Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: A focus on service structure, service organization, and the barriers and facilitators of rehabilitation service provision

ABSTRACT

To understand the systems underlying current rehabilitation models of care used with children and youth (0–21years) who sustain traumatic brain and/or spinal cord injuries. This study gathered qualitative data on service structures, service organization, and the barriers and facilitators of service provision in selected medical rehabilitation service(s) (MRS) and community-based rehabilitation service(s) (CBRS). Informants from 11 rehabilitation services were interviewed using a semi-structured interview guide. Interviews were analysed in NVivo using content analysis method. Experiences shared by the service representatives indicated that most services supported children and youth with brain injury, with a limited number also specializing in spinal cord injuries. MRS often delivered care in inpatient or outpatient settings, while CBRS offered home/community-based services. Care planning often started either prior to or shortly after admission from acute care settings, using either multidisciplinary or interdisciplinary teamwork models. Strengths of the services included innovation and provision of family-centred care; while challenges experienced included difficulty translating evidence into practice and poor team communication. Models of care were similar across services, with a focus on providing family-centred care. Several shared challenges were described, and service representatives expressed interest in forming partnerships and collaborations to address these challenges through innovative initiatives.

KEYWORDS:

• Traumatic brain injury
• Traumatic spinal cord injury
• Rehabilitation models of care
• Children
• Youth

Acknowledgements

This work was commissioned by the Transport and Accident Commission in Victoria (Australia). We would like to acknowledge the members of the Study Steering Committee for their expertise and contribution to designing this project and in interpretation of the data: Professor Bruce Bonyhady, Tessa de Vries, Dr Jason Thompson, and Professor Louise Harms from the University of Melbourne (Australia); Nick Rushworth from Brain Injury Australia; Dianne Lucas from Spinal Cord Injuries Australia; Dr Emma Tavender from the Murdoch Children’s Research Institute (Australia); and David Bowen. Special thanks to Lyndie Freestone, Eliza Fitzpatrick, and Dr Beth Costa of the Transport Accident Commission (Victoria, Australia). Most importantly, we would like to acknowledge the steering committee members with lived experience of TBI and/or SCI: Jessica Pellow, Kajol Aegle, Rebekka Nies, and Joanne Liparota. Nethmie Gamage and Bernadette Lam (student interns at MCRI) are appreciated for their contribution to data cleaning and entry. We also thank Kate Paton and Taylor Jenkin for their advice on qualitative research methods, as well as Renata Winkler and Taylor Jenkin for assistance with the piloting of the interview guide for the CBRS and MRS. We wish to thank the informants from the national (Australian) and international services who participated in this study. Service names have been withheld to maintain the confidentiality of informants/participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was commissioned by the Transport and Accident Commission in Victoria (Australia) and was supported by the Victorian Government's Operational Infrastructure Support Program.