Becoming a Parent Following a Fetal Heart Defect Diagnosis: Getting Through It

1. Society for Research in Child Development Biennial Meeting 2011 Becoming a Parent Following a Fetal Heart Defect Diagnosis: Getting Through It Anne Chevalier McKechnie, PhD-candidate, RN, IBCLC Audrey Tluczek, PhD, RN Karen Pridham, PhD, RN, FAAN

2. Background • 6% of infants born with severe structural anomalies • Prenatal diagnosis results from routine ultrasound screening at 18-22 weeks of pregnancy • 40% (range 13%-82%) detected before birth • Fetal Heart Defect Diagnosis (FHDD) is one of the most common diagnoses

3. Study Design • Conceptual Framework • Attachment & Caregiving, Motivation • Research Question • What processes do expectant parents with a prenatal diagnosis perceive and engage in that are related to parenting and caregiving before birth? • Method • Qualitative component of this mixed method study

4. Purpose Develop a conceptual model based on expectant parent perceptions of and engagement in the processes involved in becoming a parent after a FHDD

5. Methods Data Collection • In-depth interviews • Expectant parents’ homes • 3rd trimester of pregnancy • Audio-recorded for transcription

6. Methods Interview Questions “Tell me about the pregnancy.” “What are you working on?” “What is most important for you now?...as a parent to this child?” “How do you see life with your child after birth?...at 6 months?...at your child’s first birthday?”

7. Participants Expectant Parents with FHDD n=6 women; n=6 men Married and self-identified as European American Age 23-35 years 83% had at least some college education Recruited from 2 specialty care centers in Wisconsin

8. Dimensional Analysis • “What all is involved” • Open Coding • Axial Coding • Selective Coding • Memo Writing and Conceptual Mapping

10. “…the doctor just kinda came in and rattled off like - five things - that could potentially be wrong, and - then from there, uhm - kinda everything changed.”

12. Findings Degree of Shifting Away from Normal Level of Hope and Familiarity Acceptance of the diagnosis Perception of the medical domain within the personal domain

13. Findings Experiencing Shifting Away from Normal Immediate concerns Longer term uncertainty Possible scenarios

15. Findings Reclaiming a Balance Controlling what can be controlled “Keeping the baby inside” Protecting physical and mental health Asking the right questions Determining a Frame of Mind Taking a Wait and See Approach Choosing a Reality Developing Mental flexibility

17. Implications Impact on Mental Health Perceived communication with clinicians Impact on Parent-Child Relationship Degree and experience of shifting away from normal Willingness and ability to engage in reclaiming a balance Interventions Emotional & Cognitive needs Optimize processes of reclaiming

18. Acknowledgments Audrey Tluczek, PhD, RN and Karen Pridham, PhD, RN, FAAN for their mentorship Mary Krolikowski, RN, MSN, at Children’s Hospital of Wisconsin and Shardha Srinivasan, MD and Jayme Frank, RN, APNP at Meriter Hospital for their clinical knowledge and recruitment efforts. This work was supported by the American Nurses Foundation 2008-073, as well as a National Institutes of Nursing Research Traineeship T32NR007102, Wisconsin Distinguished Fellowship and National Research Service Award F31NR011563

19. To Participants Thank You