{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T15:23:31Z","timestamp":1780500211685,"version":"3.54.1"},"reference-count":27,"publisher":"American Academy of Pediatrics (AAP)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2003,8,1]]},"abstract":"<jats:p>Objective. This study was conducted to record subjective information concerning parental experiences and preferences with regard to informing interviews for cleft lip and\/or palate. The analysis of these data was intended to help informants improve the way in which such conversations are conducted.<\/jats:p><jats:p>Methods. The study used a self-administered questionnaire. Study participants were the biological parents of children who had cleft lip and\/or palate and were seen in the University of Pittsburgh Cleft Palate-Craniofacial Center.<\/jats:p><jats:p>Results. Results revealed that parents wanted informing health professionals to be in greater control of the informing conversation, to show more caring and confidence, to show more of their own feelings, to give parents more of an opportunity to talk and show feelings, to make a greater effort to comfort parents, to provide more information, to initiate more of a discussion about the association between clefts and mental retardation\/learning disabilities, and to provide more referrals to other parents during the informing interview. A positive association between the degree to which parents reported knowing the health professionals and reported satisfaction was identified for 10 dimensions of health professional behavior.<\/jats:p><jats:p>Conclusions. Parents are dissatisfied with several aspects of informing interviews for cleft lip and\/or palate. The results of this study suggest ways to improve informing interviews for oral-facial clefts and other congenital anomalies.<\/jats:p>","DOI":"10.1542\/peds.112.2.308","type":"journal-article","created":{"date-parts":[[2004,8,14]],"date-time":"2004-08-14T00:43:47Z","timestamp":1092444227000},"page":"308-313","source":"Crossref","is-referenced-by-count":42,"title":["Parental Evaluation of Informing Interviews for Cleft Lip and\/or Palate"],"prefix":"10.1542","volume":"112","author":[{"given":"Abigail L.","family":"Byrnes","sequence":"first","affiliation":[{"name":"Department of Genetics, Magee-Womens Hospital, Pittsburgh, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nancy W.","family":"Berk","sequence":"additional","affiliation":[{"name":"Department of Behavioral Sciences, School of Dental Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret E.","family":"Cooper","sequence":"additional","affiliation":[{"name":"Division of Oral Biology, School of Dental Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary L.","family":"Marazita","sequence":"additional","affiliation":[{"name":"Division of Oral Biology, School of Dental Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania"},{"name":"Department of Human Genetics, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2003,8,1]]},"reference":[{"key":"2021121003360813000_R1","doi-asserted-by":"crossref","unstructured":"Dar H, Winter ST, Tal Y. Families of children with cleft lips and palates: concerns and counselling. Dev Med Child Neurol.1974;16:513\u2013517","DOI":"10.1111\/j.1469-8749.1974.tb03377.x"},{"key":"2021121003360813000_R2","unstructured":"Edelstein J, Strydom LM. The doctor\u2019s dilemma: how and when to tell parents that their child is handicapped. S Afr Med J.1981;59:534\u2013536"},{"key":"2021121003360813000_R3","doi-asserted-by":"crossref","unstructured":"Bradbury ET, Hewison J. Early parental adjustment to visible congenital disfigurement. Child Care Health Dev.1994;20:251\u2013266","DOI":"10.1111\/j.1365-2214.1994.tb00388.x"},{"key":"2021121003360813000_R4","doi-asserted-by":"crossref","unstructured":"Ptacek JT, Eberhardt TL. Breaking bad news: a review of the literature. JAMA.1996;276:496\u2013502","DOI":"10.1001\/jama.276.6.496"},{"key":"2021121003360813000_R5","doi-asserted-by":"crossref","unstructured":"Olshansky S. Chronic sorrow: a response to having a mentally defective child. Soc Casework.1962;43:191\u2013194","DOI":"10.1177\/104438946204300404"},{"key":"2021121003360813000_R6","doi-asserted-by":"crossref","unstructured":"Willner SK, Crane R. A parental dilemma: the child with a marginal handicap. Soc Casework.1979;60:30\u201335","DOI":"10.1177\/104438947906000104"},{"key":"2021121003360813000_R7","doi-asserted-by":"crossref","unstructured":"Solnit A, Stark MH. Mourning and the birth of a defective child. Psychoanalytic Study Child.1962;16:9\u201324","DOI":"10.1080\/00797308.1961.11823222"},{"key":"2021121003360813000_R8","doi-asserted-by":"crossref","unstructured":"Olson J, Edwards M, Hunter JA. The physician\u2019s role in delivering sensitive information to families with handicapped infants. Clin Pediatr.1987;26:231\u2013234","DOI":"10.1177\/000992288702600503"},{"key":"2021121003360813000_R9","doi-asserted-by":"crossref","unstructured":"Fallowfield L. Giving sad and bad news. Lancet.1993;341:476\u2013478","DOI":"10.1016\/0140-6736(93)90219-7"},{"key":"2021121003360813000_R10","doi-asserted-by":"crossref","unstructured":"Bocian ME, Kaback MM. Crisis counseling: the newborn infant with a chromosomal anomaly. Pediatr Clin North Am.1978;25:643\u2013650","DOI":"10.1016\/S0031-3955(16)33609-4"},{"key":"2021121003360813000_R11","doi-asserted-by":"crossref","unstructured":"Quine L, Pahl J. First diagnosis of severe handicap: a study of parental reactions. Dev Med Child Neurol.1987;29:232\u2013242","DOI":"10.1111\/j.1469-8749.1987.tb02141.x"},{"key":"2021121003360813000_R12","doi-asserted-by":"crossref","unstructured":"Krahn GL, Hallum A, Kime C. Are there good ways to give \u201cbad news\u201d?Pediatrics.1993;91:578\u2013582","DOI":"10.1542\/peds.91.3.578"},{"key":"2021121003360813000_R13","doi-asserted-by":"crossref","unstructured":"Myers BA. The informing interview: enabling parents to \u201chear\u201d and cope with bad news. Am J Dis Child.1938;137:572\u2013577","DOI":"10.1001\/archpedi.1983.02140320048011"},{"key":"2021121003360813000_R14","unstructured":"Lynch EC, Staloch NH. Parental perceptions of physicians\u2019 communication in the informing process. Ment Retard.1988;26:77\u201381"},{"key":"2021121003360813000_R15","unstructured":"Werner EE, Smith RS. Vulnerable but Invincible: A Longitudinal Study of Resilient Children and Youth. New York, NY: McGraw-Hill; 1982"},{"key":"2021121003360813000_R16","unstructured":"Rutter M, Rutter M. Developing Minds: Challenge and Continuity Across the Life Span. London, United Kingdom: Penguin; 1992"},{"key":"2021121003360813000_R17","doi-asserted-by":"crossref","unstructured":"Strauss RP, Sharp MC, Lorch SC, Kachalia B. Physicians and the communication of \u201cbad news\u201d: parent experiences of being informed of their child\u2019s cleft lip and\/or palate. Pediatrics.1995;96:82\u201389","DOI":"10.1542\/peds.96.1.82"},{"key":"2021121003360813000_R18","doi-asserted-by":"crossref","unstructured":"Garwick AW, Patterson J, Bennett FC, Blum RW. How families first learn about their child\u2019s chronic condition. Arch Pediatr Adolesc Med.1995;149:991\u2013997","DOI":"10.1001\/archpedi.1995.02170220057008"},{"key":"2021121003360813000_R19","doi-asserted-by":"crossref","unstructured":"Howard J. The role of the pediatrician with young exceptional children and their families. Except Child.1982;48:316\u2013321","DOI":"10.1177\/001440298204800405"},{"key":"2021121003360813000_R20","unstructured":"Spain B, Wigley G, eds. Right From the Start: A Service for Families With a Young Handicapped Child. London, United Kingdom: National Society for Mentally Handicapped Children; 1975"},{"key":"2021121003360813000_R21","unstructured":"McDonald AC, Carson KL, Palmer DJ, Slay T. Physicians\u2019 diagnostic information to parents of handicapped neonates. Ment Retard.1982;20:12\u201314"},{"key":"2021121003360813000_R22","doi-asserted-by":"crossref","unstructured":"Cunningham CC, Morgan PA, McGucken RB. Down\u2019s syndrome: is dissatisfaction with disclosure of diagnosis inevitable?Dev Med Child Neurol.1984;26:33\u201339","DOI":"10.1111\/j.1469-8749.1984.tb04403.x"},{"key":"2021121003360813000_R23","doi-asserted-by":"crossref","unstructured":"Berk NW, Marazita ML, Cooper ME. Medical genetics on the cleft palate-craniofacial team: understanding parental preference. Cleft Palate Craniofac J.1999;36:30\u201335","DOI":"10.1597\/1545-1569(1999)036<0030:MGOTCP>2.3.CO;2"},{"key":"2021121003360813000_R24","unstructured":"SAS Institute Inc. SAS Software: Version 8 of the SAS System for Windows. Cary, NC: SAS Institute Inc; 1999"},{"key":"2021121003360813000_R25","unstructured":"Ives EJ, Henick P, Levers MI. The malformed newborn: telling the parents. Birth Defects Orig Artic Ser1979;15:223\u2013231"},{"key":"2021121003360813000_R26","unstructured":"Pueschel SM, Murphy A. Assessment of counseling practices at the birth of a child with Down\u2019s syndrome. Am J Ment Defic.1977;81:325\u2013330"},{"key":"2021121003360813000_R27","unstructured":"Broder H, Trier WC. Effectiveness of genetic counseling for families with craniofacial anomalies. Cleft Palate J.1985;22:157\u2013162"}],"container-title":["Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/112\/2\/308\/1002370\/pe0803000308.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/publications.aap.org\/pediatrics\/article-pdf\/112\/2\/308\/1002370\/pe0803000308.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,4,29]],"date-time":"2023-04-29T05:38:19Z","timestamp":1682746699000},"score":1,"resource":{"primary":{"URL":"https:\/\/publications.aap.org\/pediatrics\/article\/112\/2\/308\/63310\/Parental-Evaluation-of-Informing-Interviews-for"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2003,8,1]]},"references-count":27,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2003,8,1]]},"published-print":{"date-parts":[[2003,8,1]]}},"URL":"https:\/\/doi.org\/10.1542\/peds.112.2.308","relation":{},"ISSN":["0031-4005","1098-4275"],"issn-type":[{"value":"0031-4005","type":"print"},{"value":"1098-4275","type":"electronic"}],"subject":[],"published":{"date-parts":[[2003,8,1]]}}}