{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,8]],"date-time":"2026-07-08T19:07:16Z","timestamp":1783537636983,"version":"3.55.0"},"reference-count":34,"publisher":"Oxford University Press (OUP)","issue":"9","license":[{"start":{"date-parts":[[2021,8,5]],"date-time":"2021-08-05T00:00:00Z","timestamp":1628121600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/100000056","name":"National Institute of Nursing Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000056","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000118","name":"Office of Behavioral and Social Sciences Research","doi-asserted-by":"publisher","award":["R01 NR016235"],"award-info":[{"award-number":["R01 NR016235"]}],"id":[{"id":"10.13039\/100000118","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000118","name":"Office of Behavioral and Social Sciences Research","doi-asserted-by":"publisher","award":["K01 NR018907"],"award-info":[{"award-number":["K01 NR018907"]}],"id":[{"id":"10.13039\/100000118","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Cohn Family Foundation"},{"name":"Rush University Medical Center"},{"DOI":"10.13039\/100008199","name":"RTI International","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008199","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,9,27]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>AYA with SB (15\u201325; n\u2009=\u2009298) and parents of children with SB (n\u2009=\u2009200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic\/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial\/ethnic identity reported greater impact [p \u2264 .03]). Impacts to mental and behavioral health (n\u2009=\u200944), interference with medical care (n\u2009=\u200928), and interpersonal challenges (n\u2009=\u200927) were the most commonly occurring qualitative themes.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jpepsy\/jsab070","type":"journal-article","created":{"date-parts":[[2021,5,28]],"date-time":"2021-05-28T19:34:12Z","timestamp":1622230452000},"page":"1040-1050","source":"Crossref","is-referenced-by-count":17,"title":["\u201cWe Are Anxious Every Day\u201d: COVID-19 Impacts on Youth with Spina Bifida"],"prefix":"10.1093","volume":"46","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6759-8380","authenticated-orcid":false,"given":"Colleen","family":"Stiles-Shields","sequence":"first","affiliation":[{"name":"Section of Community Behavioral Health, Department of Psychiatry and Behavioral Sciences, Rush University Medical Center, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1506-4416","authenticated-orcid":false,"given":"Tessa K","family":"Kritikos","sequence":"additional","affiliation":[{"name":"Psychology Department, Loyola University Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monique M","family":"Ridosh","sequence":"additional","affiliation":[{"name":"Loyola University Chicago, Marcella Niehoff School of Nursing, Maywood, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meredith","family":"Starnes","sequence":"additional","affiliation":[{"name":"Psychology Department, Loyola University Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Grayson N","family":"Holmbeck","sequence":"additional","affiliation":[{"name":"Psychology Department, Loyola University Chicago, Chicago, IL, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2021,8,5]]},"reference":[{"key":"2021092718321114200_jsab070-B2","doi-asserted-by":"crossref","first-page":"912","DOI":"10.1016\/S0140-6736(20)30460-8","article-title":"The psychological impact of quarantine and how to reduce it: rapid review of the evidence","volume":"395","author":"Brooks","year":"2020","journal-title":"The Lancet"},{"issue":"9","key":"2021092718321114200_jsab070-B3","doi-asserted-by":"crossref","first-page":"e14","DOI":"10.2105\/AJPH.2014.302098","article-title":"The association between race\/ethnicity and major birth defects in the United States, 1999\u20132007","volume":"104","author":"Canfield","year":"2014","journal-title":"American Journal of Public Health"},{"key":"2021092718321114200_jsab070-B4","doi-asserted-by":"crossref","first-page":"15007","DOI":"10.1038\/nrdp.2015.7","article-title":"Spina bifida","volume":"1","author":"Copp","year":"2015","journal-title":"Nature Reviews. 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