Bridging gaps in care for children with acquired brain injury: Perceptions of medical and educational service providers

1. Introduction

Children who sustain acquired brain injury (ABI), either from traumatic or non-traumatic causes, have learning differences and rehabilitation needs after their injury. Pediatric traumatic brain injury (TBI) is one of the most well-studied forms of ABI, and one of the most common causes of long-term disability that places children at risk for poor outcomes [1, 2, 3]. According to estimates prepared by the Centers for Disease Control (CDC), there are 145,000 children between the ages of 0–19 currently living with long-lasting, significant alterations in social, behavioral, physical, and cognitive functioning following a TBI [4]. There are also an undetermined number of students living with similar effects after sustaining a non-traumatic acquired brain injury, including stroke, anoxia, tumor, neurotoxins, etc. It has been long-known that survivors of pediatric brain tumor experience changes in IQ, specific neurocognitive abilities (e.g., memory, attention, processing speed), and academic challenges caused by a combination of factors including tumor location, radiation, chemotherapy, and neurosurgical complications [5, 6, 7]. Similarly, children and adolescents who incur stroke are at higher risk for focal neurocognitive deficits, neurodevelopmental disorders such as ADHD, and psychosocial difficulties [8, 9, 10].

Given the long-term consequences from brain injury, there is a critical need for long-term services and supports beyond the acute injury. However, post-acute healthcare and educational systems are often ill-equipped to deal with, or unaware of, the needs of children with brain injury. There is a lack of coordination between these two major service systems, leading to gaps in optimal care, which places these children at greater risk for poor long-term outcomes. Only a small number of children with ABI ( ∼ 4%) are admitted for inpatient rehabilitation. Furthermore, only a minority of children receive ongoing therapy services following initial care, with a mere 29% receiving any type of outpatient services regardless of TBI severity [11]. In studies of children who have TBI, Slomine et al. [12] found that during the first year post-injury, a significant number of children had unmet or unrecognized healthcare needs. Keenan et al. [13] identified significant gaps in healthcare for children post-discharge, even in the context of minimal barriers to care. Furthermore, Jones et al. [14] found that during care transitions, children’s and families’ needs were consistently unmet, particularly in regards to the need for information, emotional support, and access to community-based services.

While brain injury is considered a “low incidence” occurrence within most educational systems, it is actually much more common than most people realize. Consequently, many children with brain injury are not properly identified and do not receive the necessary supports and services as they transition back to school after the brain injury. Concerns about whether children who have brain injury receive needed services were identified in a 2014 survey of 42 state special education directors [15]. This survey found that most special education directors perceived a gap between incidences of ABI and identification of students with ABI. This gap was due to lack of brain injury awareness, lack of hospital to school communication, identification of students with ABI in other eligibility categories, underreporting of injuries, and narrow definitions of ABI by schools.

Children with all forms of ABI experience neurocognitive deficits, which are linked to poor classroom functioning and classroom engagement and contribute to poorer long-term outcomes [7, 8, 10, 16, 17]. Medical rehabilitation providers often establish cognitive strategies and learning plans for children who have brain injury. However, the process for applying such plans in schools is often difficult to implement. Further, parents and teachers often lack the knowledge and training to advocate for or provide appropriate brain injury supports and services. Students who have persistent and significant deficits following brain injury need special cognitive strategies to resume their student roles, which may be provided either as 504 accommodations or under a Special Education classification. Learning methods that parallel strategies taught under Cognitive Rehabilitation can often be identified [18]. However, implementation of such specialized strategies becomes more challenging when educators have little understanding about brain injury, or lack specific information about how a child can best learn, making it is less likely that the student will receive specialized educational services to meet their needs [19]. The result may be that the student will struggle initially, and may ultimately be placed in programs designed for children with emotional or behavioral disturbances, or a program designed for life skills training, but without the benefit of individually designed and appropriate cognitive strategies [20]. Additionally, the impact of cognitive impairments which over time can intersect with the normally increasing cognitive demands of higher educational grade-levels may appear as though the student is declining in academic abilities as they get older [21].

As described above, gaps in care and unmet needs of children with brain injury have been consistently documented and have been linked to a lack of awareness, knowledge, and training, along with poor coordination between the healthcare and educational systems of service. However, the reasons why the disconnection between the two systems continue to persist is not well understood. In order to improve awareness, knowledge, and collaboration between these two service systems, the perspectives of those working in each system need to be considered. Therefore, the Pediatric-Adolescent Task Force of the Brain Injury Interdisciplinary Special Interest Group (BI-ISIG) of the American Congress of Rehabilitation Medicine (ACRM) undertook a survey to better understand how professionals in each system obtain information related to pediatric brain injury; what they see as the biggest challenges that need to be addressed; how to promote advocacy in pediatric brain injury rehabilitation; and how to assess ways that the two groups can work together to address these issues. This paper describes the survey results, compares the responses of the medical rehabilitation providers with those of the educational professionals, and uses this data to generate recommendations for bridging these gaps in care.

2. Methods

The ACRM, BI-ISIG Pediatric-Adolescent Task Force constructed a 19-question survey that was distributed via an electronic survey method (Survey Monkey). The survey was constructed via consensus in the Task Force of common issues facing rehabilitation and educational professionals. The survey can be found in Appendix I. There were 2 groups surveyed, the first being the membership of the ACRM’s Pediatric-Adolescent Task Force, consisting mostly of medical rehabilitation professionals who practice in hospitals, outpatient rehabilitation settings, and independent practice. The second group surveyed was the membership of the National Collaborative on Children’s Brain Injury (NCCBI), which consists of educational professionals spanning a wide range of disciplines, including representatives from state departments of education, state-led agencies on brain injury, national brain injury organizations, and federal brain injury partners. The survey was sent to 30 people in the ACRM group and 28 people in the NCCBI group. Participants were asked to further distribute the survey to colleagues, with a final total of 44 respondents from the ACRM group and 40 respondents in the NCCBI group.

Results from multiple-choice questions were tabulated in terms of frequency of responses. Open-ended questions that afforded qualitative responses were coded to allow for a quantitative analysis of recurrent themes. Notably, the open-ended questions in the survey were optional, and as a result, not all respondents provided a response to these questions. The number of respondents from each group who responded to the open-ended questions is reflected in the table associated with each question in the results section. A content analysis method was used to analyze open-ended questions and followed steps outlined in Krippendorff [22] and Schreier [23]. Individual responses to the open-ended survey items (i.e., sentences or phrases) were chosen as the basic unit of analysis. In several cases, a response contained more than one thematically distinct statement and was assigned more than one coding category. All of the resulting statements were transcribed into a spreadsheet. The process of category development was inductive in that the categories were allowed to emerge from the data. Initial coding categories were considered tentative, as they were sometimes later modified for various reasons, including the emergence of new coding categories. For many of the categories, subcategories were developed as a means of further clarifying and enriching the analysis and facilitating the discussion of findings. Two of the researchers independently coded each of the responses and then compared analyses until an acceptable level of intercoder reliability ( $>$ 85%) was achieved. The final coding template was used to code all remaining data into broad and specific categories by each coder independently. The coders met regularly to review coding results and discrepancies. Any disagreements or discrepancies were discussed until consensus was reached. The degree of agreement was calculated by the Kappa statistic using SPSS version 22.0 and was satisfactory (kappa = 0.88). As per recommendations in Hill et al. [24], a 10% cutoff was used for inclusion of codes.

3. Results

The discipline/specialty of each of the respondents was collected for both groups. For the ACRM group, the majority of respondents were either Clinical Neuropsychologists (20.5%) or Physicians (20.5%), followed by Speech-Language Pathologists (17.9%), Occupational Therapists (12.8%), Physical Therapists (2.6%), Nurses (2.6%), Research Scientists (2.6%), or Educators (2.6%). For the NCCBI group the respondents were School Nurses (31%), School Psychologists (25%), Educators/Classroom Teachers (13%), School Social Workers (8%), School Physical Therapists (8%), School Neuropsychologists (5%), School Speech Therapists (5%), a School Occupational Therapist (3%), and an attorney practicing educational law (3%).

The practice setting of each of the respondents was also tabulated for both groups. For the ACRM group, the majority of respondents were practicing in Acute Rehabilitation (31%), followed by Outpatient Clinic (26%), Post-Acute Rehabilitation (23%), College or University (10%), and Acute Hospital (3%). For the NCCBI group, the practice settings were mostly Schools (78%), with the remainder in Community Organizations (10%), Outpatient Clinic (3%), and Post-Acute Rehabilitation (3%).

Both groups were asked about how they receive new information that would affect pediatric-adolescent brain injury rehabilitation and new regulations being implemented from Centers for Medicare/Medicaid or the Department of Education, how they receive evidence-based information, and how they learn more about pediatric brain injury research (see Table 1 for detailed results). Both the ACRM and the NCCBI groups produced the highest rankings for how they receive new information through professional organizations. For the ACRM group, the next highest response was journalarticles, whereas the NCCBI group’s next highest response was listservs. Both the ACRM and NCCBI groups reported using websites to access information at similar rates. The ACRM group ranked journal articles highest as their primary means of receiving evidence-based information, whereas the NCCBI group ranked journal articles as only their third highest response. Rather, the NCCBI group endorsed professional organizations and websites as their top two means for receiving evidence-based information. Interestingly, the NCCBI group was twice as likely to utilize listservs compared to the ACRM group. Readingjournal articles and attending conferences and webinars were ranked as the most frequent means of learning more about pediatric brain injury research for both the ACRM and NCCBI groups. However, the ACRM group was slightly higher than the NCCBI group in reading journal articles, whereas the NCCBI group was slightly higher than the ACRM group for attending conferences and webinars (although the differences here are minor). Both groups were fairly equal in their responses for networking with researchers. The ACRM group ranked research activities within my clinical or school setting noticeably higher than the NCCBI group. This likely reflects the inherent differences between settings. Indeed, clinical settings often have active clinical research programs compared to relatively fewer such programs in educational settings. Either way, these data reflect that both medical/rehabilitation professionals and educational professionals all use didactic methods (e.g., conferences and webinars) as well as self-study via reading journal articles, as the primary means of acquiring information regarding pediatric brain injury research. These findings provide valuable information that can facilitate effective ways of coordination, collaboration, and disseminating information between disciplines that serve children with brain injury.

When asked what process is used to determine whether changes to policies and procedures are warranted, both ACRM and NCCBI groups produced very similar response patterns, with consulting with a colleague, being the most common process utilized, followed by consultation with administration. Consultation with professional organizations was the next most frequently used process, with consultation with attorneys coming in last.

Both ACRM and NCCBI groups reported that research and regulation affect their practices in similar ways. There was a slight inversion in the most frequent responses between groups, with the ACRM group reporting that research and regulation most influence new therapeutic strategies, whereas the NCCBI group endorsed implementing new staff trainings as the primary way that research and regulation influence their practice. These differences reflect differences in the roles that each group plays in working with children with brain injury.

When asked about reimbursement, availability and access to services post-acute pediatric-adolescent brain injury, getting paid for cognitive rehabilitation was the major reimbursement issue faced by both ACRM and NCCBI respondents. Gaps in brain injury service availability were weighted more towards the behavioral health system by NCCBI respondents and more in schools by ACRM respondents. Both sets of respondents agreed that lack of available support groups for this population and limited access available behavioral health services were seen as problematic.

When asked what they see as the biggest challenges for pediatric-adolescent brain injury that will require advocacy, the ACRM group saw the biggest challenge as availability andaccess to care and services, specifically obtaining services from specially trained clinicians, obtaining behavioral and mental health interventions, and cognitive rehabilitation services. The second biggest challenge requiring advocacy according to the ACRM group is the coverage of care and services, specifically getting insurance and other coverage for services. Unlike the ACRM group, NCCBI responders saw the biggest challenge requiring advocacy as education and training, specifically the education of parents, school personnel, and medical professionals and education about brain injury and concussion. The second biggest challenge requiring advocacy according to NCCBI respondents was transition, coordination of care and re-integration, including transitioning back to school and coordination and communication with schools. Notably, the ACRM group also saw transition, coordination of care, and re-integration as important challenges that requires advocacy. See Table 2 for more details.

Participants were asked to rank the top issues in pediatric brain injury that they want the BI-ISIG Pediatric and Adolescent Task Force to address. Those issues requiring advocacy from the perspective of ACRM respondents were to improve access and funding for cognitive rehabilitation, followed by the need to develop a sustainable model of pediatric rehabilitation. Interestingly, there was little consensus about the greatest need for advocacy among the NCCBI respondents.

When asked about what possible opportunities they think the BI-ISIG Pediatric-Adolescent Task Force could address, the ACRM group produced the highest rankings for continuing education/conference symposia and developing best practice guidelines, both of which were ranked as 15.8%. These were closely followed by facilitating opportunities for networking at 14.2%, which was then followed by creating materials to be disseminated at 11.1%, and facilitating professional mentoring and identifying methods for research grant funding, both of which were 8.4%. In comparison, the NCCBI group’s most frequent response was creating materials that can be used to disseminate information at 20%. This finding is not surprising considering that educators are primary consumers of educational materials produced by ACRM and similar organizations. The NCCBI group’s second most frequent responses were for continuing education and for developing best practice guidelines, both of which were ranked at 18%. Notably, these two items were the ACRM group’s most frequent responses, indicating some agreement that what is produced is being sought by consumers.

When asked what topics in pediatric brain injury they want the BI-ISIG Pediatric-Adolescent Task Force to consider when developing symposia for the future, the ACRM and NCCBI groups both listed the top issue they want the Task Force to address as education and training, but emphasized different aspects/subcategories. Specifically, the ACRM group identified education and training about brain injury and concussion and appropriate treatment and interventions as most important, while the educational responders identified the education of school personnel and education about the hidden signs of TBI as most important. Both groups similarly identified transition, coordination of care andre-integration as the second most important issues that they want the Task Force to address. Specifically, both groups identified transitioning to school as most important, while the ACRM group also identified transitioning into adulthood and back into the community as important issues to address. See Table 3 for further details.

Participants in both groups were asked if they communicate with professionals in other settings about the child’s care following a brain injury. When a child returns to school after a brain injury, the majority of ACRM respondents indicated there is communication with the school, while among the NCCBI respondents the majority indicated that communication with the child’s brain injury providers occurs only some of the time.

Both groups were overwhelmingly in favor of collaborating, but their ideas about what they could collaborate on revealed very different goals and approaches. When asked about what they are interested in doing collaboratively with others, both groups identified the development of best practice guidelines, policies and legislation and education and training among the top areas of interest. Specifically, for the development of resources, the ACRM group identified the development of guidelines and treatment and clinical protocols, whereas the NCCBI group identified best practice guidelines as significant areas of interest. The ACRM group also identified research as an area of significant interest, while the NCCBI responders identified transition, coordination of care, and re-integration as an area of significant interest, specifically the transition to school. For a comprehensive list of responses for each group and comparison of response rates between groups please see Table 4.

In summary, the results confirmed survey participants’ perceptions that there are significant unmet needs of children with brain injury that require attention and advocacy, as well as the need for both groups to work more collaboratively to better meet those needs. Both medical rehabilitation and educational groups were committed to using up-to-date research, recommendations, and guidelines to inform their practice, and both groups identified their preferred sources of such information. Both groups expressed willingness to network and collaborate with each other in order to best serve the needs of children with brain injury, and requested the development of education, training and information for dissemination, as well as developing best practice guidelines pertaining to transitions back to school and coordination of care. However, the findings also indicate that each group differs in their methods for seeking new information which has important implications for improvements in collaborative services.

This study aimed to understand the perspectives and attitudes of professionals in the medical and educational communities regarding the needs of children with brain injury and how to best work together to meet those needs as these children transition back to school. The results of this study provide rich data that not only informs perceptions, but also points to possible gaps in systematic communication that can be used to inform future transitional programs. For instance, our findings highlight preferential differences in the informational resources used by each group (e.g., journal articles vs. listserves). Accessing information from different resources can result in discrepancies from what is understood to be consensus standards about a student sub-population’s needs and accepted guidelines for intervention. This may also account, in part, for ineffective methods for disseminating information. Indeed, if medical rehabilitation professionals are disseminating return to learn guidelines only in medical journals, then it may not effectively reach the educators, those who need it the most.

These survey results also provide clarity regarding what educators and medical rehabilitation professionals think are the biggest needs in pediatric brain injury. Notably, when asked what opportunities the BI-ISIG Pediatric-Adolescent Task Force could address, the NCCBI group’s most frequent response indicated a need for materials that can be used to disseminate information. However, the ACRM group ranked creating materials to disseminate information as the fourth lowest option. In other words, the educational group’s top response was ranked as relatively low in importance by the medical rehabilitation group, representing a supply and demand discrepancy. ACRM may wish to address this discrepancy by placing higher priority on creation and distribution of informative materials for schools. Furthermore, based on other responses from NCCBI (see Table 1), medical rehabilitation professionals may wish to target listservs and webinars as effective mediums for distributing information and providing evidence-based trainings.

The application of these findings is far-reaching, as there are clear differences in how each discipline seeks out information which contributes to gaps in care. Even when both disciplines seek information from similar formats or types of venues (e.g., professional organizations, listservs, and journal articles), such resources are not inherently designed to promote interdisciplinary communication, representing “closed circuits”, so to speak. For instance, listservs are typically comprised of a self-selected group of a specific discipline, utilized for consultative and networking purposes. Similarly, professional organizations are often times designed for specific disciplines. To a lesser extent, even journal articles are typically geared towards target audiences within related disciplines. As such, medical rehabilitation and educational professionals alike must take an active role in enhancing interdisciplinary communication.

The above discrepancies notwithstanding, there were numerous commonalities between medical and educational professionals. Both groups agreed on the need for professional development in brain injury (such as trainings, webinars, workshops), particularly for school personnel, as well as on the need for collaboration between parents, medical professional and the school system to best coordinate care and transitions back to school. These are consistent with needs and recommendations in previous literature [15, 25, 26], with further emphasis on the lack of availability and coverage of services, and the need for information and training regarding evidence-based practice guidelines, policies and procedures.

5. Conclusion

In conclusion, collaboration between medical rehabilitation and educational professionals is essential for children with brain injury to receive necessary services and accommodations. Thus, understanding the perspectives and attitudes of both groups regarding the needs of such children and the areas that require improvement and advocacy is vital to facilitate collaboration. This information can inform future actions taken by both groups in order to bridge the existing gaps in the continuum of service for this population. Future research can assess effectiveness and outcomes of the above-mentioned recommendations.