Understanding barriers and facilitators to long-term participation needs in children and young people following acquired brain injuries: a qualitative multi-stakeholder study

Design

We conducted a qualitative exploratory study, using a pragmatic approach and semi-structured interviews with community-dwelling CYP-ABI and parents, as well as focus groups with health and social care professionals to identify and understand participation needs, barriers and facilitators (Ritchie et al. 2014; Atkins et al. 2017). Ethical approval was gained from the UK Health Research Authority (REC-20/EM/0258).

Methodology

Two theoretical frameworks informed this study. The ICF biopsychosocial model was used to map the impact of the brain injury on the CYP/family in four domains: (1) ‘body functions and structures’, (2) ‘activity and participation’, (3) ‘personal factors’ and (4) ‘environmental factors’, as well as to describe participants’ unmet participation needs (World Health Organisation 2002). The BCW (Michie et al. 2014), which incorporates the COM-B model of behaviour and the Theoretical Domains Framework (TDF), provides a systematic process for using theory and evidence in the design of interventions. It has been used to inform multiple intervention development studies, including physical activity interventions for adolescent girls and adults (Murtagh et al. 2018; Truelove et al. 2020) and increasing social participation of adult stroke survivors (Gingrich et al. 2023). We chose it to guide the design of the intervention and the identification of determinants of the target behaviour (participation), barriers and facilitators to participation; how behaviour change might be achieved; and the context for intervention delivery. The COM-B, at the centre of the BCW, describes sources of behaviour. ‘Capability’ describes the physical and psychological abilities of a person related to a behaviour; ‘Opportunity’ is the properties of a person’s environment that affect their ability to enact a behaviour; and ‘Motivation’ describes influences on motivation to perform that behaviour (Michie et al. 2014). The TDF, a determinant framework, subdivides the COM-B components and aids a greater understanding of barriers and facilitators at individual, organisational and community levels (Table 1) (Atkins et al. 2017).

Participants

CYP-ABI, their parents, as well as health, education, social care and third-sector professionals participated in this study. CYP-ABI and their parents were identified from 95 participants who had completed an earlier survey of participation and QoL outcomes (Keetley et al. 2022). CYP were aged 5–18 years with moderate to severe ABI sustained 1–4 years previously (to capture persistent longer-term needs), and they received in-patient care at a regional specialist paediatric neurosciences centre. Survey participants who had expressed interest in being included in a further interview were purposively sampled using a sampling frame (including sex, diagnosis, county, ethnicity, injury severity and deprivation) taken from survey responses and the clinical registry data used in the survey (Ritchie et al. 2014). A 20% subsample was identified, following the principles of sample adequacy, ensuring cases were ‘information-rich’, diverse and representative of this heterogeneous population (Vasileiou et al. 2018).

Stakeholders representing health, education, social care and charity providers were recruited through existing regional referral networks and persons known to the research team and were invited to participate in a focus group.

Procedure

The study was conducted online using the Microsoft Teams platform. Interviews were completed between August 2021 and May 2022, and focus groups were completed in November 2022. All data were collected online using Microsoft Teams. Participants completed an online consent form before participation, with parents consenting for CYP under 16 years of age. Topic guides for interviews and focus groups included questions aligned to the theoretical framework domains and survey findings. Interview formats and timings were led by the CYP and parents. Interviews commenced with CYP and parents together, with those over 16 years of age being able to choose whether they wanted their parents present or not. CYP participated as much or as little as they wished and were free to leave at any point. Parents were then interviewed alone. All interviews and focus groups were conducted by RK, with the assistance of a co-facilitator (EB) and chat moderator/note taker (MW) for the focus groups. Microsoft Teams chat and whiteboard functions were also used within the focus groups. Interviews and focus groups were audio recorded and transcribed verbatim by RK or a professional transcriber, with these being cross-checked by RK and a peer researcher (LR). Transcripts and chat/whiteboard contributions were anonymised with pseudonyms or professional roles used to protect participant privacy.

Analysis

Transcripts were imported into NVivo (ver. 12). Data were analysed using a framework analysis, with the domains of the ICF and COM-B/TDF forming the preliminary framework (Fig. 1) (Ritchie et al. 2014; Lawton et al. 2016). Through a systematic and iterative approach, interview and focus group data were analysed separately as two datasets, with codes and themes identified inductively. Themes were then refined and deductively mapped to the framework before synthesising the datasets.

Fig. 1.

Data analysis plan (Ritchie et al. 2014).

Researcher characteristics, trustworthiness and reflexivity

The lead researcher is an experienced children’s neurorehabilitation physiotherapist. Recognising the potential influence of the researcher’s perspective, regular consultations with the research team and study steering group (experienced paediatric neurorehabilitation clinicians from the regional centre) were held to validate coding and interpret emerging themes (Saldaña 2016). Field notes were maintained for interviews and focus groups and used during analysis alongside the transcripts for context and reflexivity (Phillippi and Lauderdale 2018).

Unmet participation needs

Using the analytical framework, themes relating to participants’ needs were deductively refined and sorted into the framework. Participants reported multiple unmet participation needs impacting CYP-ABI and family participation and well-being. Restrictions in participation were reported in every ICF sub-domain of activity and participation at home, school and community settings, and unmet needs were related to addressing these or accessing support to overcome barriers (Table 3).

Mapping barriers and facilitators to the COM-B/TDF

Barrier and facilitator themes inductively identified included issues related to well-being, support, information and resources (Fig. 2). These themes were deductively sorted into the analytical framework and spanned the COM-B ‘Capability’, ‘Opportunity’ and ‘Motivation’ domains and nine of the TDF domains (Table 4). The main barrier and facilitator themes are presented here within their COM-B and TDF domains, with additional themes and quotes presented in Table 4 and Supplementary file S1.

Fig. 2.

Barriers and facilitators to participation for CYP-ABI and their families (− = barrier, + = facilitator).

Knowledge

An overwhelming lack of awareness and understanding about the impact of ABI across every level of society caused barriers to participation, especially in school and community settings. Hidden impairments (e.g. cognitive impairments) and new or emerging needs posed particular challenges, especially in education settings and through educational stages.

To address these deficits, parents reported needing to rapidly develop expertise about the impact of ABI and the array of potential effects, which stakeholders also recognised:

They’ve [parents] never had to deal with any of this before and I think there’s a complete lack of understanding out there from other professionals that aren’t necessarily specialists that they have all this to cope with on a daily basis. (Nurse-2)

Parents described the initial information overload in the acute phase post-injury but the need for more timely information and support in the longer-term.

Parents also reported system navigation difficulties and having to learn how to navigate complex health, education and social care systems, which many have no previous experience of:

I feel that school is a category and, you know, social life is a category, and medical is a category and the dots are not joined up for a brain injury, and a brain injury’s everything isn’t it, it’s everything, it’s everything in your life. (Megan’s Mother)

Similarly, professional stakeholders described systems as hard to understand and navigate, which affected their ability to effectively advocate and access support for families.

Skills

Participants felt that a lack of long-term monitoring and assessment was a barrier to accessing the support CYP and families needed:

I think it’s even harder with ABI seen as such a hidden disability…there’s nowhere really to turn because nobody’s really understanding what needs we have. (SCP-1)

CYP and parents described the need to address participation barriers by developing skills and strategies to manage them and achieve goals. It was felt this required practice, exposure to new contexts and support from family and rehabilitation professionals. Parents and stakeholders described frustration with the limited access to rehabilitation in the years post-injury and saw this as a major barrier to CYP-ABI’s development and participation:

I do believe that physio should have continued more for him… Occupational, I believe they could’ve taken more part in his daily activities, like walking, crossing roads… (Hamza’s Mother)

Memory, attention and decision processes

The impact of fatigue was discussed by almost all participants as a significant barrier to participation:

If you’ve got a child who’s very fatigued and is really struggling, the parent’s priority might be school and getting them to do the best at school and anything outside that might just seem too much to ask…because I think for a lot of families, the focus is on education and if a child is too tired to manage in school, then they’re not even thinking about anything outside of that. (Nurse-1)

Social influences

Long periods away from school following ABI and the impact of impairments limiting the ability to go out with friends were viewed as social barriers, impacting pre-injury friendships and resulting in social isolation, as well as mental health and well-being concerns:

Those sports and hobbies that you would have done before for that like kind of mental well-being as well as…social interaction that maybe aren’t as accessible to you now. (AHPN-6)

Although health professionals felt school was ideally placed to address unmet socialisation needs, education staff disagreed and were very aware that having one-to-one support in school impacted CYP’s ability to interact with friends. All participants recognised that their inability to participate in sports and activities also affected their socialisation.

Parents and stakeholders spoke about the lack of peer support for parents and siblings. Parents described living with the isolating after effects of their CYP’s ABI and how support from peers who understood would be invaluable:

Most people, unless they’ve come across a brain injury, they haven’t got a clue…I suppose maybe speaking to people that actually understand what you’re talking about rather than just, ‘well, you know, he looks fine’. He is fine, but it is quite isolating and lonely really. (Robert’s Mother)

There was also shared concern for siblings of CYP-ABI, the emotional impact on them and the lack of support (including peers) available.

Environmental context and resources

Parents’ substantial care and advocacy roles were seen as huge issues impacting the whole family. Care needs ranged from assisting CYP with organisation for school to complex healthcare needs and constant supervision. Some parents had stopped working or altered their working patterns accordingly. None of the families interviewed had employed carers, either choosing not to or because they experienced difficulties accessing care packages.

Parents described their experiences of advocating for their CYP as a ‘battle’. Stakeholders were acutely aware of the lack of support and complexity parents managed, voicing concerns regarding its overwhelming nature, particularly for more vulnerable families (e.g. lower socio-economic status):

I think that’s absolutely massive, that sense of feeling very, very overwhelmed and yes, some parents are able to almost do that project management bit themselves, and other parents just are not at all and need someone to project manage for them…Just not knowing which way to turn and which door to open or avenue to go down, really. (AHPN-1)

The lack of clear pathways or systems for CYP-ABI added to the care complexity. Transitions between hospital and home, return to education, education stages and into adult services presented major challenges and could occur any time after ABI. Issues faced were often caused by procedural or funding issues regarding CYP’s additional support needs:

But once he went up to high school because he looks fine and he doesn’t look like he’s had a brain injury… You wouldn’t even know if you didn’t know. And I think they think, oh it’s fine and everything’s OK when, well no, it’s not. And he does need, you know the extra support… (Elijah’s Mother)

Stakeholders confirmed systems were structurally inflexible, and they struggled to adapt to sudden changes in needs. The absence of key worker or coordinator roles and difficulties re-accessing health and social care services as new needs emerged compounded this. A lack of communication, collaboration and understanding regarding the needs of CYP-ABI within commissioning and across organisations was reported as a barrier to CYP and schools accessing appropriate support.

I wonder if that’s part of the gaps, though…where the professionals can’t refer to each other and there’s not that kind of ability, is there, to be able to kind of work across departments in the same way. Much as we all want to, I think it is an endless frustration. (AHP-7)

A lack of resources available to families was reported as a significant barrier to participation. This included housing adaptation delays, limited appropriate/accessible activities (e.g. community groups/activities), gaps in or lack of services/professional support and individual family socio-economic factors, which affected a family’s ability to engage with support offered (e.g. travel costs):

…financially as well for families because ABI is really difficult for them to fight for in terms of benefits and what fits on that criteria. When it changes circumstances and parents can’t work full time or they need long term sickness, it really does kind of put a hold on those finances….and it can make it really difficult. (SCP-1)

Social role and identity

Although CYP and parents aimed to return to ‘normal’, there was a necessity to adjust expectations and adapt to a ‘new normal’. Despite CYP not wanting to be seen as different, stakeholders acknowledged the importance of reshaping expectations. Parents and stakeholders recognised the complexity of changing and emerging needs combined with natural childhood development, expected milestones, comparisons with peers and societal norms:

I would imagine that…the majority of these young people do not want to be defined by this, do they? So, they want to keep it quiet. And I suspect that’s a really big problem for lots of them when they transition to another phase of education or a different school or a different setting where there’s no context or background and where they can be afresh or you know, kind of not quite reinvent themselves, but nobody knows, and that sets up another level of challenge. (EPS-1)

Goals

A lack of support to achieve longer-term goals was reported. CYP and parents were very clear on desired longer-term rehabilitation goals, with the majority being activity and participation focused (e.g. returning to sports, success at school, socialising with friends, and community independence). Stakeholders recognised that more long-term holistic, participation-focused goal setting is needed and noted limited support available regarding this, particularly after discharge from community therapy services.

I think as health professionals, we almost sometimes dismiss that sort of stuff, don’t we, as like the cherry on the top of the cake… We almost don’t even think of any of that extended stuff because we’re so focused on…do whatever treatment we need to do, let’s keep you alive, let’s get you sorted, let’s get you home. (Nurse-1)

In the UK, education-focused goal setting for children with additional needs should occur within the education system via an Individual Education Plan (IEP) or Education, Health and Care Plan (EHCP). Participants reported mixed success with appropriate goal setting and frustrations regarding the EHCP process for newly acquired or changed needs:

I had a young person that we couldn’t get the EHCP off the ground because her needs didn’t exist before her brain injury and I’m like well, yes. (Nurse-2)

Emotions

A lack of support for emotional and mental health for the entire family unit was described as a barrier to families’ well-being and participation.

Although CYP themselves struggled to talk about the emotional impact of their ABI, some were able to talk about what worried or frustrated them. The impact was recognised by parents and stakeholders.

Parents were more open about the emotional impact, describing feelings of trauma, grief, frustration and anxieties about their CYP’s safety and/or future:

I worry about everything. I worry about her at comp [secondary school], like at uni, all of that. (Amelia’s Mum)

The impact was substantial and continued years after the ABI – something also witnessed by stakeholders.

The impact on the entire family’s well-being was a concern. Participants were concerned for the emotional health of siblings, the breakdown of relationships, and of family life becoming fractured, limited or compromised:

It’s like we’ve got our life with the boys…and then we’ve got our separate existence with Megan. (Megan’s Mother)

Strengths and limitations

This novel study was conducted with methodological rigour and included the voices of CYP-ABI, parents and varied stakeholders, who offered personal insights into their lived experiences and the complexity of childhood ABI and the issues they face. The use of the ICF and BCW to synthesise and map the findings has enabled a ‘system view’ and the clear identification of participation needs, barriers and facilitators, which will inform future intervention development (King et al. 2018; Michie et al. 2014).

This study set out to ensure a diverse, representative sample of the spectrum of ABI diagnoses, severity, length of time since injury and socio-demography. However, it was conducted in one region of the UK with a small sample, and hence, findings may not be representative of the broader UK CYP-ABI population. Additionally, recruitment was limited via an in-patient database, and therefore, the findings do not capture CYP-ABI with milder TBIs/concussion not admitted to hospital. With only mothers participating, the findings lack the voice of fathers.

The challenges of recruiting participants who have knowledge of childhood ABI via the National Health Service means there is some dependency on known contacts and networks. Although there is potential for bias in recruiting stakeholders through existing networks and collaborations with research team members, having a research team embedded in the regional clinical service facilitated deeper understanding of the local context, systems and processes, as well as stakeholder engagement.

Interviewing CYP with their parents may have restricted their ability to speak freely; however, this was an ethical requirement for CYP under 16 due to interviewing online and the potential vulnerability of CYP-ABI, and those over 16 years of age all chose to be interviewed with their parents. It is a possibility that those less happy with their outcome may be more likely to participate. However, representation from people whose voices are rarely heard in research, including those from lower socio-economic groups and more severe ABI, may be considered a strength in terms of capturing the most complex and impactful unmet need.

Clinical implications

The findings of this study are important for health, education and social care professionals and commissioners in raising awareness of the needs and barriers that families face in the years after ABI. Clinicians need to be mindful of the wider impact of the CYP’s ABI on the whole family and how family well-being impacts on the CYP’s rehabilitation and participation. When commissioning services, the long-term needs of this population must be considered to ensure families can access support for as long as they need it, potentially throughout the CYP’s life course.