An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease
Objective: Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations t...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-12-01
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| Series: | PEC Innovation |
| Subjects: | |
| Online Access: | http://www.sciencedirect.com/science/article/pii/S277262822400013X |
| _version_ | 1797303885436551168 |
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| author | Kelly W. Harris Kelsey Schweiberger Ann Kavanaugh-McHugh Robert M. Arnold Jessica Merlin Judy C. Chang Nadine A. Kasparian |
| author_facet | Kelly W. Harris Kelsey Schweiberger Ann Kavanaugh-McHugh Robert M. Arnold Jessica Merlin Judy C. Chang Nadine A. Kasparian |
| author_sort | Kelly W. Harris |
| collection | DOAJ |
| description | Objective: Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations to identify the topics of uncertainty discussed. Methods: In this observational, qualitative study, initial fetal cardiology consultations were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively and deductively developed and applied. This content analysis focused on uncertainty-related codes and associated themes. Results: During 19 consultations including five clinicians, 13 different cardiac diagnoses were discussed (seven with high mortality risk). Median consultation length was 37 min (IQR: 26–51), with only 11% of words spoken by families. On average, 51% of total words spoken focused on uncertainty in relation to cardiac diagnosis, etiology, comorbidities, prognosis, childbirth, therapeutics, and logistics. Family-initiated discussion on uncertainty largely focused on childbirth and pregnancy and postpartum logistics. Conclusions: Half of dialogue within initial fetal cardiology encounters discussed uncertainty surrounding prenatally diagnosed cCHD. Parent and clinician perspectives should be gathered on the essential content and optimal delivery of uncertainty-related topics. Innovation: This study is conceptually and methodologically innovative as one of the first to examine audio-recorded dialogue between fetal cardiology clinicians and families. |
| first_indexed | 2024-03-08T00:00:04Z |
| format | Article |
| id | doaj.art-b7c968f3d7e84da7b753535cc77c3c6e |
| institution | Directory Open Access Journal |
| issn | 2772-6282 |
| language | English |
| last_indexed | 2024-03-08T00:00:04Z |
| publishDate | 2024-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | PEC Innovation |
| spelling | doaj.art-b7c968f3d7e84da7b753535cc77c3c6e2024-02-18T04:44:47ZengElsevierPEC Innovation2772-62822024-12-014100265An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart DiseaseKelly W. Harris0Kelsey Schweiberger1Ann Kavanaugh-McHugh2Robert M. Arnold3Jessica Merlin4Judy C. Chang5Nadine A. Kasparian6Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA; Corresponding author at: University of Pittsburgh Medical Center, Montefiore, Suite 933W, 200 Lothrop Street, Pittsburgh, PA 15213, United States of America.Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, USADepartment of Pediatrics, Vanderbilt University Medical Center, Nashville, TN, USADepartment of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USADepartment of General Internal Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USADepartment of Obstetrics, Gynecology, and Reproductive Sciences, University of Pittsburgh School of Medicine, Pittsburgh, PA, USADepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USAObjective: Families who receive a prenatal diagnosis of complex congenital heart disease (cCHD) often experience severe psychological distress and identify uncertainty as a key source of that distress. This study examined clinician-family conversations during initial fetal cardiology consultations to identify the topics of uncertainty discussed. Methods: In this observational, qualitative study, initial fetal cardiology consultations were audio-recorded, transcribed verbatim, and coded by two independent coders. A codebook was inductively and deductively developed and applied. This content analysis focused on uncertainty-related codes and associated themes. Results: During 19 consultations including five clinicians, 13 different cardiac diagnoses were discussed (seven with high mortality risk). Median consultation length was 37 min (IQR: 26–51), with only 11% of words spoken by families. On average, 51% of total words spoken focused on uncertainty in relation to cardiac diagnosis, etiology, comorbidities, prognosis, childbirth, therapeutics, and logistics. Family-initiated discussion on uncertainty largely focused on childbirth and pregnancy and postpartum logistics. Conclusions: Half of dialogue within initial fetal cardiology encounters discussed uncertainty surrounding prenatally diagnosed cCHD. Parent and clinician perspectives should be gathered on the essential content and optimal delivery of uncertainty-related topics. Innovation: This study is conceptually and methodologically innovative as one of the first to examine audio-recorded dialogue between fetal cardiology clinicians and families.http://www.sciencedirect.com/science/article/pii/S277262822400013XCommunicationUncertaintyParent experienceFetalDiagnosisCongenital heart disease |
| spellingShingle | Kelly W. Harris Kelsey Schweiberger Ann Kavanaugh-McHugh Robert M. Arnold Jessica Merlin Judy C. Chang Nadine A. Kasparian An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease PEC Innovation Communication Uncertainty Parent experience Fetal Diagnosis Congenital heart disease |
| title | An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease |
| title_full | An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease |
| title_fullStr | An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease |
| title_full_unstemmed | An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease |
| title_short | An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease |
| title_sort | observational study of dialogue about uncertainty in clinician family counseling conversations following prenatal diagnosis of complex congenital heart disease |
| topic | Communication Uncertainty Parent experience Fetal Diagnosis Congenital heart disease |
| url | http://www.sciencedirect.com/science/article/pii/S277262822400013X |
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