Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey

ABSTRACT

Objective

To explore longer-term health-related quality of life (HRQoL) and participation outcomes and goals of children and young people (CYP) with acquired brain injuries (ABI) and their families in a region of the UK and the impact of the COVID-19 pandemic.

Methods

Cross-sectional survey of (5-18 CYP) and their parent-carers 12–43 months following ABI. Included measures of HRQoL, participation, family function and parental wellbeing and demographic and free text questions.

Results

Ninety-five responses (30% response) were received. 67% of CYP were at risk of impaired HRQoL, 72% had severely impaired participation. 53% of parent-carers reported reduced HRQoL and family functioning, 37% of parent-carers screened positive for anxiety/depression. Relationships exist between CYP participation and HRQoL and parental HRQoL and family functioning. Goals were overwhelmingly activity and participation focused. Participants described the global impact of an ABI on the CYP and family as well as the additional impact of the COVID-19 pandemic on CYP and family wellbeing.

Conclusion

ABI significantly impacts CYP participation and both CYP and parent-carer wellbeing in the long-term, potentially further impacted by the COVID-19 pandemic. Rehabilitation interventions should address both participation and the psychological wellbeing of CYP with ABI and their parent-carers.

KEYWORDS:

• Acquired brain injury
• children and young people
• goals
• health-related quality of life
• participation
• outcomes
• survey

Acknowledgments

This study is funded by the NIHR Applied Research Collaboration East Midlands (ARC EM). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Our thanks goes to the children and young people and their parents/carers that took part in this study, our patient and public involvement families, the clinical team for their assistance with recruitment and to Lal Russell for being second reviewer for the goal analysis.

Abbreviations

ABI	=	Acquired Brain Injury
CASP	=	Child and Adolescent Scale of Participation
CYP	=	Children and young people
HRQoL	=	Health-related quality of life
IQR	=	Interquartile range
NHS	=	National Health Service
PedsQLTM	=	Pediatric Quality of Life Inventory
PedsQLTM-FIM	=	Pediatric Quality of Life Inventory – Family Impact Module
PHQ-4	=	Patient Health Questionnaire − 4
SD	=	Standard Deviation
UK	=	United Kingdom

Disclosure statement

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

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/02699052.2024.2309244

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

The work was supported by the National Institute for Health and Care Research Applied Research Collaboration East Midlands.