"I Just Want People to Think I'm Normal": An Interview Study of Young Swedish Women With Covert Stuttering.

PURPOSE: Research indicates that there is a tendency for females who stutter, more often than males, to use coping strategies that involve covering their stutter, for example, by avoiding situations that require verbal participation. The aim of the study is to increase knowledge about how covert stuttering develops and its impact on self-image and quality of life for women who stutter. METHOD: Eleven young women who stutter covertly were interviewed, and data were subjected to qualitative content analysis. Background information was obtained from the self-report instruments measuring the impact of stuttering on different aspects of life (Overall Assessment of the Speaker's Experiences of Stuttering) and degree of perceived social anxiety (Liebowitz Social Anxiety Scale, Self-Report). RESULTS: Three main themes were identified: (a) managing stuttering, (b) personal aspects, and (c) stuttering as a phenomenon. Shame and a desire to fit in emerged as distinct motives for covering stuttering. The women described that stuttering controlled both life choices and everyday life. Development of self-image had been strongly negatively affected, resulting in social anxiety. The women expressed a particular vulnerability of being a woman who stutters, due to societal norms of female behavior and a lack of female role models who stutter. CONCLUSIONS: The choice of coping strategy was motivated by a desire to "be normal." As a result, stuttering had come to dominate life and affect self-image and life choices. The study highlights the importance for clinicians to be alert to and aware of the fact that the experiences of women who stutter can lead them to develop coping strategies that have far-reaching negative consequences.

Timing of Primary Surgery for Cleft Palate.

BACKGROUND: Among infants with isolated cleft palate, whether primary surgery at 6 months of age is more beneficial than surgery at 12 months of age with respect to speech outcomes, hearing outcomes, dentofacial development, and safety is unknown. METHODS: We randomly assigned infants with nonsyndromic isolated cleft palate, in a 1:1 ratio, to undergo standardized primary surgery at 6 months of age (6-month group) or at 12 months of age (12-month group) for closure of the cleft. Standardized assessments of quality-checked video and audio recordings at 1, 3, and 5 years of age were performed independently by speech and language therapists who were unaware of the trial-group assignments. The primary outcome was velopharyngeal insufficiency at 5 years of age, defined as a velopharyngeal composite summary score of at least 4 (scores range from 0 to 6, with higher scores indicating greater severity). Secondary outcomes included speech development, postoperative complications, hearing sensitivity, dentofacial development, and growth. RESULTS: We randomly assigned 558 infants at 23 centers across Europe and South America to undergo surgery at 6 months of age (281 infants) or at 12 months of age (277 infants). Speech recordings from 235 infants (83.6%) in the 6-month group and 226 (81.6%) in the 12-month group were analyzable. Insufficient velopharyngeal function at 5 years of age was observed in 21 of 235 infants (8.9%) in the 6-month group as compared with 34 of 226 (15.0%) in the 12-month group (risk ratio, 0.59; 95% confidence interval, 0.36 to 0.99; P = 0.04). Postoperative complications were infrequent and similar in the 6-month and 12-month groups. Four serious adverse events were reported (three in the 6-month group and one in the 12-month group) and had resolved at follow-up. CONCLUSIONS: Medically fit infants who underwent primary surgery for isolated cleft palate in adequately resourced settings at 6 months of age were less likely to have velopharyngeal insufficiency at the age of 5 years than those who had surgery at 12 months of age. (Funded by the National Institute of Dental and Craniofacial Research; TOPS ClinicalTrials.gov number, NCT00993551.).

Speech Outcome and Self-Reported Communicative Ability in Young Adults Born With Unilateral Cleft Lip and Palate: Comparing Long-Term Results After 2 Different Surgical Methods for Palatal Repair.

OBJECTIVE: To compare speech outcome and self-reported speech and communicative ability (SOK) in young adults treated with one-stage (OS) or two-stage (TS) palatal repair. Furthermore, to compare with normative data on individuals without cleft lip and palate and to study the relationship between patients' and experts' judgments. DESIGN: A cross-sectional group comparison study with long-term follow-up. Participants: Patients born with unilateral cleft lip and palate treated at 2 cleft centers; 17 with OS at 14 months and 25 with TS, soft palate repair at 7 months and hard palate repair at 6.2 years. Pharyngeal flap surgery was performed in 53% (OS) and 24% (TS) of patients. MAIN OUTCOME MEASURE(S): Speech characteristics were blindly assessed by speech and language pathologist from audio recordings, SOK at 19 years of age. RESULTS: No group differences were found. Although the occurrence of nasality symptoms was low in both groups, only 60% (OS)/65% (TS) were assessed with competent velopharyngeal function (VPC). Articulation proficiency (percentage of consonants correct [PCC]) was 91%/97%, the /s/-sound specifically 87%/91%. Good intelligibility was found in 91%/87%. Patient opinion was in agreement with norms and significantly associated with intelligibility (rs = 0.436, P < .01), PCC (rs = -0.534, P < .01), and correct /s/ (rs = -0.354, P < .05). CONCLUSIONS: No differences in speech outcome were related to operation method. The low prevalence of VPC was not clearly reflected in nasality symptoms. Patient opinion was related to articulation and intelligibility. A higher burden of care in terms of pharyngeal flap surgery was seen after the OS technique.

Scandcleft Project Trial 2-Comparison of Speech Outcome in 1- and 2-Stage Palatal Closure in 5-Year-Olds With UCLP.

OBJECTIVE: To investigate in-depth speech results in the Scandcleft Trial 2 with comparisons between surgical protocols and centers and with benchmarks from peers without cleft palate. DESIGN: A prospective randomized clinical trial. SETTING: Two Swedish and one Finnish Cleft Palate center. PARTICIPANTS: One hundred twelve participants were 5-years-old born with unilateral cleft lip and palate randomized to either lip repair and soft palate closure at 4 months and hard palate closure at 12 months or lip repair at 3 to 4 months (Arm A), or a closure of both the soft and hard palate at 12 months (Arm C). MAIN OUTCOME MEASURES: A composite measure dichotomized into velopharyngeal competency (VPC) or velopharyngeal incompetency (VPI), overall assessment of velopharyngeal function (VPC-Rate), percentage of consonants correct (PCC score), and consonant errors. In addition, number of speech therapy visits, average hearing thresholds, and secondary surgeries were documented to assess burden of treatment. RESULTS: Across the trial, 53.5% demonstrated VPC and 46.5% VPI with no significant differences between arms or centers. In total, 27% reached age-appropriate PCC scores with no statistically significant difference between the arms. The Finnish center had significantly higher PCC scores, the Swedish centers had higher percentages of oral consonant errors. Number of speech therapy visits was significantly higher in the Finnish center. CONCLUSION: At age 5, poor speech outcomes with some differences between participating centers were seen but could not be attributed to surgical protocol. As one center had very few participants, the results from that center should be interpreted with caution.

"She Sounds Like a Small Child or Perhaps She has Problems"-Peers' Descriptions of Speech in 7-Year-Olds Born With Cleft Palate.

OBJECTIVE: The aim of this study was to explore how 7-year-olds describe speech in children born with cleft palate in their own words and to investigate whether they perceive signs of velopharyngeal incompetence (VPI) and articulation errors, and if so, which terminology they use. METHODS/PARTICIPANTS: Twenty 7-year-olds participated in 6 focus group interviews where they listened to 8 speech samples with different types of cleft speech characteristics and described what they heard. The same speech samples had been assessed by speech-language pathologists and comprised normal speech, different degrees of VPI, oral articulation disorders, and glottal articulation. The interviews were analyzed with qualitative content analysis. RESULTS: The analysis resulted in 4 interlinked categories: descriptions of speech, thoughts on personal traits, consequences for communication, and emotional reactions and associations. Each category contains 4 to 5 subcategories with the children's descriptions and reflections. Glottal articulation and severe signs of VPI caused the most negative emotional reactions and were described as sounding scary and incomprehensible and the children speculated on the risk of social rejection of the speakers. Retracted oral articulation was also noted and described but with a vocabulary similar to the professionals. Minor signs of VPI were not noted. CONCLUSIONS: Seven-year-olds are direct and straightforward in their reactions to cleft palate speech characteristics. More pronounced signs of VPI and articulatory difficulties, also minor ones, are noted. Clinically, articulatory impairments may be more important to treat than minor signs of VPI.

Speech outcome in young children born with unilateral cleft lip and palate treated with one- or two-stage palatal repair and the impact of early intervention.

OBJECTIVES: The aim of this study was to describe speech at 1, 1;6 and 3 years of age in children born with unilateral cleft lip and palate (UCLP) and relate the findings to operation method and amount of early intervention received. METHODS: A prospective trial of children born with UCLP operated with a one-stage (OS) palatal repair at 12 months or a two-stage repair (TS) with soft palate closure at 3-4 months and hard palate closure at 12 months was undertaken (Scandcleft). At 1 and 1;6 years the place and manner of articulation and number of different consonants produced in babbling were reported in 33 children. At three years of age percentage consonants correct adjusted for age (PCC-A) and cleft speech errors were assessed in 26 of the 33 children. Early intervention was not provided as part of the trial but according to the clinical routine and was extracted from patient records. RESULTS: At age 3, the mean PCC-A was 68% and 46% of the children produced articulation errors with no significant difference between the two groups. At one year there was a significantly higher occurrence of oral stops and anterior place consonants in the TS group. There were significant correlations between the consonant production between one and three years of age, but not with amount of early intervention received. CONCLUSIONS: The TS method was beneficial for consonant production at age 1, but not shown at 1;6 or 3 years. Behaviourally based early intervention still needs to be evaluated.

Speech outcomes at 5 and 10 years of age after one-stage palatal repair with muscle reconstruction in children born with isolated cleft palate.

BACKGROUND: The aim of this study was to investigate speech outcomes in children with clefts in the hard and/or soft palate only (CPH/CPS), in order to determine the prevalence of cleft speech characteristics, the change between 5 and 10 years of age, and the difference in occurrence between CPH and CPS. METHODS: A consecutive series of 88 children born with CPH or CPS were included in a retrospective cohort. All participants were treated with one-stage palatal repair using a minimal incision technique with muscle reconstruction (mean age 13 months). Twelve children (14%) received a velopharyngeal flap. Cleft speech variables were rated at 5 and 10 years of age independently by three experienced external speech-language pathologists. Inter- and intra-rater agreements were determined, and the prevalence of cleft speech characteristics was calculated. RESULTS: Moderate-to-severe hypernasality and weak pressure consonants were present in 5%-10% of the children at 5 years, with marginal but statistically significant improvement at 10 years of age. Frequently or always occurring audible nasal air leakage was detected in 20% of children at age 5, and increased to ∼35% of the children at 10 years. Ten per cent had compensatory articulation at age 5, and 25% demonstrated s-distortions, whereas few had these problems at age 10. CONCLUSIONS: The results demonstrate low occurrence of compensatory articulation problems in this cohort, even by 5 years of age. The high presence of symptoms of velopharyngeal insufficiency at 10 years of age suggests a need for additional secondary velopharyngeal surgery.

Validity of auditory perceptual assessment of velopharyngeal function and dysfunction - the VPC-Sum and the VPC-Rate.

Overall weighted or composite variables for perceptual auditory estimation of velopharyngeal closure or competence have been used in several studies for evaluation of velopharyngeal function during speech. The aim of the present study was to investigate the validity of a composite score (VPC-Sum) and of auditory perceptual ratings of velopharyngeal competence (VPC-Rate). Available VPC-Sum scores and judgments of associated variables (hypernasality, audible nasal air leakage, weak pressure consonants, and non-oral articulation) from 391 5-year olds with repaired cleft palate (the Scandcleft project) were used to investigate content validity, and 339 of these were compared with an overall judgment of velopharyngeal competence (VPC-Rate) on the same patients by the same listeners. Significant positive correlations were found between the VPC-Sum and each of the associated variables (Cronbachs alpha 0.55-0.87, P < 0.001), and a moderately significant positive correlation between VPC-Sum and VPC-Rate (Rho 0.698, P < 0.01). The latter classified cases well when VPC-Sum was dichotomized with 67% predicted velopharyngeal competence and 90% velopharyngeal incompetence. The validity of the VPC-Sum was good and the VPC-Rate a good predictor, suggesting possible use of both measures depending on the objective.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 4. Speech outcomes in 5-year-olds - velopharyngeal competency and hypernasality.

BACKGROUND AND AIM: Adequate velopharyngeal function and speech are main goals in the treatment of cleft palate. The objective was to investigate if there were differences in velopharyngeal competency (VPC) and hypernasality at age 5 years in children with unilateral cleft lip and palate (UCLP) operated on with different surgical methods for primary palatal repair. A secondary aim was to estimate burden of care in terms of received additional secondary surgeries and speech therapy. DESIGN: Three parallel group, randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: Three different surgical protocols for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. Speech audio and video recordings of 391 children (136 girls, 255 boys) were available and perceptually analysed. The main outcome measures were VPC and hypernasality from blinded assessments. RESULTS: There were no statistically significant differences between the prevalences in the arms in any of the trials. VPC: Trial 1, A: 58%, B: 61%; Trial 2, A: 57%, C: 54%; Trial 3, A: 35%, D: 51%. No hypernasality: Trial 1, A: 54%, B: 44%; Trial 2, A: 47%, C: 51%; Trial 3, A: 34%, D: 49%. CONCLUSIONS: No differences were found regarding VPC and hypernasality at age 5 years after different methods for primary palatal repair. The burden of care in terms of secondary pharyngeal surgeries, number of fistulae, and speech therapy visits differed. TRIAL REGISTRATION: ISRCTN29932826.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis.

BACKGROUND AND AIM: Parents of children with a cleft lip and palate may be emotionally affected by the child's diagnosis. Their experiences and perceptions are important when evaluating the complexity of satisfactory treatment outcomes. The objective was to examine parents' social and emotional experiences related to their child's cleft diagnosis, and their perceptions of the child's adjustment to living with a visible difference. DESIGN: International multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: A cohort of 448 children born with a non-syndromic UCLP were included. A total of 356 parents completed the Scandcleft Parent Questionnaire. RESULTS: The majority of parents experienced practical and emotional support from family, friends, and health professionals. Nevertheless, parents had to cope with other people's reactions to the cleft, experiences that were described as ranging from hurtful to neutral and/or positive. According to parents, 39% of the children had experienced cleft-related comments and/or teasing. More than half of the parents reported specific worries related to their child's future. CONCLUSION: While the majority of the parents experienced positive support and coped well with the child's diagnosis, some parents were at risk for psychological and emotional challenges that should be identified by the cleft team. To optimise outcomes and the child's adjustment, these parents should be offered psychological support when necessary. TRIAL REGISTRATION: ISRCTN29932826.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 5. Speech outcomes in 5-year-olds - consonant proficiency and errors.

BACKGROUND AND AIM: Normal articulation before school start is a main objective in cleft palate treatment. The aim was to investigate if differences exist in consonant proficiency at age 5 years between children with unilateral cleft lip and palate (UCLP) randomised to different surgical protocols for primary palatal repair. A secondary aim was to estimate burden of care in terms of received additional secondary surgeries and speech therapy. DESIGN: Three parallel group, randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Norway, Sweden, and the UK. METHODS: Three different surgical protocols for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with non-syndromic UCLP. Speech audio- and video-recordings of 391 children (136 girls and 255 boys) were available and transcribed phonetically. The main outcome measure was Percent Consonants Correct (PCC) from blinded assessments. RESULTS: In Trial 1, arm A showed statistically significant higher PCC scores (82%) than arm B (78%) (p = .045). No significant differences were found between prevalences in Trial 2, A: 79%, C: 82%; or Trial 3, A: 80%, D: 85%. Across all trials, girls achieved better PCC scores, excluding s-errors, than boys (91.0% and 87.5%, respectively) (p = .01). CONCLUSIONS: PCC scores were higher in arm A than B in Trial 1, whereas no differences were found between arms in Trials 2 or 3. The burden of care in terms of secondary pharyngeal surgeries, number of fistulae, and speech therapy visits differed. TRIAL REGISTRATION: ISRCTN29932826.

Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 10. Parental perceptions of appearance and treatment outcomes in their 5-year-old child.

BACKGROUND AND AIM: Few studies have explored children's emotional and behavioural reactions to cleft surgery and treatment-related stress. The objective was to investigate parents' evaluations of appearance and treatment outcomes in their 5-year-old child with unilateral cleft lip and palate (UCLP), and their perceptions of how their child was coping with treatment, comparing this information with recorded postsurgical complications. DESIGN: Three parallel group randomised clinical trials were undertaken as an international multicentre study by 10 cleft teams in five countries: Denmark, Finland, Sweden, Norway, and the UK. METHODS: Three different surgical procedures for primary palatal repair were tested against a common procedure in the total cohort of 448 children born with a non-syndromic UCLP. A total of 356 parents completed the Scandcleft Parent Questionnaire, and 346 parents completed the Cleft Evaluation Profile. RESULTS: The results indicated that the majority of parents were satisfied with cleft-related features of their child's appearance. Further, most children coped well with treatment according to their parents. Nevertheless, 17.5% of the children showed minor or short-term reactions after treatment experiences, and 2% had major or lasting difficulties. There were no significant relationships between parent perceptions of treatment-related problems and the occurrence of post-surgical medical complications. CONCLUSIONS: Most parents reported satisfaction with their child's appearance. However, treatment-related problems were described in some children, urging cleft centres to be aware of potential negative emotional and behavioural reactions to treatment in some young children, with a view to preventing the development of more severe treatment-related anxiety. TRIAL REGISTRATION: ISRCTN29932826.

Speech in 10-Year-Olds Born With Cleft Lip and Palate: What Do Peers Say?

OBJECTIVE: The aim of this study was to explore how 10-year-olds describe speech and communicative participation in children born with unilateral cleft lip and palate in their own words, whether they perceive signs of velopharyngeal insufficiency (VPI) and articulation errors of different degrees, and if so, which terminology they use. Methods/Participants: Nineteen 10-year-olds participated in three focus group interviews where they listened to 10 to 12 speech samples with different types of cleft speech characteristics assessed by speech and language pathologists (SLPs) and described what they heard. The interviews were transcribed and analyzed with qualitative content analysis. RESULTS: The analysis resulted in three interlinked categories encompassing different aspects of speech, personality, and social implications: descriptions of speech, thoughts on causes and consequences, and emotional reactions and associations. Each category contains four subcategories exemplified with quotes from the children's statements. More pronounced signs of VPI were perceived but referred to in terms relevant to 10-year-olds. Articulatory difficulties, even minor ones, were noted. Peers reflected on the risk to teasing and bullying and on how children with impaired speech might experience their situation. The SLPs and peers did not agree on minor signs of VPI, but they were unanimous in their analysis of clinically normal and more severely impaired speech. CONCLUSIONS: Articulatory impairments may be more important to treat than minor signs of VPI based on what peers say.

Speech outcomes at age 5 and 10 years in unilateral cleft lip and palate after one-stage palatal repair with minimal incision technique - a longitudinal perspective.

OBJECTIVES: To investigate speech outcomes in 5- and 10-year-old children with unilateral cleft lip and palate (UCLP) treated according to minimal incision technique (MIT) - a one-stage palatal method. METHODS: A retrospective, longitudinal cohort study of a consecutive series of 69 patients born with UCLP, treated with MIT (mean age 13 months) was included. Forty-two children (43%) received a velopharyngeal flap; 12 before 5 years and another 18 before 10 years of age. Cleft speech variables were rated from standardized audio recordings at 5 and 10 years of age, independently by three experienced, external speech-language pathologists, blinded to the material. The prevalences of cleft speech characteristics were determined, and inter- and intra-rater agreement calculated. RESULTS: More than mild hypernasality, weak pressure consonants and perceived incompetent velopharyngeal function were present in 19-22% of the children at 5 years, but improved to less than 5% at 10 years. However, audible nasal air leakage, prevalent in 23% at 5 years, did not improve by age 10. Thirty percent had frequent or almost always persistent compensatory articulation at 5 years, and 6% at age 10. The general impression of speech improved markedly, from 57% giving a normal impression at 5 years to 89% at 10 years. A high prevalence of distorted/s/was found at both 5 and 10 years of age. CONCLUSIONS: A high occurrence of speech deviances at 5 years of age after MIT was markedly reduced at 10 years in this study of children with unilateral cleft lip and palate. The high pharyngeal flap rate presumably accounted for the positive speech development.

Living with facial disfigurement--strategies for individuals and care management.

Individuals and families affected by craniofacial disorders have expressed dissatisfaction with their experiences in the healthcare system, with day care, and in school situations. To capture their views, focus group encounters were done in a group of young individuals with these disorders and in a group of parents whose children were affected. The aim was to synthesize their attitudes and experiences into improved strategies for parents, teenagers, and professionals in the healthcare system. Their views were compiled into a document that emphasizes the responsibilities of persons with craniofacial disorders and their parents to actively seek information on diagnosis and treatment options and to participate in decisions on therapy. The conclusion was that it is not lack of specific knowledge but rather a lack of implementation of existing recommendations that makes living with facial disfigurement difficult for many individuals and their families.

Speech results after one-stage palatoplasty with or without muscle reconstruction for isolated cleft palate.

OBJECTIVE: To investigate speech outcome between children with isolated cleft palate undergoing palatoplasty with and without muscle reconstruction and to compare speech outcomes between cleft and non cleft children. The number of subsequent velopharyngeal flaps was compared with respect to surgical techniques and cleft extent. DESIGN: Cross-sectional retrospective study. PARTICIPANTS: One hundred four children aged 4 years, 0 months to 6 years, 0 months, 33 with isolated cleft of the soft palate, 53 with isolated cleft of the hard and soft palate, and 18 non cleft children. INTERVENTIONS: Two primary palate repair techniques: minimal incision technique (MIT) and minimal incision technique including muscle reconstruction (MIT(mr)). MAIN OUTCOME MEASURES: Perceptual judgment of seven speech parameters assessed on a five-point scale. RESULTS: No significant differences in speech outcomes were found between MIT and MIT(mr) surgery groups. The number of velopharyngeal flaps was significantly lower after MIT(mr) surgery compared to MIT surgery. The number of flaps was also significantly lower in children with cleft of the soft palate compared to children with cleft of the hard and soft palate. Children with cleft of the soft palate had significantly less glottal articulation and weak pressure consonants compared to children with cleft of the hard and soft palate. CONCLUSIONS: The MIT(mr) surgery technique was not significantly superior to the MIT technique regarding speech outcomes related to velopharyngeal competence, but had fewer velopharyngeal flaps, which is contradictory. Until a larger sample can be studied, we will continue to use MIT(mr) for primary palate repair.