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

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).

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.

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

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

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.

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.

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.

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.

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.

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.

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).