Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study.

Children chronic kidney disease (CKD) clinician decisional conflict end-stage renal disease (ESRD) interview patient autonomy patient-centered care patient-doctor relationship pediatric qualitative research quality of life (QOL) shared decision making

Journal

American journal of kidney diseases : the official journal of the National Kidney Foundation
ISSN: 1523-6838
Titre abrégé: Am J Kidney Dis
Pays: United States
ID NLM: 8110075

Informations de publication

Date de publication:
08 2022
Historique:
received: 25 08 2021
accepted: 06 12 2021
pubmed: 28 1 2022
medline: 27 7 2022
entrez: 27 1 2022
Statut: ppublish

Résumé

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. Semistructured interviews. 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). Interview transcripts were analyzed thematically. 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). Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain. 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.

Identifiants

pubmed: 35085686
pii: S0272-6386(22)00033-6
doi: 10.1053/j.ajkd.2021.12.009
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

241-250

Informations de copyright

Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.

Auteurs

Jasmijn Kerklaan (J)

Department 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. Electronic address: j.kerklaan@amsterdamumc.nl.

Camilla S Hanson (CS)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Simon Carter (S)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Allison Tong (A)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Aditi Sinha (A)

Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, Nagpur, India.

Allison Dart (A)

Department of Pediatrics and Child Health, Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Manitoba, Canada.

Allison A Eddy (AA)

Department of Pediatrics, University of British Columbia, Vancouver, British Columbia, Canada.

Chandana Guha (C)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Debbie S Gipson (DS)

Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.

Detlef Bockenhauer (D)

Department of Renal Medicine University College London, and Great Ormond Street Hospital for Children, National Health Service Foundation Trust, London, United Kingdom.

Elyssa Hannan (E)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Hui-Kim Yap (HK)

Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.

Jaap Groothoff (J)

Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands.

Michael Zappitelli (M)

Department of Pediatrics, Division of Nephrology, Hospital for Sick Children, Toronto, Ontario, Canada.

Noa Amir (N)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Stephen I Alexander (SI)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia.

Susan L Furth (SL)

Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.

Susan Samuel (S)

Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Alberta, Canada.

Talia Gutman (T)

Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.

Jonathan C Craig (JC)

College of Medicine and Public Health, Flinders University, Adelaide, Australia.

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