Experiences of individuals with acquired brain injury and their families interacting with community services: a systematic scoping review

Abstract

Purpose

This scoping review aims to (1) synthesise the research findings on the experiences of individuals with acquired brain injuries, and their families, when interacting with, or accessing, community-based services and (2) identify where gaps in service provision may exist and their cause.

Methods

A systematic search strategy was employed across multiple databases to identify all studies relating to the experiences of individuals with acquired brain injuries and their families when interacting with, or accessing, community-based services. Inclusion was assessed by at least two reviewers at each stage and data extraction was completed by one researcher and validity checked by another. A narrative synthesis was employed.

Results

A total of 101 papers met the inclusion criteria with the narrative synthesis identifying three main themes of (1) unmet needs, (2) types of access, and (3) barriers to access.

Conclusions

The results identify that those with acquired brain injuries, and their families, experience significant difficulties interacting with community-based services and often do not receive appropriate access. Many barriers to access were identified including a lack of knowledge of the long-term effects of acquired brain injury amongst professionals working in health and social care services.

Implications for rehabilitation

• Brain injury is a leading cause of disability worldwide with a range of physical, cognitive, emotional, and behavioural difficulties.

• It is important that service users and families are given appropriate information about the long-term difficulties associated with ABI so they are better informed about the types of support they may need upon discharge from hospital.

• Rehabilitation professionals need to ensure they have good level of knowledge of the difficulties associated with ABI to ensure appropriate access to services for individuals and their families.

• Understanding more about unmet needs allows community rehabilitation services to be tailored and person-centred.

Keywords:

• Acquired brain injury
• unmet needs
• scoping review
• rehabilitation
• community
• long-term care

Introduction

Acquired brain injury (ABI), an alteration to brain function occurring as result of a wide range of illnesses or injuries during or after birth, affects approximately 350 000 people in the UK every year [1]. ABIs have a range of causes including traumatic brain injury (TBI; road traffic accidents, falls, and assaults), as well as strokes, tumours, or infections [1]. Symptoms of ABI include: physical symptoms, such as mobility issues, speech difficulties, sensory impairment, and fatigue [2,3]; cognitive problems, such as language loss, and impairments in attention, concentration, and memory [4,5]; behavioural problems, such as irritability, aggression, obsessive behaviour, and impulsivity [6,7]; and emotional difficulties including mood swings, anxiety and depression, and wider personality changes [6].

For those with moderate to severe injuries, the hospital rehabilitation process can be long with individuals with ABI often experiencing months in hospital. Whilst hospital rehabilitation is often highly regarded in the UK, wider research has indicated that family support and wider signposting to services during this time can be limited [8–10]. Further difficulties present at the point of discharge where service users regularly report feeling “abandoned” and unsupported in their long-term community rehabilitation and integration [11,12].

Within stroke care, hospitals in the UK have increasingly moved to the model of “Early Supported Discharge” (ESD), where individuals with ABI can be discharged earlier from hospital and receive their rehabilitation at home. This step helps to bridge the inevitable gap that exists on hospital discharge by providing rehabilitation that incorporates elements of social adjustment within service users’ homes [13]. Yet gaps remain; whilst ESD can provide initial rehabilitation support, the long-term needs of individuals with ABI, and their families, are outside the remit of the ESD teams. This is due to the time-limited nature of ESD that is designed to provide short but intensive rehabilitation immediately post-discharge. Longer-term needs may include access to care packages often funded through social care, speech and language therapy (SALT), occupational therapy (OT), neurorehabilitation, community mental health, supported housing, vocational rehabilitation (VR), welfare, and educational support [8]. These long-term rehabilitation needs often remain unmet [9,12].

The long-term social consequences of ABI have been well documented [8]. For example, a previous systematic review suggested that only 40% of those who have sustained a moderate or severe ABI returned to work after two years [14], suggesting much greater support is needed in employment rehabilitation. The same is also true for those trying to return to education, with children with ABI often struggling to engage effectively with school post-injury [15].

The literature also highlights that individuals with ABI are at an increased risk of developing, or already experiencing, a range of difficulties in areas such as mental health [16] and substance abuse [17]. Moreover, individuals with ABI are far more likely to experience suicidal ideation and to take their own lives [18,19].

Individuals with ABI are highly represented within the homeless [20] and prison populations [21]. This suggests that a significant proportion of those with ABI are experiencing difficulties with community reintegration post-injury. This may be as a direct result of their cognitive, emotional, and behavioural neurological difficulties. For example, an inability to plan financially may result in homelessness, as might an inability to abide by the rules of a tenancy agreement [22,23]. Alternatively, difficulties with approach behaviour in relation to aggressive acts may lead individuals to end up within prisons or probation for committing violent crimes [24].

Whilst the body of literature identifying both the psychological and social consequences of ABI is growing, there is still limited literature that examines the experiences of individuals with ABI and their families when interacting with, or attempting to access, community rehabilitation and integration services. A recent systematic review of persons with stroke and their families’ experiences of community-based and primary healthcare services emphasised the sense of abandonment experienced by individuals [25]. The review highlighted the need for increased information and service provision within the community setting. Whilst this review provides a comprehensive analysis of the stroke literature, it does not contain information about the experiences of other individuals with acquired brain injuries. Stroke and other brain injuries, such as TBI are often treated within differing care pathways, so it is important to examine the experiences across the range of conditions.

The overall aim of this scoping review was to catalogue and synthesise research findings that investigate the experiences of individuals with ABI and their families whilst interacting with services associated with long-term rehabilitation and support following brain injury. A secondary aim of the review was to identify any possible gaps in services and their possible cause. This systematic scoping review will analyse the literature to present the best available evidence related to the experiences of individuals with ABI and their families when interacting with community rehabilitation services. This will include gathering evidence from papers that also report service user and family experiences from the perspective of professionals within those fields.

In particular, the objectives are to:

• Document the experiences of individuals with ABI and their families when interacting with community rehabilitation and integration services.

• Document the evidence to suggest that individuals with ABI often do not receive access to community rehabilitation and integration services, and

• Assess the evidence for gaps in service provision and the reasons why these gaps may exist.

Methods

This systematic scoping review followed Arksey and O'Malley’s [26] methodological framework. The authors identified a clearly defined research question, identified relevant studies using a search strategy, selected relevant studies using inclusion and exclusion criterion, underwent a process of data extraction from the relevant papers and then collated these in the current paper. The details of each of these five stages are outlined below. A protocol was developed for this review in August 2015 but has not been formally registered.

Search strategy

The search aimed to identify all studies relating to the experiences of individuals with ABI and their families when interacting with, or accessing, services associated with community rehabilitation or integration for children and adults with ABI. An extensive search strategy was used to search seven databases: Web of Science, MEDLINE, EMBASE, AMED, PSYCHINFO, and SOCIAL CARE ONLINE. Searches were conducted approximately every six months from May 2016. The search was last updated on 18 December 2020. No language restrictions were applied. In addition, reference lists of included papers were searched. Search criteria were adapted to suit the search terms of each individual database, but generic search terms can be found in Appendix A. Each search term was inputted into each database in turn. Section one of the search terms focused on extracting papers addressing issues related to brain injury. Section two of the searches focused on extracting papers on services. Using the “OR” functions, all searches on “brain injury” and all searches on “services” were pooled and then the “AND” function was used to combine the two searches and then an age filter was applied (Appendix A).

Inclusion criteria

• For papers to be included within the review, they had to have been published since 2005. This restriction was set to ensure that all papers reflected current service provision.

• Papers had to be primary research papers rather than reviews. Only peer-reviewed journal articles were included.

• Papers that included individuals with ABI, their families, or professionals involved in services to support those with ABI long-term were eligible for inclusion.

• All study designs were included in the review, including both qualitative and quantitative literature and case studies as long as they contained a qualitative or quantitative measure of the experiences of either service users with brain injuries or their families when accessing services or measure the difficulties they experienced when accessing services. Service provision was categorised broadly and included any services within the following categories: physical rehabilitation (including physiotherapy, SALT, and OT), standard health care (including general practitioner (GP) services, emergency care, and other hospital care), mental health, substance abuse, housing and homelessness, social care (both adult and child services), decision-making/capacity and advocacy, police, probation, judicial process, legal representation and prisons (including youth offending), welfare services, disability services, learning support, home care services, and education, employment and leisure activities.

• Papers had to be available in English, French, or Italian (the languages spoken by the authors) but could be based in any country worldwide.

Exclusion criteria

• Any articles that specifically focused on older-adult stroke patients were excluded (those over the age of 65 years). Papers that included some participants under 65 years and some over were still included.

• Interventions or efficacy papers were not included in this review unless they were evaluating current service provision and included information about the experiences of service users and their families as well as efficacy data.

• Any papers not written in English, French, or Italian.

Data collection

The initial screening took the form of title and abstract review whereby at least two reviewers from a team of 19 reviewers in total, independently scanned titles and abstracts for possible inclusion. The reviewers were instructed to keep any papers that may meet the inclusion criteria and any papers where there was insufficient information to decide. Search screening took place over six different time points with different reviewers responsible for screening at each stage.

No inter-rater agreement was recorded during this stage. All initial disagreements were referred to the first author, who was responsible for setting the inclusion and exclusion criteria, to decide on inclusion at this stage. Full text papers of any possible inclusions or papers that required further investigation were then obtained. These were then assessed using the inclusion criteria independently by two reviewers from a team of four individuals. Disagreements were resolved through discussion or referral to a third reviewer (the first author). Inter-rater agreement at this stage was 82%.

Data extraction

The following details were recorded (where possible) from included studies:

• Author, publication year;

• Population characteristics: participant information (numbers, population, length of ABI);

• Complex need studied (type of difficulty, nature of problem, etc.);

• Main findings: experiences of ABI survivor, their family or professionals working with ABI, nature of difficulties with services;

• Recommendations for practice/authors conclusions.

Data synthesis

It was anticipated that the included studies would vary greatly in terms of study design or quality. Therefore, a narrative synthesis approach was implemented [27]. The focus of the narrative synthesis was on understanding the experiences of individuals with ABI and their families when interacting with various services, and the experiences of professionals working within those services. This was performed with a view to producing a list of recommendations for future service provision in this area.

The process of synthesis followed the guidelines developed by Popay et al. [28] for narrative synthesis. The process began by extracting the data from each individual paper as outlined above. The reviewers highlighted sections of relevant text that outlined the characteristics of the participants in the reported study, which services they were interacting with, the types of support need they had and what the ultimate outcome of the interaction had been. They also highlighted any recommendations or conclusions pertaining to these variables. These textual descriptions of the data were then summarised in a data extraction table across all papers and verified by a second reviewer. This allowed a preliminary synthesis to be conducted by looking at lists of the services, types of support needs and the interactions between services and individuals and their families.

Stage 3 of Popay et al.’s [28] approach was then followed by exploring the relationships between those reported elements to identify what the experiences of service users were and how and why problems arose in the interactions. This included looking at the variability in outcomes and study designs as well as study populations to understand where differences in findings may be present. This clustering of the data allowed the development of a narrative structure for the findings. The number of positive and negative interactions were then recorded, along with sample sizes from each paper to provide a measure of robustness.

Due to the large number of papers included in the review and the focus being on understanding the literature rather than drawing firm conclusions, a formal risk of bias assessment was not completed. The final stage of the narrative synthesis was to study the clusters of data to identify key themes across the studies using a process of thematic analysis [29]. This thematic analysis was then verified by the research team. The narrative was then applied in the report by outlining how each theme played out in different ways across a selection of specific studies.

The process outlined above was applied to both qualitative and quantitative papers. Whilst quantitative data were tabulated during analysis, the authors focused on the narrative synthesis across all studies and did not synthesise the quantitative data in this paper. Narrative synthesis is not only used to synthesise qualitative papers but also used to synthesise data from quantitative papers that are heterogeneous in nature (e.g., vary in terms of study design, number of participations, populations, and across settings) [27].

Results

Of 34 492 studies identified in the initial search of articles (28 873 after the removal of duplicates), reading of the titles and abstracts led to a list of 292 potentially relevant references that were assessed for eligibility. Of these, 191 papers were excluded based on: not reporting appropriate outcomes (154 studies), not being primary research (30 studies), and presenting data prior to 2005 (seven studies). As a result of the screening process, 101 articles met the inclusion criteria: 65 included qualitative data, and 47 included quantitative data (some papers contained mixed methodologies). Figure 1 illustrates the flow chart of the review procedure. All included studies are noted in the reference list with an asterisk.

Figure 1. Flowchart of the systematic review.

The 101 included papers revealed the following three main themes: (1) unmet needs, (2) types of access, and (3) barriers to access.

Theme 1: unmet needs

An overview of the unmet needs of people with brain injuries and their caregivers, identified in this review, is given in Table 1. In summary, papers reported a need for information provision, ABI-specific education and adequate ABI-specific personalised services that involved families and service users. These unmet needs led to difficulties for individuals with ABI and their families in managing symptoms, particularly around fatigue, pain, and behavioural and emotional difficulties. Evidence for these unmet needs was supported by papers focusing on health professionals’ perspectives of unmet needs [30–32]. Specific unmet needs were highlighted around return to pre-injury functioning (e.g., return to work (RTW), or education), reengaging in the community and social environment, and family involvement in decision-making. It should be noted that not all papers reported unmet needs [33].

Table 1. Major unmet needs identified in included studies.

Unmet needs
Support unmet needs (by professionals/healthcare services)^a	Health unmet needs	Living and leisure/work unmet needs
Need of information (16^b)	Fatigue management (7)	Independent living (8)
Need of education about ABI (11)	Pain (3)	Return to school (3)
Need of involvement in care (11) (transition/discharge planning)	Emotional/Mental health (27) (depression, anxiety, personality change, coping, grief)	Return to work (10)
Need of service provision (14)	Behavioural management (3)	OT (3)
Need of support services (26)	Marriage guidance (2)	Returning to social/leisure activities (15)
Need of person-centre care plans (13)	Memory (3)	Welfare support (8)
Need of adequate rehab services (8) (community rehabilitation)	Mobility (6)	Housing/home adaptations (5)
	Acute ABI care/inpatient rehabilitation (3)

^a Some studies contained more than one unmet need.

^b Numbers represent the frequency of studies reporting each issue.

Information needs were highlighted in the study by Kamalakannan et al. [34] where persons with stroke and carers stated that they received lack of information about the availability of stroke rehabilitation services post-discharge during the discharge process (see also Perry et al. [35]). Similar findings emerged in Martinsen et al.’s [36] study on the experiences of young and midlife individuals with stroke who reported difficulties in accessing health services and obtaining support. This limited their opportunities to address questions about their own life post-stroke, talk about their individual needs and health-related concerns. All these factors led to experiences of being “left in the lurch”. Connolly and Mahoney’s [37] findings suggest that the need for individuals following stroke to receive detailed and adequate information about stroke symptoms, especially fatigue, is crucial to reduce anxiety and uncertainty. These findings from the stroke papers can be generalised more broadly to all persons after ABI, with a need to provide clear and detailed information about brain injury symptoms and impact on daily activities. For example, Degeneffe and Bursnall [38] reported participants’ descriptions of the system-level response to TBI as “inadequate”. They also stated that many professionals lacked the skills and understanding to provide effective services and did not provide enough information.

It is widely accepted that rehabilitation should be planned on an individual basis, taking account of the patient’s specific needs, goals, and pre-morbid lifestyle [39]. Individuals with ABI and their families should be offered appropriate information at every stage and be involved as actively as possible in decisions regarding their care [40–43]. Moreover, families should be included in all decision-making processes where they are able and wish to be [9,30,44–46]. Other studies mentioned the need for patient-centred care plans [43–48] and access to adequate community rehabilitation services [36,45–51].

For example, Tverdal et al. [51] found that one-third of the patients in their study were not involved in the discharge process and the quality of information transferred from the trauma hospital about what to expect after discharge was insufficient. In addition, many participants did not experience a patient-centred approach and involvement in healthcare decision-making during care transitions. Similarly, Aadal et al. [48] and others have observed gaps between services and patients’ rehabilitation needs at discharge from hospital, the absence of specific highly specialised rehabilitation services (“Everybody is working on everything”) and a lack of collaboration between professionals due to missing individual rehabilitation plans or a lack of personal coordinators [9,22,30,45–53]. In Martinsen et al.’s [36] work, individuals with stroke expressed the need for receiving follow-up programs tailored to their specific needs as young and midlife individuals with stroke. However, just one of the 16 service users had an individual plan.

After a brain injury an individual can experience several types of psychological issues, such as anxiety, depression, personality change, and anger [52,54]. The physical, cognitive, emotional, and behavioural consequences of ABI can be very challenging for caregivers. Thus, both those with brain injury and caregivers may require professional psychological support to deal with emotional and behavioural challenges [52]. The emotional and mental health needs of patients and caregivers were not addressed in a total of 27 papers. One individual with stroke interviewed by Martinsen et al. [36] mentioned that the “…health services paid attention to her physical condition but not to her psychological well-being, which resulted in despair. She missed a professional who could listen to her, help her express her problems, and find solutions to persevere.”

Caregivers involved in Kitter and Sharman’s study [53] cited that the behavioural disturbances accompanying ABI had a tremendous effect on their day-to-day lives as well as placing psychological stress on them due to the demands of the role. Despite that, they did not receive support to cope with the behavioural disturbances or with the emotional changes. They also pointed out the need to receive education for themselves and their social network, the need to access employment opportunities and social support.

Fatigue management, pain and independent living came up as unmet needs in 16 studies [9,22,30,37,38,45,46,49,53–60], as well as welfare [9,22,34,45,46,57,59,60], support/housing [9,22,55,59,61], social inclusion [9,22,30,38,42,45,46,49,56,57,62–66], community rehabilitation [9,22,30,36,45,46,52,65–69], and family support [9,30,49,67–72] needs. For example, in Krishnan et al.’s [43] study both persons with stroke and caregivers expressed the need to increase individuals’ independence and decrease the burden on caregiving. Patients mentioned the need to be able to walk, to drive, and to use public transportation. However, as the authors reported, rehabilitation professionals rarely taught the skills needed to use public transport. There has also been risks highlighted with the use of public transport in the case of individuals with severe cognitive impairments, yet the need for other transport alternatives was often not provided by social care services [9,22].

Pickelsimer et al. [57] found many unrecognised needs in people with TBI one-year post-discharge, including: alcohol and drug support, improving mood and managing stress and emotions, support in finding paid employment (RTW), information about services, care support, increasing independence in housekeeping, cooking or shopping, and social inclusion (finding places and opportunities to socialise with others). McIntyre et al.’s [58] findings showed that people with high care needs experienced difficulties in accessing appropriate housing, essential support services such as rehabilitation and personal assistance, as well as services that promote community and social engagement.

Harrison et al. [62] conducted a qualitative interview study to increase the understanding of the experiences of people with TBI and their caregivers. Results highlighted that most caregivers did not develop trusting relationships with local healthcare providers. Communication between previous inpatient rehabilitation facility professionals and local rural professionals appeared to be minimal and linkages with existing community resources were not facilitated for the transition home. Participants encountered challenges related to transportation, housing, and interference with employment. Other unmet needs persisted in terms of medical problems [72], support for caregivers [71,73–80], community linkages [67,72,81–87], and participation in meaningful activities [88–92], emotional support, financial support, VR [93,94] and educational needs [91]. These effects seemed to be exacerbated in cases where individuals and families come from ethnic backgrounds [83,88,89,94,95].

Theme 2: types of access

The papers within this review discussed the types of services people with ABI and their families attempted to access, whether successfully or unsuccessfully. The barriers to access are specifically discussed in the theme below. Types of access included; mental health provision, OT, neuropsychology, physiotherapy, SALT, educational support, and VR. These can be seen in Table 2.

Table 2. Types of access identified in included studies.

Types of access
General types of services^b	Specific types of services
Trauma-specific acute care (3)^a	Mental health provision (7)
Access to ABI-specific inpatient rehabilitation (3)	Occupational therapy (8)
Access to community-based resources (10)	Neuropsychology, physiotherapy, speech and language therapy (6)
	Educational support (5)
	Vocational rehabilitation (VR) (2)

^a Numbers represent the frequency of studies reporting each issue.

^b Some studies, participants accessed more than one service.

During the rehabilitation process, service users may need to access different services to address specific medical, rehabilitation, social, vocational, and educational needs. Unfortunately, these services may not be available, or service users and their families may not be aware of their availability. When services are precluded or insufficient, deeper, and yet unrecognised needs may be unmet. It is important to note that needs are long-term and may change over time. This identifies the need for ongoing service provision and regular assessment of need [9,22,30,45,46].

Individuals with ABI reported improved physical and psychological functioning immediately after completing community rehabilitation. Immediate care was found to improve long-term functioning and be more beneficial in recovery then later introduced care [89].

Social and community integration services were highlighted as important in several studies [9,45,46,54]. For example, participants in Adams and Dahdah’s study [54] expressed the need for both caregivers and individuals with TBI to be involved in a local support group as sharing their experience with others that were going through the same issues could offer suggestions and resources. This was also seen as a form of emotional and mental health support.

Return to work services are particularly important in ensuring return to pre-injury functioning. Grigorovich et al. [90] conducted a case study of one community-based agency that provided specialised employment services (ES) to people with brain injuries. Results showed that individuals with brain injuries accessed support on average for 16 years post-injury. Despite 64% of them securing at least one competitive employment outcome (employment success), their job tenure was short (average of 368 days) and job intensity was mostly low (average 3.8 h/day). Other studies have also identified that many individuals who “return to work” do not necessarily go back to their pre-injury job with many returning to jobs with lower pay, less hours and involving unskilled work [96,97].

Job development, job coaching, case management, and job retention services were identified as the most efficacious services to guarantee employment success [90]. Interviews revealed that people with brain injuries were provided a tailored combination of ES including job goal identification, assessment of work-related abilities/skills, job development, on the job support and job retention assistance.

A study by Davis et al.’s [98], highlighted the efficacy of resource facilitation services in identifying referral needs for people with brain injury who wish to RTW, as well as facilitating access to available state VR services. Case coordinators’ (CCs) contribution was crucial to increase the awareness of the availability of these kinds of services amongst participants, to assist them during the application process, and to facilitate communication between clients and their VR counsellors. Furthermore, once accepted for services, CCs made sure that participants’ needs were met and that they followed up with recommendations made by the counsellors.

Theme 3: barriers to access

In this review, 77 of the included papers recognised several barriers that could prevent gaining access to services. The major barriers identified in this review are reported in Table 3 in two distinct groups (factors associated with service users and families, and factors associated with professionals).

Table 3. Synthesis of the major barriers to access services identified in the review.

Barriers to services
Brain injury service users and caregivers^b	Healthcare professionals/services
Transportation (8)^a	Lack of specialist knowledge (18); Health professionals (13), non-health professionals^c (14)
Finance (7)
Lack of insight (6)
Cognitive impairment and emotional difficulties (6)	Poor training (6)
Lack of awareness (6)	Lack of awareness (8)
Poor referral/signposting (5)	Poor communication (9)
	Poor referral/signposting (9)
	Poor organisational structures and processes (19)
	Lack of services (18)
	Lack of person-centred care (10)

^a Numbers represent the frequency of studies reporting each issue.

^b Studies often reported more than one barrier to services.

^c Non-medical professionals included police, care workers, educators, and employers.

The lack of specialist knowledge and poor training amongst professionals, were reported as barriers to accessing adequate rehabilitation and care services in 21 studies [9,22,30,45,46,59,60,63,65–69,95,98–104]. For example, O'Rourke et al. [99] explored the knowledge about TBI and the prevalence of misconceptions amongst members of the probation services. The authors identified clear gaps in knowledge amongst members of the probation service regarding brain injury. Additionally, Glang et al. [105,106] found that the lack of knowledge, training and awareness amongst educators, parents, and community about TBI, are responsible for the gap between incidence of childhood TBI and identification of students with TBI receiving special education services. Furthermore, educators often lack awareness that a student with a TBI, even a mild TBI (or concussion) might have needs, especially if no physical signs of injury were apparent. All these barriers can lead to a misidentification of students whose needs may not be recognised and met.

A lack of awareness of ABI, alongside a lack of advocacy and case management emerged as service barriers in many other studies [107,108], including in Pickelsimer et al.’s [57] study as well as transportation problems, lack of financial resources, health and medical problems and, service inflexibility. Participants were unaware of the availability of services or where to go for receiving assistance. The transportation problems, the limited financial resources and lack of advocacy and case management precluded seeking and/or accessing services that were needed.

Clearly, the barriers to services described above can negatively impact the interactions between individuals with brain injury, their carers/family members, and healthcare providers. For example, in Degeneffe and Bursnall’s study [38] the lack of empathy, the lack of respect and continuity of care led to poor interactions with social workers, healthcare, and social care professionals. These findings were also demonstrated in other studies [9,22,30,45,46,59,60,70,71,96,97,99,105,106,109–112].

Other barriers included: inability to get appointments due to a lack of service provision or poor staffing [112], difficulties attending appointments due to caring responsibilities [113], a lack of communication around care plans, transitions and discharge planning [114] and a lack of financial management services [75,115].

It is important to note that positive feedback on interactions between patients and healthcare providers were highlighted within some of the papers included in this review [e.g., 34,36,48,54,64,72,116]. In most of these studies, the factors that contributed to the development of positive relationships with healthcare professionals included good/proactive communication, the sharing of information across service providers, empathy and readiness showed by the medical staff in accommodating patients and caregivers’ needs, and a good understanding of ABI amongst staff.

Barriers to services varied depending on the type of service individuals and their families were attempting to access. For example, whilst generally physical rehabilitation services were highly thought of by both families and service users, issues with access were present in the community setting [116]. This was often associated with poor transportation to allow access to community services [117,118] or a lack of specialist community service provision [117,118].

More significant issues were identified when accessing mental health services where lack of services and poor understanding of brain injury exacerbated barriers associated with poor transportation [9,22,119]. Limited access was available to mental health services for caregivers due to a lack of service provision [120]. A similar picture was found for social and community integration services with support for returning to functional leisure activities, support with relationships and access to support groups lacking due to poor staffing, poor referral, a lack of knowledge of existing services and a lack of professional awareness of the needs of those with ABI and their families [22,30,45,46,60,120–125].

A final area with multiple barriers to access was RTW services. In a study by Mansfield et al. [117], the major reported obstacle to RTW following work-related mild TBI was poor understanding and knowledge of TBI (especially of the persistent physical, cognitive, and psychosocial impairments) amongst employers and colleagues. For instance, four participants stated that their employers did not consider a brain injury as a serious incident, underestimating the impact of TBI’s sequelae. In addition, in most of the cases no adaptations or changes were made in the workplace environment which was described by some participants as unsupportive and unsafe. Indeed, three participants were re-injured on the job upon RTW. Bush et al. [63] reached the conclusion that individualised job modifications and strategies are necessary for adults with TBI to succeed vocationally.

Other barriers identified include a lack of suitable jobs and hiring incentives, and difficulties in establishing support in the workplace [109,119,120]. Davis et al. [98] identified a range of barriers to RTW including; unawareness of the availability of the services, difficulties in completing the multi-step process to receive access to services experienced by individuals with ABI and caregivers (e.g., contacting the appropriate services, obtaining information about the application requirements, completing the application process, etc.), and difficulties in communication between clients and VR counsellors to ensure that their needs were met. Additional issues were associated with the cognitive and emotional difficulties of persons with TBI, lack of understanding of VR service procedures and requirements, budgetary and staff restrictions within organisations, financial limitations, transportation difficulties, and lack of family support [107,126,127].

Discussion

The overall purpose of this review was to examine the literature on the experiences of individuals with ABI and their families during the interaction with services associated with long-term rehabilitation following brain injury. We particularly focused on the interactions amongst people with brain injury, their caregivers and community rehabilitation services to document the existence of difficulties in interacting with these kinds of services, as well as difficulties in accessing community rehabilitation services. The secondary aim was to highlight any gaps in service provision and their possible causes. The analysis of the literature revealed three major themes: unmet needs, types of access, and barriers to access. These themes identified that whilst there was evidence of good interactions, individuals with ABI and their families had significant difficulties interacting with community services and often did not receive appropriate access. The findings also identified that, in part, a lack of knowledge of the long-term consequences of ABI amongst professionals served as a barrier to accessing services.

It is evident from the review that there is a high prevalence of unmet needs amongst individuals with ABI, carers, and family members. These unmet needs were related to support services, health, return to community, and pre-injury functioning [9,22,30,37,48,49,54,57,65–67,96,97,128]. These were further exacerbated for those from ethnic minority backgrounds and with marginalised vulnerable status who have more unmet needs due to less access to services. The need for information provision was one of the most reported from the included papers [9,22,30,34,37,41,48,49,57,65,66,68] as well as the need for receiving specific education about ABI and ABI-related services [9,22,30,37,39,48,49,57,69,70,87,88,96].

The review highlighted the need for emotional support for both persons with ABI and their families, and the need for help to manage the long-term consequences of ABI such as fatigue, pain, emotional, and behavioural changes [9,30,36,41,47,49,51–53,64,99]. Moreover, from our analysis, specific needs related to pre-injury functioning, like, return-to-work or education and returning to the community and previous social/leisure activities came out as frequently unmet [9,22,37,46,49,53–55,60,63,83].

Certainly, the extent to which service users’ and caregivers’ needs are met is reliant upon availability and accessibility of relevant services. Unfortunately, in all papers, it emerged that the unmet needs are largely caused by a lack of service provision [9,30,34,47,49,51,57,65–68,87–89,98,99]. This may be a lack of services, a lack of ABI-specific services, or a lack of referral to services. The last of these was associated with a lack of knowledge amongst professionals [9,22,30,37,48,49,57,59,60,63,87–90]. Overall, support and community rehabilitation services appeared limited, fragmented, and often difficult to access.

The papers paint a clear picture of a lack of specific services for individuals with ABI and their families across all countries represented in the review. Where services did exist, these were often inappropriate and/or not ABI-specific so were unable to meet the specific needs of individuals and their families. Furthermore, many studies identified that individuals were often denied access to services due to eligibility criteria that often prevented those with ABI from seeking support [9]. This was exacerbated by individuals with ABI and their carers often being unaware of the type of services they needed, what was available, and how to access these services. Poor service referral is associated with poor understanding of ABI amongst professionals, individuals with ABI and carers/families and was associated with issues such as lack of insight and poor information sharing amongst professionals [22,35,48,49,51,57,65,66,96,97]. It was also associated with a poor understanding of need for ABI-specific services amongst service planners which resulted in no services being available [1,8,9,23,30,45].

This review identified many different barriers and issues that might preclude individuals with ABI and their families from accessing and using post-acute services. It is evident from the review that multiple long-term services are needed in the community across a wealth of areas including mental health, psychoeducation, physiotherapy, OT, neuropsychology and community and social integration. Without improved service provision and an appropriate knowledge base amongst professionals to ensure adequate referral, service users, and their families will continue to have these unmet needs [9,22,30,34,37,48,49,59,60,86]. The evidence from this review highlights the importance of resource and service coordination for people with ABI. To ensure that needs are met it is important for individuals to receive appropriate information about their conditions, and information should also be provided to family members to circumvent issues associated with lack of insight. Needs must be assessed appropriately and signposting to services provided. This must also happen alongside advocacy to ensure that individuals with ABI can interact with services in an effective manner that enables access where possible. Outside of statutory care, this process of care coordination and assessment is provided by professional expert case management [129]. This approach provides this integrative service much needed by individuals and their families [107]. Further research is required to identify how this approach could be integrated within a statutory care model.

Strengths and limitations of the review

One of the strengths of this review is that it included a broad search strategy to capture studies from across a wide range of different community services, both rehabilitation-focused and those focused on social integration and welfare support. However, this has led to a large review with many different papers with a wide range of methodologies and varying methodological quality. The review did not assess methodological quality of the papers as the focus was understanding the literature. However, this is a shortcoming as was an inability to perform a more comprehensive meta-synthesis due to the heterogeneous study sample in the review.

A further shortcoming is the number of iterations of the review process that had to be undertaken with different reviewers at each stage. To provide consistency, each new set of reviewers were asked to look at a sub-section of the searches from the previous time-point and these were cross-referenced with those that had been accepted for inclusion to provide training for the reviewers. It is possible, however, that this led to errors in the process.

It is interesting to note that during the various iterations of the searches for this review, the authors identified an increasing number of relevant papers for inclusion. This suggests that the issue of better support within the community for individuals with ABI and their families is becoming a more popular focus for research. It is important now that the information from these papers is used to improve service provision and practice.

Recommendations for practice

This review has highlighted many recommendations for future practice:

1. It is important to increase the accessibility and quality of community-based services to ensure that they can meet the needs of individuals with ABI and their families. There needs to be improved access to services through an increase in funding for such services and better knowledge amongst service planners of this long-term need. This increased funding could be used to increase the number of services available for individuals following ABI and their families to address the need for more provision outlined in this review.

2. It is also important that individuals with ABI and their families receive clear and accessible information about their conditions at every stage of their patient journey to maximise their experience of care. As this is a heterogeneous group of individuals with a wide range of different cognitive, physical, emotional, and behavioural difficulties, it is important that services offer tailored and individualised care approaches that include both the individual and family members in the decision-making process, where appropriate. These approaches would help to improve transitions in care and help to improve discharge into the community. Individualised care is particularly important within this group because they are also widely heterogeneous in terms of their wider characteristics, such as ethnicity, sex, gender, sexual orientation, and socioeconomic status. Whilst there were limited papers that specifically focused on such characteristic [e.g., 83,88,89,94], these do suggest that those from diverse and marginalised groups may be less well-served and less likely to gain access to the limited services that do exist. It is important that clinicians and service providers are mindful of protected characteristics and possible intersectionality of their service users when considering their needs and those of their families.

3. Extensive training for professionals working within specialised and generic services is needed so that they can better understand the impact of ABI long-term and know where to signpost individuals. There are many examples of such training tools and clinical guidance worldwide. Within the UK, organisations such as the Brain Injury Social Work Group (BISWG) have developed training materials for social care professionals [130] and the Brain Injury Rehabilitation Trust has developed a screening tool and a needs analysis to support healthcare professionals in their work with service users and their families [131]. In addition, there are clinical education and training resources have been developed outside of the UK involving thorough ongoing reviews of peer-reviewed published evidence: the Evidence-Based Review of moderate to severe Acquired Brain Injury (ERABI) [132–134] and the Ontario Neurotrauma Foundation supported brain injury clinical practice guidelines [135].

4. An integrated case management approach is required that provides not just short-term coordination of care, but a process that continues long-term to ensure ongoing signposting and linkages to community services, both in the context of rehabilitation, but also social integration.

Acknowledgements

The authors would like to thank the following previous students from the University of Plymouth, School of Psychology for providing support with initial searches: Craig Andrews, Hannah Harris, Connor Ovenstone, Andrew Robbins, Charlotte Stone, and Jade Walsh.

Disclosure statement

The authors report no conflict of interests.

Appendix A.

Search terms

Brain injury search terms

1. Acquired brain injury

2. Traumatic brain injury

3. Head injury

4. Brain injury

5. Brain tumour

6. Stroke

7. Brain haemorrhage

8. Aneurysm

9. Hydrocephalus

10. Encephalitis

11. Hypoxia

12. Anoxic brain injury

13. Road traffic accidents

Service search terms

• 14.  Service needs

• 15.  Speech and language therapy

• 16.  Occupational therapy

• 17.  Physiotherapy

• 18.  Primary health care

• 19.  Emergency health care

• 20.  Acute medical admission

• 21.  Mental health

• 22.  Depression

• 23.  Anxiety

• 24.  Psychosis

• 25.  Recreational drug use

• 26.  Financial services

• 27.  Benefits

• 28.  Welfare

• 29.  Substance abuse

• 30.  Suicide

• 31.  Homelessness

• 32.  Complex needs

• 33.  Social services

• 34.  Adult social care

• 35.  Child social care

• 36.  Vulnerable adults

• 37.  Housing

• 38.  Decision-making

• 39.  Social work

• 40.  Advocacy

• 41.  Probation

• 42.  Prison service

• 43.  Offending

• 44.  Offenders

• 45.  Arrests

• 46.  Legal representation

• 47.  Solicitors

• 48.  Lawyers

• 49.  Barristers

• 50.  Disability

• 51.  Disability services

• 52.  Learning support

• 53.  Home care

• 54.  Police

• 55.  Education

• 56.  Employment

Combing search terms

• 57.  Combined searches 1–13 using OR function

• 58.  Combined searches 14–56 using OR function

• 59.  Combine searches 57 AND 58

• 60.  Search 59 with age filter >18 years