{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,21]],"date-time":"2026-09-21T06:45:34Z","timestamp":1789973134023,"version":"4.0.1"},"reference-count":16,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2007,1,2]],"date-time":"2007-01-02T00:00:00Z","timestamp":1167696000000},"content-version":"vor","delay-in-days":2314,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acta Paediatrica"],"published-print":{"date-parts":[[2000,9]]},"abstract":"<jats:p>It is unclear how parents make life\u2010and\u2010death decisions on behalf of their children. To address this issue we interviewed 20 mothers whose children were born with hypoplastic left heart syndrome (HLHS), 10 whose child survived the operations and 10 mothers who chose comfort care. Semi\u2010structured interviews lasting from 1.5 to 3.5 h took place on median 4.6 (range 2 .5\u20136) years after birth. The mothers who chose comfort care had more years of education <jats:italic>p<\/jats:italic>= 0.03), reported a better childhood environment (<jats:italic>p<\/jats:italic>= 0.05) and had more often been employed in the healthcare services. The two groups described the information received in similar terms. The main motive for choosing surgery was that this was perceived to be the only acceptable choice. The motive for choosing non\u2010treatment was to prevent the child from suffering.<\/jats:p><jats:p>Lack of knowledge about long\u2010term outcome. a state of shock and short time to deliberate limit the parents\u2019possibilities for making autonomous choices. Autonomous decisions may be neither possible nor desirable for all parents. The care perspective, which highlights the parents\u2019preferences, resources and values, should represent ethical guidelines for care providers willing to decide on behalf of the child.<\/jats:p>","DOI":"10.1111\/j.1651-2227.2000.tb03363.x","type":"journal-article","created":{"date-parts":[[2010,8,7]],"date-time":"2010-08-07T00:50:50Z","timestamp":1281142250000},"page":"1129-1133","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":61,"title":["Ethical issues in parental decision\u2010making. An interview study of mothers of children with hypoplastic left heart syndrome"],"prefix":"10.1111","volume":"89","author":[{"given":"IH","family":"Vandvik","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R","family":"F\u00f8rde","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2007,1,2]]},"reference":[{"key":"e_1_2_1_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0002-9149(97)00313-5"},{"key":"e_1_2_1_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-5223(19)39288-8"},{"key":"e_1_2_1_4_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951100004091"},{"key":"e_1_2_1_5_2","doi-asserted-by":"publisher","DOI":"10.1097\/00000658-199609000-00015"},{"key":"e_1_2_1_6_2","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951100004121"},{"key":"e_1_2_1_7_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-3476(95)70478-7"},{"key":"e_1_2_1_8_2","first-page":"2649","article-title":"Ethical dilemmas associated with hypoplastic left\u2010heart syndrome","volume":"118","author":"F\u00f8de R","year":"1998","journal-title":"Tidsskr Nor Laegeforen"},{"key":"e_1_2_1_9_2","doi-asserted-by":"publisher","DOI":"10.3109\/07357908609018455"},{"key":"e_1_2_1_10_2","first-page":"1088","article-title":"Chronic family difficulties and stressful life events in recent onset juvenile chronic arthritis","volume":"16","author":"Vandvik IH","year":"1989","journal-title":"J Rheumatol"},{"key":"e_1_2_1_11_2","first-page":"391","volume-title":"Adaptation to life","author":"Vaillant GE","year":"1977"},{"key":"e_1_2_1_12_2","doi-asserted-by":"publisher","DOI":"10.1007\/BF00583828"},{"key":"e_1_2_1_13_2","first-page":"131","article-title":"Bias resulting from missing information","volume":"31","author":"Cox A","year":"1977","journal-title":"Br J Prevent Soc Med"},{"key":"e_1_2_1_14_2","doi-asserted-by":"crossref","first-page":"243","DOI":"10.1086\/JCE199607307","article-title":"The interrelationship of ethical issues in the transition from old paradigms to new technologies","volume":"7","author":"Cooper TR","year":"1996","journal-title":"J Clin Ethics"},{"key":"e_1_2_1_15_2","doi-asserted-by":"publisher","DOI":"10.1300\/J010v10n01_02"},{"key":"e_1_2_1_16_2","doi-asserted-by":"publisher","DOI":"10.1016\/0002-9378(75)90718-8"},{"key":"e_1_2_1_17_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(96)00221-3"}],"container-title":["Acta Paediatrica"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1651-2227.2000.tb03363.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1651-2227.2000.tb03363.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,29]],"date-time":"2023-10-29T18:06:42Z","timestamp":1698602802000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1651-2227.2000.tb03363.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2000,9]]},"references-count":16,"aliases":["10.1080\/713794571"],"journal-issue":{"issue":"9","published-print":{"date-parts":[[2000,9]]}},"alternative-id":["10.1111\/j.1651-2227.2000.tb03363.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1651-2227.2000.tb03363.x","archive":["Portico"],"relation":{},"ISSN":["0803-5253","1651-2227"],"issn-type":[{"value":"0803-5253","type":"print"},{"value":"1651-2227","type":"electronic"}],"subject":[],"published":{"date-parts":[[2000,9]]},"assertion":[{"value":"2007-01-02","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}