Challenges associated with return to school after traumatic brain injury

Each year nearly 900,000 US children up to 19 years of age sustain a traumatic brain injury (TBI) requiring hospitalization or emergency treatment. In this themed issue of NeuroRehabilitation experts share their work related to the challenges associated with return to school (RTS) for children and adolescents with TBI and discuss emerging trends, new developments, and recommendations on how they impact parents, carers and students and quality of life.

Over the past decade, there have been improvements in bringing awareness and training about TBI to educators, but there are limited data about effective interventions for students with TBI including information about and how to improve communication and coordinate care between schools and medical/health organizations.

The collection of papers in this themed issue on "Pediatric Educational Re-Entry After Traumatic Brain Injury" is guest-edited by Melissa McCart, EdD, University of Oregon, Eugene, and Susan Davies, EdD, University of Dayton.

"There are emerging programs that may be effective for students with TBI," explained Dr. McCart. "They show promise in improving educator knowledge and self-efficacy about TBI and demonstrate preliminary effects on improving school-based services for students with TBI. As practices slowly change to align with research, we must continue to increase awareness and strive to improve outcomes for children with TBI."

"Vulnerable and diverse populations are at increased risk for sustaining a TBI and experiencing poor outcomes; these students need representation in TBI studies so we can better understand their experiences and meet their needs," noted Dr. Davies.

Two of the articles in this issue explore parent/carer and educator views about the impact of RTS after a brain injury. In the article entitled "Returning to education after childhood acquired brain injury: Learning from lived parental experience," by Emily Bennett, PhD, Department of Clinical Psychology and Neuropsychology, Nottingham University Hospitals NHS Trust; and BRILL Team, Nottingham Children's Hospital, and colleagues explore the lived experience of parents and carers to focus on what can both help and hinder the process. The aim was to understand more about RTS from parents' perspectives to inform best practice and facilitate improvements in service delivery.

A service evaluation explored parent/carer views about the RTS process and the support received from healthcare professionals at a regional center in the UK. Questionnaires were sent to parents of patients treated for an acquired brain injury in the last two years. Responses from about 30 parents highlight the many challenges of RTS and revealed six key themes: Parental mindset and growth; what they need to know; specialist support and information; talk and share; challenges of new and hidden needs; and don't forget them!

"Parents offer crucial insight into the challenges of the RTS process," commented Dr. Bennett. "Their feedback draws attention to important factors for service development and reminds professionals of the key components of an effective return."

A longitudinal qualitative study tracked students with TBI from hospital discharge through their return to school and subsequently for an average of four years of school to better understand the experiences of students and parents. Researchers interviewed parents and educators of 21 students with TBI using open-ended questions plus observed students in the classroom.

"We identified three themes," explained lead investigator Dr. McCart. "Lack of student tracking year to year, lack of educator training, and conflicting views between educators and parents about students' needs. These factors ultimately led to parent frustration and eventually conflict and deteriorating relationships between parents and educators. We suggest that improving educator training could positively affect the factors identified and possibly mitigate parent frustration."

It is critically important to train educators to work with students who return to school following TBI and to track these students over the course of their school careers in order to meet their changing instructional and emotional needs."

Bonnie Todis, PhD, Co-Investigator, Center on Brain Injury Research and Training, Department of Psychology, University of Oregon

Four key recommendations emerged from this collection of papers are:

• Create protocols that emphasize intentional collaboration between systems, developing and implementing policy. This can help improve quality for both students and their families.
• Identify sources of funding to support care coordination.
• Use guided credible history interviews in the special education eligibility determination process when official medical documentation is not available. This can help ensure that students who need special education services are appropriately identified.
• Conduct more robust experimental evaluation of educational interventions for TBI.

"While there are many challenges to overcome, such as the need for improved care coordination, educator training, and family support, the good news is that awareness continues to grow in the general public about brain injury, brain injury prevention, and the challenges a brain injury can create for students," concluded the Guest Editors. "This awareness is a vital step in driving change and improvement in school practices."