{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T07:38:38Z","timestamp":1787729918418,"version":"build-2784847793"},"reference-count":23,"publisher":"Cambridge University Press (CUP)","issue":"3","license":[{"start":{"date-parts":[[2021,6,24]],"date-time":"2021-06-24T00:00:00Z","timestamp":1624492800000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951121002407_as1\"><jats:title>Background:<\/jats:title><jats:p>Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers\u2019 experiences during the most critical \u201cinterstage\u201d period between the first and second surgery.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951121002407_as2\"><jats:title>Objectives:<\/jats:title><jats:p>To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951121002407_as3\"><jats:title>Methods:<\/jats:title><jats:p>Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2\u20134 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951121002407_as4\"><jats:title>Results:<\/jats:title><jats:p>Our sample included 14 parents, who were interviewed 1\u20132 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes &lt;$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how \u201cto make it work\u201d in the interstage period, and (3) Gaining a sense of self-reliance.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951121002407_as5\"><jats:title>Conclusions:<\/jats:title><jats:p>Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951121002407","type":"journal-article","created":{"date-parts":[[2021,6,24]],"date-time":"2021-06-24T04:26:27Z","timestamp":1624508787000},"page":"465-471","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":4,"title":["Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period"],"prefix":"10.1017","volume":"32","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5452-290X","authenticated-orcid":false,"given":"Flerida","family":"Imperial-Perez","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"MarySue V.","family":"Heilemann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lynn V.","family":"Doering","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jo-Ann","family":"Eastwood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nancy A.","family":"Pike","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2021,6,24]]},"reference":[{"key":"S1047951121002407_ref14","doi-asserted-by":"publisher","DOI":"10.1111\/jspn.12185"},{"key":"S1047951121002407_ref7","doi-asserted-by":"publisher","DOI":"10.1080\/24694193.2017.1372532"},{"key":"S1047951121002407_ref4","first-page":"301","article-title":"Trends and outcomes in neonatal cardiac surgery for congenital heart disease in Japan from 1996 to 2010","volume":"51","author":"Hasegawa","year":"2017","journal-title":"Eur J Cardio-Thorac Surg"},{"key":"S1047951121002407_ref18","volume-title":"Basics of Qualitative Research","author":"Corbin","year":"2015"},{"key":"S1047951121002407_ref17","volume-title":"Constructing Grounded Theory","author":"Charmaz","year":"2014"},{"key":"S1047951121002407_ref5","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951112000352"},{"key":"S1047951121002407_ref15","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.119.014548"},{"key":"S1047951121002407_ref9","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951113000760"},{"key":"S1047951121002407_ref22","doi-asserted-by":"publisher","DOI":"10.3109\/03009730903431809"},{"key":"S1047951121002407_ref8","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.13694"},{"key":"S1047951121002407_ref16","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2012.06044.x"},{"key":"S1047951121002407_ref21","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2014.02.038"},{"key":"S1047951121002407_ref1","first-page":"e56","article-title":"Heart disease and stroke statistics\u20142019 update: a report from the American Heart Association","volume":"139","author":"Benjamin Emelia","year":"2019","journal-title":"Circulation"},{"key":"S1047951121002407_ref10","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jst015"},{"key":"S1047951121002407_ref3","doi-asserted-by":"publisher","DOI":"10.1016\/B978-1-4557-0760-7.00062-0"},{"key":"S1047951121002407_ref6","doi-asserted-by":"publisher","DOI":"10.1111\/chd.12071"},{"key":"S1047951121002407_ref23","doi-asserted-by":"publisher","DOI":"10.1186\/s12884-018-2022-8"},{"key":"S1047951121002407_ref19","unstructured":"19. ATLAS.ti Windows 8 Scientific Software Development GmbH. https:\/\/atlasti.com\/product\/v8-windows\/ [computer program]. 2019."},{"key":"S1047951121002407_ref20","doi-asserted-by":"publisher","DOI":"10.1161\/CIRCOUTCOMES.115.001956"},{"key":"S1047951121002407_ref2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-3435"},{"key":"S1047951121002407_ref13","doi-asserted-by":"publisher","DOI":"10.1007\/s00246-016-1472-x"},{"key":"S1047951121002407_ref11","doi-asserted-by":"publisher","DOI":"10.1097\/NMC.0b013e318241dac1"},{"key":"S1047951121002407_ref12","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtcvs.2012.05.020"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951121002407","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,4,12]],"date-time":"2022-04-12T04:46:22Z","timestamp":1649738782000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951121002407\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,6,24]]},"references-count":23,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2022,3]]}},"alternative-id":["S1047951121002407"],"URL":"https:\/\/doi.org\/10.1017\/s1047951121002407","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"value":"1047-9511","type":"print"},{"value":"1467-1107","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,6,24]]},"assertion":[{"value":"\u00a9 The Author(s), 2021. Published by Cambridge University Press","name":"copyright","label":"Copyright","group":{"name":"copyright_and_licensing","label":"Copyright and Licensing"}}]}}