A Shared Decision-Making Process Utilizing a Decision Coach in Pediatric Epilepsy Surgery

Authors

Michelle KregelFollow
Natalie EvansFollow
Bonnie WootenFollow
Craig Campbell, University of Western OntarioFollow
Sandrine de RibaupierreFollow
Andrea Andrade, Western UniversityFollow

Document Type

Article

Publication Date

6-1-2023

Journal

Pediatric Neurology

Volume

143

First Page

13

Last Page

18

URL with Digital Object Identifier

https://doi.org/10.1016/j.pediatrneurol.2023.02.012

Abstract

BACKGROUND & RATIONALE: The process to evaluate candidacy for epilepsy surgery is lengthy and stressful for caregivers, therefore the decision can be challenging. There is not a lot of information in regard to how families of a child living with epilepsy navigate the stressful decision during surgical candidacy evaluation. With difficult decisions comes the possibility of increased decisional conflict in both the child and the family.

METHODS: A project designed to provide greater knowledge to the family was conducted utilizing the shared decision-making (SDM) process to assist families in the decision-making during surgical candidacy evaluation; this was done using a decision coach, who is an unbiased health care professional, providing families with evidence-based information and support tools while supporting them in making decisions based on their values.

RESULTS: Results reveal that 90% (45 of 50) of families offered a consult with the decision coach agreed to participate. For these families, 78% (35 of 45) felt they were ready to move forward with surgery after the consult and 22% (10 of 45) felt they needed more information and testing. There was a significant improvement in the level of decisional conflict, uncertainty, and perception of preparation for decision making for the caregivers between the first and second consult, although 60% of families did not complete the postconflict survey.

CONCLUSIONS: The SDM process assists families in their need for more knowledge regarding risks, benefits, and options for treatment before making a surgical choice. SDM utilizing an impartial decision coach outside the direct circle of care and individualized epilepsy surgery education aids improves parental decision conflict and satisfaction.

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