Carnevale Franco A, Teachman Gail, Bogossian Aline
a Ingram School of Nursing , McGill University , Montreal , Canada.
b Centre for Research on Children and Families , McGill University , Montreal , Canada.
Compr Child Adolesc Nurs. 2017 Dec;40(4):268-284. doi: 10.1080/24694193.2017.1373162. Epub 2017 Nov 21.
Children with complex health care needs are an emerging population that commonly requires long-term supportive services. A growing body of evidence has highlighted that these children and their families experience significant challenges. Many of these challenges involve ethical concerns that have been under-recognized. In this article, we (a) outline ethical concerns that arise in clinical practice with children with complex health care needs and their families (e.g.: exclusion of children's voices in discussions and decisions that affect them; difficulties in defining their best interests; clashes across the array of social roles that parents manage; limited recognition of the ethical significance of parents' and other family members' interests) and (b) propose a relational ethics framework for addressing these concerns. Our framework draws on hermeneutical interpretation and moral experience as foundational orientations, recognizing children with complex health care needs as relationally embedded agents, who while dependent and entitled to protection, are simultaneously agential. Children's and parents' interests are relationally intertwined and interdependent. Families are recognized as significant social microcosms for the cultivation and transmission of intergenerational cultural heritage, narratives, and outlooks. We describe strategies for (a) conducting a relational ethics inquiry and (b) reconciliation of identified ethical concerns through a process of rapprochement. A relational ethics framework can promote clinical practices that are ethically attuned to the complexity of this population's needs.
有复杂医疗需求的儿童是一个新兴群体,通常需要长期的支持性服务。越来越多的证据表明,这些儿童及其家庭面临着重大挑战。其中许多挑战涉及到尚未得到充分认识的伦理问题。在本文中,我们(a)概述了在为有复杂医疗需求的儿童及其家庭提供临床服务时出现的伦理问题(例如:在影响儿童的讨论和决策中忽视儿童的声音;难以界定他们的最大利益;父母所承担的一系列社会角色之间的冲突;对父母和其他家庭成员利益的伦理重要性认识有限),(b)并提出了一个关系伦理学框架来解决这些问题。我们的框架以诠释学解释和道德经验为基础导向,将有复杂医疗需求的儿童视为关系嵌入的主体,他们虽然依赖他人并有权获得保护,但同时也具有能动性。儿童和父母的利益在关系上相互交织且相互依存。家庭被视为培养和传承代际文化遗产、叙事和观念的重要社会缩影。我们描述了(a)进行关系伦理学探究以及(b)通过和解过程化解已识别伦理问题的策略。一个关系伦理学框架可以促进在伦理上适应这一群体复杂需求的临床实践。