Family-centred service in paediatric acquired brain injury rehabilitation: perspectives of children and adolescents and their families

Abstract

Purpose Family-centred service is considered best practice in paediatric acquired brain injury (ABI) rehabilitation. However, there is no universal model to guide clinicians and services in implementing this approach with a lack of research evidence informed by the lived experience of families. This study explored experiences of family-centred service during rehabilitation from the perspectives of parents/caregivers, siblings, and children/adolescents with ABI. Materials and methods Semi-structured interviews were conducted with participants from eight families, and included 10 parents/caregivers, five siblings, and four children/adolescents with moderate to severe ABI. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Results Two themes and five sub-themes were developed: (1) Working together as a team: Valuing clinicians’ expert knowledge; Doing rehabilitation together; and Sharing family knowledge; and (2) Navigating rehabilitation as a family: Recognising family needs; Juggling family life; and Making rehabilitation work for the family. Participants reflected on the centrality of the child/adolescent with ABI during rehabilitation, and the ways that family needs, life, and involvement in rehabilitation change over time. Conclusions These findings highlight the importance of clinicians actively seeking to understand families’ unique contexts, needs, and priorities during rehabilitation through two-way information sharing with families. Through developing a greater understanding of families’ unique contexts, clinicians can be better placed to tailor rehabilitation according to their unique circumstances and needs. Implications for rehabilitation Rehabilitation involves active collaboration between families and clinicians that is responsive to changing needs over time. Family involvement in rehabilitation is shaped by family life, and families have unique needs following paediatric acquired brain injury. It is important that clinicians strive to develop an understanding of families’ unique needs, values, preferences, and lives to determine how to best support and involve them in rehabilitation.