Family Functioning and Caring for a Child with Acquired Brain Injury: A Systematic Review and Thematic Analysis

Abstract

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.