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Regoaling: a conceptual model of how parents of children with serious illness change medical care goals

BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, ot...

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Autores principales: Hill, Douglas L, Miller, Victoria, Walter, Jennifer K, Carroll, Karen W, Morrison, Wynne E, Munson, David A, Kang, Tammy I, Hinds, Pamela S, Feudtner, Chris
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3975157/
https://www.ncbi.nlm.nih.gov/pubmed/24625345
http://dx.doi.org/10.1186/1472-684X-13-9
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author Hill, Douglas L
Miller, Victoria
Walter, Jennifer K
Carroll, Karen W
Morrison, Wynne E
Munson, David A
Kang, Tammy I
Hinds, Pamela S
Feudtner, Chris
author_facet Hill, Douglas L
Miller, Victoria
Walter, Jennifer K
Carroll, Karen W
Morrison, Wynne E
Munson, David A
Kang, Tammy I
Hinds, Pamela S
Feudtner, Chris
author_sort Hill, Douglas L
collection PubMed
description BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling. DISCUSSION: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. SUMMARY: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process.
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spelling pubmed-39751572014-04-05 Regoaling: a conceptual model of how parents of children with serious illness change medical care goals Hill, Douglas L Miller, Victoria Walter, Jennifer K Carroll, Karen W Morrison, Wynne E Munson, David A Kang, Tammy I Hinds, Pamela S Feudtner, Chris BMC Palliat Care Debate BACKGROUND: Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have become exceedingly unlikely. While some parents continue to pursue these goals, others relinquish their initial goals and generate new goals such as maintaining the child’s quality of life. We call this process of transitioning from one set of goals to another regoaling. DISCUSSION: Regoaling involves factors that either promote or inhibit the regoaling process, including disengagement from goals, reengagement in new goals, positive and negative affect, and hopeful thinking. We examine these factors in the context of parental decision making for a seriously ill child, presenting a dynamic conceptual model of regoaling. This model highlights four research questions that will be empirically tested in an ongoing longitudinal study of medical decision making among parents of children with serious illness. Additionally, we consider potential clinical implications of regoaling for the practice of pediatric palliative care. SUMMARY: The psychosocial model of regoaling by parents of children with a serious illness predicts that parents who experience both positive and negative affect and hopeful patterns of thought will be more likely to relinquish one set of goals and pursue a new set of goals. A greater understanding of how parents undergo this transition may enable clinicians to better support them through this difficult process. BioMed Central 2014-03-13 /pmc/articles/PMC3975157/ /pubmed/24625345 http://dx.doi.org/10.1186/1472-684X-13-9 Text en Copyright © 2014 Hill et al.; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Debate
Hill, Douglas L
Miller, Victoria
Walter, Jennifer K
Carroll, Karen W
Morrison, Wynne E
Munson, David A
Kang, Tammy I
Hinds, Pamela S
Feudtner, Chris
Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title_full Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title_fullStr Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title_full_unstemmed Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title_short Regoaling: a conceptual model of how parents of children with serious illness change medical care goals
title_sort regoaling: a conceptual model of how parents of children with serious illness change medical care goals
topic Debate
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3975157/
https://www.ncbi.nlm.nih.gov/pubmed/24625345
http://dx.doi.org/10.1186/1472-684X-13-9
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