{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T00:44:29Z","timestamp":1785545069670,"version":"3.56.0"},"reference-count":39,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Pediatr Parent"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Infants with complex heart disease often have delayed development, learning difficulties, and mental health problems as they grow older. Their parents and other caregivers engage in online health information\u2013seeking behavior to understand and support their children\u2019s health and development.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n In this study, we analyze the presence, nature, and presentation of information about neurodevelopment on the websites of congenital cardiac surgical programs in the United States.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n \n We used a mixed methods approach, specifically a convergent design. We correlated the presence and presentation of information about neurodevelopment on each program\u2019s website with state-level and program-specific factors extracted from multiple publicly available databases. Quantitative analysis methods included descriptive analyses, Student\n t<\/jats:italic>\n tests, Pearson\n \n chi-square test, and multivariate logistic regression analysis, all performed using SPSS (IBM Corp). Qualitative methods included both inductive and deductive content analysis.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Only 39% (50\/129) of programs provided any information about neurodevelopment online. High surgical volume correlated with the presence of online information (\n P<\/jats:italic>\n <.001). Websites were written at an average 7th to 10th grade reading level, and fewer than 5% of websites had information in a language other than English. Two semantic clusters of website format, content, and element selection were identified, reflecting distinct approaches to adult learners. Program websites clustered into \u201csage on the stage\u201d and \u201cguide on the side\u201d formats. Few websites incorporated features caregivers previously identified as useful, with only 6% including the four most helpful features.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n We highlight the paucity of accessible caregiver-oriented information about neurodevelopment on congenital cardiac surgical programs\u2019 websites in the United States and characterize two primary website models. The lack of information may negatively impact caregiver understanding of and engagement with neurodevelopmental services for their child with a congenital heart defect. Future research should explore the impact of each website model on caregiver understanding of and engagement with neurodevelopmental services, as well as the generalizability of these findings to other domains of pediatric subspecialty care.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/70630","type":"journal-article","created":{"date-parts":[[2026,7,14]],"date-time":"2026-07-14T20:15:58Z","timestamp":1784060158000},"page":"e70630-e70630","source":"Crossref","is-referenced-by-count":0,"title":["Online Information About Cardiac Neurodevelopment: Mixed Methods Study"],"prefix":"10.2196","volume":"9","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8983-3329","authenticated-orcid":false,"given":"Jesse","family":"Boyett Anderson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-6655-0623","authenticated-orcid":false,"given":"Gabrielle","family":"Chinman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-5034-1380","authenticated-orcid":false,"given":"Diego","family":"Cisneros","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8362-7997","authenticated-orcid":false,"given":"Xiao","family":"Zhang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7678-2980","authenticated-orcid":false,"given":"Peter","family":"Ferrazzano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0626-8409","authenticated-orcid":false,"given":"Krisjon R","family":"Olson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,7,14]]},"reference":[{"issue":"23","key":"R1","doi-asserted-by":"publisher","DOI":"10.1097\/MD.0000000000020593","article-title":"Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990-2017","volume":"99","author":"Wu","journal-title":"Medicine (Baltimore)"},{"issue":"14","key":"R2","doi-asserted-by":"publisher","first-page":"1149","DOI":"10.1016\/j.jacc.2010.03.085","article-title":"Changing mortality in congenital heart disease","volume":"56","author":"Khairy","journal-title":"J Am Coll Cardiol"},{"key":"R3","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.03.071","article-title":"The impact of neurodevelopmental and psychosocial outcomes on health-related quality of life in survivors of congenital heart disease","volume":"174","author":"Marino","journal-title":"J Pediatr"},{"issue":"2","key":"R4","doi-asserted-by":"publisher","DOI":"10.1136\/openhrt-2018-000998","article-title":"\u201cBig issues\u201d in neurodevelopment for children and adults with congenital heart disease","volume":"6","author":"Verrall","journal-title":"Open Heart"},{"issue":"6","key":"R5","doi-asserted-by":"publisher","first-page":"888","DOI":"10.1017\/S1047951121002158","article-title":"Neurodevelopmental and psychosocial interventions for individuals with CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative","volume":"31","author":"Cassidy","journal-title":"Cardiol Young"},{"issue":"3","key":"R6","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2022-060995","article-title":"Factors associated with attendance for cardiac neurodevelopmental evaluation","volume":"152","author":"Ortinau","journal-title":"Pediatrics"},{"issue":"11","key":"R7","doi-asserted-by":"publisher","first-page":"1603","DOI":"10.1017\/S1047951120003522","article-title":"Variations in practice in cardiac neurodevelopmental follow-up programs","volume":"30","author":"Miller","journal-title":"Cardiol Young"},{"issue":"1","key":"R8","doi-asserted-by":"publisher","first-page":"78","DOI":"10.1111\/j.1747-0803.2012.00706.x","article-title":"Parents of children with congenital heart disease prefer more information than cardiologists provide","volume":"8","author":"Arya","journal-title":"Congenit Heart Dis"},{"issue":"1","key":"R9","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1016\/j.acap.2019.09.009","article-title":"Parental perceptions of the internet and social media as a source of pediatric health information","volume":"20","author":"Bryan","journal-title":"Acad Pediatr"},{"issue":"1","key":"R10","doi-asserted-by":"publisher","DOI":"10.1186\/s12875-018-0805-7","article-title":"Odds of talking to healthcare providers as the initial source of healthcare information: updated cross-sectional results from the Health Information National Trends Survey (HINTS)","volume":"19","author":"Swoboda","journal-title":"BMC Fam Pract"},{"issue":"4","key":"R11","doi-asserted-by":"publisher","first-page":"722","DOI":"10.1017\/S1047951116001177","article-title":"eHealth literacy and preferences for eHealth resources in parents of children with complex CHD","volume":"27","author":"Kasparian","journal-title":"Cardiol Young"},{"issue":"2","key":"R12","doi-asserted-by":"publisher","first-page":"325","DOI":"10.1017\/S1047951123001634","article-title":"Disparities in resource utilisation by families of children with cardiac conditions","volume":"34","author":"Chou","journal-title":"Cardiol Young"},{"issue":"6","key":"R13","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2023-064419","article-title":"Enhancing NICU care and communication: perspectives of moderately preterm infant parents","volume":"153","author":"Osborne","journal-title":"Pediatrics"},{"issue":"1","key":"R14","doi-asserted-by":"publisher","DOI":"10.2196\/ijmr.3819","article-title":"Content and quality of information websites about congenital heart defects following a prenatal diagnosis","volume":"4","author":"Carlsson","journal-title":"Interact J Med Res"},{"issue":"2","key":"R15","doi-asserted-by":"publisher","DOI":"10.2196\/ijmr.7844","article-title":"Quality of patient information websites about congenital heart defects: mixed-methods study of perspectives among individuals with experience of a prenatal diagnosis","volume":"6","author":"Carlsson","journal-title":"Interact J Med Res"},{"issue":"7337","key":"R16","doi-asserted-by":"publisher","first-page":"573","DOI":"10.1136\/bmj.324.7337.573","article-title":"How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews","volume":"324","author":"Eysenbach","journal-title":"BMJ"},{"issue":"3","key":"R17","doi-asserted-by":"publisher","first-page":"254","DOI":"10.1001\/jamasurg.2019.4388","article-title":"Practical guide to mixed methods","volume":"155","author":"Dossett","journal-title":"JAMA Surg"},{"issue":"9","key":"R18","doi-asserted-by":"publisher","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations","volume":"89","author":"O\u2019Brien","journal-title":"Acad Med"},{"key":"R19","unstructured":"Saldan\u0303a J . The Coding Manual for Qualitative Researchers. 4th ed. SAGE Publishing Inc; 2021. ISBN: 9781529731743"},{"key":"R20","doi-asserted-by":"crossref","unstructured":"Kenworthy N . Crowded Out: The True Costs of Crowdfunding Healthcare. The MIT Press; 2024. [doi: 10.7551\/mitpress\/14890.001.0001]","DOI":"10.7551\/mitpress\/14890.001.0001"},{"issue":"9","key":"R21","doi-asserted-by":"publisher","first-page":"2218","DOI":"10.1111\/jan.13726","article-title":"A systematic method for reviewing and analysing health information on consumer-oriented websites","volume":"74","author":"Rew","journal-title":"J Adv Nurs"},{"issue":"15","key":"R22","doi-asserted-by":"crossref","first-page":"1244","DOI":"10.1001\/jama.1997.03540390074039","volume":"277","author":"Silberg","journal-title":"JAMA"},{"issue":"20","key":"R23","doi-asserted-by":"publisher","first-page":"e175","DOI":"10.1161\/CIRCULATIONAHA.114.010064","article-title":"Supporting development in children with congenital heart disease. Cardiology patient page","volume":"130","author":"Brosig","journal-title":"Circulation"},{"issue":"1","key":"R24","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1080\/87567555.1993.9926781","article-title":"From sage on the stage to guide on the side","volume":"41","author":"King","journal-title":"College Teaching"},{"issue":"3","key":"R25","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2017-2432","article-title":"Disparities in outcomes and resource use after hospitalization for cardiac surgery by neighborhood income","volume":"141","author":"Anderson","journal-title":"Pediatrics"},{"issue":"4","key":"R26","doi-asserted-by":"publisher","DOI":"10.1016\/j.semperi.2022.151581","article-title":"Disparities in surgical outcomes of neonates with congenital heart disease across regions, centers, and populations","volume":"46","author":"Gallegos","journal-title":"Semin Perinatol"},{"issue":"12","key":"R27","doi-asserted-by":"publisher","first-page":"1034","DOI":"10.1161\/CIRCULATIONAHA.119.043392","article-title":"Disparities in congenital heart disease mortality based on proximity to a specialized pediatric cardiac center","volume":"141","author":"Kaltman","journal-title":"Circulation"},{"key":"R28","unstructured":"National Center for Educational Statistics. Highlights of the 2023 U.S. PIAAC Results. URL: https:\/\/nces.ed.gov\/surveys\/piaac\/2023\/national_results.asp [Accessed 23-05-2026]"},{"key":"R29","unstructured":"Kutner MA . United States Department of Education and National Center for Education Statistics. The health literacy of America\u2019s adults: results from the National Assessment of Adult Literacy. 2006. URL: https:\/\/hdl.loc.gov\/loc.gdc\/gdcebookspublic.2019667181 [Accessed 23-05-2026]"},{"issue":"2","key":"R30","doi-asserted-by":"publisher","first-page":"60","DOI":"10.1093\/intqhc\/mzl069","article-title":"Language proficiency and adverse events in US hospitals: a pilot study","volume":"19","author":"Divi","journal-title":"Int J Qual Health Care"},{"issue":"12","key":"R31","doi-asserted-by":"publisher","DOI":"10.1001\/jamapediatrics.2020.3215","article-title":"Association between parent comfort with English and adverse events among hospitalized children","volume":"174","author":"Khan","journal-title":"JAMA Pediatr"},{"key":"R32","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e1602","article-title":"Association between low functional health literacy and mortality in older adults: longitudinal cohort study","volume":"344","author":"Bostock","journal-title":"BMJ"},{"issue":"2","key":"R33","doi-asserted-by":"publisher","first-page":"e48","DOI":"10.1161\/CIR.0000000000000579","article-title":"Health literacy and cardiovascular disease: fundamental relevance to primary and secondary prevention: a scientific statement from the American Heart Association","volume":"138","author":"Magnani","journal-title":"Circulation"},{"key":"R34","unstructured":"Communicating clearly and effectively to patients: how to overcome common communication challenges in health care [white paper]. Joint Commission International; 2018. URL: https:\/\/www.scribd.com\/document\/787458325\/jci-wp-communicating-clearly-final-1 [Accessed 23-05-2026]"},{"key":"R35","unstructured":"Brach C , editor. AHRQ health literacy universal precautions toolkit, 3rd edition. Agency for Healthcare Research and Quality; Mar 2024. URL: https:\/\/www.ahrq.gov\/sites\/default\/files\/wysiwyg\/health-literacy\/3rd-edition-toolkit\/health-literacy-toolkit-third-edition.pdf [Accessed 23-05-2026]"},{"key":"R36","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijer.2019.03.001","article-title":"Back from \u201cguide on the side\u201d to \u201csage on the stage\u201d? Effects of teacher-guided and student-activating teaching methods on student learning in higher education","volume":"95","author":"Fischer","journal-title":"Int J Educ Res"},{"issue":"12","key":"R37","doi-asserted-by":"publisher","DOI":"10.2196\/28102","article-title":"The application of human-centered design approaches in health research and innovation: a narrative review of current practices","volume":"9","author":"G\u00f6ttgens","journal-title":"JMIR mHealth uHealth"},{"issue":"5","key":"R38","doi-asserted-by":"publisher","first-page":"1605","DOI":"10.1016\/j.jtcvs.2020.11.074","article-title":"Impact of early Coronavirus Disease 2019 pandemic on pediatric cardiac surgery in China","volume":"161","author":"Shi","journal-title":"J Thorac Cardiovasc Surg"},{"issue":"1","key":"R39","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1017\/S1047951121001608","article-title":"COVID-19 pandemic implications in paediatric and congenital heart surgery in Brazil","volume":"32","author":"Miana","journal-title":"Cardiol Young"}],"container-title":["JMIR Pediatrics and Parenting"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/pediatrics.jmir.org\/2026\/1\/e70630","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T22:27:12Z","timestamp":1785536832000},"score":1,"resource":{"primary":{"URL":"https:\/\/pediatrics.jmir.org\/2026\/1\/e70630"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,14]]},"references-count":39,"URL":"https:\/\/doi.org\/10.2196\/70630","relation":{},"ISSN":["2561-6722"],"issn-type":[{"value":"2561-6722","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,14]]},"article-number":"v9i23e70630"}}