Family involvement in rehabilitation programmes for children and adolescents with acquired brain injury: A scoping literature review

ABSTRACT

Paediatric acquired brain injury (ABI) can adversely impact families, and it is widely accepted that families should be involved in the rehabilitation of children/adolescents with ABI. However, there is limited guidance about how to best involve families in paediatric ABI rehabilitation. Several programmes involving the families of children/adolescents with ABI have been developed, but there are no published reviews outlining their characteristics. This scoping literature review aimed to synthesize information about these programmes and develop an understanding of how families are involved in them. Four databases were systematically searched to identify sources of evidence that described programmes in paediatric ABI rehabilitation that involve family members. One hundred and eight sources of evidence describing 42 programmes were included. Programmes were categorized as: service coordination (n = 11), psychosocial (n = 17), support groups (n = 4), training/instruction (n = 9), and education (n = 1). Families’ involvement in these programmes varied across programme development, delivery, and evaluation stages. The findings of this scoping literature review outline how families can be involved in paediatric ABI rehabilitation. While this review outlines many approaches to supporting families, it also highlights the need for models of family-centred care to better articulate how clinicians and services can involve families in paediatric ABI rehabilitation.

KEYWORDS:

• Acquired brain injury
• rehabilitation
• paediatric
• family
• family programmes

Acknowledgements

We are grateful to Poh Chua (Royal Children’s Hospital Melbourne Library) for her assistance in developing the search strategy.

Disclosure statement

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

Authors’ contributions

T.J. performed the literature search; T.J. and E.B. conducted the data analysis; T.J. prepared tables and drafted the manuscript; S.K., K.D’C., V.A., E.B., F.M. and A.S. critically revised the work.

Additional information

Funding

We acknowledge the funding support for this project from the Research Training Program Scholarship made available through The University of Melbourne and the Australian Commonwealth Government, and the Victorian Government’s Operational Infrastructure Support Program. None of these funders had any involvement in the planning, design or execution of this research, and neither played a role in drafting the manuscript.