{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,30]],"date-time":"2026-07-30T22:03:53Z","timestamp":1785449033552,"version":"3.56.0"},"reference-count":40,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T00:00:00Z","timestamp":1785283200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T00:00:00Z","timestamp":1785283200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To understand the experiences of caregivers of infants with cleft lip and\/or palate (CL\/P) as it relates to current and future ableism as their child grows.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Qualitative study design utilizing semistructured interviews, thematic analysis, and descriptive phenomenology.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>Single, tertiary-care pediatric hospital providing nasoalveolar molding (NAM) treatment alongside multidisciplinary CL\/P care team.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>Fifteen caregivers of infants (0-12 months old) with nonsyndromic complete CL\/P.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interventions<\/jats:title>\n                    <jats:p>Not applicable.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main Outcome Measure(s)<\/jats:title>\n                    <jats:p>Caregiver perceptions and experiences related to facial ableism during infancy.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Four major themes were identified: (1) caregiver experiences related to receiving a CL\/P diagnosis prenatally, (2) perceived emphasis on the \u201cfixability\u201d of CL\/P by healthcare providers, family, and friends, (3) concerns about their child's future social acceptance, and (4) the increased caregiving burden associated with CL\/P compared to their non-CL\/P peers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Caregiver experiences during infancy for patients with CL\/P extend far beyond medical and surgical concerns and are largely informed by early perceptions of facial differences and anticipation of facial ableism. By understanding caregiver experiences, multidisciplinary CL\/P teams can better support patients and families, as early as prenatally, through antiableist approaches to care, clinical practice, and policy.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656261472183","type":"journal-article","created":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T14:09:35Z","timestamp":1785334175000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Caregivers\u2019 Perception of Cleft Lip and\/or Palate During Infancy: A Qualitative Study"],"prefix":"10.1177","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1905-0345","authenticated-orcid":false,"given":"Brandon","family":"Linaksita","sequence":"first","affiliation":[{"name":"The Hospital for Sick Children"},{"name":"Faculty of Dentistry, University of Toronto, Toronto, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0000-7352-1489","authenticated-orcid":false,"given":"Paniz","family":"Haghighi","sequence":"additional","affiliation":[{"name":"The Hospital for Sick Children"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-8843-7732","authenticated-orcid":false,"given":"Gabriella A.","family":"Garisto","sequence":"additional","affiliation":[{"name":"The Hospital for Sick Children"},{"name":"Faculty of Dentistry, University of Toronto, Toronto, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-0939-9141","authenticated-orcid":false,"given":"Camila","family":"Caro","sequence":"additional","affiliation":[{"name":"The Hospital for Sick Children"},{"name":"Faculty of Dentistry, University of Toronto, Toronto, ON, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,29]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jobcr.2021.09.011"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.3390\/genes14081603"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1080\/07853890.2023.2215540"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jormas.2021.05.008"},{"key":"e_1_3_3_6_2","unstructured":"Ministry of Health. The Ontario cleft lip and palate and craniofacial dental program. Accessed June 21 2024. https:\/\/www.ontario.ca\/page\/ontario-cleft-lip-and-palate-and-craniofacial-dental-program."},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2019.21036"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.3390\/children11030332"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.1097\/PRS.0000000000004987"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1177\/10556656221082759"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijporl.2018.02.027"},{"issue":"155","key":"e_1_3_3_12_2","first-page":"32","article-title":"Perceptions, expectations, and reactions of caregivers to cleft lip and palate repair in a tertiary hospital","volume":"39","author":"Aikins EA","year":"2016","unstructured":"Aikins EA, Akinbami BO. 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