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Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.
Jody L Lin1, Catherine L Clark2, Bonnie Halpern-Felsher3
1Division of Pediatric Hospital Medicine, Department of Pediatrics, Stanford University School of Medicine (JL Lin), Stanford, Calif; Division of Pediatric Hospital Medicine, Department of Pediatrics, University of Utah (JL Lin), Salt Lake City, Utah.
Academic Pediatrics
|June 17, 2020
Summary
Parents of children with medical complexity (CMC) desire improved shared decision-making (SDM). Key opportunities include clear timelines, integrating patient values, and addressing uncertainty to enhance SDM for CMC.
Area of Science:
- Pediatric healthcare
- Patient-centered care
- Health outcomes research
Background:
- Shared decision-making (SDM) is crucial for improving outcomes in children with medical complexity (CMC).
- Children with medical complexity experience lower rates of SDM compared to other pediatric populations.
- Effective strategies to enhance SDM for CMC remain underexplored.
Purpose of the Study:
- To explore parent perspectives on shared decision-making (SDM) for children with medical complexity (CMC).
- To identify specific opportunities for improving SDM tailored to the unique needs of CMC and their families.
Main Methods:
- Qualitative study involving interviews with 32 parents of children with medical complexity (CMC).
- Interviews explored parents' experiences and preferences regarding SDM.
- Data analyzed using modified grounded theory to identify emergent themes.
Main Results:
- Three overarching themes emerged: participant, knowledge, and context.
- Parents highlighted the need for a defined shared decision timeline.
- Integrating patient/family values and addressing decision-related uncertainty are key areas for SDM improvement.
Conclusions:
- Parent insights offer valuable perspectives on SDM for children with medical complexity (CMC).
- Identified opportunities can guide future interventions and research to enhance SDM for this population.
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