Developing a Pediatric Advance Care Planning Worksheet

Lurie Children'S Hospital Of Chicago, Chicago IL

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): Dr. Michelson's long term career goals are to become a pediatric critical care physician scientist investigating interventions designed to improve end-of-life care and a nationally known expert in bioethics. To this end, Dr. Michelson has completed a Master's degree in Public Health and obtained funding to support research in pediatric end-of-life decision making. Her previous research used qualitative and quantitative methods to better understand the views of Pediatric Intensive Care Unit (PICU) patients'parents on end-of-life decision making. Her immediate goals are to increase her knowledge of and experience in qualitative methods, instrument development/testing, and bioethics so that she can become an independent investigator sustaining her research with external support. Her career development and training will be overseen by Dr. Joel Frader and Dr. Linda Emanuel. She will also receive support and guidance from a multidisciplinary mentorship committee. The research and training will take place at Children's Memorial Hospital, Northwestern University and the University of Chicago MacLean Center for Clinical Medical Ethics. Dr. Michelson's career development plan includes: 1) selective coursework in qualitative methods, instrument development/testing, health care communication, decision making, palliative care, bioethics, and manuscript preparation;2) conferences and seminars;3) participation in related research;and 4) gaining proficiency in conducting qualitative research and instrument development/testing. Her research purposes to develop and conduct a preliminary evaluation of an advance care planning worksheet for parents of PICU patients. Currently, no practice-derived, empirically-validated advance care planning tool exists in pediatrics. She will: 1) collect experiential data from parents of deceased children and PICU caregivers using qualitative methods;2) create the worksheet using the experiential data and other relevant resources;and 3) perform pilot testing of the worksheet using focus groups. After developing the worksheet, Dr. Michelson will obtain additional funding to do a study that evaluates the worksheet in the clinically setting and tests the hypothesis that the advance care planning worksheet will aid parents through the process of end-of-life decision making and facilitate communication between parents and caregivers thereby improving pediatric end-of-life care.