Guilt and Regret Experienced by Parents of Children Born Extremely Preterm
To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. Parents of infants born
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| Veröffentlicht in: | The Journal of pediatrics 2023-06, Vol.257, p.113268-113268, Article 113268 |
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| container_end_page | 113268 |
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| container_title | The Journal of pediatrics |
| container_volume | 257 |
| creator | Thivierge, Emilie Luu, Thuy Mai Bourque, Claude Julie Duquette, Laurie-Anne Pearce, Rebecca Jaworski, Magdalena Barrington, Keith J. Synnes, Anne Janvier, Annie |
| description | To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret.
Parents of infants born |
| doi_str_mv | 10.1016/j.jpeds.2022.10.042 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2747007434</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><els_id>S0022347622010198</els_id><sourcerecordid>2747007434</sourcerecordid><originalsourceid>FETCH-LOGICAL-c359t-ff002bd098fa59794bb14453b209d42c826c4cc17acd0dc6ec16832c19ddb2fd3</originalsourceid><addsrcrecordid>eNp9kMtOwzAQRS0EouXxBUgoSzYJ40eSesECqlJAlUAI1lZiTyBRHsVOEP17XFJYsrI8Ptczcwg5oxBRoMllFVVrNC5iwJivRCDYHplSkGmYzDjfJ1PwLyEXaTIhR85VACAFwCGZ8EQkXPJ4Sh6WQ1n3Qdaa4BnfLPbB4muNtsRWownyTfCUWWx7F3RFMH8va-NvwU1nW8_1FhusPeJjaJsTclBktcPT3XlMXm8XL_O7cPW4vJ9fr0LNY9mHReHHyg3IWZHFMpUiz6kQMc8ZSCOYnrFEC61pmmkDRieoqV-HaSqNyVlh-DG5GP9d2-5jQNerpnQa6zprsRucYqlIAVLBhUf5iGrbOWexUGtbNpndKApqK1FV6kei2krcFr1EnzrfNRjyBs1f5teaB65GAP2anyVa5fRorLSoe2W68t8G30lHg5c</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2747007434</pqid></control><display><type>article</type><title>Guilt and Regret Experienced by Parents of Children Born Extremely Preterm</title><source>Elsevier ScienceDirect Journals</source><creator>Thivierge, Emilie ; Luu, Thuy Mai ; Bourque, Claude Julie ; Duquette, Laurie-Anne ; Pearce, Rebecca ; Jaworski, Magdalena ; Barrington, Keith J. ; Synnes, Anne ; Janvier, Annie</creator><creatorcontrib>Thivierge, Emilie ; Luu, Thuy Mai ; Bourque, Claude Julie ; Duquette, Laurie-Anne ; Pearce, Rebecca ; Jaworski, Magdalena ; Barrington, Keith J. ; Synnes, Anne ; Janvier, Annie</creatorcontrib><description>To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret.
Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: “Knowing what you know now, is there anything you would have done differently?” Mixed methods were used to analyze responses.
In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret.
Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.</description><identifier>ISSN: 0022-3476</identifier><identifier>EISSN: 1097-6833</identifier><identifier>DOI: 10.1016/j.jpeds.2022.10.042</identifier><identifier>PMID: 36463935</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>bioethics ; decision regret ; decision-making ; ethics ; family integrated care ; guilt ; high-risk pregnancy ; neonatology ; neurodevelopmental impairment ; palliative care ; parental perspectives ; parental role ; pediatrics ; prematurity ; regret ; self-care ; withholding and withdrawing life-sustaining interventions</subject><ispartof>The Journal of pediatrics, 2023-06, Vol.257, p.113268-113268, Article 113268</ispartof><rights>2022 Elsevier Inc.</rights><rights>Copyright © 2022 Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c359t-ff002bd098fa59794bb14453b209d42c826c4cc17acd0dc6ec16832c19ddb2fd3</citedby><cites>FETCH-LOGICAL-c359t-ff002bd098fa59794bb14453b209d42c826c4cc17acd0dc6ec16832c19ddb2fd3</cites><orcidid>0000-0002-5462-9352</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S0022347622010198$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>314,776,780,3536,27903,27904,65309</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36463935$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Thivierge, Emilie</creatorcontrib><creatorcontrib>Luu, Thuy Mai</creatorcontrib><creatorcontrib>Bourque, Claude Julie</creatorcontrib><creatorcontrib>Duquette, Laurie-Anne</creatorcontrib><creatorcontrib>Pearce, Rebecca</creatorcontrib><creatorcontrib>Jaworski, Magdalena</creatorcontrib><creatorcontrib>Barrington, Keith J.</creatorcontrib><creatorcontrib>Synnes, Anne</creatorcontrib><creatorcontrib>Janvier, Annie</creatorcontrib><title>Guilt and Regret Experienced by Parents of Children Born Extremely Preterm</title><title>The Journal of pediatrics</title><addtitle>J Pediatr</addtitle><description>To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret.
Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: “Knowing what you know now, is there anything you would have done differently?” Mixed methods were used to analyze responses.
In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret.
Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.</description><subject>bioethics</subject><subject>decision regret</subject><subject>decision-making</subject><subject>ethics</subject><subject>family integrated care</subject><subject>guilt</subject><subject>high-risk pregnancy</subject><subject>neonatology</subject><subject>neurodevelopmental impairment</subject><subject>palliative care</subject><subject>parental perspectives</subject><subject>parental role</subject><subject>pediatrics</subject><subject>prematurity</subject><subject>regret</subject><subject>self-care</subject><subject>withholding and withdrawing life-sustaining interventions</subject><issn>0022-3476</issn><issn>1097-6833</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><recordid>eNp9kMtOwzAQRS0EouXxBUgoSzYJ40eSesECqlJAlUAI1lZiTyBRHsVOEP17XFJYsrI8Ptczcwg5oxBRoMllFVVrNC5iwJivRCDYHplSkGmYzDjfJ1PwLyEXaTIhR85VACAFwCGZ8EQkXPJ4Sh6WQ1n3Qdaa4BnfLPbB4muNtsRWownyTfCUWWx7F3RFMH8va-NvwU1nW8_1FhusPeJjaJsTclBktcPT3XlMXm8XL_O7cPW4vJ9fr0LNY9mHReHHyg3IWZHFMpUiz6kQMc8ZSCOYnrFEC61pmmkDRieoqV-HaSqNyVlh-DG5GP9d2-5jQNerpnQa6zprsRucYqlIAVLBhUf5iGrbOWexUGtbNpndKApqK1FV6kei2krcFr1EnzrfNRjyBs1f5teaB65GAP2anyVa5fRorLSoe2W68t8G30lHg5c</recordid><startdate>202306</startdate><enddate>202306</enddate><creator>Thivierge, Emilie</creator><creator>Luu, Thuy Mai</creator><creator>Bourque, Claude Julie</creator><creator>Duquette, Laurie-Anne</creator><creator>Pearce, Rebecca</creator><creator>Jaworski, Magdalena</creator><creator>Barrington, Keith J.</creator><creator>Synnes, Anne</creator><creator>Janvier, Annie</creator><general>Elsevier Inc</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-5462-9352</orcidid></search><sort><creationdate>202306</creationdate><title>Guilt and Regret Experienced by Parents of Children Born Extremely Preterm</title><author>Thivierge, Emilie ; Luu, Thuy Mai ; Bourque, Claude Julie ; Duquette, Laurie-Anne ; Pearce, Rebecca ; Jaworski, Magdalena ; Barrington, Keith J. ; Synnes, Anne ; Janvier, Annie</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c359t-ff002bd098fa59794bb14453b209d42c826c4cc17acd0dc6ec16832c19ddb2fd3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>bioethics</topic><topic>decision regret</topic><topic>decision-making</topic><topic>ethics</topic><topic>family integrated care</topic><topic>guilt</topic><topic>high-risk pregnancy</topic><topic>neonatology</topic><topic>neurodevelopmental impairment</topic><topic>palliative care</topic><topic>parental perspectives</topic><topic>parental role</topic><topic>pediatrics</topic><topic>prematurity</topic><topic>regret</topic><topic>self-care</topic><topic>withholding and withdrawing life-sustaining interventions</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Thivierge, Emilie</creatorcontrib><creatorcontrib>Luu, Thuy Mai</creatorcontrib><creatorcontrib>Bourque, Claude Julie</creatorcontrib><creatorcontrib>Duquette, Laurie-Anne</creatorcontrib><creatorcontrib>Pearce, Rebecca</creatorcontrib><creatorcontrib>Jaworski, Magdalena</creatorcontrib><creatorcontrib>Barrington, Keith J.</creatorcontrib><creatorcontrib>Synnes, Anne</creatorcontrib><creatorcontrib>Janvier, Annie</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>The Journal of pediatrics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Thivierge, Emilie</au><au>Luu, Thuy Mai</au><au>Bourque, Claude Julie</au><au>Duquette, Laurie-Anne</au><au>Pearce, Rebecca</au><au>Jaworski, Magdalena</au><au>Barrington, Keith J.</au><au>Synnes, Anne</au><au>Janvier, Annie</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Guilt and Regret Experienced by Parents of Children Born Extremely Preterm</atitle><jtitle>The Journal of pediatrics</jtitle><addtitle>J Pediatr</addtitle><date>2023-06</date><risdate>2023</risdate><volume>257</volume><spage>113268</spage><epage>113268</epage><pages>113268-113268</pages><artnum>113268</artnum><issn>0022-3476</issn><eissn>1097-6833</eissn><abstract>To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret.
Parents of infants born <29 weeks of gestational age, aged between 18 months and 7 years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: “Knowing what you know now, is there anything you would have done differently?” Mixed methods were used to analyze responses.
In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n = 113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret.
Approximately one-half of the parents of infants born extremely preterm had regrets regarding their neonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>36463935</pmid><doi>10.1016/j.jpeds.2022.10.042</doi><tpages>1</tpages><orcidid>https://orcid.org/0000-0002-5462-9352</orcidid></addata></record> |
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| subjects | bioethics decision regret decision-making ethics family integrated care guilt high-risk pregnancy neonatology neurodevelopmental impairment palliative care parental perspectives parental role pediatrics prematurity regret self-care withholding and withdrawing life-sustaining interventions |
| title | Guilt and Regret Experienced by Parents of Children Born Extremely Preterm |
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