Conectar
by Brooke Allemang, Francine Buchanan, Pranshu Maini, Dalya Kablawi, Lin Li, Linda Nguyen, Kimberly Courtney, Jessie Cunningham, Carla P. Southward, Kristin Cleverley, Sarah Munce, Alene Toulany
BackgroundPediatric patient and family engagement is an active and collaborative process, that involves children, adolescents, and family members with lived experience contributing to the design, implementation, and evaluation of healthcare services. Prior studies have highlighted the patient engagement methods and impact in clinical care, education, and research. However, gaps remain in understanding the commonalities and distinctions of engagement approaches, patient/family partner roles, and outcomes in clinical care, education, and research contexts. Further, research examining the nuances of pediatric patient and family engagement within healthcare delivery, education, and research in pediatric institutions is needed to streamline efforts.
ObjectiveThis scoping review will identify the commonalities of and distinctions between pediatric patient and family engagement in clinical care, education, and research contexts in pediatric healthcare institutions.
MethodsA scoping review, conducted in collaboration with a team of adolescent, young adult, and family partners, will allow us to systematically map out key concepts, evidence, and knowledge gaps regarding pediatric patient and family engagement in clinical care, education, and research. We will follow the Joanna Briggs Institute framework in the design and conduct of the review and guidance on engaging knowledge users within scoping reviews. The protocol for this scoping review has been registered with the Open Science Framework database (https://osf.io/63qx5).
ResultsThis study will describe the engagement types, approaches, and outcomes of pediatric patient and family engagement employed within clinical care, education, and research settings, highlighting commonalities and distinctions across contexts. In doing so, it will identify potential opportunities for collaboration and resource-sharing based on the context of engagement and provide needed clarity on streamlining pediatric patient and family engagement approaches within pediatric institutional settings.
ConclusionsIt is anticipated that the results will produce preliminary evidence of relevance to pediatric institutions seeking to consolidate engagement practices across clinical care, education, and research domains.
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.
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).
Interviews took place in family homes, hospital meeting rooms and virtually. The co-design event took place at the hospital.
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.
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.
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.
FreshRSS