Electronic Thesis and Dissertation Repository

Degree

Doctor of Philosophy

Program

Health and Rehabilitation Sciences

Supervisor

Dr. Alan Leschied

Abstract

Often the first indication that something may be wrong in a seemingly normal pregnancy occurs during the first detailed ultrasound appointment between 16 and 20 weeks gestation. Even the most tentative suspicions of fetal anomalies is jarring. Parent’s default reality of a normal pregnancy and a ‘perfect child’ changes to one of risk factors and the possibility of an ‘unhealthy child’. This study begins with the realization of this first loss in a series of losses that follow for parents as they grapple with diagnostic information to be able to make informed medical decisions regarding their fetus and pregnancy. The study aims to explore the gap between clinical/ professional knowledge and the private worldviews of parents when they return home to process the information and make decisions.

This study was situated within a Canadian healthcare context that provides prenatal screening and medical care within a socialized medicine system. Using Grounded Theory methodology, this study bridges the disciplinary boundaries of Thanatology, Psychology, Bioethics and Reproductive medicine to explore the lived experience and the processes of personal/emotional decision making of parents, as well as a needs assessment of services.

The process of inquiry and the results will be discussed with relevance to scholars and clinicians on the context of end-of-life decision making that occurs within the prenatal context. Theoretical lens also examines the multiple death related and non-death losses as well as the reframed identity of parents and their unborn babies following a diagnosis of fetal anomalies.