Family functioning and caring for a child with acquired brain injury: a systematic review and thematic analysis

OBJECTIVE: Pediatric acquired brain injuries (pABIs) broadly impact the child and family, affecting emotional functioning, relationships, and daily life. Given the absence of a comprehensive overview of the impact of pABI on family functioning, this review aims to examine this issue and propose a conceptual model to guide clinical care.

METHODS: A systematic search of CINAHL, Embase, PsycINFO, PubMed, Scopus, Web of Science, and PTSDpubs for articles published January 2013-November 2024 was performed. Eligible articles focused on children (0-18 years) with pABI, examined family functioning, were in English, and used qualitative or mixed methods. Studies on concussions and non-peer-reviewed publications were excluded. Inductive thematic analysis identified themes that were synthesized into a conceptual model. Risk of bias was assessed using the Critical Appraisal Skills Programme. The review, funded by Stichting Koningsheide, was registered in PROSPERO (CRD42023457622).

RESULTS: Twenty-four articles were included, covering moderate-to-severe traumatic brain injuries, brain tumors, stroke, and infections. Family members included caregivers, siblings, and adoptive relatives. Five themes emerged: Changing family dynamics; A different reality; The emotional weight; Navigating emotional challenges; and Needing to be heard and held. These were integrated into the Utrecht Family Support Model for Pediatric Acquired Brain Injury.

CONCLUSIONS: Family functioning after pABI can only be fully understood if multiple interconnected psychosocial and practical aspects are considered. Most included studies were of low-to-moderate quality, limiting the reliability, validity, and generalizability of the findings. Nonetheless, the conceptual model could provide a framework for understanding family functioning and enhancing outcomes for pABI.