1 40 2 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Special Edition #1 2022 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Special Edition #1 2022 List URL Address <a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1002/jgc4.1353</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences Publisher An entity responsible for making the resource available Journal of Genetic Counseling Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource genetic counseling; lived experience; neonates; Decisional regret; genome-wide sequencing Creator An entity primarily responsible for making the resource Aldridge CE; Osiovich H; Siden H; Elliott AM Description An account of the resource Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 2022 Special Edition 1 - Parent Perspectives Aldridge CE Decisional regret Elliott AM Genetic Counseling genome-wide sequencing Journal of Genetic Counseling lived experience Neonates Osiovich H Siden H Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource December 2020 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month December 2020 List URL Address <a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1002/jgc4.1353</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences Publisher An entity responsible for making the resource available Journal of Genetic Counseling Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource Decisional regret; genetic counseling; genome-wide sequencing; lived experience; neonates Creator An entity primarily responsible for making the resource Aldridge CE; Osiovich H; Siden H; Elliott AM Description An account of the resource Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2020 Aldridge CE December 2020 List Decisional regret Elliott AM Genetic Counseling genome-wide sequencing Journal of Genetic Counseling lived experience Neonates Osiovich H Siden H