"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care

Title

"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care

Creator

Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ

Publisher

Children

Date

2022

Subject

caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer

Description

Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.

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

July List 2023

Collection

Citation

Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ, “"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care,” Pediatric Palliative Care Library, accessed July 20, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19115.