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Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study
Jasmijn Kerklaan1, Camilla S Hanson2, Simon Carter2
1Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia.
Insights
Clinicians aim to balance patient priorities with medical responsibilities in pediatric chronic kidney disease (CKD) care. Improving shared decision-making requires addressing system constraints and supporting families for better long-term outcomes.
Area of Science:
- Pediatric Nephrology
- Healthcare Decision-Making
- Chronic Kidney Disease Management
Background:
- Clinical decision-making priorities can vary among pediatric patients, their parents, and healthcare providers.
- Shared decision-making (SDM) is crucial for effective chronic kidney disease (CKD) care in children.
Purpose of the Study:
- To explore clinicians' perspectives on SDM in pediatric CKD.
- To identify strategies for enhancing SDM and care quality for children with CKD and their families.
Main Methods:
- Conducted semistructured interviews with 50 clinicians (pediatric nephrologists, nurses, social workers, surgeons, dietitians, psychologists).
- Participants were from 18 hospitals and 4 university research departments across 11 countries.
- Interview transcripts were analyzed using thematic analysis.
Main Results:
- Clinicians strive to minimize treatment burden and align with family goals.
- They focus on medical responsibilities, safety, and system constraints.
- Collaboration aims for better long-term outcomes through individualized care, partnerships, and addressing parental distress.
- Knowledge is built by balancing expectations, understanding treatments, and motivating for long-term goals.
Conclusions:
- Clinicians endeavor to support children and families in decision-making while managing treatment burdens.
- System constraints and responsibility for long-term outcomes present challenges.
- Further research is needed to evaluate interventions supporting SDM to improve pediatric CKD care quality.
Rationale & Objective:
Clinical decision-making priorities may differ among children, their parents, and their clinicians. This study describes clinicians' perspectives on shared decision making in pediatric chronic kidney disease (CKD) and identifies opportunities to improve shared decision making and care for children with CKD and their families.
Study Design:
Semistructured interviews.
Setting & Participants:
Fifty clinicians participated, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists involved in providing care to children with CKD. They worked at 18 hospitals and 4 university research departments across 11 countries (United States of America, Canada, Australia, People's Republic of China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand, and Singapore).
Analytical Approach:
Interview transcripts were analyzed thematically.
Results:
We identified 4 themes: (1) striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), (2) focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), (3) collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision making, sensitive to parental distress), and (4) forming cumulative knowledge (balancing reassurance and realistic expectations, building understanding around treatment, harnessing motivation for long-term goals).
Limitations:
Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain.
Conclusions:
Clinicians reported striving to minimize treatment burden and working with children and their families to manage their expectations and support their decision making. However, they are challenged with system constraints and sometimes felt the pressure of being responsible for the child's long-term outcomes. Further studies are needed to test whether support for shared decision making would promote strategies to establish and improve the quality of care for children with CKD.
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