Go-Wish Pediatrics: Pilot Study of a Conversation Tool in Pediatric Palliative Care

Abstract

Research Poster Presented at NAPNAP's 2017 Posters On The Move, 38th National NAPNAP Conference on Pediatric Health Care, March 16, 2017, Denver, CO. The twofold purpose of this embedded mixed method pilot study is to explore the use of an advance care planning conversation tool with parents caring for children suffering from a life-threatening illness and to examine the parent experience of a child's illness while caring for a child receiving pediatric palliative care. Difficult conversations and decisions are an unfortunate reality for parents caring for children facing life threatening conditions. Confusing, inadequate, and inconsistent communication by health care providers makes advance care planning difficult in pediatrics. 1. Describe parents' experience of having a child in pediatric palliative care as measured by the Parent Experience of Childhood Illness (PECI) tool. 2. Explore relationships among the parents' experience (PECI) and pediatric disease demographics. 3. Identify the effect of Go-Wish Pediatrics on parents' experience of having a child in pediatric palliative care. 4. Describe parents' experience of using Go-Wish Pediatrics. An embedded mixed methods design was utilized to evaluate the effectiveness of an advance care planning conversation tool, Go-Wish Pediatrics, on the emotional resources and distress experienced by parents caring for children in palliative care. For this pilot study, a mailed invitation to participate was sent to 134 parents of children currently enrolled in palliative care which yielded a total of ten participants. The intervention was adapted from The Go-Wish Game developed by Dr. Elizabeth Menkin and the Coda Alliance for use in the geriatric population. The Go-Wish Pediatrics intervention resulted in no change in pre-post comparison of guilt and worry, unresolved sorrow and anger, long term uncertainty, and emotional resources. For the qualitative portion of the study, data was collected using semi-structured interviews and analyzed using a thematic analysis. The three emerging themes of the parents' perception of the Go-Wish Pediatrics intervention included operationalizing thoughts into action, empowered to join the conversation, and a lighthouse in the fog. The mixed methods analysis utilized comments from the participant interviews to explore a deeper explanation of how parents experienced the parental distress and emotional resources subcategories. Parents identified that the Go-Wish Pediatrics intervention was beneficial in helping initiate conversations related to topics that are often difficult to approach. The intervention also served a communication bridge to support communication between spouses or significant others as well as with the healthcare team.