التفاصيل البيبلوغرافية
| العنوان: |
Information is power: The experiences, attitudes and needs of individuals who chose to have prenatal genomic sequencing for fetal anomalies |
| المؤلفون: |
Kernie, Catherine G., Wynn, Julia, Rosenbaum, Allison, de Voest, Jessica, Galloway, Stephanie, Giordano, Jessica, Stover, Samantha, Westerfield, Lauren, Gilmore, Kelly, Wapner, Ronald J., Van den Veyver, Ignatia B., Vora, Neeta L., Clifton, Rebecca G., Caughey, Aaron B., Chung, Wendy K. |
| المساهمون: |
National Institute of Child Health and Human Development |
| المصدر: |
Prenatal Diagnosis ; volume 42, issue 7, page 947-954 ; ISSN 0197-3851 1097-0223 |
| بيانات النشر: |
Wiley |
| سنة النشر: |
2022 |
| المجموعة: |
Wiley Online Library (Open Access Articles via Crossref) |
| الوصف: |
Objective This study sought to evaluate the experiences of individuals who chose to participate in a study and receive prenatal genomic sequencing (pGS) for fetuses with congenital structural anomalies. Method Individuals who received research results of prenatal sequencing were invited to participate in semi‐structured interviews about their experiences. A constructivist grounded theory approach was used to code and analyze interviews. Results Thirty‐three participants from 27 pregnancies were interviewed. Participants were motivated to enroll in the study to find out more about their fetus' condition and prepare for the future. The waiting period was a time of significant anxiety for participants. Most participants felt relief and closure upon receiving results, regardless of the category of result, and had a clear understanding of the implications of the results. Conclusion Participants' experiences with pGS were often intertwined with the experience of having a fetus with an abnormality. Participants were satisfied with the decision to participate in research and the support they received from the healthcare team, although waiting for results was associated with anxiety. The healthcare team plays an integral role in setting expectations and validating feelings of anxiety, fear and uncertainty. |
| نوع الوثيقة: |
article in journal/newspaper |
| اللغة: |
English |
| DOI: |
10.1002/pd.6153 |
| الإتاحة: |
https://doi.org/10.1002/pd.6153Test |
| حقوق: |
http://onlinelibrary.wiley.com/termsAndConditions#vorTest |
| رقم الانضمام: |
edsbas.4C3198BC |
| قاعدة البيانات: |
BASE |
