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

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. Methods: The CSNAT (Paediatric) intervention consisted of two assessme...

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Autores principales: Aoun, Samar M., Stegmann, Roswitha, Deleuil, Renee, Momber, Suzanne, Cuddeford, Lisa, Phillips, Marianne B., Lyon, Maureen E., Gill, Fenella J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947323/
https://www.ncbi.nlm.nih.gov/pubmed/35327694
http://dx.doi.org/10.3390/children9030322
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author Aoun, Samar M.
Stegmann, Roswitha
Deleuil, Renee
Momber, Suzanne
Cuddeford, Lisa
Phillips, Marianne B.
Lyon, Maureen E.
Gill, Fenella J.
author_facet Aoun, Samar M.
Stegmann, Roswitha
Deleuil, Renee
Momber, Suzanne
Cuddeford, Lisa
Phillips, Marianne B.
Lyon, Maureen E.
Gill, Fenella J.
author_sort Aoun, Samar M.
collection PubMed
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. Methods: 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. Results: 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. Conclusions: 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.
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spelling pubmed-89473232022-03-25 “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care Aoun, Samar M. Stegmann, Roswitha Deleuil, Renee Momber, Suzanne Cuddeford, Lisa Phillips, Marianne B. Lyon, Maureen E. Gill, Fenella J. Children (Basel) Article 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. Methods: 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. Results: 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. Conclusions: 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. MDPI 2022-03-01 /pmc/articles/PMC8947323/ /pubmed/35327694 http://dx.doi.org/10.3390/children9030322 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Aoun, Samar M.
Stegmann, Roswitha
Deleuil, Renee
Momber, Suzanne
Cuddeford, Lisa
Phillips, Marianne B.
Lyon, Maureen E.
Gill, Fenella J.
“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
title_full “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
title_fullStr “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
title_full_unstemmed “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
title_short “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care
title_sort “it is a whole different life from the life i used to live”: assessing parents’ support needs in paediatric palliative care
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947323/
https://www.ncbi.nlm.nih.gov/pubmed/35327694
http://dx.doi.org/10.3390/children9030322
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