Kerklaan, Jasmijn; Hanson, Camilla S; Carter, Simon; Tong, Allison; Sinha, Aditi; Dart, Allison; Eddy, Allison A; ... Craig, Jonathan C; + view all Kerklaan, Jasmijn; Hanson, Camilla S; Carter, Simon; Tong, Allison; Sinha, Aditi; Dart, Allison; Eddy, Allison A; Guha, Chandana; Gipson, Debbie S; Bockenhauer, Detlef; Hannan, Elyssa; Yap, Hui-Kim; Groothoff, Jaap; Zappitelli, Michael; Amir, Noa; Alexander, Stephen I; Furth, Susan L; Samuel, Susan; Gutman, Talia; Craig, Jonathan C; - view fewer (2022) Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study. American Journal of Kidney Diseases 10.1053/j.ajkd.2021.12.009. (In press).

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Abstract

RATIONALE AND OBJECTIVE: Clinical decision making priorities among children, and their parents and clinicians may differ. This study sought to describe clinicians' perspectives on shared decision-making in pediatric chronic kidney disease (CKD) and identify opportunities to improve shared decision-making and care for children with CKD and their families. STUDY DESIGN: Semi-structured interviews. SETTING & PARTICIPANTS: Fifty clinicians, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists, involved in providing care to children with CKD, participated. They worked at 18 hospitals and 4 University research departments, across eleven countries (United States of America, Canada, Australia, China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand and Singapore). ANALYTICAL APPROACH: Interview transcripts were analyzed thematically. RESULTS: We identified four themes: striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision-making, sensitive to parental distress) and 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, therefore 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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