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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases
Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947189/ https://www.ncbi.nlm.nih.gov/pubmed/35327817 http://dx.doi.org/10.3390/children9030445 |
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author | Fratantoni, Karen Livingston, Jessica Schellinger, Sandra E. Aoun, Samar M. Lyon, Maureen E. |
author_facet | Fratantoni, Karen Livingston, Jessica Schellinger, Sandra E. Aoun, Samar M. Lyon, Maureen E. |
author_sort | Fratantoni, Karen |
collection | PubMed |
description | Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and what mattered most to their child from the parent’s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease. |
format | Online Article Text |
id | pubmed-8947189 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-89471892022-03-25 Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases Fratantoni, Karen Livingston, Jessica Schellinger, Sandra E. Aoun, Samar M. Lyon, Maureen E. Children (Basel) Article Few studies have described the goals and wishes of parents caring for their children with rare diseases, specifically when children are unable to communicate their preferences directly. The purpose of this study was to describe the parent’s understanding of their child’s illness, goals of care, and what mattered most to their child from the parent’s perspective. Six families completed a feasibility study of the FAmily CEntered (FACE)-Rare pACP intervention. Qualitative content analysis was performed on transcripts of videotaped responses to the Respecting Choices Next Steps pACP Conversation facilitated conversation guide about the goals of care. Codes were grouped into themes, with direct participant quotations representing the themes. Five themes emerged: getting out and moving freely; feeling included and engaged; managing symptoms and disease burden; coordinating care among many care team members; and managing today and planning for the future. In the context of pACP, families reported that what mattered most to their children included the freedom of movement and human connection and engagement, while parents strived to be effective caregivers and advocates for their child with a rare and severely disabling disease. MDPI 2022-03-21 /pmc/articles/PMC8947189/ /pubmed/35327817 http://dx.doi.org/10.3390/children9030445 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 Fratantoni, Karen Livingston, Jessica Schellinger, Sandra E. Aoun, Samar M. Lyon, Maureen E. Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title | Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title_full | Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title_fullStr | Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title_full_unstemmed | Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title_short | Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases |
title_sort | family-centered advance care planning: what matters most for parents of children with rare diseases |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947189/ https://www.ncbi.nlm.nih.gov/pubmed/35327817 http://dx.doi.org/10.3390/children9030445 |
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