Care and support needs of families in the first 9 months after PICU discharge: A multi-center, longitudinal, qualitative study

AIM: To explore the experiences, associated care and support needs of families in the 9-months following a child's Pediatric Intensive Care Unit (PICU) discharge, using the Post-Intensive Care Syndrome in Pediatrics (PICS-p) framework.

METHODS: An embedded qualitative study within the OCEANIC longitudinal mixed-methods study was conducted across seven PICUs in England. Forty families were purposively sampled and interviewed at two time points (1-3 and 6-9 months post-discharge). Semi-structured interviews with children, parents, and siblings were analysed using Framework Analysis, informed by both deductive and inductive approaches.

FINDINGS: A total of 57 participants (45 parents; 11 children; 1 sibling) were interviewed from May 2020 - November 2022. Themes in care and support revealed multifaceted and interdependent needs across physical, cognitive, emotional, and social health domains. Unmet needs in one domain often exacerbated challenges in others, and across family members. Key concerns included lack of coordinated follow-up care, psychological distress, cognitive burden related to life administration, and financial strain. The COVID-19 pandemic intensified these challenges, particularly through restricted hospital access and disrupted healthcare services.

CONCLUSIONS: In the nine months following discharge from the PICU, families experience complex, evolving needs post-PICU discharge, many of which remain unmet and interlinked across PICS-p domains. The pandemic context amplified these needs, highlighting systemic gaps in post-discharge support and continuity of care.

IMPLICATIONS FOR CLINICAL PRACTICE: Findings illuminate the necessity for integrated, family-centred follow-up services that address physical recovery, psychological support, and social determinants of health. Routine screening for PICS-p morbidity, improved interprofessional communication, and accessible mental health services are essential. Tailored interventions should be developed and tested to support families at risk, ensuring equitable recovery and long-term wellbeing.