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.
Carnevale FA, Teachman G, Bogossian A. A Relational Ethics Framework for Advancing Practice with Children with Complex Health Care Needs and Their Parents. Compr Child Adolesc Nurs. 2017 Dec;40(4):268-284. doi: 10.1080/24694193.2017.1373162