Abstract:
BACKGROUND:One of the key challenges facing young adults with cleft lip and/or palate is making decisions about starting a family, because there is an increased likelihood of their own child being diagnosed with cleft lip and/or palate. Should this occur, a second key challenge is how to deal with their child's diagnosis and subsequent treatment. OBJECTIVE:To explore the views, experiences and possible support needs of this unique group of parents in order to inform the services provided by nonspecialist Health Professionals, cleft teams, and genetic counselors. DESIGN:Individual telephone interviews eliciting qualitative data. RESULTS:Qualitative thematic analysis identified five themes. Accessing accurate information and appropriate support around heritability presented a significant challenge. Parents described feelings of responsibility and distress at their child's diagnosis, as well as a number of factors that had helped or hindered their adjustment. Parents also described ways in which their own experiences had impacted their parenting style and how becoming a parent had changed the way they felt about their own cleft. CONCLUSIONS:Young adults' understanding of what it means to grow up with cleft lip and/or palate may impact their decision to start a family and their experiences of having children. Possible methods of supporting prospective parents through this potentially difficult stage will be discussed.
journal_name
Cleft Palate Craniofac Jjournal_title
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Associationauthors
Stock NM,Rumsey Ndoi
10.1597/13-314subject
Has Abstractpub_date
2015-07-01 00:00:00pages
425-36issue
4eissn
1055-6656issn
1545-1569journal_volume
52pub_type
杂志文章abstract::We previously reported that the levator veli palatini muscle (LVP) in the rat is innervated by the glossopharyngeal nerve. The LVP positioned between the mouth and nasopharynx, has important roles in respiration, swallowing, and speech. Muscle spindles, structures scattered through skeletal muscles, appear to function...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1992_029_0271_msditl_2.3.co_2
更新日期:1992-05-01 00:00:00
abstract:OBJECTIVE:Microform cleft lip (MCL), also known as congenital healed cleft lip, is a rare anomaly that is thought to be a spontaneously healed variant of the more common clefting of lip and palate. Although conventional clefting is known to be associated with congenital heart disease (CHD), MCL has not been similarly a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2000_037_0596_chdiap_2.0.co_2
更新日期:2000-11-01 00:00:00
abstract:OBJECTIVE:(1) To explore orthodontists' perceptions of nonadherence and related factors in their patients with craniofacial conditions; (2) to examine differences in adherence perceptions by provider characteristics; (3) to evaluate current adherence interventions. DESIGN:Cross-sectional. SETTING:United States-based ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665619853132
更新日期:2019-11-01 00:00:00
abstract:OBJECTIVE:(1) To determine which facial landmarks show the greatest movement during specific facial animations and (2) to determine the sensitivity of our instrument in using these landmarks to detect putatively abnormal facial movements. DESIGN:Movements of an array of skin-based landmarks on five healthy human subje...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1998_035_0132_soamft_2.3.co_2
更新日期:1998-03-01 00:00:00
abstract::Microimplant anchors, also known as temporary anchorage devices, mini- and micro-screws, have been used to enhance orthodontic anchorage for difficult tooth movements. Here, the authors describe how microimplants can be used to help treat craniofacial patients by supporting distraction osteogenesis procedures, maxilla...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/06-219.1
更新日期:2009-03-01 00:00:00
abstract:OBJECTIVE:To determine whether early routine grommet insertion in children with cleft palate has a beneficial effect on hearing and speech and language development compared with conservative management. DESIGN:Systematic review of randomized controlled trials, controlled clinical trials, case series, and prospective a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/07-219.1
更新日期:2009-01-01 00:00:00
abstract::Aggressive otologic management has been recommended for children with cleft palate because of the almost universal occurrence of otitis media with effusion (OME) in these children and the association of OME with hearing loss and possible language, cognitive, and academic delays. In this study, 28 children with cleft p...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1996_033_0127_cothho_2.3.co_2
更新日期:1996-03-01 00:00:00
abstract::Midface hypoplasia in a 5-year-old boy with Crouzon syndrome was treated using a rigid external distraction device. Seven months prior to this surgery, a bone allograft was used during frontal-orbital bar advancement. Three weeks after the Le Fort III distraction a depression fracture was diagnosed, associated with an...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/07-021.1
更新日期:2008-05-01 00:00:00
abstract:OBJECTIVE:A critical appraisal of cleft care in the United Kingdom. DESIGN:Retrospective comparative study. SETTING:All National Health Service cleft centers in the United Kingdom. PATIENTS/PARTICIPANTS:Children born with unilateral complete clefts of the lip and palate between April 1, 1982, and March 31, 1984 (12-...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,多中心研究
doi:10.1597/1545-1569_2001_038_0038_clapci_2.0.co_2
更新日期:2001-01-01 00:00:00
abstract:OBJECTIVE:This objective of this study was to determine the effect of presurgical nasoalveolar molding on long-term nasal shape in complete unilateral clefts. DESIGN:The study was retrospective, and the subjects were chosen at random. Nasal casts of the subjects were scanned in three dimensions. Each nose was best fit...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1999_036_0391_lteonm_2.3.co_2
更新日期:1999-09-01 00:00:00
abstract:OBJECTIVE:Unfortunately, not all patients receive the benefits of a well-trained, experienced, multidisciplinary cleft team, and a significant number of patients reach adulthood with severe neglected cleft related problems. The vast majority of this group have made their way through several surgical procedures, usually...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/03-039.1
更新日期:2004-09-01 00:00:00
abstract::Mandibular distraction osteogenesis is an increasingly accepted treatment option for severe upper airway obstruction in grade 3 Robin sequence. Complications are rarely reported but can include fracture, pin dislodgement, tooth bud damage, and temporomandibular joint ankylosis. Operative correction of these complicati...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-008
更新日期:2015-05-01 00:00:00
abstract:OBJECTIVE:To understand the experience of families with children undergoing cleft surgery following adoption from a country outside the United States. To identify factors, including the timing of surgery, that influence family function throughout the surgical experience. DESIGN:Semistructured qualitative interviews we...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-260
更新日期:2016-07-01 00:00:00
abstract:OBJECTIVE:To determine the treatment outcome based on dentoalveolar relationships among Malay children born with nonsyndromic complete unilateral cleft lip and palate (UCLP). DESIGN:Retrospective cohort study. SETTING AND SAMPLE POPULATION:The Department of Orthodontics at the School of Dental Science and the Reconst...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/07-210.1
更新日期:2009-05-01 00:00:00
abstract::Median cleft lip is a midline vertical cleft through the upper lip in the absence of a prolabial remnant. This may occur as a sporadic event or be part of an inherited sequence of anomalies. A failure of formation or fusion of the medial nasal prominences derived from the frontonasal prominence is ultimately responsib...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1993_030_0094_mcotli_2.3.co_2
更新日期:1993-01-01 00:00:00
abstract:OBJECTIVE:To achieve sufficient velopharyngeal function and maxillary growth for patients with unilateral cleft lip and palate (UCLP), the authors have designed a new treatment protocol for palate closure involving early two-stage palatoplasty with modified Furlow veloplasty. Details of the surgical protocol and the ou...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-067.1
更新日期:2010-01-01 00:00:00
abstract::Pressure-flow data are often used to provide information about the adequacy of velopharyngeal valving for speech. However, there is limited information available concerning simultaneous pressure-flow measurements for oral and nasal sound segments produced by normal speakers. This study provides normative pressure, flo...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1991_028_0398_pfmfso_2.3.co_2
更新日期:1991-10-01 00:00:00
abstract::This study was designed to investigate maxillofacial morphology in adolescents and adults with unrepaired cleft palate, with or without cleft lip. Twenty-two Chinese patients with unilateral cleft lip and palate (the UCLP group), and 21 Chinese with cleft palate (the CP group) were cephalometrically evaluated and clas...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1992_029_0419_caommi_2.3.co_2
更新日期:1992-09-01 00:00:00
abstract:OBJECTIVE:To evaluate speech in adults treated for unilateral cleft lip and palate with one-stage or two-stage palate closure and compare the speech of the patients with that of a noncleft control group. DESIGN:Cross-sectional study with long-term follow-up. PARTICIPANTS/SETTING:All unilateral cleft lip and palate pa...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/15-037
更新日期:2017-11-01 00:00:00
abstract:OBJECTIVE:Although Asians have the highest birth prevalence of oral-facial clefts, the majority of gene mapping studies of cleft lip with or without cleft palate (CL/P) have been in European or American Caucasians. Therefore, the objective of this study of Chinese families was to evaluate linkage and association betwee...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2002_039_0149_nclwow_2.0.co_2
更新日期:2002-03-01 00:00:00
abstract:OBJECTIVE:The purpose of this study was to assess the effect of ventilation tube (VT) placement on long-term hearing outcomes in children with cleft palate. STUDY DESIGN:Case series with chart review. SETTING:Genetic and dysmorphology database at Rady Children's Hospital-San Diego (RCHSD). PATIENTS:Children with cle...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/15-349
更新日期:2017-11-01 00:00:00
abstract:OBJECTIVE:To evaluate and compare the oral hygiene and periodontal status in children with unilateral and bilateral cleft lip and palate treated in Łódź, Poland, and Erlangen, Germany. DESIGN:Oral health was assessed by the presence of dental plaque, pocket depth, clinical attachment levels, and pathologic teeth mobil...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/05-137
更新日期:2007-01-01 00:00:00
abstract::The influence of the periosteum on the regeneration of palatal bone was investigated in this study. Eighty, 8-week-old, purebred beagle dogs were assigned randomly to four groups: (1) unoperated dogs as a group control; dogs in which the mid-third of the palate was surgically removed and (2) left unrepaired (unrepaire...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1995_032_0228_piropd_2.3.co_2
更新日期:1995-05-01 00:00:00
abstract:OBJECTIVE:The aim of this study was to report the case of a Japanese subject with ring chromosome 18 syndrome. A cephalometric analysis was performed, and the treatment procedure is described. DESIGN:Lateral and posteroanterior cephalograms were compared with Japanese norms. Dental anomalies were evaluated by a model ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-262_1
更新日期:2010-03-01 00:00:00
abstract:OBJECTIVE:The aim of this study was to examine the relationship between dental maturation and somatic development and to discover their possible deviations in children with shunt-treated hydrocephalus. DESIGN:Radiographs (orthopantomogram and hand-wrist radiograph) from children with shunt-treated hydrocephalus were a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/03-018.1
更新日期:2004-11-01 00:00:00
abstract:OBJECTIVE:To present orthodontic treatment combined with dual segmental distraction osteogenesis in a patient with Apert syndrome. PATIENT:A 15-year-old boy exhibited severe midfacial hypoplasia with retruded and hypoplastic maxilla and anterior open bite. The patient was treated with a rigid external distraction II s...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/04-151.1
更新日期:2006-07-01 00:00:00
abstract::The influence of an open residual cleft in the hard palate on speech was studied in nine children with cleft lip and palate at about 7 years of age. The subjects were treated by early repair of the velum (before 12 months of age), whereas the repair of the cleft in the hard palate was postponed until about 8 years of ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1996_033_0324_savfic_2.3.co_2
更新日期:1996-07-01 00:00:00
abstract::A review of the studies of the caries prevalence and periodontal health of patients with cleft lip and palate (CLP) revealed that only five investigations of caries prevalence in CLP patients included children. One reported that CLP children did not have a higher caries prevalence in the permanent dentition, whereas m...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/1545-1569_1998_035_0248_tohocw_2.3.co_2
更新日期:1998-05-01 00:00:00
abstract:OBJECTIVE:To record maxillary and mandibular displacement with articular growth and in response to bimaxillary surgical repositioning in patients with hemifacial microsomia (HFM) and to observe ipsilateral corpus/ramus growth in severely affected children. DESIGN:Prospective roentgen stereometric analysis (mean age 7 ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/02-123.1
更新日期:2004-05-01 00:00:00
abstract:OBJECTIVE:This study examined social anxiety and measures of psychosocial adjustment in Chinese adults with oral-facial clefts, their unaffected siblings, and age-matched controls. DESIGN:This cross-sectional study utilized a matched case-control study design. PARTICIPANTS:Eighty-five adult cleft lip and cleft palate...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2001_038_0126_saicaw_2.0.co_2
更新日期:2001-03-01 00:00:00