Improving Knowledge of the Spiritual and Emotional Experiences and Needs of Parents with Fetuses Diagnosed with a Life-limiting Condition and Receiving Care in the Riley Fetal Center

Congenital anomalies occur in approximately 3% of live births and are the leading cause of perinatal death. Parents faced with these diagnoses experience unexpected trauma and grief, loss of anticipated parenting roles, and frequent complex, high stakes decision making. The diagnosis of a fetal anomaly with low possibility for a cure or survival creates an emotional and spiritual crisis for many parents. The objective of this study is to improve holistic care in the Riley Fetal Center for parents who have received a life-limiting fetal diagnosis and have decided to continue their pregnancy. Eligible patients were identified and recruited to participate in qualitative interviews exploring their experience receiving care from the Riley Fetal Center and their experiences being given and living with a life-challenging fetal diagnosis. An interview guide was developed based on previous chaplain notes from meeting with parents. To date 67 interviews have been conducted. All interviews are taped and transcribed. Transcribed interviews are being analyzed by members of the research team using qualitative techniques. The results will be used to identify key themes and develop a thick description of the spiritual and emotional experiences and needs of these parents in order to improve care within the Riley Fetal Center.

Supervisor: Ann H. Cottingham 
Department: Center for Health Services Research at Regenstrief Institute