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.
Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Australia; Sydney School of Public Health, University of Sydney, Sydney, Australia.
Am J Kidney Dis. 2022 Aug;80(2):241-250. doi: 10.1053/j.ajkd.2021.12.009. Epub 2022 Jan 25.
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.
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).
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.
临床决策的重点可能因儿童、其父母和临床医生而异。本研究描述了临床医生在儿科慢性肾脏病(CKD)中的共同决策观点,并确定了改善共同决策和儿童 CKD 及其家庭护理的机会。
半结构化访谈。
50 名临床医生参与了研究,包括参与治疗儿童 CKD 的儿科肾病学家、护士、社会工作者、外科医生、营养师和心理学家。他们工作于 11 个国家(美国、加拿大、澳大利亚、中华人民共和国、英国、德国、法国、意大利、立陶宛、新西兰和新加坡)的 18 家医院和 4 个大学研究部门。
对访谈记录进行主题分析。
我们确定了 4 个主题:(1)努力融合优先事项(减轻治疗负担,强调临床长期风险,实现共同目标);(2)专注于医疗责任(承担决策负担和期望压力,在系统限制内工作,确保安全是首要关注点);(3)合作以实现更好的长期结果(个性化护理,建立伙伴关系,鼓励所有权和参与共同决策,对父母的痛苦敏感);(4)形成累积知识(平衡保证和现实期望,建立对治疗的理解,利用对长期目标的动机)。
大多数临床医生来自高收入国家,因此研究结果在其他环境中的可转移性尚不确定。
临床医生报告说,他们努力减轻治疗负担,并与儿童及其家庭合作,管理他们的期望并支持他们的决策。然而,他们面临着系统限制的挑战,有时感到对儿童的长期结果负责的压力。需要进一步的研究来检验共同决策支持是否会促进策略的制定和改善儿童 CKD 的护理质量。