Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions

ABSTRACT

To describe current rehabilitation models of care and programmes, in Australia and internationally, related to family-centred care, psychosocial support, and transitions used for children and youth who have sustained major traumatic brain and/or spinal cord injuries. Fourteen services were interviewed, including eight medical rehabilitation services, three community-based rehabilitation services, two insurance services, and one state-wide education service provider. Semi-structured interviews were transcribed and analysed using qualitative content analysis in NVivo. Compared to the number of services supporting children and youth with traumatic brain injury, a very limited number supported those with spinal cord injury. Although valued and often included in the model of care, family-centred care was rarely systematically evaluated by the services. Most services provided psychosocial and transition support to children and youth, and their families in the short-term post-injury, but not in the long-term. Several challenges also hindered the smooth delivery of these support services, including poor communication between service providers. These findings show that services aimed to provide the best possible care to these children and youth, and their families; guided by rehabilitation models of care. However, challenges persist with regards to delivering family-centred care, coordinating return to school, and providing long-term support for psychosocial problems and transition.

KEYWORDS:

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

Acknowledgements

This work was commissioned by the Transport and Accident Commission in Victoria (Australia) and was supported by the Victorian Government’s Operational Infrastructure Support Programme. We would like to acknowledge the members of the Study Steering Committee for their expertise and contribution to establishing and 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 and Accident Commission (Victoria, Australia). Most importantly, we would like to acknowledge the steering committee members with lived experience of TBI 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 CBR and MR services. 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).