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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