Parent management of the school reintegration needs of children and youth following moderate or severe traumatic brain injury

Abstract

Purpose: School reintegration following children's traumatic brain injury (TBI) is still poorly understood from families' perspectives. We aimed to understand how both unique and common experiences during children's school reintegration were explained by parents to influence the family. Methods: Data came from an investigation using descriptive phenomenology (2005–2007) to understand parents' experiences in the first five years following children's moderate to severe TBI. Parents (N = 42 from 37 families in the United States) participated in two 90-min interviews (first M = 15 months; second M = 27 months). Two investigators independently coded parents' discussions of school reintegration using content analysis to understand the unique and common factors that parents perceived affected the family. Results: Parents' school negotiation themes included the following: (1) legal versus moral basis for helping the child; (2) inappropriate state and local services that did not consider needs specific to TBI; and (3) involvement in planning, implementing and evaluating the child's education plan. Parents perceived that coordinated and collaboration leadership with school personnel lessened families' workload. Families who home-schooled had unique challenges. Conclusions: School reintegration can add to family workload by changing roles and relationships and by adding to parents' perceived stress in managing of the child's condition.

Implications for Rehabilitation

• Moderate to severe traumatic brain injury is assumed to be the primary cause of children's morbidities post-injury.

• Despite laws in the United States meant to facilitate children's school reintegration needs, parents often perceived that policies and practices differed from the intentions of laws and added to the family workload and stress.

• The school environment of the child (physical, cultural or psychological setting) plays an important long-term role in shaping family roles, relationships and management of the child's condition.

• Children
• parents
• traumatic brain injury
• young adults

Acknowledgements

We would like to thank the parents for sharing their personal experiences and insights on this topic. The first author would like to thank Dr. Karen Kavanaugh, PhD, FAAN, for her early research mentoring on this study and Dr. Wayne A. Gordon, PhD, for his review and feedback on the initial manuscript.

Declaration of interest

The authors disclosed receipt of the following financial support for the research, training or authorship of this article: The first author was supported by a post-doctoral fellowship (Irving B. Harris Foundation Faculty Scholars Initiative at the University of Illinois at Chicago College of Nursing, Dr, White-Traut, PI) during the conceptualization and analysis phases of the study. The authorship of the manuscript was supported by a National Institutes of Nursing Research post-doctoral training fellowship, Interventions for Preventing and Managing Chronic Illness (5T32NR007091-17).

The original research study was funded by a NINR Ruth L. Kirschstein Predoctoral Research Fellowship (1 F31 NR009599-02); a Psi Chapter of Sigma Theta Tau Grant; a 2006 American Nurses Foundation Martha E. Brill Scholars Award; a University of Washington School of Nursing Hester McLaws Scholarship Fund; a University of Washington LEND Training Grant (TG # 6 T73 MC 00041-11-03); a University of Washington Gatzert Child Welfare Fellowship; and an Integra Lifesciences Grant. The contents of this manuscript are solely the responsibility of the authors and do not necessarily represent the official views of any of the funders.