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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...

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Autores principales: Fratantoni, Karen, Livingston, Jessica, Schellinger, Sandra E., Aoun, Samar M., Lyon, Maureen E.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
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.
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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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