{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,13]],"date-time":"2025-05-13T21:58:00Z","timestamp":1747173480208,"version":"3.40.5"},"reference-count":22,"publisher":"Cambridge University Press (CUP)","issue":"10","license":[{"start":{"date-parts":[[2022,12,13]],"date-time":"2022-12-13T00:00:00Z","timestamp":1670889600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951122003882_as1\"><jats:title>Introduction:<\/jats:title><jats:p>With advances in care, an increasing number of individuals with single-ventricle CHD are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. The goal of this pilot qualitative research study was to explore the lived experiences of partners of individuals with single-ventricle CHD.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951122003882_as2\"><jats:title>Methods:<\/jats:title><jats:p>Partners of patients \u226518 years with single-ventricle CHD were recruited and participated in Experience Group sessions and 1:1 interviews. Experience Group sessions are lightly moderated groups that bring together individuals with similar circumstances to discuss their lived experiences, centreing them as the experts. Formal inductive qualitative coding was performed to identify salient themes.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951122003882_as3\"><jats:title>Results:<\/jats:title><jats:p>Six partners of patients participated. Of these, four were males and four were married; all were partners of someone of the opposite sex. Themes identified included uncertainty about their partners\u2019 future health and mortality, becoming a lay CHD specialist, balancing multiple roles, and providing positivity and optimism. Over time, they took on a role as advocates for their partners and as repositories of medical history to help navigate the health system. Despite the uncertainties, participants described championing positivity and optimism for the future.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951122003882_as4\"><jats:title>Conclusions:<\/jats:title><jats:p>In this first-of-its-kind pilot study, partners of individuals with single-ventricle CHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951122003882","type":"journal-article","created":{"date-parts":[[2022,12,13]],"date-time":"2022-12-13T08:38:59Z","timestamp":1670920739000},"page":"2016-2020","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study"],"prefix":"10.1017","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0725-2791","authenticated-orcid":false,"given":"Andrew","family":"Well","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra","family":"Lamari-Fisher","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kate","family":"Taylor","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christopher","family":"Ulack","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Lee","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeremy T.","family":"Affolter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jose","family":"Colucci","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heather","family":"Van Diest","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Carberry","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gregory","family":"Johnson","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charles D.","family":"Fraser","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos M.","family":"Mery","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"for The University of Texas at Austin CORAGE Initiative","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2022,12,13]]},"reference":[{"key":"S1047951122003882_ref8","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.1986.tb01234.x"},{"key":"S1047951122003882_ref19","doi-asserted-by":"publisher","DOI":"10.1080\/01609513.2010.538010"},{"key":"S1047951122003882_ref5","doi-asserted-by":"publisher","DOI":"10.1016\/j.amjcard.2003.11.022"},{"key":"S1047951122003882_ref18","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.1990.tb00225.x"},{"key":"S1047951122003882_ref6","doi-asserted-by":"publisher","DOI":"10.1017\/S1047951117002761"},{"key":"S1047951122003882_ref4","first-page":"105","article-title":"Management of the adult Fontan patient","volume":"106","author":"Rodriguez","year":"2020","journal-title":"Heart Br Card Soc."},{"key":"S1047951122003882_ref21","doi-asserted-by":"publisher","DOI":"10.1037\/amp0000066"},{"key":"S1047951122003882_ref9","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-019-6800-7"},{"key":"S1047951122003882_ref14","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.7001.376"},{"key":"S1047951122003882_ref11","doi-asserted-by":"publisher","DOI":"10.4997\/jrcpe.2015.305"},{"key":"S1047951122003882_ref3","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(09)60563-8"},{"key":"S1047951122003882_ref16","first-page":"696","article-title":"The role of illness uncertainty on coping with fibromyalgia symptoms","volume":"25","author":"Johnson","year":"2006","journal-title":"Health Psychol Off J Div Health Psychol Am Psychol Assoc."},{"key":"S1047951122003882_ref2","doi-asserted-by":"publisher","DOI":"10.1016\/S0003-4975(01)02720-5"},{"key":"S1047951122003882_ref17","first-page":"17423953211043100","article-title":"Its a double whammy\u2019: a qualitative study of illness uncertainty in individuals with Parkinson\u2019s disease in the context of COVID-19","volume":"15","author":"Simpson","year":"2021","journal-title":"Chronic Illn."},{"key":"S1047951122003882_ref7","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0b013e31829b1a88"},{"key":"S1047951122003882_ref13","unstructured":"13. 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The Delphi Method: An Experimental Study of Group Opinion, 1969, RAND Corporation;, Accessed October 6, 2021. https:\/\/www.rand.org\/pubs\/research_memoranda\/RM5888.html"},{"key":"S1047951122003882_ref22","doi-asserted-by":"publisher","DOI":"10.1016\/j.jad.2016.06.047"},{"key":"S1047951122003882_ref1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jacc.2015.07.065"},{"key":"S1047951122003882_ref10","doi-asserted-by":"publisher","DOI":"10.1155\/2020\/6240298"},{"key":"S1047951122003882_ref12","first-page":"534","article-title":"Outcomes that matter most to young adults diagnosed with cancer: a qualitative study","volume":"25","author":"Guzik","year":"2020","journal-title":"J Adolesc Young Adult Oncol."},{"key":"S1047951122003882_ref20","doi-asserted-by":"publisher","DOI":"10.1111\/jan.14785"},{"key":"S1047951122003882_ref15","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5372"}],"container-title":["Cardiology in the Young"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1047951122003882","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,11]],"date-time":"2023-10-11T10:16:34Z","timestamp":1697019394000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1047951122003882\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,13]]},"references-count":22,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2023,10]]}},"alternative-id":["S1047951122003882"],"URL":"https:\/\/doi.org\/10.1017\/s1047951122003882","relation":{},"ISSN":["1047-9511","1467-1107"],"issn-type":[{"type":"print","value":"1047-9511"},{"type":"electronic","value":"1467-1107"}],"subject":[],"published":{"date-parts":[[2022,12,13]]},"assertion":[{"value":"\u00a9 The Author(s), 2022. 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