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Open Access Highly Accessed Debate

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

Douglas L Hill1, Victoria Miller1, Jennifer K Walter1, Karen W Carroll1, Wynne E Morrison1, David A Munson1, Tammy I Kang1, Pamela S Hinds2 and Chris Feudtner13*

Author Affiliations

1 The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

2 Children’s National Health Systems, Washington, DC, USA

3 The Children’s Hospital of Philadelphia, General Pediatrics – 3535 Market Street, Room 1523, 34th, Civic Center Boulevard, Philadelphia, PA 19104, USA

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BMC Palliative Care 2014, 13:9  doi:10.1186/1472-684X-13-9

Published: 13 March 2014

Abstract

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.

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