Parents' Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit
BACKGROUND: It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents' experiences with GS as a first-line diagnostic tool for infants with suspected genetic conditions in the NICU.
METHODS: Parents of newborns (N = 62) suspected of having a genetic condition were recruited across five hospitals in the southeast United States as part of the SouthSeq study. Semi-structured interviews (N = 78) were conducted after parents received their child's sequencing result (positive, negative, or variants of unknown significance). Thematic analysis was performed on all interviews.
RESULTS: Key themes included that (1) GS in infancy is important for reproductive decision making, preparing for the child's future care, ending the diagnostic odyssey, and sharing results with care providers; (2) the timing of disclosure was acceptable for most parents, although many reported the NICU environment was overwhelming; and (3) parents deny that receiving GS results during infancy exacerbated parent-infant bonding, and reported variable impact on their feelings of guilt.
CONCLUSION: Parents reported that GS during the neonatal period was useful because it provided a "backbone" for their child's care. Parents did not consistently endorse negative impacts like interference with parent-infant bonding.
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2023 |
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| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:13 |
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| Enthalten in: |
Journal of personalized medicine - 13(2023), 7 vom: 21. Juni |
| Sprache: |
Englisch |
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| Links: |
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| Themen: |
Genome sequencing |
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| Anmerkungen: |
Date Revised 01.08.2023 published: Electronic Citation Status PubMed-not-MEDLINE |
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| doi: |
10.3390/jpm13071026 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| 100 | 1 | |a Lemke, Amy A |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Parents' Perspectives on the Utility of Genomic Sequencing in the Neonatal Intensive Care Unit |
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| 500 | |a Date Revised 01.08.2023 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status PubMed-not-MEDLINE | ||
| 520 | |a BACKGROUND: It is critical to understand the wide-ranging clinical and non-clinical effects of genome sequencing (GS) for parents in the NICU context. We assessed parents' experiences with GS as a first-line diagnostic tool for infants with suspected genetic conditions in the NICU | ||
| 520 | |a METHODS: Parents of newborns (N = 62) suspected of having a genetic condition were recruited across five hospitals in the southeast United States as part of the SouthSeq study. Semi-structured interviews (N = 78) were conducted after parents received their child's sequencing result (positive, negative, or variants of unknown significance). Thematic analysis was performed on all interviews | ||
| 520 | |a RESULTS: Key themes included that (1) GS in infancy is important for reproductive decision making, preparing for the child's future care, ending the diagnostic odyssey, and sharing results with care providers; (2) the timing of disclosure was acceptable for most parents, although many reported the NICU environment was overwhelming; and (3) parents deny that receiving GS results during infancy exacerbated parent-infant bonding, and reported variable impact on their feelings of guilt | ||
| 520 | |a CONCLUSION: Parents reported that GS during the neonatal period was useful because it provided a "backbone" for their child's care. Parents did not consistently endorse negative impacts like interference with parent-infant bonding | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a genome sequencing | |
| 650 | 4 | |a parental guilt | |
| 650 | 4 | |a parent–infant bonding | |
| 650 | 4 | |a timing of disclosure of results | |
| 650 | 4 | |a utility | |
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