Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Title

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

Creator

Szabat M

Identifier

Publisher

Nursing inquiry

Date

2020

Subject

article; care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; female; grounded theory; human; intensive care unit; male; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son

Description

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2020 List

Collection

Citation

Szabat M, “Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18,” Pediatric Palliative Care Library, accessed October 21, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17013.

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