{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,21]],"date-time":"2026-03-21T17:31:19Z","timestamp":1774114279161,"version":"3.50.1"},"reference-count":19,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2018,8,11]],"date-time":"2018-08-11T00:00:00Z","timestamp":1533945600000},"content-version":"vor","delay-in-days":41,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100008457","name":"University of Virginia","doi-asserted-by":"publisher","award":["Lanford Award"],"award-info":[{"award-number":["Lanford Award"]}],"id":[{"id":"10.13039\/100008457","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Specialist Pediatric Nursing"],"published-print":{"date-parts":[[2018,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>Children with hypoplastic left heart syndrome (HLHS) experience numerous vulnerabilities during transitions from hospital to home during their first year of life. This paper examines the parents\u2019 responses to the situations they experience during the initial interstage transition as described through illness blogs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design and methods<\/jats:title><jats:p>A qualitative descriptive design through inductive theme development using thematic analysis was performed for this study. Text data were used from publically available blogs written by parents of HLHS children on their feelings and experiences during transitions between hospital\u2010 and home\u2010care during the interstage period.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Six blogs were analyzed. Overall, the lack of difference in normalcy for these parents and their families was apparent. Major themes included: thoughts and feelings when discharged from the hospital, difficulties with hospital readmissions, protecting their child from infection, and developing a support system.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Parents looked forward to going home and learned all they could about properly caring for their child before going home. They were disappointed and frustrated when returning to the hospital for either emergency or scheduled admissions and were not prepared to see their child in the intensive care unit environment again. Many parents isolated themselves and avoided the hospital as much as possible to avoid their child developing an infection. All parents had support systems through family and\/or friends and found an unexpected sense of support through their blog families.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jspn.12225","type":"journal-article","created":{"date-parts":[[2018,8,11]],"date-time":"2018-08-11T07:20:07Z","timestamp":1533972007000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Transition experiences between hospital\u2010 and home\u2010care for parents of children with hypoplastic left heart syndrome"],"prefix":"10.1111","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3900-5047","authenticated-orcid":false,"given":"Sarita","family":"March","sequence":"first","affiliation":[{"name":"Levine Children's Hospital Carolinas Medical Center Charlotte North Carolina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7035-8556","authenticated-orcid":false,"given":"Jessica","family":"Keim\u2010Malpass","sequence":"additional","affiliation":[{"name":"Department of Acute and Specialty Care, School of Nursing University of Virginia Charlottesville Virginia"},{"name":"Department of Pediatrics University of Virginia School of Medicine Charlottesville Virginia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2018,8,11]]},"reference":[{"key":"e_1_2_5_1_2_1","first-page":"pp. 93","volume-title":"Doing Qualitative Research","author":"Crabtree B.","year":"1992"},{"key":"e_1_2_5_1_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1747-0803.2011.00600.x"},{"key":"e_1_2_5_1_4_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951116001062"},{"key":"e_1_2_5_1_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/ANS.0b013e31826260a5"},{"key":"e_1_2_5_1_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/NMC.0b013e318241dac1"},{"key":"e_1_2_5_1_7_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951111001600"},{"key":"e_1_2_5_1_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijnurstu.2014.06.003"},{"key":"e_1_2_5_1_9_1","unstructured":"Mayo Clinic(2016). Hypoplastic left heart syndrome. Retrieved fromhttp:\/\/www.mayoclinic.org\/diseases\u2010conditions\/hypoplastic\u2010left\u2010heart\u2010syndrome\/home\/ovc\u201020164178."},{"key":"e_1_2_5_1_10_1","doi-asserted-by":"publisher","DOI":"10.1097\/00012272-200009000-00006"},{"key":"e_1_2_5_1_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0899-5885(18)30900-6"},{"key":"e_1_2_5_1_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2012.06044.x"},{"key":"e_1_2_5_1_13_1","doi-asserted-by":"publisher","DOI":"10.1002\/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G"},{"key":"e_1_2_5_1_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0882-5963(05)80098-3"},{"key":"e_1_2_5_1_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0882-5963(96)80093-5"},{"key":"e_1_2_5_1_16_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2009.23.0516"},{"key":"e_1_2_5_1_17_1","article-title":"I was so worried about every drop of milk\u201d \u2010 feeding problems at home are a significant concern for parents after major heart surgery in infancy","volume":"13","author":"Tregay J.","year":"2016","journal-title":"Maternal & Child Nutrition"},{"key":"e_1_2_5_1_18_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2014-308092"},{"key":"e_1_2_5_1_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2015-308827"},{"issue":"1","key":"e_1_2_5_1_20_1","first-page":"47","article-title":"Effect of a systematic discharge nursing plan on mothers\u2019 knowledge and confidence in caring for infants with congenital heart disease at home","volume":"103","author":"Yang H. L.","year":"2004","journal-title":"Journal of the Formosan Medical Association"}],"container-title":["Journal for Specialists in Pediatric Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fjspn.12225","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jspn.12225","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jspn.12225","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jspn.12225","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,10]],"date-time":"2023-09-10T23:43:37Z","timestamp":1694389417000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jspn.12225"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,7]]},"references-count":19,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2018,7]]}},"alternative-id":["10.1111\/jspn.12225"],"URL":"https:\/\/doi.org\/10.1111\/jspn.12225","archive":["Portico"],"relation":{},"ISSN":["1539-0136","1744-6155"],"issn-type":[{"value":"1539-0136","type":"print"},{"value":"1744-6155","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,7]]},"assertion":[{"value":"2018-05-23","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-07-13","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-08-11","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e12225"}}