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Using experience-based co-design to explore care experiences and identify practice change priorities for children
Janet E Rennick1,2,3,4, Kenneth Southall4, Franco Carnevale2
1Department of Nursing, Montreal Children's Hospital, McGill University Health Centre, Montreal, Quebec, Canada janet.rennick@mcgill.ca.
Insights
Parents and healthcare professionals (HCPs) desire enhanced collaboration for children with medical complexity (CMC) in the paediatric intensive care unit (PICU). Experience-based co-design identified priorities for improved patient- and family-centered care.
Area of Science:
- Pediatric critical care
- Patient and family-centered care
- Healthcare collaboration
Background:
- Children with medical complexity (CMC) often require paediatric intensive care unit (PICU) admission due to acute deterioration.
- Effective collaboration between families and healthcare professionals (HCPs) is crucial but challenging for CMC.
- A novel care approach is needed to improve PICU experiences for CMC and their families.
Purpose of the Study:
- To explore the PICU care experiences of CMC, their parents, and HCPs.
- To identify shared priorities and potential practice changes for enhancing CMC care.
- To inform the development of patient- and family-centered care interventions.
Main Methods:
- An experience-based co-design (EBCD) methodology was employed.
- Semistructured interviews were conducted with CMC, parents (n=21), and HCPs (n=15).
- A co-design event involving parents and HCPs (n=22) synthesized findings.
Main Results:
- Key themes included the importance of recognizing the child beyond their illness, establishing strong caregiver relationships, and ensuring a responsive care environment.
- HCPs highlighted adapting care approaches, valuing parental collaboration, and ensuring continuity of care.
- Identified priorities: increasing HCP awareness of the child's well-being, improving communication, understanding family expertise, and strengthening parent-HCP partnerships.
Conclusions:
- A collaborative care model integrating expertise from children, parents, and HCPs is essential for critically ill CMC.
- EBCD effectively captured diverse perspectives to guide future PICU patient- and family-centered care initiatives.
Objectives:
Children 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.
Design:
An 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).
Setting:
Interviews took place in family homes, hospital meeting rooms and virtually. The co-design event took place at the hospital.
Participants:
Interviews: 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.
Results:
Stage 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.
Conclusions:
Participants 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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