Narrating a journey of preparation: Longitudinal interviews with parents who received prenatal and postnatal genetic information
Thursday, September 19, 2024
10:45 AM – 11:45 AM CT
Location: Midway 10 (First Floor)
Abstract: Prenatal diagnosis is often said to enable “preparation” for a child with a genetic condition, but this simple term belies a complex and multifaceted journey from receiving genetic information to birth and beyond. While thousands of families traverse this territory each year, this vulnerable period is challenging to study, and our understanding of what is meant by “preparation” is correspondingly poor. Our study aimed to develop a conceptual model for prenatal preparation by gathering parents’ experiences longitudinally between prenatal screening and a year after birth. These semi-structured interviews offer in-depth insights into the ways that parents digest genetic information, access medical services, find social support, and plan for the future. The narratives of five individual families selected from our multisite study illustrate the diversity of experiences of families receiving prenatal and postnatal genetic information; they also reflect cross-cutting themes and components within the concept of preparation. From a mother of a child with Down syndrome, we hear the ways that parents integrate genetic information into a holistic understanding of their child. From two families with rare genetic results, we discover the ways parents live with genomic uncertainty and the crucial role of medical and social supports. And from two families with life-limiting diagnoses, we learn how their diagnoses launched journeys of hope, uncertainty, love, and grief. Together, these stories demonstrate the power of longitudinal engagement with patients and families to provide rich narratives, helping illuminate an understudied body of experience.
Learning Objectives:
After participating in this conference, attendees should be able to:
Describe components of prenatal preparation for a child with a genetic condition, from the perspective of parents with diverse experiences.
Discuss the value of longitudinal research to help illuminate patient and family experience.
Kaitlynn Counihan, MA, MHM – Research Coordinator, Harvard University School of Medicine; Jewels Watts, MA – Research Assistant, Department of Bioethics, Case Western Reserve University School of Medicine; Kirsten Riggan, MA, MS – Research Coordinator, Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN; Megan Allyse, PhD – Associate Professor of Biomedical Ethics, Mayo Clinic, Jacksonville, Florida; Aaron Goldenberg, PhD – Professor, Research Director, and Vice Chair in the Department of Bioethics and Health Humanities, Department of Bioethics and Health Humanities, Case Western Reserve University School of Medicine; Marsha Michie, PhD – Associate Professor, Department of Bioethics; Associate Director, Bioethics Center for Community Health ANd Genomic Equity (CHANGE), Department of Bioethics and Health Humanities, Case Western Reserve University School of Medicine