{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T10:38:35Z","timestamp":1788431915981,"version":"build-2803163510"},"reference-count":74,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2013,5,1]],"date-time":"2013-05-01T00:00:00Z","timestamp":1367366400000},"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"],"published-print":{"date-parts":[[2013,5]]},"abstract":"<jats:p>The study aimed to explore in depth the perspectives of parents about their child's cleft services. Purposive and theoretical sampling produced a diverse sample of mothers and fathers with children aged 20 weeks to 21 years. Parents were recruited from a specialist cleft center in the U.K. Qualitative, in-depth, face-to-face interviews were carried out with 35 parents. Interviews were audio-recorded, transcribed, and analyzed using grounded theory to identify salient data categories. Findings revealed that parents' positive views about services rested on their perceptions of cleft-care practitioners as competent and trustworthy, possessing highly developed communication skills and the ability to provide continuity of care to families. At the same time, some mothers and fathers identified unmet support needs relating to information delivery and content as well as the coordination of services across the treatment course. More individualized information about treatment was desired; in particular, some parents had incomplete information about their child's surgical procedures, associated risks, and postsurgical recovery. Parents wanted better coordination of services with regard to communication about surgical cancellations, a child's transition to adult services, and having a key professional to link with throughout their child's treatment course. Routine assessments to gauge parents' needs could be built into cleft-care pathways so that more individualized information and support might be delivered to families in more consistent ways over long-term treatment.<\/jats:p>","DOI":"10.1597\/11-293","type":"journal-article","created":{"date-parts":[[2012,7,31]],"date-time":"2012-07-31T14:36:19Z","timestamp":1343745379000},"page":"275-285","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":42,"title":["Parents' Perspectives of Cleft Lip and\/or Palate Services: A Qualitative Interview"],"prefix":"10.1177","volume":"50","author":[{"given":"Pauline A.","family":"Nelson","sequence":"first","affiliation":[{"name":"School of Community-Based Medicine, University of Manchester, Manchester, United Kingdom."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan A.","family":"Kirk","sequence":"additional","affiliation":[{"name":"School of Nursing, Midwifery, and Social Work, University of Manchester, Manchester, United Kingdom."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2013,5,1]]},"reference":[{"key":"bibr1-11-293","unstructured":"ArkseyH. Collecting Data Through Joint Interviews. Social Research Update. Guildford: University of Surrey; 1996. Available at http\/\/sru.soc.surrey.ac.uk\/SRU15.html Accessed July 12th, 2012."},{"key":"bibr2-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2007.00740.x"},{"key":"bibr3-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1440-1754.2006.00938.x"},{"key":"bibr4-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/08-093.1"},{"key":"bibr5-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1992_029_0262_hopwcp_2.3.co_2"},{"key":"bibr6-11-293","doi-asserted-by":"publisher","DOI":"10.1542\/peds.112.2.308"},{"key":"bibr7-11-293","author":"Calnan M.","year":"2005","journal-title":"Trust relations in the \u201cnew\u201d NHS: theoretical and methodological challenges."},{"key":"bibr8-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1997_034_0443_cocuoi_2.3.co_2"},{"key":"bibr9-11-293","volume-title":"The Views and Experiences of Patients Living With Disfiguring Conditions and Health Professionals Involved in Their Care. Report of a Qualitative Study.","author":"Cartwright J.","year":"2006"},{"key":"bibr10-11-293","volume-title":"Constructing Grounded Theory. A Practical Guide Through Qualitative Analysis.","author":"Charmaz C.","year":"2006"},{"key":"bibr11-11-293","volume-title":"Regionalisation of Cleft Lip and Palate Services: Has It Worked? A Report on Users' Perspectives of Cleft Care.","author":"Cleft Lip and Palate Association.","year":"2007"},{"key":"bibr12-11-293","volume-title":"Review of Current Treatment for Young Children With Cleft Lip and Palate.","author":"Cleft Lip and Palate Association.","year":"1996"},{"key":"bibr13-11-293","volume-title":"Cleft Lip and\/or Palate. Report of a CSAG Committee.","author":"Clinical Standards Advisory Group.","year":"1998"},{"key":"bibr14-11-293","volume-title":"Qualitative Inquiry and Research Design. Choosing Among Five Approaches.","author":"Creswell J.","year":"2007"},{"key":"bibr15-11-293","doi-asserted-by":"publisher","DOI":"10.1054\/bjps.2000.3330"},{"key":"bibr16-11-293","volume-title":"Health Service Circular HSC 1998\/238 Cleft Lip and Palate Services. Commissioning Specialised Services.","author":"Department of Health.","year":"1998"},{"key":"bibr17-11-293","volume-title":"Healthy Lives, Brighter Futures\u2014the Strategy for Children and Young People's Health.","author":"Department of Health.","year":"2009"},{"key":"bibr18-11-293","volume-title":"Research Governance Framework for Health and Social Care.","author":"Department of Health.","year":"2005"},{"key":"bibr19-11-293","volume-title":"National Service Framework for Children and Young People: Disabled Children and Young People and Those With Complex Health Needs.","author":"Department of Health, Department of Education and Skills.","year":"2004"},{"key":"bibr20-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_2001_038_0236_uoapca_2.0.co_2"},{"key":"bibr21-11-293","volume-title":"Knowing or Not Knowing Before Birth: Parents Experiences of Having a Baby With a Cleft Lip, With or Without Cleft Palate.","author":"Farrimond J.","year":"2004"},{"key":"bibr22-11-293","volume-title":"An Introduction to Qualitative Research.","author":"Flick U.","year":"2006"},{"key":"bibr23-11-293","first-page":"575","volume":"51","author":"Fugelli P.","year":"2001","journal-title":"Br J Gen Pract."},{"key":"bibr24-11-293","volume-title":"The Discovery of Grounded Theory.","author":"Glaser B.G.","year":"1967"},{"key":"bibr25-11-293","volume-title":"Theoretical Sensitivity: Advances in the Methodology of Grounded Theory.","author":"Glaser B.G.","year":"1978"},{"key":"bibr26-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2006.00666.x"},{"key":"bibr27-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00381.x"},{"key":"bibr28-11-293","doi-asserted-by":"publisher","DOI":"10.1054\/bjps.2001.3551"},{"key":"bibr29-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2004.03075.x"},{"key":"bibr30-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2008.00862.x"},{"key":"bibr31-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00393.x"},{"key":"bibr32-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/05-117"},{"key":"bibr33-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/08-259_1"},{"key":"bibr34-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijom.2007.06.009"},{"key":"bibr35-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1523-536X.2006.00148.x"},{"key":"bibr36-11-293","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2214.2003.00351.x"},{"key":"bibr37-11-293","doi-asserted-by":"publisher","DOI":"10.1213\/ane.0b013e318162ce2f"},{"key":"bibr38-11-293","first-page":"38","volume":"91","author":"Martin V.","year":"1995","journal-title":"Nurs Times."},{"key":"bibr39-11-293","doi-asserted-by":"publisher","DOI":"10.12968\/bjom.2005.13.2.17468"},{"key":"bibr40-11-293","volume-title":"Qualitative Researching.","author":"Mason J.","year":"2002"},{"key":"bibr41-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(00)00014-9"},{"key":"bibr42-11-293","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2524.2002.00344.x"},{"key":"bibr43-11-293","doi-asserted-by":"publisher","DOI":"10.1002\/chi.658"},{"key":"bibr44-11-293","unstructured":"MurphyE. DingwallR. GreatbatchD. ParkerS. WatsonP. Qualitative research in health technology assessment: a review of the literature.\n                      Health Tech Assess.\n                      Available at http:\/\/www.hta.ac.uk Accessed July 12th, 2012."},{"key":"bibr45-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpedsurg.2007.12.055"},{"key":"bibr46-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01244.x"},{"key":"bibr47-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/08-121.1"},{"key":"bibr48-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2011.11.024"},{"key":"bibr49-11-293","doi-asserted-by":"publisher","DOI":"10.1177\/1049732311421178"},{"key":"bibr50-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1992_029_0092_aqsoaa_2.3.co_2"},{"key":"bibr51-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/05-151"},{"key":"bibr52-11-293","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-008-9152-5"},{"key":"bibr53-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1997_034_0526_nfoibw_2.3.co_2"},{"key":"bibr54-11-293","doi-asserted-by":"publisher","DOI":"10.12968\/bjom.2008.16.12.31819"},{"key":"bibr55-11-293","doi-asserted-by":"publisher","DOI":"10.1177\/104973239800800305"},{"key":"bibr56-11-293","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2214.1999.00132.x"},{"key":"bibr57-11-293","volume-title":"Using NVivo in Qualitative Research.","author":"Richards L.","year":"1999"},{"key":"bibr58-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/S0738-3991(99)00086-5"},{"key":"bibr59-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/02-119.4.1"},{"key":"bibr60-11-293","volume-title":"The Eurocleft Project 1996-2000: Standards of Care for Cleft Lip and Palate in Europe.","author":"Shaw W.C.","year":"2001"},{"key":"bibr61-11-293","volume-title":"Patient-Centered Medicine: Transforming the Clinical Method.","author":"Stewart M.","year":"2003"},{"key":"bibr62-11-293","first-page":"1423","volume":"152","author":"Stewart M.A.","year":"1995","journal-title":"Can Med Assoc J."},{"key":"bibr63-11-293","doi-asserted-by":"publisher","DOI":"10.1097\/SCS.0b013e3181ec6872"},{"key":"bibr64-11-293","volume-title":"Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory.","author":"Strauss A.L.","year":"1998"},{"key":"bibr65-11-293","first-page":"335","volume":"25","author":"Strauss R.P.","year":"1988","journal-title":"Cleft Palate J."},{"key":"bibr66-11-293","doi-asserted-by":"crossref","first-page":"82","DOI":"10.1542\/peds.96.1.82","volume":"96","author":"Strauss R.P.","year":"1995","journal-title":"Pediatrics."},{"key":"bibr67-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_1997_034_0226_swfaas_2.3.co_2"},{"key":"bibr68-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2008.00844.x"},{"key":"bibr69-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/0007-1226(88)90169-5"},{"key":"bibr70-11-293","doi-asserted-by":"publisher","DOI":"10.1016\/S0007-1226(97)91275-3"},{"key":"bibr71-11-293","doi-asserted-by":"publisher","DOI":"10.1038\/jp.2008.139"},{"key":"bibr72-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_2001_038_0024_clapci_2.0.co_2"},{"key":"bibr73-11-293","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2006.00599.x"},{"key":"bibr74-11-293","doi-asserted-by":"publisher","DOI":"10.1597\/1545-1569_2001_038_0055_widpon_2.0.co_2"}],"container-title":["The Cleft Palate Craniofacial Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1597\/11-293","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1597\/11-293","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1597\/11-293","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T16:17:28Z","timestamp":1777393048000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1597\/11-293"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,5]]},"references-count":74,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2013,5]]}},"alternative-id":["10.1597\/11-293"],"URL":"https:\/\/doi.org\/10.1597\/11-293","relation":{},"ISSN":["1055-6656","1545-1569"],"issn-type":[{"value":"1055-6656","type":"print"},{"value":"1545-1569","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,5]]}}}