Neglia Elizabeth, Anderson Ruth A, Brandon Debra, Docherty Sharron L
PhD Student, Duke University School of Nursing, Durham, NC, USA.
Virginia Stone Professor of Nursing, Senior Fellow in the Duke University Center for Ageing and Human Development and Research Development Coordinator, Duke University School of Nursing, Durham, NC, USA.
Eur J Pers Cent Healthc. 2013;1(2):417-424. doi: 10.5750/ejpch.v1i2.682.
Effective provider and caregiver communication is central to quality care during treatment for life-threatening illnesses. The study aim was to analyze communication patterns between providers and a parent of an infant with a life-threatening disease using the Adaptive Leadership Framework, which is an activity that involves mobilizing others to adapt to a difficult situation.
A secondary analysis was conducted on one case using 23 interviews with providers and mother of an infant diagnosed with Hurler's syndrome. The interviews focused on decision-making challenges in regard to the infant's treatment and were conducted over a 1-year period (pre-transplant, study entry, monthly, after a life-threatening event or substantial change in treatment and at 1-year post enrollment). Content analysis was used to identify and categorize communication patterns using concepts from the Adaptive Leadership Framework.
Infant illness events and parent-provider caregiving were chronicled across a 1-year trajectory. Despite the life-threatening nature of Hurler's disease, the parent and providers did not discuss palliative care or end-of-life. The parent sought direction and answers from the providers. The Adaptive Leadership Framework suggested how communication approaches were often mismatched with the needs of the parent.
The results of the study accentuate the need to improve communication between provider and parents about end-of-life for their child. Adaptive Leadership illuminates how providers can influence a parent's behavior when facing a challenging situation. This study suggests that Adaptive Leadership is a useful framework to guide research about healthcare communication in dealing with challenging issues.
有效的医疗服务提供者与照顾者之间的沟通是危及生命疾病治疗期间优质护理的核心。本研究旨在使用适应性领导框架分析医疗服务提供者与患有危及生命疾病的婴儿的父母之间的沟通模式，该框架是一项动员他人适应困难情况的活动。
对一个案例进行二次分析，该案例包含对23名医疗服务提供者以及一名被诊断患有黏多糖贮积症I型（Hurler综合征）婴儿的母亲的访谈。访谈聚焦于婴儿治疗方面的决策挑战，访谈持续了1年时间（移植前、研究开始时、每月一次、在发生危及生命的事件或治疗有重大变化后以及入组后1年）。采用内容分析法，运用适应性领导框架中的概念来识别和分类沟通模式。
婴儿疾病事件以及父母与医疗服务提供者的照顾情况记录在长达1年的时间轨迹中。尽管黏多糖贮积症I型具有危及生命的特性，但父母和医疗服务提供者并未讨论姑息治疗或临终关怀。父母向医疗服务提供者寻求指导和答案。适应性领导框架表明，沟通方式往往与父母的需求不匹配。
该研究结果凸显了改善医疗服务提供者与父母之间关于孩子临终关怀沟通的必要性。适应性领导阐明了医疗服务提供者在面对具有挑战性的情况时如何影响父母的行为。本研究表明，适应性领导是指导关于医疗保健沟通中应对具有挑战性问题的研究的有用框架。
