A scoping review of the needs of children and young people with acquired brain injuries and their families

Understanding the needs of children and young people (CYP) with acquired brain injuries (ABI) is essential in delivering pathways of care and providing effective rehabilitation. Aim: To identify relevant literature and key themes relating to the nature and extent of needs (met, unmet or unrecognised) of CYP with ABI and their families. Method: Scoping review. Sixteen electronic bibliographic databases were searched using terms relating to children, brain injury and need. Papers were screened against eligibility criteria by two independent reviewers. No date limits were applied. Data was extracted by the lead author regarding the needs of CYP with ABI and their families and thematic analysis conducted to identify the key themes. Methodological quality was not assessed. Results: A total of 28 articles were identified including three systematic reviews, one scoping review, two practice recommendation articles and 22 original research studies. Participants included CYP with ABI, parents, siblings and professionals. Four key themes were identified; CYP-related impairment needs, support needs, return to school and long-term aftercare. Conclusion: CYP with ABI and their families report extensive needs, many of which are often unmet or unrecognised by those supporting the CYP. Needs transcend the health, social care and education domains.

preliminary step towards conducting a systematic review regarding the needs of the population (15).

Objective
The objective of this scoping review was to identify relevant literature and key themes relating to the needs of CYP with ABI and their families and the nature and extent of those needs, met, unmet or unrecognised.

Inclusion criteria
A scoping review protocol was formulated using the Joanna Briggs Institute (JBI) methodology for scoping reviews (16). The following eligibility criteria were set:

Inclusion criteria
 Participants: o CYP aged 0-18 with an ABI (traumatic brain injury (TBI) and nontraumatic brain injury (NTBI)) o Parents/family members of CYP with ABI o Education, health or social care professionals involved in the care of CYP with ABI  Concept Defining and measuring 'need' is complex and challenging as a person's perceived need reflects their individual, cultural and societal values (17). As this scoping review was exploratory in nature it was decided that a broad search strategy would be employed to try to capture a breadth of evidence whilst maintaining specificity to the topic area and population. Definitions of need were adopted from the existing literature and therefore defined as a problem that significantly interferes with daily life (18) and further categorised into 'met need' (services received), 'unmet need' (perceived need but not receiving services) and 'unrecognised need' (not used or needed a service but reported impairments/limitations) (19,20).

Search Strategy
The search strategy was formulated using the JBI Scoping review methodology and PICO framework (Table 1). An initial search of Medline and CINAHL was conducted to identify relevant articles and keywords. The search strategy was adapted to the individual database requirements and terms were deliberately kept broad to ensure all relevant literature was identified. Searches using all identified keywords were then undertaken across all included databases. Grey literature sources and reference lists were reviewed for additional articles. No date limits were imposed, however, only English language articles were included due to lack of funding for translation.
Papers meeting the inclusion criteria were classified according to level of evidence provided by the research design. Table 2 shows the classification for each type of question.

Data extraction, summary and synthesis
The PRISMA guidelines for preferred reporting items for systematic reviews and metaanalysis and flowchart were used. The initial identification and screening of titles was conducted by the first author (RK). Two reviewers independently screened all abstracts to asses eligibility against the inclusion and exclusion criteria and by the first author from full articles if not clear within the abstract. Any discrepancies were resolved through discussion. Full texts were obtained for all shortlisted articles. The results were charted using the JBI recommendations using the following headings: author, year of publication, country of origin, aims/purpose, study population and sample size, methodology/methods, findings/outcomes, key findings related to scoping review question. From the results chart, key themes relating to the needs of the population were identified and synthesised. The quality of the articles was not assessed as this is a scoping review to identify relevant evidence (16).

Literature Reviews
Jones et al (18) conducted a scoping review of the needs of children and other family members after a traumatic injury. Twelve papers met the inclusion criteria, with the majority of the papers focusing on CYP with TBI. Key themes that emerged were needs specific to adolescence, support needs for emotional, cognitive and social problems, physical difficulty needs and support around care transitions and return to education. Three qualitative systematic reviews representing level one evidence were identified.
Two focussed on the experiences of return to school for parents (7) and clinicians and educators (21). One included six studies and a total of 106 parents of CYP with mild, moderate and severe ABI (2-20yrs old), 0-11 year's post-injury (7). Another included 10 studies with a total of 27 CYP, 45 parents/guardians, 55 education professionals and 33 clinicians participating (21). There was no overlap of studies between the two reviews and each study's quality was assessed. Both reviews presented strong themes of the need for effective information, communication and collaboration between the child, parents and health and education professionals.
Manning et al's (4) systematic review of the long-term psychosocial impact reported by childhood critical illness survivors included three studies and a total of 51 participants which included CYP with ABI. A number of outstanding and ongoing needs (met and unmet) were identified regarding support (information, emotional, social and overall wellbeing) highlighting the need for long-term psycho-social support.

Expert reviews/recommendations
Two papers were identified which presented a review of the needs of CYP with TBI and ABI along with recommendations for intervention and service provision. The first presents a review of the pertinent issues regarding paediatric TBI (23). The common needs of CYP with TBI and their families (information, parent and family emotional support, school liaison difficulties, persistent physical, cognitive and behavioural difficulties) are presented whilst emphasising the bespoke needs of each CYP and family and the need for individualised support. Long-term support, training and collaborative working between the family and professionals are recommended as critical to ensuring the long-term success of this population. Practice recommendations for service provision for CYP with ABI are also provided by international group of professionals from the International Paediatric Brain Injury Society (22). They advocate long-term holistic family-centred support, the need to raise awareness of the needs of the CYP with ABI, provide education to all involved in their care and for greater collaboration across the care pathway to ensure coordinated and effective provision of services (22).

Research studies
A variety of research designs were used within the 22 original research studies included, representing level two and three evidence, the most common data collection method being interviews (Table 4).

Themes
Four themes emerged from the analysis, CYP-related impairment needs, support needs, and return to school and long-term aftercare. Identified needs were also mapped onto the International Classification of Functioning, Disability and Health (ICF) constructs to reflect evidence gaps ( Figure 2) (40).

CYP-related impairment needs
Significant needs were reported relating to ongoing physical, cognitive, psychological, emotional, behavioural, and social impairments that transcended and varied across the age spectrum.
Younger CYP (3)(4)(5)(6)(7) year olds) were found to have significant long-term behavioural needs with parents reporting unmet needs in relation to managing these (30). The specific needs of CYP in adolescence, defined as a specific and important development stage between the ages of 10 and 19 (41) are identified in three studies.
Adolescents, their parents and service providers reported needs in relation to facilitating activity and participation and managing limitations and restrictions in activities of daily living, return to school and physical activities and psychosocial functioning (17,37,38). In two studies, CYP with TBI and CYP critical care survivors (including CYP with ABI) identified 'longing for everydayness' and needing support to work towards being 'normal' including physical rehabilitation and social support to access and engage with peers (4,33). Unmet needs were reported by parents of CYP with ABI in relation to CYP medical and social needs (39) and CYP communication, emotional, social and overall wellbeing, reported by CYP themselves as well as parents (31).
Consistently, the need for long-term surveillance, ongoing monitoring and intervention is recommended as CYP-related impairment needs may change as different challenges present at each developmental stage particularly as they reach adolescence and transition into adulthood (17,30,31).

Support needs
Parents of CYP with ABI experience substantial caregiver burden and this is amplified when there is the parental perception of unmet health care needs (6). Parents and CYP have high needs for information and emotional support from professionals across the care trajectory, with many parents reporting a lack of support and unmet needs in this area (10,11,17,24,28,29,31,34).
The need for bespoke information and support for adolescents and their parents was identified in two studies focusing on the needs of adolescents with mild TBI by the adolescents themselves, their parents and service providers (17,38). This was also highlighted by Jones et al (18) and relates to adolescents' developmental stage, the need to be recognised as an individual, to be involved and in control.
Several studies highlighted the importance of recognising the impact of the ABI on the whole family and that family and sibling support represented a significant unmet need (4,28,36). Roscigno and Swanson (34) describe parents 'grappling' to get what their child and family needs and a fruitless search for community and parental and CYP peer support. Social support and engagement with peers are important for CYP and families as they adjust to life post-ABI but they need help to facilitate this (31,33). The need for support and guidance from one key professional was highlighted in a study of the experience of CYP with brain tumours and their parents (36). The importance of effective communication and the key worker role to coordinate information and support to CYP and parents was also recommended in two other studies (10,29) and in the practice recommendations (22).

Return to school
Five studies specifically investigated return to school experiences for CYP with ABI/TBI, their parents, education and healthcare professionals (25-27, 32, 35).
Parents describe the need for educational support for CYP with ABI, effective communication, information sharing, training and collaboration between the school, family and healthcare professionals (25)(26)(27)35). Roscigno et al (35) describe parents needing to negotiate with schools to get the help their CYP needed and that where there was coordinated collaboration this lessened their workload. Teachers reported the need for healthcare professionals to provide schools with information about brain injury and the long-term consequences and for collaboration with healthcare professionals in planning and implementing effective returns to school (27,32).

Long-term aftercare
Several studies describe unmet needs in aftercare and follow-up of CYP with ABI (10,11,19,20,24,28,31,36,39). Whilst one study of CYP with brain tumours reported that parents were generally aware of the long-term sequelae but lacked knowledge of services available (24), other studies reported unmet or unrecognised health care needs across the care trajectory from discharge home through to 12 years post-injury (10,11,19,20). Given the widely reported long-term and developing needs of CYP with ABI, specialist follow-up, particularly at key transition points (e.g. after discharge home, school transitions) is recommended to ensure needs are identified and addressed in an appropriate manner through timely and repeated screening (19,20,24,31). A range of mechanisms to support coordination, communication and collaborative and creative partnerships between all stakeholders are advocatedintegrated care pathways, holistic family-centred care models, protocols, key working, case management (10,19,28,31,36,39).

Discussion
This scoping review has identified extensive needs of CYP with ABI and their families, many of which are often unmet or unrecognised by those supporting the CYP across the care trajectory.
The lack of awareness and understanding of the long-term consequences of an ABI for CYP and their families reported in the evidence ultimately underpins all the reported needs, met, unmet or unrecognised. As is recommended in the majority of the articles, there is a desperate need for increased awareness of the needs of this population across health, education and social care services in order that needs are recognised and addressed in a timely and appropriate manner. There is general agreement throughout the identified articles that specialist follow-up and integrated care pathways are required to ensure all CYP have access to services to support them and their families to optimise their recovery, address needs as they arise throughout their development and realise their potential.
The voice of CYP with ABI themselves is limited within the identified studies. Perceived needs are personal and while it is important for parents to report their perceived needs of their CYP, it should be questioned as to whether this truly reflects the needs of CYP themselves. Parents and families also have specific needs relating to their ability to support their CYP and the impact that the ABI has had on them themselves as individuals. Whilst there are several studies including parents' voices, there is little evidence investigating the impact on siblings. Research including the voice of CYP is scant, however there is increased focus and recognition of the importance of their voices being heard and represented within research. Whilst this poses ethical and methodological challenges, it is vital to include them in future research so that their perspective and needs are reported (18,42,43).
As reported in the literature, teachers and healthcare professionals involved in the care of CYP with ABI also have needs in terms of supporting CYP effectively as they return to school and reintegrate into the community. Education is required to support them to assist CYP during the transition process and in the long-term, particularly to identify new or emerging needs that may become apparent years after the injury occurred. Including all members of the multi-disciplinary team across health, care and education sectors in future research is imperative when considering the holistic needs of the CYP and those supporting them.
Mapping the needs onto the ICF demonstrates the large focus on impairments (body structure and function), environmental factors and return to school (activity and participation). There is minimal focus on personal factors, such as psychological and emotional support needs of CYP themselves and out of school activity and participation, including other aspects of community life, such as clubs, hobbies and sports. These gaps warrant further investigation. Research has shown that community participation in CYP with ABI is reduced compared to their peers, however, needs relating to this were not the focus of studies identified in this scoping review (43)(44)(45).
Future work should consider using the ICF as a framework and incorporate the voice of CYP themselves to ensure comprehensive investigation of the holistic needs of CYP with ABI and their families (46). This scoping review has identified evidence regarding the range of needs of this population from studies conducted using a variety of research methods. Whilst three systematic reviews and the scoping review identified represent higher levels of evidence relating to the range of needs of CYP with ABI, they do not give a sense of proportion in terms of the numbers affected. No level one evidence of populationbased assessments of prevalence of need or service availability, cost or use were identified representing an evidence gap. A mixed methods systematic review of the available evidence is required to develop actionable findings that can inform further research, policy and practice as well as population-based studies of the prevalence of need and service availability and use (47).

Strengths and limitations
This scoping review was systematically conducted using a recognised methodology (16). Extensive searches of the databases were conducted and a broad range of literature was identified and screened by multiple reviewers to minimise bias. The search strategy and methods employed for data extraction and synthesis have been transparently reported.
Some limitations do exist. Defining need is complex and as such, it is possible that the broad search strategy did not identify all relevant articles using the search terms and key words identified. It is possible that evidence of prevalence of need related to outcomes, problems or extent of unmet need may have been excluded through not including studies describing functional or health status related outcomes, experiences or service provision. Grey literature was included in the search and several opinion pieces, policies and guidelines were identified but did not meet the eligibility criteria for this scoping review as did not discuss need specifically. Studies reported in languages other than English were also excluded, leading to ethnocentricity of the findings. Advice was sought from an information specialist regarding the search strategy and every attempt to identify all relevant articles was made using an iterative process, as recommended in the JBI methodology (16).

Implications for practice and future research
The aim of this scoping review was to identify the extent of the evidence, therefore the quality of the articles was not assessed. Whilst a systematic review of the evidence is required in order to inform practice and future research, this scoping review does provide an insight into the evidence regarding the range of needs of CYP with ABI and their families for clinicians. This is important in raising awareness and identifying future research directions. Only five of the studies include relatively small UK samples and none studying the CYP with ABI population as a whole meaning there is no evidence of prevalence of need within the UK. There is a need for services to evaluate the provision to CYP with ABI in their area and investigate the needs and unmet needs of the population to inform the development of services to meet national service specifications and guidelines as well as the local needs of their specified population.

Conflicts of Interest
The authors declare no conflicts of interest.
Design Service in the East Midlands for their assistance in developing the search strategy and Katie Powers for assisting in the screening process.    Childrelated impairments Support Figure 2: Identified needs mapped onto ICF