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Planning with parents for seriously ill children: Preliminary results on the development of the parental engagement scale

Published online by Cambridge University Press:  22 November 2011

Joan A. Kearney  and
Mary W. Byrne
Joan A. Kearney*
Affiliation:
Columbia University School of Nursing, New York, New York
Mary W. Byrne
Affiliation:
Columbia University School of Nursing, New York, New York
*
Address correspondence and reprint requests to: Joan A Kearney, Columbia University School of Nursing, 630 West 168th Street New York, New York 10032. E-mail: [email protected]
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Abstract

Objective:

The objective of this study was to develop a clinically relevant tool to assess parental engagement in decision making and planning for seriously ill children during palliative care consultations. Although little is known about the structure and process of planning meetings between parents and providers, less is known about the nature of parental engagement as it relates to decision making ability in pediatric end-of-life care. Using attachment and caregiving as a framework, this study clarified important dimensions of parental engagement.

Method:

Using a multi-phase, template-matching technique, both literature and pediatric palliative care consultation data were analyzed, iteratively reviewed, matched, and categorized to create a measure of parental engagement. The attachment paradigm serves as the theoretical framework for the study, which focuses on parental engagement in decision making as a caregiving system function. Attachment and related literatures as well as coping and pediatric palliative care literatures were used in the initial conceptual sampling phase.

Results:

The study yielded two groups of findings. The first set of findings centered on the findings of the literature and consultation template-matching phases of the work. These two phases yielded a conceptual model of parental engagement as a psychobehavioral complex consisting of three dimensions: information-centered dialogue, insightful participation, and achievement of a collaboratively agreed-upon plan. The final phases consisted of creation of a 9 point Parental Engagement Scale, scoring of the consultations, and establishment of initial inter- rater reliability at .80. Psychometric testing continues.

Significance of results:

Parental engagement in decision making is a critical area for study and intervention. If we can support parents in their caregiving executive functions while understanding the psychological and emotional underpinnings of the caregiving system and parental engagement itself, we can move inquiry forward in understanding parental needs for intervention during this most profoundly challenging time.

Keywords

Pediatric palliative careParental engagementParental copingParental decision makingCollaborative planning
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 4 , December 2011 , pp. 367 - 376
Copyright
Copyright © Cambridge University Press 2011

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