Enabling participation in children and young people (CYP) with acquired brain injuries (ABI) and their families-mixed methods study-preliminary survey results

ABSTRACT

Introduction: Annually an estimated 40,000 CYP in the UK sustain an ABI with many experiencing significant, life-long impairments that impact on physical and psychological development, health-related quality of life (HRQoL), educational achievement and social inclusion. Patients and methods: A quantitative cross-sectional survey was completed as part of a mixed methods study which aims to explore the longer term needs of CYP-ABI aged 5-18 and their families in one region of the UK. Participants were recruited using eligibility criteria through a regional specialist clinical service. Ethical approval was gained (REC-20/ EM/0258). The survey consisted of demographic questions and standardised outcome measures completed by the parent or CYP-Pediatric Quality of Life Inventory 4.0 (PedsQL), PedsQL-Family Impact Module (PedsQL-FIM), Child and Adolescent Scale of Participation (CASP), Parental Health Questionnaire-4 (PHQ-4). Additional free text questions were included to capture parent and CYP goals, impact of Covid-19 lockdowns and any other information they wished to share. Results: 44 families have completed the survey so far, a response rate of 26%. CYP PedsQL scores indicated 31% were at risk of impaired HRQoL and the CASP indicated 68% had severely impaired social participation. 48% of families had impaired family HRQoL (PedsQL-FIM) and 48% of parents screened positive for anxiety, depression or both (PHQ-4). Conclusion: These preliminary results indicate the long-term impact of an ABI on CYP and family HRQoL and CYP social participation. The context behind these scores will be explored more deeply in qualitative interviews during the next phase of the study.