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Study protocol for a multicentre longitudinal mixed methods study to explore the Outcomes of ChildrEn and fAmilies in
Joseph C Manning1,2,3, Jos M Latour4,5, Martha A Q Curley6,7,8
1Children and Young People Health Research, School of Health Sciences, University of Nottingham, Nottingham, Nottinghamshire, UK joseph.manning@nottingham.ac.uk.
Insights
This UK study tracks children surviving paediatric intensive care (PICU), their parents, and siblings for a year post-discharge. It investigates the long-term physical, emotional, and social impacts of PICU admission on families.
Area of Science:
- Pediatric critical care medicine
- Longitudinal cohort studies
- Family impact research
Background:
- Annually, 20,000 UK children require paediatric intensive care unit (PICU) admission.
- While most children survive PICU, long-term physical, functional, and emotional challenges for survivors and their families are not well understood.
- Identifying these post-PICU issues and their causes is crucial for improving long-term outcomes.
Purpose of the Study:
- To longitudinally investigate the physical, functional, emotional, and social impact of PICU survival on children (1 month-17 years), their parents, and siblings.
- To understand the timing and causes of these impacts during the first year after PICU discharge.
- To provide comprehensive data for enhanced family-centered post-PICU care.
Main Methods:
- Mixed-method longitudinal cohort study involving 300 child survivors, 300 parents, and 150-300 siblings.
- Quantitative data collection via validated questionnaires at baseline, PICU discharge, and 1, 3, 6, 12 months post-discharge.
- Embedded qualitative study using semi-structured interviews with 24 families at 3 and 9 months post-discharge.
Main Results:
- Data collection is ongoing; this is a pre-results registration.
- The study aims to identify specific physical, functional, emotional, and social consequences.
- Analysis will use descriptive and inferential statistics for quantitative data and framework analysis for qualitative data.
Conclusions:
- This is the first UK study comprehensively assessing the first-year post-PICU consequences for survivors and their families.
- Findings will inform targeted interventions and support strategies for children and families after PICU.
- The research addresses a critical knowledge gap in pediatric critical care long-term outcomes.
Introduction:
Annually in the UK, 20 000 children become very ill or injured and need specialist care within a paediatric intensive care unit (PICU). Most children survive. However, some children and their families may experience problems after they have left the PICU including physical, functional and/or emotional problems. It is unknown which children and families experience such problems, when these occur or what causes them. The aim of this mixed-method longitudinal cohort study is to understand the physical, functional, emotional and social impact of children surviving PICU (aged: 1 month-17 years), their parents and siblings, during the first year after a PICU admission.
Methods And Analysis:
A quantitative study involving 300 child survivors of PICU; 300 parents; and 150-300 siblings will collect data (using self-completion questionnaires) at baseline, PICU discharge, 1, 3, 6 and 12 months post-PICU discharge. Questionnaires will comprise validated and reliable instruments. Demographic data, PICU admission and treatment data, health-related quality of life, functional status, strengths and difficulties behaviour and post-traumatic stress symptoms will be collected from the child. Parent and sibling data will be collected on the impact of paediatric health conditions on the family's functioning capabilities, levels of anxiety and social impact of the child's PICU admission. Data will be analysed using descriptive and inferential statistics. Concurrently, an embedded qualitative study involving semistructured interviews with 24 enrolled families at 3 months and 9 months post-PICU discharge will be undertaken. Framework analysis will be used to analyse the qualitative data.
Ethics And Dissemination:
The study has received ethical approval from the National Health Services Research Ethics Committee (Ref: 19/WM/0290) and full governance clearance. This will be the first UK study to comprehensively investigate physical, functional, emotional and social consequences of PICU survival in the first-year postdischarge.Clinical Trials Registration Number: ISRCTN28072812 [Pre-results].
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