{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T21:48:27Z","timestamp":1776116907154,"version":"3.50.1"},"reference-count":41,"publisher":"Cambridge University Press (CUP)","issue":"2","license":[{"start":{"date-parts":[[2009,4,1]],"date-time":"2009-04-01T00:00:00Z","timestamp":1238544000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2009,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951109003485_abs1\" sec-type=\"general\"><jats:title>Background<\/jats:title><jats:p>Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state as a survivor may include less than optimal developmental sequels.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951109003485_abs2\" sec-type=\"general\"><jats:title>Method<\/jats:title><jats:p>Our study involved multiple interactive interviews with 9 mothers and 7 fathers of infants and preschool children with hypoplastic left heart syndrome who had survived the Norwood surgical approach. Qualitative methodology included grounded theory methods of simultaneous collection and analysis of data, and we used open and selective coding of transcribed interviews.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951109003485_abs3\" sec-type=\"results\"><jats:title>Results<\/jats:title><jats:p>Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951109003485_abs4\" sec-type=\"conclusion\"><jats:title>Conclusion<\/jats:title><jats:p>There is growing evidence that children with congenitally malformed hearts who require surgical intervention during the first year of life may experience developmental delay. The use of normalization by their parents may be effective in decreasing their worry regarding the uncertain future faced by their child, but may negatively affect the developmental progress of the child if they do not seek resources to assist development. Advice from paediatric specialists for parents to view their children as normal needs to be balanced with assistance for parents to access services to support optimal growth and development of their child.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951109003485","type":"journal-article","created":{"date-parts":[[2009,3,10]],"date-time":"2009-03-10T09:12:36Z","timestamp":1236676356000},"page":"135-144","source":"Crossref","is-referenced-by-count":42,"title":["Is \u201cTreat your child normally\u201d helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?"],"prefix":"10.1017","volume":"19","author":[{"given":"Gwen R.","family":"Rempel","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Margaret J.","family":"Harrison","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deanna L.","family":"Williamson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2009,4,1]]},"reference":[{"key":"S1047951109003485_ref22","volume-title":"Basics of grounded theory analysis: emergence vs. forcing","author":"Glaser","year":"1992"},{"key":"S1047951109003485_ref5","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejcts.2007.12.042"},{"key":"S1047951109003485_ref21","doi-asserted-by":"publisher","DOI":"10.1177\/104973299129121848"},{"key":"S1047951109003485_ref14","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951100004121"},{"key":"S1047951109003485_ref41","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00215-0"},{"key":"S1047951109003485_ref20","volume-title":"Qualitative evaluation and research methods","author":"Patton","year":"1990"},{"key":"S1047951109003485_ref19","first-page":"105","volume-title":"Handbook of qualitative research","author":"Guba","year":"1994"},{"key":"S1047951109003485_ref36","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770090306"},{"key":"S1047951109003485_ref30","doi-asserted-by":"publisher","DOI":"10.1207\/S15326942DN242&3_10"},{"key":"S1047951109003485_ref2","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCULATIONAHA.105.001438"},{"key":"S1047951109003485_ref7","doi-asserted-by":"publisher","DOI":"10.1067\/mpd.2002.125227"},{"key":"S1047951109003485_ref18","first-page":"509","volume-title":"Handbook of qualitative research","author":"Charmaz","year":"2000"},{"key":"S1047951109003485_ref15","doi-asserted-by":"publisher","DOI":"10.1542\/peds.105.5.1082"},{"key":"S1047951109003485_ref1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.110.2.292"},{"key":"S1047951109003485_ref25","doi-asserted-by":"publisher","DOI":"10.1016\/j.nut.2006.03.010"},{"key":"S1047951109003485_ref6","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951104006456"},{"key":"S1047951109003485_ref8","doi-asserted-by":"publisher","DOI":"10.1542\/peds.108.6.1325"},{"key":"S1047951109003485_ref26","doi-asserted-by":"publisher","DOI":"10.1136\/adc.81.1.49"},{"key":"S1047951109003485_ref13","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951107001023"},{"key":"S1047951109003485_ref27","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-3476(95)70478-7"},{"key":"S1047951109003485_ref39","doi-asserted-by":"publisher","DOI":"10.1053\/jpdn.2002.124111"},{"key":"S1047951109003485_ref11","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2005.07.051"},{"key":"S1047951109003485_ref40","doi-asserted-by":"publisher","DOI":"10.1016\/S0147-9563(97)90055-8"},{"key":"S1047951109003485_ref33","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951108002114"},{"key":"S1047951109003485_ref17","first-page":"109","volume-title":"Contemporary field research: a collection of readings","author":"Charmaz","year":"1983"},{"key":"S1047951109003485_ref10","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0575"},{"key":"S1047951109003485_ref28","first-page":"S14","article-title":"The case for child development as a determinant of health","volume":"89","author":"Hertzman","year":"1998","journal-title":"Can J Public Health"},{"key":"S1047951109003485_ref3","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440-1754.2007.01164.x"},{"key":"S1047951109003485_ref23","volume-title":"Theoretical sensitivity: advances in the methodology of grounded theory","author":"Glaser","year":"1978"},{"key":"S1047951109003485_ref31","first-page":"55","volume-title":"Developmental health and the wealth of nations. 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