Document Type

Dissertation - Open Access

Award Date

2015

Degree Name

Doctor of Philosophy (PhD)

Department / School

Graduate Nursing

First Advisor

Mary Minton

Abstract

Problem: 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.
Design: A 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.
Methods: 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. Results: Parents in this study reported moderate levels of perceived emotional resources. 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. The most value most consistently reported as very important by the parents was their relationship with their spouse or significant other. 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.
Conclusions: 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. The utilization of the Go Wish card game also revealed that parents involved with palliative care for their child have very different priorities. The use of the Go Wish- Pediatrics intervention helps individualize communication to the priorities and needs of families.

Library of Congress Subject Headings

Children -- Diseases -- Palliative treatment
Terminally ill children -- Care
Terminal care -- Decision making
Communication in medicine
Advance directives (Medical care)

Description

Includes bibliographical references (pages 100-111)

Format

application/pdf

Number of Pages

149

Publisher

South Dakota State University

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Nursing Commons

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Rights Statement

In Copyright