ArticleBMJ open2025
Using experience-based co-design to explore care experiences and identify practice change priorities for children with medical complexity in the paediatric intensive care unit.
Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
2 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Evaluating co-design approaches with parents in paediatric healthcare: a systematic review.BMC health services research · 2025Pooled it
- Moving from Challenge to Change: Redesigning Inpatient Care for Children with Complex Care Needs.Children (Basel, Switzerland) · 2026Article
Corrections and comments
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Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesChildren with medical complexity (CMC) frequently experience acute deterioration requiring paediatric intensive care unit (PICU) hospitalisation. Collaboration between families and healthcare professionals (HCPs) is vital yet often challenging, suggesting a new care approach is needed. This study explored the PICU care experiences of CMC, parents and HCPs and identified common priorities and practice changes to enhance care.
designAn experience-based co-design (EBCD) approach was used. Semistructured interviews were conducted with CMC and parents (stage 1) and HCPs (stage 2). A co-design event with parents and HCPs followed (stage 3).
settingInterviews took place in family homes, hospital meeting rooms and virtually. The co-design event took place at the hospital.
participantsInterviews: CMC and parents (n=21, 13 families) within 1 year of their most recent PICU discharge. PICU and complex care service HCPs (n=15). Co-design event: parents and HCPs (n=22). Maximum variation sampling was used.
resultsStage 1: Child and family-related themes included becoming known, becoming a parent caregiver or child care receiver, establishing caregiver relationships, and expecting a responsive and dignified caregiving environment. Stage 2: HCP-related themes included adapting to a different care approach, positioning parents as collaborators, navigating personal connections, and providing continuity of care. Stage 3: Two videos (sharing child and family perspectives, and HCPs' perspectives) were produced to promote discussion at the co-design event. Common care priorities included increase HCPs' awareness of who the child is when they are well; improve interdepartmental communication; enhance HCPs' understanding of families' expertise and needs; enhance parent-HCP partnerships and develop HCP training programmes. Potential practice changes were identified.
conclusionsParticipants identified the need for a collaborative approach to care for critically ill CMC, integrating the expertise of children, parents and HCPs. EBCD can help ground the perspectives and needs of HCPs, children and families in future PICU patient and family-centred care interventions.
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