Date of Award

12-2011

Degree Type

Dissertation

Degree Name

Doctor of Education (EdD)

Department

Executive Leadership

First Supervisor

Mary Alice Donius

Second Supervisor

Dorothy Larkin

Abstract

This study explored the lived experiences of the family members who have participated in a Cardiogenetics Clinic at The Children’s Hospital at Montefiore, which utilizes an interprofessional approach to care. A qualitative phenomenological approach was used to explore the lived experience of the families. Families that are referred to the clinic have suffered the loss of a family member to sudden cardiac death (SCD). This interprofessional model of care offers information regarding SCD, a genetic profile to determine risk for SCD, an integrative collaborative approach to care as well as nursing, medical interventions, psychological support, and counseling. The theory of health as expanding consciousness and science of unitary human beings theory were used to gain insight into how the interprofessional care provided by the Cardiogenetics Clinics influenced SCD families’ understanding of their lived experiences. Insights gained may allow the interprofessional team to improve the quality of care being provided to SCD family members as well as establish a new model of care for genetic testing and disease management.

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