{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T16:07:14Z","timestamp":1793117234029,"version":"4.5.0"},"reference-count":67,"publisher":"Springer Science and Business Media LLC","license":[{"start":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T00:00:00Z","timestamp":1786147200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"},{"start":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T00:00:00Z","timestamp":1786147200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["Building Interdisciplinary Research Careers in Women\u2019s Health Program (K12AR084218)"],"award-info":[{"award-number":["Building Interdisciplinary Research Careers in Women\u2019s Health Program (K12AR084218)"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["National Cancer Institute (K08CA263317)"],"award-info":[{"award-number":["National Cancer Institute (K08CA263317)"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Natali Foundation"},{"DOI":"10.13039\/100014367","name":"National Palliative Care Research Center","doi-asserted-by":"publisher","award":["Kornfeld Scholars Program"],"award-info":[{"award-number":["Kornfeld Scholars Program"]}],"id":[{"id":"10.13039\/100014367","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pediatr Cardiol"],"DOI":"10.1007\/s00246-026-04416-8","type":"journal-article","created":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T04:41:44Z","timestamp":1786164104000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Parent Perspectives on Optimal Communication About a New Prenatal Diagnosis of Complex Congenital Heart Disease: A Concept Mapping Study"],"prefix":"10.1007","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5732-5197","authenticated-orcid":false,"given":"Kelly W.","family":"Harris","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Samantha","family":"Syme","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadine A.","family":"Kasparian","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judy C.","family":"Chang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert M.","family":"Arnold","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hailey W.","family":"Bulls","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Divanovic","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Colosimo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline G.","family":"Weinberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica G.","family":"Burke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,8,8]]},"reference":[{"issue":"12","key":"4416_CR1","doi-asserted-by":"publisher","first-page":"1890","DOI":"10.1016\/S0735-1097(02)01886-7","volume":"39","author":"JI Hoffman","year":"2002","unstructured":"Hoffman JI, Kaplan S (2002) The incidence of congenital heart disease. J Am Coll Cardiol 39(12):1890\u20131900","journal-title":"J Am Coll Cardiol"},{"issue":"6","key":"4416_CR2","doi-asserted-by":"publisher","first-page":"338","DOI":"10.1053\/j.semperi.2017.07.004","volume":"41","author":"RS Kirby","year":"2017","unstructured":"Kirby RS (2017) The prevalence of selected major birth defects in the United States. Semin Perinatol 41(6):338\u2013344","journal-title":"Semin Perinatol"},{"issue":"5","key":"4416_CR3","doi-asserted-by":"publisher","first-page":"e1502","DOI":"10.1542\/peds.2012-3435","volume":"131","author":"ME Oster","year":"2013","unstructured":"Oster ME, Lee KA, Honein MA, Riehle-Colarusso T, Shin M, Correa A (2013) Temporal trends in survival among infants with critical congenital heart defects. Pediatrics 131(5):e1502\u20131508","journal-title":"Pediatrics"},{"issue":"2","key":"4416_CR4","doi-asserted-by":"publisher","first-page":"e378","DOI":"10.1542\/peds.2014-3783","volume":"136","author":"MD Quartermain","year":"2015","unstructured":"Quartermain MD, Pasquali SK, Hill KD, Goldberg DJ, Huhta JC, Jacobs JP, Jacobs ML, Kim S, Ungerleider RM (2015) Variation in Prenatal Diagnosis of Congenital Heart Disease in Infants. Pediatrics 136(2):e378\u2013e385","journal-title":"Pediatrics"},{"key":"4416_CR5","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-016-0048-5","volume":"2","author":"T Carlsson","year":"2016","unstructured":"Carlsson T, Marttala UM, Wadensten B, Bergman G, Mattsson E (2016) Involvement of persons with lived experience of a prenatal diagnosis of congenital heart defect: an explorative study to gain insights into perspectives on future research. Res Involv Engagem 2:35","journal-title":"Res Involv Engagem"},{"issue":"9","key":"4416_CR6","doi-asserted-by":"publisher","first-page":"1289","DOI":"10.1016\/j.ijnurstu.2014.02.003","volume":"51","author":"KA Allen","year":"2014","unstructured":"Allen KA (2014) Parental decision-making for medically complex infants and children: An integrated literature review. Int J Nurs Stud 51(9):1289\u20131304","journal-title":"Int J Nurs Stud"},{"issue":"4","key":"4416_CR7","doi-asserted-by":"publisher","DOI":"10.1016\/j.semperi.2022.151587","volume":"46","author":"TA Tacy","year":"2022","unstructured":"Tacy TA, Kasparian NA, Karnik R, Geiger M, Sood E (2022) Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease. Semin Perinatol 46(4):151587","journal-title":"Semin Perinatol"},{"key":"4416_CR8","doi-asserted-by":"publisher","DOI":"10.3390\/jcdd11010031","author":"G Mutti","year":"2024","unstructured":"Mutti G, Ait Ali L, Marotta M, Nunno S, Consigli V, Baratta S, Orsi ML, Mastorci F, Vecoli C, Pingitore A et al (2024) Psychological impact of a prenatal diagnosis of congenital heart disease on parents: is it time for tailored psychological support? J Cardiovasc Dev Dis. https:\/\/doi.org\/10.3390\/jcdd11010031","journal-title":"J Cardiovasc Dev Dis"},{"key":"4416_CR9","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.116.004862","author":"SE Woolf-King","year":"2017","unstructured":"Woolf-King SE, Anger A, Arnold EA, Weiss SJ, Teitel D (2017) Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc. https:\/\/doi.org\/10.1161\/JAHA.116.004862","journal-title":"J Am Heart Assoc"},{"issue":"3","key":"4416_CR10","doi-asserted-by":"publisher","first-page":"e195316","DOI":"10.1001\/jamapediatrics.2019.5316","volume":"174","author":"Y Wu","year":"2020","unstructured":"Wu Y, Kapse K, Jacobs M, Niforatos-Andescavage N, Donofrio M, Krishnan A, Vezina G, Wessel D, du Plessis A, Limperopoulos C (2020) Association of Maternal Psychological Distress With In Utero Brain Development in Fetuses With Congenital Heart Disease. JAMA Pediatr 174(3):e195316","journal-title":"JAMA Pediatr"},{"issue":"2","key":"4416_CR11","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1016\/j.jpeds.2012.07.023","volume":"162","author":"J Rychik","year":"2013","unstructured":"Rychik J, Donaghue DD, Levy S, Fajardo C, Combs J, Zhang X, Szwast A, Diamond GS (2013) Maternal psychological stress after prenatal diagnosis of congenital heart disease. J Pediatr 162(2):302\u2013307e301","journal-title":"J Pediatr"},{"key":"4416_CR12","doi-asserted-by":"publisher","first-page":"86","DOI":"10.1016\/j.jad.2017.05.003","volume":"219","author":"CA Woody","year":"2017","unstructured":"Woody CA, Ferrari AJ, Siskind DJ, Whiteford HA, Harris MG (2017) A systematic review and meta-regression of the prevalence and incidence of perinatal depression. J Affect Disord 219:86\u201392","journal-title":"J Affect Disord"},{"issue":"5","key":"4416_CR13","doi-asserted-by":"publisher","first-page":"315","DOI":"10.1192\/bjp.bp.116.187179","volume":"210","author":"CL Dennis","year":"2017","unstructured":"Dennis CL, Falah-Hassani K, Shiri R (2017) Prevalence of antenatal and postnatal anxiety: systematic review and meta-analysis. Br J Psychiatry 210(5):315\u2013323","journal-title":"Br J Psychiatry"},{"issue":"5","key":"4416_CR14","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.4082","volume":"3","author":"KW Harris","year":"2020","unstructured":"Harris KW, Brelsford KM, Kavanaugh-McHugh A, Clayton EW (2020) Uncertainty of prenatally diagnosed congenital heart disease: a qualitative study. JAMA Netw Open 3(5):e204082","journal-title":"JAMA Netw Open"},{"issue":"8","key":"4416_CR15","doi-asserted-by":"publisher","first-page":"1387","DOI":"10.1017\/S1047951122002505","volume":"33","author":"KW Harris","year":"2023","unstructured":"Harris KW, Hammack-Aviran CM, Brelsford KM, Kavanaugh-McHugh A, Clayton EW (2023) Mapping parents\u2019 journey following prenatal diagnosis of CHD: a qualitative study. Cardiol Young 33(8):1387\u20131395","journal-title":"Cardiol Young"},{"key":"4416_CR16","doi-asserted-by":"crossref","unstructured":"Sweeny K, Howell JL (2025) Managing acute uncertainty. Chapter 19 in The Routledge Handbook of the Uncertain Self, 2nd edn. New York: Routledge","DOI":"10.4324\/9781003363385-22"},{"issue":"5","key":"4416_CR17","doi-asserted-by":"publisher","first-page":"1458","DOI":"10.1037\/emo0001163","volume":"23","author":"JL Howell","year":"2023","unstructured":"Howell JL, Sweeny K, Hua J, Werntz A, Hussain M, Hinojosa BM, Johnson AE, Lindgren KP, Meese W, O\u2019Shea BA et al (2023) The role of uncertainty, worry, and control in well-being: Evidence from the COVID-19 outbreak and pandemic in U.S. and China. Emotion 23(5):1458\u20131471","journal-title":"Emotion"},{"issue":"4","key":"4416_CR18","doi-asserted-by":"publisher","first-page":"652","DOI":"10.1007\/s10865-016-9729-7","volume":"39","author":"JL Howell","year":"2016","unstructured":"Howell JL, Sweeny K (2016) Is waiting bad for subjective health? J Behav Med 39(4):652\u2013664","journal-title":"J Behav Med"},{"issue":"10","key":"4416_CR19","doi-asserted-by":"publisher","first-page":"1163","DOI":"10.1080\/08870446.2020.1713323","volume":"35","author":"JL Howell","year":"2020","unstructured":"Howell JL, Sweeny K (2020) Health behavior during periods of stressful uncertainty: associations with emotions, cognitions, and expectation management. Psychol Health 35(10):1163\u20131183","journal-title":"Psychol Health"},{"issue":"7","key":"4416_CR20","doi-asserted-by":"publisher","first-page":"858","DOI":"10.1080\/08870446.2022.2117811","volume":"39","author":"M Wilson","year":"2022","unstructured":"Wilson M, Rankin K, Ludi D, Sweeny K (2022) Emotional, cognitive, and physical well-being during the wait for breast biopsy results. Psychol Health 39(7):858\u2013877","journal-title":"Psychol Health"},{"issue":"7","key":"4416_CR21","doi-asserted-by":"publisher","first-page":"1479","DOI":"10.1007\/s00246-023-03209-7","volume":"44","author":"E Sood","year":"2023","unstructured":"Sood E, Nees SN, Srivastava S, Ng S, Torres C, Munoz Osorio A, Canter KS, Braley KT, Spradley L, Stein J et al (2023) Virtually delivered psychosocial intervention for prenatally diagnosed congenital heart disease: feasibility and acceptability of HEARTPrep. Pediatr Cardiol 44(7):1479\u20131486","journal-title":"Pediatr Cardiol"},{"key":"4416_CR22","doi-asserted-by":"publisher","DOI":"10.1016\/j.ppedcard.2023.101687","volume":"72","author":"AC McKechnie","year":"2024","unstructured":"McKechnie AC, Elgersma KM, Ambrose MB, Sanchez Mejia AA, Shah KM, Iwaszko Wagner T, Trebilcock A, Hallock C (2024) Nurse-guided mobile health care program to reduce emotional distress experienced by parents of infants prenatally diagnosed with critical congenital heart disease: a pilot study. Prog Pediatr Cardiol 72:101687","journal-title":"Prog Pediatr Cardiol"},{"issue":"3","key":"4416_CR23","doi-asserted-by":"publisher","first-page":"104","DOI":"10.5694\/mja16.00392","volume":"205","author":"NA Kasparian","year":"2016","unstructured":"Kasparian NA, Winlaw DS, Sholler GF (2016) Congenital heart health: how psychological care can make a difference. Med J Aust 205(3):104\u2013107","journal-title":"Med J Aust"},{"issue":"1","key":"4416_CR24","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1186\/s12884-017-1607-y","volume":"18","author":"T Carlsson","year":"2018","unstructured":"Carlsson T, Mattsson E (2018) Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner. BMC Pregnancy Childbirth 18(1):26","journal-title":"BMC Pregnancy Childbirth"},{"issue":"4","key":"4416_CR25","doi-asserted-by":"publisher","first-page":"e573","DOI":"10.1542\/peds.2008-2865","volume":"124","author":"F Miquel-Verges","year":"2009","unstructured":"Miquel-Verges F, Woods SL, Aucott SW, Boss RD, Sulpar LJ, Donohue PK (2009) Prenatal consultation with a neonatologist for congenital anomalies parental perceptions. Pediatrics 124(4):e573-9","journal-title":"Pediatrics"},{"issue":"9405","key":"4416_CR26","doi-asserted-by":"publisher","first-page":"312","DOI":"10.1016\/S0140-6736(03)15392-5","volume":"363","author":"L Fallowfield","year":"2004","unstructured":"Fallowfield L, Jenkins V (2004) Communicating sad, bad, and difficult news in medicine. Lancet 363(9405):312\u2013319","journal-title":"Lancet"},{"issue":"5","key":"4416_CR27","doi-asserted-by":"publisher","first-page":"417","DOI":"10.1097\/00130404-200609000-00010","volume":"12","author":"WG Evans","year":"2006","unstructured":"Evans WG, Tulsky JA, Back AL, Arnold RM (2006) Communication at Times of Transitions: How to Help Patients Cope with Loss and Re-Define Hope. Cancer J 12(5):417\u2013424","journal-title":"Cancer J"},{"issue":"1","key":"4416_CR28","doi-asserted-by":"publisher","first-page":"2","DOI":"10.1038\/jp.2016.123","volume":"37","author":"AL Kratovil","year":"2017","unstructured":"Kratovil AL, Julion WA (2017) Health-care provider communication with expectant parents during a prenatal diagnosis: an integrative review. J Perinatol 37(1):2\u201312","journal-title":"J Perinatol"},{"issue":"2","key":"4416_CR29","doi-asserted-by":"publisher","first-page":"239","DOI":"10.1007\/s00246-013-0765-6","volume":"35","author":"D Hilton-Kamm","year":"2014","unstructured":"Hilton-Kamm D, Sklansky M, Chang RK (2014) How not to tell parents about their child\u2019s new diagnosis of congenital heart disease: an Internet survey of 841 parents. Pediatr Cardiol 35(2):239\u2013252","journal-title":"Pediatr Cardiol"},{"issue":"3","key":"4416_CR30","doi-asserted-by":"publisher","first-page":"295","DOI":"10.1016\/j.pec.2008.11.015","volume":"74","author":"RL Street Jr","year":"2009","unstructured":"Street RL Jr, Makoul G, Arora NK, Epstein RM (2009) How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns 74(3):295\u2013301","journal-title":"Patient Educ Couns"},{"issue":"11","key":"4416_CR31","doi-asserted-by":"publisher","first-page":"1382","DOI":"10.1037\/hea0000097","volume":"33","author":"M van Osch","year":"2014","unstructured":"van Osch M, Sep M, van Vliet LM, van Dulmen S, Bensing JM (2014) Reducing patients\u2019 anxiety and uncertainty, and improving recall in bad news consultations. Health Psychol 33(11):1382\u20131390","journal-title":"Health Psychol"},{"key":"4416_CR32","doi-asserted-by":"publisher","DOI":"10.1007\/s00246-022-02882-4","author":"JA Keelan","year":"2022","unstructured":"Keelan JA, Moon Grady AJ, Arya B, Donofrio MT, Schidlow DN, Tacy TA, Stern KWD, Geiger MK (2022) Current state of fetal heart disease counseling and training: room for improvement?\u202f: endorsed by the Fetal Heart Society. Pediatr Cardiol. https:\/\/doi.org\/10.1007\/s00246-022-02882-4","journal-title":"Pediatr Cardiol"},{"key":"4416_CR33","doi-asserted-by":"publisher","first-page":"100265","DOI":"10.1016\/j.pecinn.2024.100265","volume":"4","author":"KW Harris","year":"2024","unstructured":"Harris KW, Schweiberger K, Kavanaugh-McHugh A, Arnold RM, Merlin J, Chang JC, Kasparian NA (2024) An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex CHD. PEC Innov 4:100265","journal-title":"PEC Innov"},{"issue":"10","key":"4416_CR34","doi-asserted-by":"publisher","first-page":"1392","DOI":"10.1177\/1049732305278876","volume":"15","author":"JG Burke","year":"2005","unstructured":"Burke JG, O\u2019Campo P, Peak GL, Gielen AC, McDonnell KA, Trochim WM (2005) An introduction to concept mapping as a participatory public health research method. Qual Health Res 15(10):1392\u20131410","journal-title":"Qual Health Res"},{"issue":"2","key":"4416_CR35","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1353\/cpr.2020.0025","volume":"14","author":"JR Thompson","year":"2020","unstructured":"Thompson JR, Burke JG (2020) Increasing Community Participation in Public Health Research: Applications for Concept Mapping Methodology. Prog Community Health Partnersh 14(2):243\u2013250","journal-title":"Prog Community Health Partnersh"},{"key":"4416_CR36","doi-asserted-by":"publisher","first-page":"229","DOI":"10.1016\/j.evalprogplan.2016.08.013","volume":"60","author":"LM Vaughn","year":"2017","unstructured":"Vaughn LM, Jones JR, Booth E, Burke JG (2017) Concept mapping methodology and community-engaged research: A perfect pairing. Eval Program Plann 60:229\u2013237","journal-title":"Eval Program Plann"},{"key":"4416_CR37","volume-title":"Concept mapping for planning and evaluation","author":"M Kane","year":"2006","unstructured":"Kane M, Trochim WM (2006) Concept mapping for planning and evaluation. Sage Publications Inc, Thousand Oaks"},{"key":"4416_CR38","volume-title":"Methods for community public health research: integrated and engaged approaches","author":"SM Albert","year":"2014","unstructured":"Albert SM, Burke JG (2014) Methods for community public health research: integrated and engaged approaches, 1st edn. Springer Publishing Company, New York","edition":"1"},{"issue":"3","key":"4416_CR39","doi-asserted-by":"publisher","first-page":"180","DOI":"10.1177\/0163278718819719","volume":"43","author":"MM Kim","year":"2020","unstructured":"Kim MM, Cheney A, Black A, Thorpe RJ Jr., Cene CW, Dave GJ, Schaal J, Vassar S, Ruktanonchai C, Frerichs L et al (2020) Trust in Community-Engaged Research Partnerships: A Methodological Overview of Designing a Multisite Clinical and Translational Science Awards (CTSA) Initiative. Eval Health Prof 43(3):180\u2013192","journal-title":"Eval Health Prof"},{"issue":"1","key":"4416_CR40","doi-asserted-by":"publisher","first-page":"97","DOI":"10.1007\/s11524-018-0297-8","volume":"96","author":"CN Holliday","year":"2019","unstructured":"Holliday CN, Morse SM, Irvin NA, Green-Manning A, Nitsch LM, Burke JG, Campbell JC, Decker MR (2019) Concept mapping: Engaging urban men to understand community influences on partner violence perpetration. J Urb Health 96(1):97\u2013111","journal-title":"J Urb Health"},{"issue":"7","key":"4416_CR41","doi-asserted-by":"publisher","first-page":"1174","DOI":"10.1007\/s00246-014-0911-9","volume":"35","author":"BT Davey","year":"2014","unstructured":"Davey BT, Donofrio MT, Moon-Grady AJ, Fifer CG, Cuneo BF, Falkensammer CB, Szwast AL, Rychik J (2014) Development and validation of a fetal cardiovascular disease severity scale. Pediatr Cardiol 35(7):1174\u20131180","journal-title":"Pediatr Cardiol"},{"issue":"1","key":"4416_CR42","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1016\/j.acap.2020.04.011","volume":"21","author":"AK Ettinger","year":"2021","unstructured":"Ettinger AK, Ray KN, Burke JG, Thompson J, Navratil J, Chavis V, Cole S, Jenks T, Miller E (2021) A Community Partnered Approach for Defining Child and Youth Thriving. Acad Pediatr 21(1):53\u201362","journal-title":"Acad Pediatr"},{"issue":"1","key":"4416_CR43","doi-asserted-by":"publisher","first-page":"182","DOI":"10.1177\/1090198116648291","volume":"44","author":"L Frerichs","year":"2017","unstructured":"Frerichs L, Kim M, Dave G, Cheney A, Hassmiller Lich K, Jones J, Young TL, Cene CW, Varma DS, Schaal J et al (2017) Stakeholder Perspectives on Creating and Maintaining Trust in Community-Academic Research Partnerships. Health Educ Behav 44(1):182\u2013191","journal-title":"Health Educ Behav"},{"issue":"26","key":"4416_CR44","doi-asserted-by":"publisher","first-page":"2456","DOI":"10.1056\/NEJMp1802313","volume":"378","author":"AJH Kind","year":"2018","unstructured":"Kind AJH, Buckingham WR (2018) Making Neighborhood-Disadvantage Metrics Accessible - The Neighborhood Atlas. N Engl J Med 378(26):2456\u20132458","journal-title":"N Engl J Med"},{"key":"4416_CR45","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2023.107764","volume":"113","author":"CH Saunders","year":"2023","unstructured":"Saunders CH, Durand M-A, Scalia P, Kirkland KB, MacMartin MA, Barnato AE, Milne DW, Collison J, Bennett A, Wasp G (2023) \u201cIt helps us say what\u2019s important...\u201d Developing serious illness topics: a clinical visit agenda-setting tool. Patient Educ Couns 113:107764","journal-title":"Patient Educ Couns"},{"issue":"10","key":"4416_CR46","doi-asserted-by":"publisher","first-page":"e844","DOI":"10.1200\/JOP.2016.018796","volume":"13","author":"JW Childers","year":"2017","unstructured":"Childers JW, Back AL, Tulsky JA, Arnold RM (2017) REMAP: A Framework for Goals of Care Conversations. J Oncol Pract 13(10):e844\u2013e850","journal-title":"J Oncol Pract"},{"issue":"12","key":"4416_CR47","doi-asserted-by":"publisher","first-page":"7259","DOI":"10.1007\/s00520-021-06445-w","volume":"29","author":"S Choi","year":"2021","unstructured":"Choi S, Choi J (2021) Effects of the teach-back method among cancer patients: a systematic review of the literature. Support Care Cancer 29(12):7259\u20137268","journal-title":"Support Care Cancer"},{"issue":"4","key":"4416_CR48","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1634\/theoncologist.5-4-302","volume":"5","author":"WF Baile","year":"2000","unstructured":"Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP (2000) SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 5(4):302\u2013311","journal-title":"Oncologist"},{"issue":"3","key":"4416_CR49","first-page":"164","volume":"55","author":"AL Back","year":"2005","unstructured":"Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K (2005) Approaching difficult communication tasks in oncology. CA Cancer J Clin 55(3):164\u2013177","journal-title":"CA Cancer J Clin"},{"issue":"18","key":"4416_CR50","doi-asserted-by":"publisher","first-page":"1713","DOI":"10.1056\/NEJMp1606402","volume":"375","author":"AL Simpkin","year":"2016","unstructured":"Simpkin AL, Schwartzstein RM (2016) Tolerating Uncertainty - The Next Medical Revolution? N Engl J Med 375(18):1713\u20131715","journal-title":"N Engl J Med"},{"key":"4416_CR51","doi-asserted-by":"publisher","DOI":"10.3390\/jcdd10090394","author":"K Schweiberger","year":"2023","unstructured":"Schweiberger K, Harris KW, Kavanaugh-McHugh A, Soudi A, Arnold RM, Merlin JS, Kasparian NA, Chang JC (2023) \u201cI just want you to hear that term\u201d: characterizing language used in fetal cardiology consultations. J Cardiovasc Dev Dis. https:\/\/doi.org\/10.3390\/jcdd10090394","journal-title":"J Cardiovasc Dev Dis"},{"issue":"1","key":"4416_CR52","doi-asserted-by":"publisher","first-page":"78","DOI":"10.1111\/j.1747-0803.2012.00706.x","volume":"8","author":"B Arya","year":"2013","unstructured":"Arya B, Glickstein JS, Levasseur SM, Williams IA (2013) Parents of children with congenital heart disease prefer more information than cardiologists provide. Congenit Heart Dis 8(1):78\u201385","journal-title":"Congenit Heart Dis"},{"issue":"2","key":"4416_CR53","doi-asserted-by":"publisher","first-page":"190","DOI":"10.1046\/j.1365-2648.2002.02259.x","volume":"39","author":"YR Tak","year":"2002","unstructured":"Tak YR, McCubbin M (2002) Family stress, perceived social support and coping following the diagnosis of a child\u2019s congenital heart disease. J Adv Nurs 39(2):190\u2013198","journal-title":"J Adv Nurs"},{"issue":"11","key":"4416_CR54","doi-asserted-by":"publisher","first-page":"901","DOI":"10.1097\/PCC.0000000000003293","volume":"24","author":"CFB Driscoll","year":"2023","unstructured":"Driscoll CFB, Christofferson J, McWhorter LG, Demianczyk AC, Brosig CL, Jackson EA, Gramszlo C, Zyblewski SC, Kazak AE, Sood E (2023) A Psychosocial Care Model for Families Affected by Congenital Heart Disease. Pediatr Crit Care Med 24(11):901\u2013909","journal-title":"Pediatr Crit Care Med"},{"issue":"12","key":"4416_CR55","doi-asserted-by":"publisher","first-page":"1994","DOI":"10.1001\/jamainternmed.2014.5271","volume":"174","author":"RE Bernacki","year":"2014","unstructured":"Bernacki RE, Block SD, American College of Physicians High Value Care Task F (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174(12):1994\u20132003","journal-title":"JAMA Intern Med"},{"issue":"1","key":"4416_CR56","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1146\/annurev-statistics-010814-020148","volume":"4","author":"D Spiegelhalter","year":"2017","unstructured":"Spiegelhalter D (2017) Risk and uncertainty communication. Annu Rev Stat its Appl 4(1):31\u201360","journal-title":"Annu Rev Stat its Appl"},{"key":"4416_CR57","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2025.11.026","author":"S Syme","year":"2025","unstructured":"Syme S, Schweiberger K, Chang JC, Kavanaugh-McHugh A, Kasparian NA, Arnold RM, Harris KW (2025) How clinicians prenatally discuss management options and outcomes for congenital heart disease. J Pain Symptom Manage. https:\/\/doi.org\/10.1016\/j.jpainsymman.2025.11.026","journal-title":"J Pain Symptom Manage"},{"issue":"4","key":"4416_CR58","doi-asserted-by":"publisher","first-page":"561","DOI":"10.1017\/S1047951117002761","volume":"28","author":"HS Hancock","year":"2018","unstructured":"Hancock HS, Pituch K, Uzark K, Bhat P, Fifer C, Silveira M, Yu S, Welch S, Donohue J, Lowery R et al (2018) A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiol Young 28(4):561\u2013570","journal-title":"Cardiol Young"},{"key":"4416_CR59","doi-asserted-by":"publisher","DOI":"10.1017\/9781108921107","volume-title":"Navigating communication with seriously ill patients: balancing honesty with empathy and hope","author":"RM Arnold","year":"2024","unstructured":"Arnold RM, Back AL, Carey EC, Tulsky JA, Wood GJ, Yang HB (2024) Navigating communication with seriously ill patients: balancing honesty with empathy and hope. Cambridge University Press, Cambridge"},{"key":"4416_CR60","first-page":"363","volume":"2","author":"RM Arnold","year":"2017","unstructured":"Arnold RM, Back AL, Baile WF, Edwards KA, Tulsky JA (2017) The Oncotalk\/Vitaltalk model. Oxf Textb Commun Oncol Palliative Care 2:363\u20138","journal-title":"Oxf Textb Commun Oncol Palliative Care"},{"issue":"7","key":"4416_CR61","doi-asserted-by":"publisher","first-page":"1988","DOI":"10.1016\/j.pec.2021.10.025","volume":"105","author":"J Altamirano","year":"2022","unstructured":"Altamirano J, Kline M, Schwartz R, Fassiotto M, Maldonado Y, Weimer-Elder B (2022) The effect of a relationship-centered communication program on patient experience and provider wellness. Patient Educ Couns 105(7):1988\u20131995","journal-title":"Patient Educ Couns"},{"issue":"7","key":"4416_CR62","doi-asserted-by":"publisher","first-page":"1548","DOI":"10.1007\/s00246-022-02882-4","volume":"43","author":"JA Keelan","year":"2022","unstructured":"Keelan JA, Moon Grady AJ, Arya B, Donofrio MT, Schidlow DN, Tacy TA, Stern KWD, Geiger MK (2022) Current State of Fetal Heart Disease Counseling and Training: Room for Improvement? Pediatr Cardiol 43(7):1548\u20131558","journal-title":"Pediatr Cardiol"},{"issue":"1","key":"4416_CR63","doi-asserted-by":"publisher","first-page":"70","DOI":"10.1111\/j.1369-7625.2008.00516.x","volume":"12","author":"JE DeVoe","year":"2009","unstructured":"DeVoe JE, Wallace LS, Fryer GE Jr. (2009) Measuring patients\u2019 perceptions of communication with healthcare providers: do differences in demographic and socioeconomic characteristics matter? Health Expect 12(1):70\u201380","journal-title":"Health Expect"},{"key":"4416_CR64","doi-asserted-by":"publisher","first-page":"128","DOI":"10.1016\/j.pec.2022.10.010","volume":"106","author":"L McKeown","year":"2023","unstructured":"McKeown L, Hong YA, Kreps GL, Xue H (2023) Trends and differences in perceptions of patient-centered communication among adults in the US. Patient Educ Couns 106:128\u2013134","journal-title":"Patient Educ Couns"},{"issue":"11","key":"4416_CR65","doi-asserted-by":"publisher","first-page":"e150","DOI":"10.2105\/AJPH.2014.302099","volume":"104","author":"JE Kucik","year":"2014","unstructured":"Kucik JE, Nembhard WN, Donohue P, Devine O, Wang Y, Minkovitz CS, Burke T (2014) Community Socioeconomic Disadvantage and the Survival of Infants With Congenital Heart Defects. Am J Public Health 104(11):e150\u2013e157","journal-title":"Am J Public Health"},{"issue":"4","key":"4416_CR66","doi-asserted-by":"publisher","first-page":"291","DOI":"10.1111\/ppe.12564","volume":"33","author":"KE Best","year":"2019","unstructured":"Best KE, Vieira R, Glinianaia SV, Rankin J (2019) Socio-economic inequalities in mortality in children with congenital heart disease: A systematic review and meta\u2010analysis. Paediatr Perinat Epidemiol 33(4):291\u2013309","journal-title":"Paediatr Perinat Epidemiol"},{"issue":"2","key":"4416_CR67","first-page":"277","volume":"98","author":"CL Grines","year":"2021","unstructured":"Grines CL, Klein AJ, Bauser-Heaton H, Alkhouli M, Katukuri N, Aggarwal V, Altin SE, Batchelor WB, Blankenship JC, Fakorede F et al (2021) Racial and ethnic disparities in coronary, vascular, structural, and congenital heart disease. Catheter Cardiovasc Interv 98(2):277\u2013294","journal-title":"Catheter Cardiovasc Interv"}],"container-title":["Pediatric Cardiology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00246-026-04416-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00246-026-04416-8","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00246-026-04416-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,8]],"date-time":"2026-08-08T06:02:20Z","timestamp":1786168940000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00246-026-04416-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,8]]},"references-count":67,"alternative-id":["4416"],"URL":"https:\/\/doi.org\/10.1007\/s00246-026-04416-8","relation":{},"ISSN":["0172-0643","1432-1971"],"issn-type":[{"value":"0172-0643","type":"print"},{"value":"1432-1971","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,8]]},"assertion":[{"value":"25 May 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 July 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 August 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"The authors declare no competing interests.","order":1,"name":"Ethics","label":"Conflict of interest","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Informed consent was obtained from all subjects involved in the study.","order":2,"name":"Ethics","label":"Ethical Approval and Consent to Participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":3,"name":"Ethics","label":"Consent for Publication","group":{"name":"EthicsHeading","label":"Declarations"}}]}}