Caucasian or European backgrounds. Three parents spoke languages other than English at home but chose to be interviewed in English without the assistance of an interpreter. Interviews were conducted in one session of 58–64 min duration for clinicians and 21–66 min duration for family participants. A summary of demographic data is provided in Tables 2 and 3.

Usage data

Clinicians accessed HOPE a total of 74 times (M = 4.15 h, s.d. = 2.74 h per clinician), usually via a desktop computer (91%), but sometimes using a mobile phone (9%). Parent participants accessed HOPE a total of 44 times (M = 4.4 h, s.d. = 37 min per parent), usually via a mobile phone (50%) or desktop computer (45%), and sometimes using a tablet device (5%).

SUS

The average SUS score was 81.73 (range 60–97.5) for clinicians and 80.5 for parents (range 62.5–95). HOPE’s usability was rated as ‘acceptable’ by 11 of the 13 clinicians, and four out of the five parent participants who completed the SUS.

Qualitative data

Inductive content analysis generated three categories and nine sub-categories (Fig. 2). Participant quotations are presented in Table 4.

Fig. 2.

Categories and sub-categories.


IB23101_F2.gif
Table 4.Supporting quotations.

CategoriesSub-categoriesRepresentative statements
Feeling satisfied with HOPEAppreciating the family-centredness of HOPEFamily-centred content
‘I loved how it was broken down into the areas of life in hospital, coming home, looking after yourself, finding the right resources, those key areas were spot on … they’re the areas that you want help with, because they’re definitely the areas at the time that we were looking for support in.’ (P08)
‘It’s about the child but the child in the family and I think that’s really, really, really good because it is a family story, like the impact it has on families, rather than focussing on the child, it was focussing very much on the effect on the families, I think, which I think is great.’ (C03)
Family storytelling approach
‘It was good to see other families, how they’ve navigated it, and I actually felt I could relate because a lot of what they were saying was like, “Oh my goodness, that was exactly how it was for me,” without even being part of a support group at the time … I could definitely relate …’ (P08)
‘The storytelling approach made it feel more real and honest, which I think then it can be perceived really well from families. It doesn’t feel like they’re getting lectured. It feels like, “Oh, I’m sharing some information, and you might find it helpful, but this is my experience, and I want to share it in the hope that other people might find it helpful.” So, it kind of was more inviting, it was not so, yeah, formal. Sometimes, I think, they can be a bit stiff. You know when you watch professional workplace videos or something, they’re a bit stiff [laughing]. Whereas that just felt really relaxed and casual.’ (C06)
Evaluating HOPE’s online deliveryNavigation and presentation
‘The videography is really nicely done, so it's quite a professional standard. It's not your kind of YouTube, the videography is actually incredibly professional. And it's quite a slick website, it was nice. It really comes across as not amateur-ish at all, quite professional, a really, really good setup … The structure of the website was great, it was clear, it did look polished, it was easy to use, very straightforward, so that was terrific.’ (C01)
Accessibility and flexibility
‘It’s a “go at your own pace” sort of project, so you could have as much or as little … you can pick up where you left off. So you can consume it all at once in large chunks, or you can consume it in small chunks.’ (P04)
‘It can be good for some of the families that struggle with time and with work and other commitments. So, they can access it when they feel need it, and I guess in COVID times it probably also helps that they can access this and they don’t have the stress of meeting families in person – which would be nice – but I guess if they’re in isolation or they’ve got other things going on, they can access an online forum or online portal or a website or videos like this and still feel like they’ve got some sort of support.’ (C08)
Getting something out of HOPEModelling how to share our family’s story
‘It [HOPE] actually helped me model [child]’s story a bit, or how I frame it when I talk about [child]’s injury to other people. It helped me find the words a little bit, or the explanation, and it helped me define what [child]’s journey sort of currently is and how it’s going to be, how I talk about it to other people.’ (P04)
Connection
‘It is so hard to talk to friends and family sometimes because as much as they’re going through the process with you, it’s kind of not the same as speaking to someone who has already been in a situation like this. It’s a very long road ahead but your website, seeing some of those stories, I really connected well with them.’ (P02)
‘[Families would get] a sense of, perhaps less of a sense of isolation, you know the feeling that others have been through this before and that, you know, would hopefully bring about a sense, a sort of reassuring sense that, you know, everything will be okay in the long run … that overall kind of feeling like others have walked this path before.’ (C07)
Optimising HOPEIncreasing storyteller diversityChild-related factors
‘I didn't find anybody there who'd had a stroke … and I was searching for that.’ (P05)
‘… there wasn’t a lot of younger [children’s] stories.’ (P08)
Family-related factors
‘I don’t know if there’s any single parents in there, so it would be good to have single parent stories … because there’s the two parent families in a lot of those stories.’ (P07)
‘There was no obvious, I would say, marginalised communities, like communities that perhaps English is a second language or that they might have more difficulty because of their literacy or various other issues that, just coping with the whole medical and hospital stay, would be very challenging.’ (C09)
Expanding HOPE’s contentNavigating systems
‘It’s hard to provide specific resources and tips and remain kind of current and relative all the time. So I was sort of surprised that there wasn’t much discussion about NDIS and navigating systems and stuff like that.’ (C07)
Links to additional resources
‘Maybe just to have links to … all the different sort of programs that are out there or support organisations, and there’s lots of them, but the sort of more generalised support groups could be kind of handy too.’ (P04)
‘… there's a lot of stuff that the families share on those videos that were useful for them and I didn't really explore much further than that, but it would be helpful for some of those resources if they're publicly available to be handy on that website.’ (P05)
Suggesting further supportEmotional support
‘… people that have been through trauma, you know it will evoke memories which they don’t expect … I think someone could watch that [HOPE] and has had a child that’s had severe trauma and watch it and suddenly it brings back bad memories and flashbacks and those traumatic stress stuff… it could be quite negative, so I guess that’s where I’m sort of saying about in hospital where there’d be like you’d probably want some sort of support around in case they have a negative reaction or to debrief afterwards or whatever.’ (C03)
‘Next steps’ in peer support
‘It would be nice then to have, whether it’s a forum or a connect hub of some sort that you could reach out … it would be nice to have another step that after you watch it there’s a community that you feel a part of.’ (P06)
‘I think it’s always having a lens around the safety for people in terms of their emotional and mental health safety, is where I would sit. I think, you know, families who have been through that sort of stuff are usually very fragile because there’s just been so much and they’re just surviving, they don’t have time to process a lot of it … maybe having support … whether there is some peer support that they can tap into just to chat to another parent whose been through it. So, there’s that sort of peer support.’ (C11)
Guiding implementationThinking about how HOPE should be introduced to familiesTiming of introducing HOPE
‘I think it’s probably one of the most critical questions is “when do you introduce [HOPE]?” and at the start it might be there, but you’re just frantic and you’re just swimming above it. But not too far away I would have actually, like within the first few weeks for me I would have liked it now that, in reflection, because there are moments that are quieter moments that they [child] fall asleep, but you don’t sleep, or you’re waiting at doctors’ … I think it’s important that you know it’s there, and whether people use it or not is up to them. But it would have been nice to have had a resource that wasn’t just about, “Here, read about what a stroke means,” all the very medical … It would have been absolutely lovely.’ (P06)
‘I think because sometimes families feel alone and they feel like they're the only one who's experiencing this or has ever experienced it, and sometimes it can be really helpful to see another family in front of them who has been through that experience, and they have survived, and they have thrived. I think it's a really lovely, you know, different perspective for them to look at things from. Not all families are at a point where you could point them in that direction, but for a lot of families, I think it offers hope and understanding … Things that are playing into that, trauma, how far into their journey they are in terms of time of diagnosis, the age of their child, those are the sorts of things that we would be keeping an eye out for, those red flags that say, “we need to slow down and ease into the information.’ (C10)
Considering how HOPE could be used by familiesFocusing on content that’s relevant ‘right now’
‘I think the topics were good because they did form milestones along what we would be experiencing, the hospital stay and the exit out of hospital, and going to school, and trying to go back to normal life. Right now, I'm interested in the transition into school and managing and advocating for school. I was looking a little bit at those stories and … I could relate to some of the struggles and things like that.’ (P05)
‘It's like a gentle step into this world of brain injuries, support and families. Because it's up to you how far you go. You don't want to face somebody straightaway and go face-to-face and you don't know what emotions [will] come up.’ (P01)
‘There would be some parents I wouldn’t want them going home and watching that on their own. I would want to know that they were going to watch it with someone else or have some support with them or perhaps do it in a social work session, for example, so that they’ve got some support with them.’ (C12)
Having access to adequate support
‘I think, afterwards, you’ll have a lot of questions, and having somebody to be able to ask those questions to and give you the comfort that there is support … within the hospital setting, if that's where you're going to, if you're planning on sharing this with families in the hospital setting, I guess, getting them [clinicians] prepped for some of those questions …’ (P05)
Seeing HOPE’s potential to educate othersEducating others in the community
‘I guess it would be good for teachers or principals to have access to something like this and understand a little bit more about the common themes and … what these families are trying to work with schools on and how it could be a support for schools.’ (P05)
Educating clinicians
‘From a professional’s viewpoint … this is a fabulous learning resource for clinicians. Clinicians that want to work in the area, the students that come through, I mean, get them to watch one or two of those family videos would give them a really good, a good insight into … we don’t know their [families’] whole story.’ (C03)

Category 1: feeling satisfied with HOPE

Participants described their satisfaction with HOPE. They valued the family-centredness of its content and delivery, enjoyed its online delivery, and felt that they had benefited from using HOPE.

Sub-category: appreciating the family-centredness of HOPE

Participants reflected on the family-centredness of HOPE’s content and delivery and expressed that its content is highly relevant to families of children who have recently sustained an ABI. They enjoyed the breadth of topics and felt that they provide a holistic view of paediatric ABI and how it impacts children and families over time. Participants found HOPE’s family storytelling approach engaging and easy to understand and appreciated storytellers’ honesty and openness.

Sub-category: evaluating HOPE’s online delivery

Participants expressed liking the quality of the HOPE website and videos. Most participants found HOPE easy to use; however, some reported minor difficulties in navigating the website and offered suggestions to make HOPE more user-friendly (e.g. minor changes to menus, functionality to allow users to keep track of what they have already watched). Participants appreciated the web-based nature of HOPE and reflected on its benefits in terms of accessibility and flexibility.

Sub-category: getting something out of HOPE

When reflecting on what they felt they had gained through using HOPE, parent participants expressed having enjoyed learning from others’ experiences and reflected on feeling more empowered to advocate for their children, gaining confidence in sharing their story about their child’s and family’s journey following ABI, and developing greater acceptance of their child’s ABI. Clinician participants anticipated that families who use HOPE will feel reassured, validated, and connected through shared experiences.

Category 2: optimising HOPE

Participants provided several suggestions to optimise HOPE, including increasing storyteller diversity, expanding content, and adding further emotional and peer support options.

Sub-category: increasing storyteller diversity

Participants reflected on the diversity of HOPE’s storytellers. They made suggestions about the types of families and perspectives that they would like to see represented in future iterations of the resource. Participants described wanting to see greater diversity in child-related factors (e.g. age at injury, ABI type and severity, time since injury) and family-related factors (e.g. family structure/dynamics, socioeconomic status, culture). Participants also shared that they would like to see a wider range of perspectives represented on the HOPE website (e.g. other family members).

Sub-category: expanding HOPE’s content

Participants suggested topics they would like to see expanded upon, or added to HOPE. Parent participants suggested adding further content regarding inpatient rehabilitation (e.g. family meetings, planning for return home, interdisciplinary team roles). Clinician participants commented on the lack of information about navigating government insurance systems (e.g. National Disability Insurance Scheme [NDIS] and Transport Accident Commission [TAC]) but recognised the potential challenges of including location- and service-specific information. Participants also suggested that the HOPE website would benefit from links to additional resources (e.g. publicly available ABI resources, information about local supports).

Sub-category: suggesting further support

Participants expressed that HOPE’s content could be perceived as emotionally ‘triggering’ by some viewers. Accordingly, they suggested adding contact details for mental health services (e.g. Lifeline, Beyond Blue). Participants also provided suggestions for potential ‘next steps’ in peer support that could be added to HOPE (e.g. forums, Facebook groups, face-to-face or online peer support groups, peer mentoring).

Category 3: guiding implementation

Participants considered how HOPE should be introduced to, and could be used by, families following childhood ABI. They also reflected on HOPE’s potential to educate others about ABI, including the child’s broader community and clinicians.

Sub-category: thinking about how HOPE should be introduced to families

All participants felt that HOPE would be a valuable resource to provide to families of children who have recently sustained an ABI. They felt that clinicians would be well placed to introduce HOPE to families, and parent participants expected that clinicians would have an understanding of the resource. Clinician participants expressed that introducing HOPE to families would ‘require a bit of discussion from a team viewpoint’ (C03), and that they would consider ‘each family case-by-case’ (C07). They reflected on factors that would impact if, and when, they would introduce HOPE to families, including the child’s/adolescent’s time since injury, stage of care, and family ‘readiness’ to access HOPE in terms of psychosocial factors.

Several parent participants reflected on their ‘readiness’ to hear about some of the topics discussed by HOPE’s storytellers and felt that they may not have been ready to hear or think about ‘what’s possible down the track’ (P10) early in their child’s hospital stay (i.e. within the first few weeks following their child’s ABI). Despite this, they felt that it would be ideal for families to be provided with access to HOPE during this early stage, even if they do not choose to use it immediately.

Sub-category: considering how HOPE could be used by families

Participants reflected on how they used HOPE, and how they think that families of children with ABI could use it. They appreciated HOPE’s flexibility and liked that families can use it in a way that suits them (e.g. watching content by family or by topic). Parent participants described enjoying watching videos that are relevant to their family ‘right now’ (P05) and expected they will find other topics more relevant over time. Participants appreciated that families can access HOPE at a time that best suits them, and they felt that this would be particularly important during the child’s inpatient hospital stay.

Participants highlighted the importance of families having access to adequate emotional support while using HOPE. Clinician participants suggested that HOPE be provided alongside emotional support from the child’s rehabilitation team (e.g. by a clinical psychologist or social worker). They highlighted that this would be particularly important when the child and family have returned home and may not have access to readily available community mental health support. Participants also felt that HOPE could be used as a ‘soft entry’ (C01) or ‘gentle step’ (P01) to further peer support, enabling families to feel connected and supported through learning from those who have shared similar experiences, even if they do not yet feel ready to access more traditional bidirectional peer support.

Sub-category: seeing HOPE’s potential to educate others

Participants recognised HOPE’s potential as a resource to educate others about paediatric ABI. Parent participants expressed that it would be useful to share HOPE with their entire family, and they felt that it would be useful to share HOPE with the child’s broader community (e.g. friends, teachers, sport coaches). Clinicians expressed that HOPE could be used to educate clinicians about paediatric ABI, providing a holistic account of its impacts on children and families.

Discussion

This study explored parents’ and clinicians’ experiences of using HOPE, including whether they found it usable and acceptable, and perspectives regarding how HOPE could be used by families in the early stages following paediatric ABI. Participants expressed that HOPE is a usable and acceptable resource for parents of children and adolescents who have recently sustained an ABI, and offered clear directions for optimising future iterations of HOPE and considerations for its implementation into clinical care.

Perspectives on the usefulness of HOPE: a family-centred resource

Participants valued HOPE’s family-centred content and appreciated how the storytellers provide a holistic account of paediatric ABI, depicting the entire family’s experiences over time. This aligns with previous literature that has found that families of children with ABI value rehabilitation that recognises the impact of ABI on the entire family (Keetley et al. 2019; Jenkin et al. 2023). Participants appreciated that families can individualise their approach to using HOPE by watching content that is relevant to their lives ‘right now’, and access content that becomes more relevant to them over time. Families of children with ABI report unrecognised and unmet informational support needs across the care trajectory (Keetley et al. 2019), and often lack a ‘road map’ to anticipate the future (Jordan and Linden 2013). HOPE may therefore offer informational support and anticipatory guidance to families over time in a way that can be tailored to their needs across the care trajectory.

HOPE’s content was perceived as highly relevant to families of children with ABI and provided parents with opportunities to learn practical information from others who have shared similar experiences. Perceived sameness and shared social identity are important concepts within peer support (Nieuwboer et al. 2013), and the current findings demonstrate that feelings of connection are possible through online, unidirectional peer support. Previous literature regarding bidirectional peer support highlights the value of parents being matched with peers according to a range of factors (e.g. child age, disability, culture, language, location, socioeconomic status, and family dynamics; Aitken et al. 2005). This approach means that peer support may be more beneficial to parents as information and support may seem more credible due to a sense of perceived sameness (Ainbinder et al. 1998; Dodds et al. 2023). While some parent participants in the current study desired greater diversity in storytellers, they expressed that HOPE provided them with knowledge, connection through shared experience, and increased confidence and feelings of empowerment.

Parents in the current study shared that HOPE provided them with knowledge, strategies, feelings of empowerment, and confidence to advocate for their children. Following childhood ABI, families navigate complex medical, educational, legal, and governmental systems, which can challenge their advocacy efforts (Rossetti et al. 2021). Peer support provides an avenue for information sharing and emotional support and is an important antecedent of parental empowerment in healthcare settings (Shilling et al. 2013; Ashcraft et al. 2019). Parental empowerment and advocacy skills are essential drivers of collaborative clinician–parent partnerships, which can result in greater parental involvement in care decisions and improved child outcomes (Rosenberg et al. 2018; Brady et al. 2020).

Children and families value opportunities to connect with peers who have shared similar experiences (Roscigno et al. 2011; Manning et al. 2018); however, several barriers can impact their access to, and participation in, peer support (Hibbard et al. 2002; Smith and Testani-Dufour 2002; Aitken et al. 2004; Kirk et al. 2015; Keetley et al. 2019). HOPE’s online delivery means that it can be accessed by families at their convenience, reducing the potential impact of barriers including scheduling difficulties, travel times, and cost of attending peer support in person (Hibbard et al. 2002; Smith and Testani-Dufour 2002). HOPE’s self-navigable format also presents a novel ‘soft entry’ or ‘stepping stone’ to peer education and support for families in the early stages following paediatric ABI, at which point parents are often limited in their capacity to engage in peer support (Aitken et al. 2004; Kirk et al. 2015).

Considerations for implementing HOPE

Clinicians assume a central role in facilitating families’ access to emotional support (Gan et al. 2010). Understanding clinicians’ roles in introducing HOPE to families is therefore integral to successful implementation. In the current study, parent participants shared that they would have liked to have had access to HOPE in the early stage following their child’s ABI, aligning with literature that describes parents’ needs for informational and emotional support during this early stage (Jones et al. 2018). Parent participants also expressed that they would expect clinicians to introduce HOPE during rehabilitation. This is consistent with previous findings that families want peer support interventions to be provided or facilitated by health professionals (Gan et al. 2010; Mooney-Doyle et al. 2017). Clinician participants reflected on factors that would influence if, and when, they would introduce HOPE to families, and expressed that this decision would best be made on a case-by-case basis and in consultation with the child’s broader rehabilitation team. Clinicians make decisions about how and when to provide resources to patients by drawing upon clinical judgement and input from their wider multidisciplinary teams (Pollard et al. 2015; Collyer et al. 2017). As such, clinicians have been described as ‘gatekeepers’ within healthcare, shaping and controlling patients’ access to resources, services, and knowledge (Collyer et al. 2017). Within the context of peer support, clinician attitudes can also impact patients’ and families’ uptake of, and engagement with, peer support opportunities (Grande et al. 2006; Steginga et al. 2007; Taylor et al. 2016). Clinicians therefore have essential roles in not only introducing peer support or education resources to families, but also in supporting their engagement with these resources within healthcare settings. These findings highlight the importance of partnership and integrated knowledge translation processes with resource end-users and those who will introduce the resource to end-users. The current study provides insights into how parents and clinicians feel that HOPE should be implemented, and findings will be used to guide implementation within paediatric ABI rehabilitation in Australia.

Strengths and limitations

This study is part of a wider CBPR co-creation project that is grounded in collaborative and equal partnership between the community, clinicians, and researchers. This approach ensured HOPE’s relevance to families of children with ABI and facilitated the development of research that is relevant to, and valued by, the community. This project offered a unique opportunity to learn from the community’s experience whilst leveraging the researcher’s resources and expertise (Holkup et al. 2004; Horowitz et al. 2009; Suarez-Balcazar et al. 2020). This approach contrasts with previous intervention design and resource development within paediatric ABI, which has traditionally followed an end-of-grant approach to knowledge dissemination (MacDonald and Wiseman-Hakes 2010; Bevan Jones et al. 2020). Interventions developed using CBPR are more sustainable and effective, and co-designed online peer support resources developed using participatory research techniques are more likely to meet end-users’ needs, resulting in greater engagement (Viswanathan et al. 2004; Wallerstein et al. 2008; Wallerstein and Duran 2010; Fortuna et al. 2019, 2020).

The current study aimed to explore participants’ experiences of using the HOPE resource, rather than evaluate its efficacy in improving parent/caregiver outcomes. For the purposes of this study, the FNQ-P was used to characterise participants’ Health Information and Emotional Support needs before accessing the HOPE website. Although the FNQ-P was also administered after parent/caregiver participants had accessed HOPE, very few of them completed the questionnaire. As such, its data were not included in this manuscript (see Supplementary material for completion rates). While most parent/caregiver participants completed a semi-structured interview (8/10), only five completed the follow-up questionnaire. Maintaining contact with, and retention of, parent/caregiver participants in this study was challenging, and several parent/caregiver participants reflected on the many demands that they were facing following their child’s recent ABI. This change in family life and demands may have contributed to the low completion rate of the follow-up questionnaires for parent/caregiver participants.

The current sample included a broad representation of parent participants from a range of family structures (e.g. single parent families) and culturally and linguistically diverse backgrounds; however, some communities were not represented, including Aboriginal and Torres Strait Islander families, and families from refugee and migrant backgrounds. Future research should therefore engage these communities in evaluating HOPE, using culturally appropriate community partnership and engagement strategies. Additionally, given that only parents/caregivers – most often mothers – participated in this study, future research should explore other family members’ perspectives of HOPE. Finally, family needs were assessed prior to accessing HOPE. Findings indicated that needs for health information were typically at least ‘somewhat met’, but that parents’ emotional support needs were often ‘met very little’. Future research should investigate HOPE’s effectiveness in meeting these family needs.

Where to next? Future directions

Current findings will guide future iterations of HOPE, improving its acceptability and usability. Participants raised important considerations regarding the supporting infrastructure and resources necessary for integrating HOPE into routine clinical care in the early stages following paediatric ABI. These insights will be explored in further detail in the next stage of HOPE’s wider co-creation process which will involve a hybrid co-implementation-effectiveness trial, allowing for dual evaluation of the implementation and effectiveness of HOPE in meeting families’ emotional and informational needs (Landes et al. 2019; Pearce et al. 2020). This approach will promote rapid integration and adoption of HOPE into clinical practice and will ensure that the resource is sustainable and efficacious during inpatient rehabilitation (Curran et al. 2012; Landes et al. 2019).

Conclusion

This study’s findings demonstrate the usability and acceptability of HOPE, an online peer education resource, from the perspectives of parents of children with ABIs and rehabilitation clinicians. These findings will contribute to the iterative co-design of HOPE, ensuring that it is trusted and endorsed by future users, thus leading to greater likelihood of its successful adoption and implementation in paediatric ABI rehabilitation in Australia.

Supplementary material

Supplementary material is available online.

Data availability

The data that support this study cannot be publicly shared due to ethical or privacy reasons and may be shared upon reasonable request to the corresponding author if appropriate.

Conflicts of interest

M. D. and T. J. are employed as researchers by Heads Together for ABI, K. H. is Founder and Managing Director of Heads Together for ABI, and M. K. is a member of the Heads Together for ABI community. The authors declare no other conflicts of interest.

Declaration of funding

This work was supported by funding from the Portland House Group, the Kids and Families Foundation, and the Rundle Foundation.

Ethics standard

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.

Acknowledgements

Thank you to the parents and clinicians that participated in this study and made this research possible. We acknowledge the efforts of the Heads Together for ABI community and extend sincere thanks to HOPE’s family storytellers who generously gave their time to share their experiences.

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