{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T01:40:52Z","timestamp":1785548452879,"version":"3.56.0"},"reference-count":22,"publisher":"Georg Thieme Verlag KG","issue":"05","funder":[{"name":"National Institutes of Health for the Center of Biomedical Research Excellence in Acute Care Research and Rural Disparities","award":["1P20GM139745-01"],"award-info":[{"award-number":["1P20GM139745-01"]}]},{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"crossref","award":["K23NS116453"],"award-info":[{"award-number":["K23NS116453"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Am J Perinatol"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:p>\n            Objective\u2003Therapeutic hypothermia (TH) is the standard treatment for hypoxic\u2013ischemic encephalopathy (HIE). We surveyed parents of infants treated with TH about their experiences of communication and parental involvement in the neonatal intensive care unit (NICU).<\/jats:p><jats:p>\n            Study Design\u2003A 29-question anonymous survey was posted on a parent support (web site: \n              https:\/\/www.hopeforhie.org\n            ) and sent to members via e-mail. Responses from open-ended questions were analyzed using thematic analysis.<\/jats:p><jats:p>\n            Results\u2003A total of 165 respondents completed the survey and 108 (66%) infants were treated with TH. 79 (48%) respondents were dissatisfied\/neutral regarding the quality of communication in the NICU, whereas 127 (77%) were satisfied\/greatly satisfied with the quality of parental involvement in the NICU. Six themes were identified as follows: (1) setting for communication: parents preferred face to face meetings with clinicians; (2) content and clarity of language: parents valued clear language (use of layman's terms) and being explicitly told the medical diagnosis of HIE; (3) immediate and longitudinal emotional support: parents required support from clinicians to process the trauma of the birth experience and hypothermia treatment; (4) clinician time and scheduling: parents valued the ability to join rounds and other major conversations about infant care; (5) valuing the parent role: parents desired being actively involved in rounds, care times, and decision-making; (6) physical presence and touch: parents valued being physically present and touching their baby; this presence was limited by the novel coronavirus disease 2019 (COVID-19)-related restrictions.<\/jats:p><jats:p>\n            Conclusion\u2003We highlight stakeholder views on parent involvement and parent\u2013clinician communication in the NICU and note significant overlap with principles of trauma informed care: safety (physical and psychological), trustworthiness and transparency, peer support, collaboration and mutuality, empowerment, and voice and choice. We propose that a greater understanding and implementation of these principles may allow the medical team to more effectively communicate with and involve parents in the care of infants with HIE in the NICU.<\/jats:p><jats:p>\n            Key Points\n          <\/jats:p>","DOI":"10.1055\/a-1739-3388","type":"journal-article","created":{"date-parts":[[2022,1,13]],"date-time":"2022-01-13T23:51:56Z","timestamp":1642117916000},"page":"586-593","source":"Crossref","is-referenced-by-count":15,"title":["Parent Experience of Hypoxic\u2013Ischemic Encephalopathy and Hypothermia: A Call for Trauma Informed Care"],"prefix":"10.1055","volume":"41","author":[{"given":"Anna","family":"Sagaser","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Barbara Bush Children's Hospital at Maine Medical Center, Portland, Maine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Betsy","family":"Pilon","sequence":"additional","affiliation":[{"name":"Hope for HIE, West Bloomfield, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annie","family":"Goeller","sequence":"additional","affiliation":[{"name":"Hope for HIE, West Bloomfield, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica","family":"Lemmon","sequence":"additional","affiliation":[{"name":"Division of Pediatric Neurology and Developmental Medicine, Departments of Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, North Carolina"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexa K.","family":"Craig","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Division of Pediatric Neurology, Barbara Bush Children's Hospital at Maine Medical Center, Portland, Maine"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2022,3,4]]},"reference":[{"issue":"01","key":"ref1","first-page":"CD003311","article-title":"Cooling for newborns with hypoxic ischaemic encephalopathy","author":"S E Jacobs","year":"2013","journal-title":"Cochrane Database Syst Rev"},{"issue":"15","key":"ref2","doi-asserted-by":"crossref","first-page":"1574","DOI":"10.1056\/NEJMcps050929","article-title":"Whole-body hypothermia for neonates with hypoxic-ischemic encephalopathy","volume":"353","author":"S Shankaran","year":"2005","journal-title":"N Engl J Med"},{"issue":"22","key":"ref3","doi-asserted-by":"crossref","first-page":"2085","DOI":"10.1056\/NEJMoa1112066","article-title":"Childhood outcomes after hypothermia for neonatal encephalopathy","volume":"366","author":"S Shankaran","year":"2012","journal-title":"N Engl J Med"},{"issue":"14","key":"ref4","doi-asserted-by":"crossref","first-page":"1349","DOI":"10.1056\/NEJMoa0900854","article-title":"Moderate hypothermia to treat perinatal asphyxial encephalopathy","volume":"361","author":"D V Azzopardi","year":"2009","journal-title":"N Engl J Med"},{"issue":"02","key":"ref5","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1056\/NEJMoa1315788","article-title":"Effects of hypothermia for perinatal asphyxia on childhood outcomes","volume":"371","author":"D Azzopardi","year":"2014","journal-title":"N Engl J Med"},{"issue":"17","key":"ref6","doi-asserted-by":"crossref","first-page":"2889","DOI":"10.1080\/14767058.2018.1563592","article-title":"Parental perceptions of neonatal therapeutic hypothermia; emotional and healing experiences","volume":"33","author":"A K Craig","year":"2020","journal-title":"J Matern Fetal Neonatal Med"},{"issue":"03","key":"ref7","doi-asserted-by":"crossref","first-page":"286","DOI":"10.1177\/0883073816680747","article-title":"Parent experience of neonatal encephalopathy","volume":"32","author":"M E Lemmon","year":"2017","journal-title":"J Child Neurol"},{"issue":"02","key":"ref8","doi-asserted-by":"crossref","first-page":"480","DOI":"10.1111\/apa.15431","article-title":"When all I wanted was to hold my baby-the experiences of parents of infants who received therapeutic hypothermia","volume":"110","author":"P Backe","year":"2021","journal-title":"Acta Paediatr"},{"issue":"02","key":"ref9","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1097\/ANC.0000000000000473","article-title":"Exploring parent experience of communication about therapeutic hypothermia in the neonatal intensive care unit","volume":"18","author":"A K Craig","year":"2018","journal-title":"Adv Neonatal Care"},{"issue":"01","key":"ref11","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1038\/jp.2017.124","article-title":"Trauma-informed care in the newborn intensive care unit: promoting safety, security and connectedness","volume":"38","author":"M R Sanders","year":"2018","journal-title":"J Perinatol"},{"issue":"03","key":"ref12","doi-asserted-by":"crossref","first-page":"e20161234","DOI":"10.1542\/peds.2016-1234","article-title":"Communication challenges in neonatal encephalopathy","volume":"138","author":"M E Lemmon","year":"2016","journal-title":"Pediatrics"},{"key":"ref13","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"V Clarke V Braun","year":"2006","journal-title":"Qual Res Psychol"},{"issue":"09","key":"ref14","doi-asserted-by":"crossref","first-page":"1597","DOI":"10.1111\/apa.14743","article-title":"Maternal holding during therapeutic hypothermia for infants with neonatal encephalopathy is feasible","volume":"108","author":"A Craig","year":"2019","journal-title":"Acta Paediatr"},{"issue":"06","key":"ref15","doi-asserted-by":"crossref","first-page":"634","DOI":"10.1136\/archdischild-2019-318612","article-title":"Parent experience of caring for neonates with seizures","volume":"105","author":"M Lemmon","year":"2020","journal-title":"Arch Dis Child Fetal Neonatal Ed"},{"key":"ref16","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1016\/j.jpeds.2020.02.024","article-title":"Associations between infant and parent characteristics and measures of family well-being in neonates with seizures: a cohort study","volume":"221","author":"L S Franck","year":"2020","journal-title":"J Pediatr"},{"issue":"15","key":"ref17","doi-asserted-by":"crossref","first-page":"1044","DOI":"10.1002\/bdr2.1521","article-title":"The evolution of family-centered care: from supporting parent-delivered interventions to a model of family integrated care","volume":"111","author":"L S Franck","year":"2019","journal-title":"Birth Defects Res"},{"issue":"04","key":"ref18","doi-asserted-by":"crossref","first-page":"245","DOI":"10.1016\/S2352-4642(18)30039-7","article-title":"Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial","volume":"2","author":"K O'Brien","year":"2018","journal-title":"Lancet Child Adolesc Health"},{"issue":"12","key":"ref19","doi-asserted-by":"crossref","first-page":"1861","DOI":"10.1177\/1049732320932897","article-title":"Former NICU families describe gaps in family-centered care","volume":"30","author":"K Sigurdson","year":"2020","journal-title":"Qual Health Res"},{"issue":"02","key":"ref20","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1016\/j.cnc.2020.01.001","article-title":"Family integrated care for preterm infants","volume":"32","author":"L S Franck","year":"2020","journal-title":"Crit Care Nurs Clin North Am"},{"key":"ref21","doi-asserted-by":"crossref","DOI":"10.1891\/9780826131973","volume-title":"Trauma-Informed Care in the NICU; Evidence-Based Practice Guidelines for Neonatal Clinicians","author":"M E Coughlin","year":"2016"},{"issue":"02","key":"ref22","doi-asserted-by":"crossref","first-page":"160","DOI":"10.1097\/JPN.0b013e3182907f26","article-title":"A family-centered \u201cvisitation\u201d policy in the neonatal intensive care unit that welcomes parents as partners","volume":"27","author":"T Griffin","year":"2013","journal-title":"J Perinat Neonatal Nurs"},{"issue":"12","key":"ref23","doi-asserted-by":"crossref","first-page":"1283","DOI":"10.1055\/s-0040-1715839","article-title":"Beyond the first wave: consequences of covid-19 on high-risk infants and families","volume":"37","author":"M E Lemmon","year":"2020","journal-title":"Am J Perinatol"}],"container-title":["American Journal of Perinatology"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.thieme-connect.de\/products\/ejournals\/pdf\/10.1055\/a-1739-3388.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,11,5]],"date-time":"2024-11-05T14:33:55Z","timestamp":1730817235000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.thieme-connect.de\/DOI\/DOI?10.1055\/a-1739-3388"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1,13]]},"references-count":22,"journal-issue":{"issue":"05","published-online":{"date-parts":[[2024,3,20]]},"published-print":{"date-parts":[[2024,4]]}},"URL":"https:\/\/doi.org\/10.1055\/a-1739-3388","archive":["Portico","CLOCKSS"],"relation":{},"ISSN":["0735-1631","1098-8785"],"issn-type":[{"value":"0735-1631","type":"print"},{"value":"1098-8785","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2022,1,13]]},"published":{"date-parts":[[2022,1,13]]}}}