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

BMC Palliative Care

Debate

Pamela S Hinds¹  David A Munson²  Douglas L Hill²  Wynne E Morrison²  Victoria Miller²  Karen W Carroll²  Jennifer K Walter²  Tammy I Kang²  Chris Feudtner³ 

[1] Children’s National Health Systems, Washington, DC, USA;The Children’s Hospital of Philadelphia, Philadelphia, PA, USA;The Children’s Hospital of Philadelphia, Philadelphia, PA, USA;The Children’s Hospital of Philadelphia, General Pediatrics – 3535 Market Street, Room 1523, 34th, Civic Center Boulevard, 19104, Philadelphia, PA, USA;

关键词: Parental decision making;    Pediatric palliative care;    Goals;    Disengagement;    Reengagement;    Regoaling;    Positive affect;    Negative affect;    Hopeful thinking;    Conceptual model;   

DOI  :  10.1186/1472-684X-13-9

 received in 2013-11-15, accepted in 2014-03-07,  发布年份 2014

来源: Springer

【 摘 要 】

BackgroundParents 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.DiscussionRegoaling 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.SummaryThe 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.

【 授权许可】

Unknown   
© Hill et al.; licensee BioMed Central Ltd. 2014. This article is published under license to BioMed Central Ltd. 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.