Spiritual Frameworks in Pediatric Palliative Care: Understanding Parental Decision-making

Parents of seriously ill children are charged with making complicated medical decisions, and many of those decisions are made during their children’s hospitalizations. As medical staff seek to support parents, it is important for them to understand what resources parents are drawing upon for decision-making. This project explored parental decision-making by examining the following research questions: RQ1: What resources do parents draw upon to make medical decisions for their seriously ill children? RQ2: How do parents enact their spiritual or religious frameworks in clinical settings when faced with medical decisions for their seriously ill children? Methods of research included ethnographic observation of a pediatric palliative care team and semi-structured interviews with twenty parents and grandparents of seriously ill children. Analysis of the interview data brought out three main themes: the role of spirituality for parents of seriously ill children, the ways parents perceive spiritual conversations with hospital personnel, and the role of spirituality for parents making difficult decisions. A case study is presented as an exemplar of complex decision-making, and the author offers her personal narratives of parenting a seriously ill child. The author suggests new directions for practitioners based on a constitutive approach to communication in which practitioners and parents work together to build towards an understanding of the child’s illness. The findings from this study contribute to the current understanding of families with seriously ill children and should shape medical education in a way that will benefit the next generation of professional care providers as they seek to meet the needs of children and their families