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1.
Cleft Palate Craniofac J ; 61(3): 492-497, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36594490

RESUMO

OBJECTIVE: (1) To compare anxiety between parents of newborns with cleft lip and palate (CLP), isolated cleft palate (CP), and healthy newborns and (2) to evaluate anxiety between parental dyads within these groups. DESIGN: A cross-sectional study. SETTING: University Hospital. PARTICIPANTS: Surveys were completed by 20 mothers and 20 fathers of newborns with CLP, 21 mothers and 21 fathers of newborns with CP, and 23 mothers and 23 fathers of healthy newborns (controls). MAIN OUTCOME MEASURE: The State-Trait Anxiety Inventory (STAI) assessed parental anxiety. Mothers of newborns with a cleft reported on concerns regarding cleft-related issues and facial appearance. RESULTS: State and trait anxiety were generally in the moderate range for parents of newborns with a cleft, while control parents had low state anxiety and moderate trait anxiety. Mothers of newborns with CP and CLP had significantly higher state and trait anxiety levels than control mothers (p < .05). Fathers of newborns with CLP had a higher state anxiety level than control fathers. When maternal and paternal anxiety was compared within the groups, only trait anxiety scores were significantly higher in mothers of newborns with CLP than that of fathers (p < .05). More than half of mothers of newborns with a cleft were concerned about their newborn's feeding, speech, and palate. CONCLUSIONS: Parents of children with a cleft may need psychological support in the early postnatal period. It is important for neonatal cleft team providers to help reduce parental anxiety and educate families about cleft care, with a focus on feeding.


Assuntos
Fenda Labial , Fissura Palatina , Masculino , Criança , Feminino , Humanos , Recém-Nascido , Fissura Palatina/psicologia , Fenda Labial/psicologia , Estudos Transversais , Pais/psicologia , Ansiedade
2.
Cleft Palate Craniofac J ; 61(1): 52-60, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-35979595

RESUMO

The aim of the present study was to describe the experiences of young adults living with cleft lip and palate (CLP) and to explore potential gender differences.A descriptive qualitative study was designed involving semi-structured interviews. The interviews were analyzed using qualitative content analysis, as described by Graneheim and Lundman.A total of 9 women and 8 men, aged 22 to 26 years with UCLP.The main theme identified was: the duality of living with a cleft-being normal yet different, and 2 subcategories: "My cleft and me" and "My cleft and the World." The participants described themselves as normal yet different, both in relation to themselves and in relation to others. They also stated that gender norms regarding appearance affected their lives and how they saw the cleft.This study adds to the growing body of qualitative research on CLP. It highlights the dualistic experiences of feeling normal and different at the same time. The interviews indicated that this dualism was based on context and gender, showing the psychological complexity of an individual. The clinical implications of this study emphasizes the need of a person-centered care approach in the cleft care setting where the clinicians are aware of the potential dualistic experience that also may differ over time that individuals with cleft can experience. This can also help clinicians better understand and help patients reduce distress and strengthen positive coping mechanisms.


Assuntos
Fenda Labial , Fissura Palatina , Masculino , Adulto Jovem , Humanos , Feminino , Fenda Labial/cirurgia , Fenda Labial/psicologia , Fissura Palatina/cirurgia , Fissura Palatina/psicologia , Adaptação Psicológica , Pesquisa Qualitativa
3.
Cleft Palate Craniofac J ; 61(1): 40-51, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-36083151

RESUMO

OBJECTIVES: To determine the UK prevalence of behavioral problems in 5-year-old children born with isolated or syndromic cleft lip and/or palate (CL/P) compared to the general population and identify potentially associated factors. DESIGN: Observational study using questionnaire data from the Cleft Collective 5-Year-Old Cohort study and three general population samples. MAIN OUTCOME MEASURE: The Strengths and Difficulties Questionnaire (SDQ). PARTICIPANTS: Mothers of children (age: 4.9-6.8 years) born with CL/P (n = 325). UK general population cohorts for SDQ scores were: Millennium Cohort Study (MCS) (n = 12 511), Office of National Statistics (ONS) normative school-age SDQ data (n = 5855), and Avon Longitudinal Study of Parents and Children (ALSPAC) (n = 9386). RESULTS: By maternal report, 14.2% of children born with CL/P were above clinical cut-off for behavioral problems, which was more likely than in general population samples: 7.5% of MCS (OR = 2.05 [1.49-2.82], P < 0.001), 9.8% of ONS (OR = 1.52 [1.10-2.09], P = 0.008), and 6.6% of ALSPAC (OR = 2.34 [1.70-3.24], P < 0.001). Children in the Cleft Collective had higher odds for hyperactivity, emotional and peer problems, and less prosocial behaviors. Maternal stress, lower maternal health-related quality of life and family functioning, receiving government income support, and maternal smoking showed evidence of association (OR range: 4.41-10.13) with behavioral problems, along with maternal relationship status, younger age, and lower education (OR range: 2.34-3.73). CONCLUSIONS: Findings suggest elevated levels of behavioral problems in children born with CL/P compared to the general population with several associated maternal factors similar to the general population.


Assuntos
Fenda Labial , Fissura Palatina , Comportamento Problema , Criança , Pré-Escolar , Humanos , Fenda Labial/epidemiologia , Fenda Labial/psicologia , Fissura Palatina/epidemiologia , Fissura Palatina/psicologia , Estudos de Coortes , Estudos Longitudinais , Prevalência , Qualidade de Vida
4.
BMC Oral Health ; 23(1): 1011, 2023 12 16.
Artigo em Inglês | MEDLINE | ID: mdl-38104058

RESUMO

BACKGROUND: Cleft lip and palate are the most common developmental anomalies that affect the mouth and related structures. They can both affect children physiologically, socially, and functionally and lead to psychological distress in their parents. The present study aims to understand the challenges parents of cleft lip and palate patients face in Egypt, elucidate how they cope with these challenges, and assess their concerns for the future. METHODS: For the present phenomenological qualitative exploration, the parents of cleft lip and palate patients attending the cleft care clinic were invited to participate in the study through face-to-face recruitment at the clinic. An interview guide about the research question was developed to include standardized open-ended questions providing a framework for structured discussions. The interviews were audio-recorded after obtaining written informed consent from participants then collected data were transcribed for data analysis. RESULTS: Of the 12 participants, there were nine mothers and three fathers. Their children's ages ranged from 1.5 years to 19 years and had different presentations of cleft lip and palate from unilateral cleft lip to complete bilateral cleft lip and palate. Feeding difficulty was one of the main challenges encountered by the parents. At the same time, fear of being subjected to bullying was the main concern for the future of their children. Six themes were noted that were continually reported: Health & Wellbeing; Parental emotions; Parental attitudes & behaviors; Financial aspects; Relationship aspects; and Career/Education. CONCLUSIONS: There were 4 factors that directly impacted the themes, namely: the type of cleft, gender of the child, gender role of the parent, and the age of the child impacted the parental concerns and the challenges faced under the influence of sociocultural beliefs and existing support systems.


Assuntos
Fenda Labial , Fissura Palatina , Criança , Feminino , Humanos , Lactente , Fenda Labial/psicologia , Fissura Palatina/psicologia , Egito , Pais/psicologia
5.
J Plast Reconstr Aesthet Surg ; 84: 422-431, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37406373

RESUMO

BACKGROUND: Individuals with orofacial cleft (OFC) may be at a higher risk of developing psychiatric disorders (PD) than the general population. We determined the risk of psychiatric diagnoses in children with OFC in Canada. METHODS: This population-based retrospective cohort study used health administrative data from the province of Ontario, Canada. Children with OFC who were born between April 1, 1994, and March 31, 2017, in Ontario were matched to five non-OFC children based on sex, date of birth, and mother's age. We determined the rate of events and time-to-event for first diagnosis of PD in children aged ≥ 3 years (y), and for intellectual developmental delay (IDD) from birth. Risk factors for PD and IDD were assessed using 1-way ANOVA for means, Kruskal-Wallis for medians, and the χ2 test for categorical variables. OUTCOMES: There were 3051 children with OFC (matched to 15,255 controls), of whom 2515 patients with OFC (12,575 controls) had a complete follow-up to the third birthday. Children with OFC were more likely to have PD than controls (54.90 vs. 43.28 per 1000 patient-years, P < .001), with a mean age to first diagnosis of 8.6 ± 4.2 y. The cleft palate group had the highest risk (HR 1.33, 95% CI 1.18-1.49). Children with OFC also had a higher risk of IDD than non-OFC children (27.78 vs. 3.46 per 1000 patient-years, p < .001). INTERPRETATION: Children born with OFC in Ontario had a higher risk of psychiatric diagnosis and IDD compared to controls. Further research is also required to better understand the predictors of variation in risk, including geographic location and the presence of congenital abnormalities, and identify potential areas for intervention. EVIDENCE RATING SCALE FOR PROGNOSTIC/RISK STUDIES: Level II.


Assuntos
Fenda Labial , Fissura Palatina , Transtornos Mentais , Humanos , Criança , Fissura Palatina/complicações , Fissura Palatina/epidemiologia , Fissura Palatina/psicologia , Fenda Labial/complicações , Fenda Labial/epidemiologia , Fenda Labial/psicologia , Estudos Retrospectivos , Ontário/epidemiologia , Transtornos Mentais/complicações , Transtornos Mentais/epidemiologia
6.
Int J Lang Commun Disord ; 58(5): 1526-1538, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37072901

RESUMO

BACKGROUND: Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Much less is known about how children perceive cleft speech therapy. AIMS: The purpose of the current qualitative study was to investigate the perceptions, emotions and expectations of Flemish-speaking Dutch children with a cleft (lip and) palate (CP ± L), aged 5-12 years, with regard to the speech therapy they receive. In this study, a focus was made on speech therapy to eliminate compensatory cleft speech errors. METHODS & PROCEDURES: Six children with a CP ± L, aged between 5 and 12 years, were included in this study. Child-friendly semi-structured interviews were conducted using a participatory, art-based qualitative approach. This means that the 'play and puppets technique' and 'draw-write and photo-elicitation technique' were used to guide the children through the interviews. Data derived from these interviews were analysed using an inductive thematic approach. Trustworthiness of the data was achieved by applying researcher triangulation, negative case analysis and an audit trail. OUTCOMES & RESULTS: Analyses of the interviews revealed three major themes of importance to the children: (1) treatment values, (2) treatment practices and (3) treatment outcomes. Each theme was divided into different subthemes. The theme 'treatment values' consisted of the subthemes expectations and emotions around therapy and interference with daily living. Information flow, therapy content, confirmation and rewards, parents' attendance, therapy intensity, and homework were subthemes of the major theme 'treatment practices'. The theme 'treatment outcomes' was divided into two subthemes, namely speech improvement and peers' reactions. CONCLUSIONS & IMPLICATIONS: Most children had positive attitudes towards speech therapy: it was 'something they liked' and 'something fun'. If children had negative attitudes they were related to having a fear of making mistakes during therapy. Children had clear expectations of the purpose of speech therapy. Speech therapy should 'help' improve their speech and make it more understandable to others. The children in this sample made some suggestions to decrease the experienced burden related to speech therapy. The results of this study will help to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L. WHAT THIS PAPER ADDS: What is already known on the subject Evidence-based speech therapy involves the integration of (1) the scientific evidence for therapy with (2) the perspectives of clinicians concerning therapy and (3) the perspectives of patients and their families about therapy. The cleft literature has already paid attention to the first two cornerstones of evidence-based speech therapy. Different studies investigated the perspectives of SLPs and parents with regard to cleft palate speech therapy. However, much less is known about the children's own experiences with and perceptions around this speech therapy. What this study adds to existing knowledge This study used a qualitative research design to investigate the perceptions, emotions and expectations of children with a cleft (lip and) palate, aged 5-12 years, with regard to the speech therapy they receive. Speech therapy needed to focus on the elimination of compensatory speech errors. This study provides knowledge on the speech therapy-related experiences of children with a cleft palate. What are the potential or actual clinical implications of this work? Children in this sample made some concrete suggestions to decrease the experienced burden related to cleft speech therapy, for example, integration of school work during therapy sessions and practising on the level of spontaneous speech. The results of this study help us to better tailor speech therapy programmes to the needs and experiences of children with a CP ± L.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Pré-Escolar , Criança , Fissura Palatina/psicologia , Fonoterapia , Fala , Terapia da Linguagem , Fenda Labial/psicologia , Pesquisa Qualitativa , Emoções
7.
J Evid Based Dent Pract ; 23(1S): 101792, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36707166

RESUMO

An orofacial cleft (OC) is a congenital cleft that may affect the lip, alveolus, hard and soft palate. An OC impacts the individuals' appearance, psychosocial well-being and causes functional problems including feeding, dentition, growth of jaws, hearing and speech. The treatment of an orofacial cleft usually reaches from birth until 22 years of age or later. To understand and listen in an objective manner, OC specific Patient reported Outcome (PRO) and experience (PRE) measures are imperative. In patients with OCs many shared decision making moments exist from birth until adulthood. The aim is to understand what knowledge exists on PROs and PREs in patients with OCs, to formulate challenges to improve care to OC patients and how research on OCs needs to adapt. PROs and PREs need to be tailored to the individual with an OC. A framework with specific OC key domains including appearance, facial function and Health related Quality of Life exists. The current framework does not include the social network around the OC patients yet. However attention should be put on including family and community support into the framework. Also at an individual level more attention should be paid to enhancing experiences compared to impeding experiences. To create a better understanding traditional indicators and outcomes are combined with PROMs in a structured way. Challenges were identified that seek to improve our complete set of (PRO and PRE) instruments to provide better care to the individual with an OC and provide a voice so that good shared decision making is enabled. Thereby the individual with an OC is further empowered.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Adulto , Fenda Labial/psicologia , Fissura Palatina/psicologia , Qualidade de Vida
8.
Int J Pediatr Otorhinolaryngol ; 165: 111447, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36701818

RESUMO

BACKGROUND AND AIMS: Individuals with speech disorders are often judged more negatively than peers without speech disorders. A limited number of studies examined the attitudes of adolescents toward peers with speech disorders due to a cleft lip with or without a cleft of the palate (CL ± P). Therefore, the aim of the present study was to investigate the attitudes of peers toward the speech of adolescents with CL ± P. METHOD: Seventy-eight typically developing adolescents (15-18 years, 26 boys, 52 girls) judged audio and audiovisual samples of two adolescents with CL ± P based on three attitude components, i.e., cognitive, affective, and behavioral. The degree of speech intelligibility was also scored by their peers. The study investigated whether the three attitudes were determined by speech intelligibility or appearance of an individual with CL ± P. Furthermore, the influence of knowing someone with a cleft, the age, and gender of the listeners on their attitudes were explored. RESULTS: A significantly positive correlation was found between the speech intelligibility percentage and the three different attitude components: more positive attitudes were observed when the speech intelligibility of the speaker was higher. A different appearance due to a cleft lip does not lead to more negative attitudes. Furthermore, boys seem to have more negative attitudes toward individuals with CL ± P compared to girls. CONCLUSION: This study provided additional evidence that peers show more negative attitudes toward adolescents with less intelligible speech due to CL ± P. Intervention should focus on changing the cognitive, affective, and behavioral attitudes of peers in a more positive direction and remove the stigma of patients with a cleft. Further research is needed to verify these results.


Assuntos
Fenda Labial , Fissura Palatina , Masculino , Feminino , Humanos , Adolescente , Fenda Labial/complicações , Fenda Labial/psicologia , Fissura Palatina/complicações , Fissura Palatina/psicologia , Distúrbios da Fala/etiologia , Fala , Inteligibilidade da Fala
9.
Plast Reconstr Surg ; 151(2): 274e-281e, 2023 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-36696325

RESUMO

BACKGROUND: To ensure the feasibility of implementing PROMs in clinical practice, they must be continually appraised for undue burden placed on patients and clinicians and their usefulness for decision-making. This study assesses correlations between the CLEFT-Q psychosocial scales in the International Consortium for Health Outcomes Measurement Standard Set for cleft and explores their associations with patient characteristics and psychosocial care referral. METHODS: Spearman correlation coefficients were calculated for CLEFT-Q psychological function, social function, school function, face, speech function, and speech-related distress scales. Logistic regressions were used to assess the association of cleft phenotype, syndrome, sex, and adoption status on scale scores and clinical referral to psychosocial care for further evaluation and management. RESULTS: Data were obtained from 3067 patients with cleft lip and/or palate at three centers. Strong correlations were observed between social function and psychological function (r > 0.69) and school function (r > 0.78) scales. Correlation between school function and psychological function scales was lower (r = 0.59 to 0.68). Genetic syndrome (OR, 2.37; 95% CI, 1.04 to 5.41), psychological function (OR, 0.92; 95% CI, 0.88 to 0.97), school function (OR, 0.94; 95% CI, 0.90 to 0.98), and face (OR, 0.96; 95% CI, 0.94 to 0.98) were significant predictors for referral to psychosocial care. CONCLUSIONS: Because social function as measured by the CLEFT-Q showed strong correlations with both school and psychological function, its additional value for measuring psychosocial function within the Standard Set is limited, and it is reasonable to consider removing this scale from the International Consortium for Health Outcomes Measurement Standard Set for cleft.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Fenda Labial/cirurgia , Fenda Labial/psicologia , Fissura Palatina/cirurgia , Fissura Palatina/psicologia , Fala , Avaliação de Resultados em Cuidados de Saúde
10.
Cleft Palate Craniofac J ; 60(3): 327-335, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-34919453

RESUMO

OBJECTIVE: CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales. DESIGN: Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. SETTING: Seven cleft centres in Canada, the USA, and UK were involved. PATIENTS/PARTICIPANTS: Patients were aged eight to 29 years with CL/P. INTERVENTIONS: Before undergoing rhinoplasty, orthognathic, cleft lip scar revision, and alveolar bone graft, participants were asked to complete the following PROMs: CLEFT-Q (9 scales), Child Oral Health Impact Profile (socio-emotional subscale) and Cleft Hearing Appearance and Speech Questionnaire (features 1 subscale). MAIN OUTCOME MEASURE(S): The correlation coefficients examining the relationship between the scales were the main outcome measures. Correlations (Spearman) were calculated and interpreted as follows: <0.3 weak, 0.30 to 0.50 moderate, ≥0.50 strong. RESULTS: Participants (n = 177) were mostly male (61%) and aged between eight and 11 years (42%). Overall, 38 of 52 (73%) hypotheses tested were supported. More specifically, 20 of 26 (77%) hypotheses about correlations between the appearance scales were supported, two of three (67%) hypotheses about correlations between the health-related quality of life scales were supported, and 16 of 23 (70%) hypotheses about correlations between the appearance and health-related quality of life scales were supported. CONCLUSIONS: Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument.


Assuntos
Fenda Labial , Fissura Palatina , Criança , Humanos , Masculino , Feminino , Fenda Labial/cirurgia , Fenda Labial/psicologia , Fissura Palatina/cirurgia , Fissura Palatina/psicologia , Estudos Prospectivos , Qualidade de Vida , Psicometria , Estudos Transversais , Medidas de Resultados Relatados pelo Paciente
11.
Cleft Palate Craniofac J ; 60(7): 888-899, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35254151

RESUMO

OBJECTIVE: Children and adolescents with orofacial clefts may experience ongoing psychosocial impacts due to the continuous nature of cleft treatments, facial and dental differences, and speech and hearing difficulties. The aim of this qualitative systematic review was to better understand the experiences of children and adolescents with orofacial clefts. DESIGN: A systematic search strategy using PubMed, Embase, Emcare, Scopus, and Web of Science databases was performed to identify relevant qualitative studies evaluating the lived experience of children and adolescents with orofacial clefts from inception through to June 2021. Eligible studies were critically appraised using the Joanna Briggs methodology and a meta-aggregative approach. RESULTS: The search identified 2466 studies, with 13 found to meet the inclusion criteria. Extraction of 155 findings resulted in 27 categories, which were meta-aggregated into 7 overarching synthesized findings. These 7 core findings included aspects of child experience and findings that enhanced or impeded child experience at the individual, family, and community levels. CONCLUSIONS: Factors that impeded child experience at the individual, family, and community levels were more pronounced than factors that enhanced their experience among children and adolescents with orofacial clefts. Further initiatives are needed to provide support to individuals, families, and school communities to enhance children's experience of orofacial cleft during the formative childhood and adolescent years.


Assuntos
Fenda Labial , Fissura Palatina , Criança , Adolescente , Humanos , Fenda Labial/psicologia , Fissura Palatina/psicologia , Face , Pesquisa Qualitativa
12.
Cleft Palate Craniofac J ; 60(3): 336-343, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-34859701

RESUMO

OBJECTIVE: The aim of this study was to describe coping strategies used by parents of children with cleft palate with or without a cleft (CP ± L) during the early development of their children in El Salvador. DESIGN: Qualitative interviews were completed with 16 parents of children born with CP ± L who were 6 months to 6 years old. Parents were questioned about their emotions and coping during eight time periods: prenatal, birth, social interaction before the first surgery, the beginning of surgeries, social interaction after the first surgery, early childhood education (ECE), speech-language therapy, and formal education. Thematic analysis (TA) was used to identify coping strategies as conceptualized by Lazarus and Folkman (1984). RESULTS: Four major themes emerged: (a) experienced emotions related to diagnosis, (b) interpretations related to the birth of a child with a cleft, (c) seeking and experiencing cleft treatment, and (d) social interaction of the children. During prenatal and birth stages, parents used emotion-focused strategies. A few hours to a week after birth, they used problem-focused strategies, which led them in search of treatment. Some parents used avoidance strategies during periods of social interaction before surgery, ECE, and formal education. Socioeconomic challenges impacted access to speech-language therapy. Sociocultural factors, such as discrimination, religion, and folk beliefs, appeared to influence some of the coping strategies used by parents. CONCLUSIONS: Problem-focused strategies appear to be helpful in seeking surgical treatments. The emotion-focused strategy of avoidance seemed to have adverse effects in minimizing opportunities for social interaction prior to surgery and early education.


Assuntos
Fenda Labial , Fissura Palatina , Criança , Pré-Escolar , Humanos , Fenda Labial/cirurgia , Fenda Labial/psicologia , Fissura Palatina/cirurgia , Fissura Palatina/psicologia , El Salvador , Adaptação Psicológica , Pais/psicologia
13.
Cleft Palate Craniofac J ; 60(12): 1546-1555, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-35861791

RESUMO

OBJECTIVE: To examine the relationship between stigma experience related to facial appearance in Japanese youths with cleft lip and/or palate (CL/P) and their self-perception. DESIGN: A cross-sectional study. PARTICIPANTS: Sixty-nine Japanese youths with CL/P (11-18 years old). OUTCOME MEASURES: The participants' stigma experience in relation to facial appearance (measured with 7 single contextual scale items) and their self-perception (measured with 5 domain scores based on 30 perceptual items) were assessed using the Japanese version of the Youth Quality of Life Instrument-Facial Differences Module. Participants were categorized into high and low self-perception subgroups with a threshold of 1 standard deviation for each domain. The frequency of stigma experiences was compared between the following 2 subgroups: age, sex, cleft palate only versus other cleft, and high versus low self-perception. Correlations between the responses regarding stigma and all domain scores were examined. RESULTS: Sixteen percent of the participants reported experiencing stigma. Hearing others say something about their face occurred significantly more frequently in youths 15 to 18 years of age than in youths 11 to 14 years of age. Stigma frequency was not found to differ by sex or cleft type. Stigma experiences were significantly more frequent for youth with higher scores across negative self-perception domains as well as higher coping skills. Significant correlations were identified between responses regarding stigma items and all domain scores (r = 0.27-0.63, p < .05). CONCLUSIONS: It was found that stigma experiences related to facial appearance may influence negative self-perceptions of facial differences as well as higher coping skills among Japanese youths with CL/P.


Assuntos
Fenda Labial , Fissura Palatina , Aparência Física , Autoimagem , Estigma Social , Adolescente , Criança , Humanos , Fenda Labial/etnologia , Fenda Labial/psicologia , Fissura Palatina/etnologia , Fissura Palatina/psicologia , Estudos Transversais , População do Leste Asiático/psicologia , Qualidade de Vida , Face , Japão , Aparência Física/etnologia , Adaptação Psicológica
14.
Cleft Palate Craniofac J ; 60(11): 1474-1483, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-35675171

RESUMO

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children.Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL).Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning.Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.


Assuntos
Fenda Labial , Fissura Palatina , Adolescente , Criança , Humanos , Masculino , Feminino , Qualidade de Vida/psicologia , Fenda Labial/psicologia , Fissura Palatina/psicologia , Estudos de Coortes , Pais/psicologia , Doença Crônica
15.
Orthod Craniofac Res ; 26(3): 387-392, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-36309845

RESUMO

OBJECTIVE: Individuals born with cleft lip and palate may face difficulties in speech function, nutrition, facial aesthetics, and long-term care. These difficulties may increase the risk of psychological and psychiatric diseases. This work aimed to test if the variant allele of COMT was carried more frequently among individuals that have psychological and psychiatric outcomes within a cohort of patients born with cleft lip and palate. METHOD: DNA extraction from saliva of two hundred and fifteen individuals born with cleft lip with and/or palate and genotyping was performed, and the frequency of COMT rs4818 alleles was determined. The domain 'Psychological Function' of Cleft-Q™ was used to generate scores for analysis. The scores were computed, and differences in genotype or allele frequencies between individuals with psychological function scores 60 or above and 59 or below were compared. The history of psychiatric illness (family history of psychiatric disease or self-reported psychiatric illness) was registered. RESULTS: Genotype and allele frequencies were compared between individuals with and without a family history of psychiatric illness. Individuals with lower Psychological Function (Cleft-Q™) scores were more likely to be GG (P = .04) or carriers of allele G (P < .001). The reported psychiatric illness and positive family history of psychiatric illness were compared to COMT rs4818 allele and genotype frequencies of individuals without these indicators, and individuals with psychiatric illness and positive family history of psychiatric illness were more likely to carry allele G (P = .03 and P = .008, respectively). CONCLUSION: The study confirms previously suggested role of COMT rs4818 in psychiatric and psychological outcomes in a distinct cohort of patients born with cleft lip and palate.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Fenda Labial/genética , Fenda Labial/psicologia , Fissura Palatina/genética , Fissura Palatina/psicologia , Alelos , Frequência do Gene/genética , Catecol O-Metiltransferase/genética
16.
Int J Lang Commun Disord ; 58(2): 326-341, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36189983

RESUMO

BACKGROUND: Increasing attention is paid to the effectiveness of high-intensity speech intervention in children with a cleft (lip and) palate (CP±L). It is, however, unknown if high-intensity intervention is acceptable to the intervention recipients. Parents have an integral role in supporting their children with intervention highlighting the importance of intervention acceptability to parents. AIMS: To compare the retrospective acceptability of high-intensity speech intervention (10 1-hr speech therapy sessions divided over 2 weeks) with the retrospective acceptability of low-intensity speech intervention (10 1-hr speech therapy sessions divided over 10 weeks) for children with a CP±L from the parents' point of view. METHODS & PROCEDURES: Twelve parents of 12 children, aged 6-0 years who received high-intensity speech intervention (n = 6) or low-intensity speech intervention (n = 6), were invited to participate in this study. Seven parents (n = 3 in the high-intensity group and n = 4 in the low-intensity group) agreed to participate (total response rate: 7/12, 58.33%). A qualitative study design using semi-structured interviews was applied. To investigate the retrospective acceptability of the two intervention intensities, deductive coding according to the Theoretical Framework of Acceptability (TFA) was used. OUTCOMES & RESULTS: With regard to the TFA construct 'affective attitude', results demonstrated that parents had positive feelings about the provided speech intervention regardless of the intensity. Parents of children who received high-intensity speech intervention reported two specific benefits related to the high intervention intensity: (1) it improved their relationship with the speech-language pathologist and (2) it improved their child's ability to make self-corrections in his/her speech. Even though both high-intensive and low-intensity speech intervention were considered burdensome (TFA construct 'burden'), parents were less likely to drop out of high-intensity intervention because the total intervention period was kept short. CONCLUSIONS & IMPLICATIONS: In conclusion, high-intensity speech intervention seemed acceptable to parents. More positive codes were identified for some of the TFA constructs in the high-intensity intervention group than in the low-intensity intervention group. Considering that some parents doubted their self-efficacy to participate in high-intensity speech intervention, speech-language pathologists need to counsel them so that they can adhere to the high intervention intensity. Future studies should investigate whether high-intensity speech intervention is also acceptable to the children who receive the intervention and to the speech-language pathologists who deliver the intervention. WHAT THIS PAPER ADDS: What is already known on this subject Increasing attention is paid to the effectiveness of high-intensity speech intervention in children with a cleft (lip and) palate (CP±L). Different quantitative studies have shown positive speech outcomes after high-intensity cleft speech intervention. Despite this increasing attention to high-intensity speech intervention, it is unknown whether high-intensity intervention is also acceptable to the intervention recipients. This study compared the retrospective acceptability of high-intensity speech intervention (10 1-hour speech therapy sessions divided over 2 weeks) with the retrospective acceptability of low-intensity speech intervention (10 1-hour speech therapy sessions divided over 10 weeks) in children with a CP±L from the parents' point of view. What this paper adds to existing knowledge More positive codes were identified for some of the TFA constructs in the high-intensity intervention group than in the low-intensity intervention group. Nevertheless, some parents doubted their self-efficacy to participate in high-intensity speech intervention. What are the potential or actual clinical implications of this work? The findings of this study forces us to reconsider the traditional cleft speech intervention delivery models which usually consist of low-intensity intervention. Speech-language pathologists need to counsel parents and so that they can adhere to the high intervention intensity.


Assuntos
Fenda Labial , Fissura Palatina , Criança , Humanos , Feminino , Masculino , Fissura Palatina/complicações , Fissura Palatina/psicologia , Fala , Estudos Retrospectivos , Fenda Labial/psicologia , Pais
17.
Georgian Med News ; (345): 178-182, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38325320

RESUMO

Oral facial clefts (OFC) among adolescents can pose several significant challenges. Assessing one's contentment with one's appearance following surgery may be useful in identifying young people who may have adjustment issues. Aim - to find the efficacy of the biopsychosocial intervention on beauty satisfaction among adolescents with oral facial clefts surgery. A descriptive survey was conducted among 86 adolescents, selected by simple random technique, who underwent staged surgical procedures for OFC at Charles Pinto Centre for Cleft Lip & Palate in India. Beauty satisfaction was measured by a Four-point rating scale. During the second phase, a Quasi-experimental design was adopted among 10 samples & Seven-day biopsychosocial intervention package was administered after the pretest assessment. Most of the samples have only an average level of beauty satisfaction of 48 (55.8%), whereas a high level of beauty satisfaction was observed only among 24 (27.9%) samples & 14 (16.3%) had a low level. The study also revealed that both genders equally experience dissatisfaction with beauty (P=0.381). F- value for comparing beauty satisfaction among different age groups of adolescents was found to be non-significant at 0.05 level (p=0.253). This depicts that as age increases adolescents are more conscious of their beauty and appearance. The Level of beauty satisfaction has increased after the implementation of the biopsychosocial intervention (p=0.001) at 0.01 level in the second phase, which is in tune with the study findings of Kapp Simon. Counselling and looking at actual facial features can help people accept their looks, according to study results on beauty satisfaction. Thus, a productive line of inquiry into cleft psychosocial research that ascertains the alterations in facial growth and the surgical experience must be assembled through observational, longitudinal, and cross-sectional investigations.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Adolescente , Masculino , Feminino , Fissura Palatina/cirurgia , Fissura Palatina/psicologia , Fenda Labial/cirurgia , Fenda Labial/psicologia , Estudos Transversais , Face/cirurgia , Satisfação Pessoal
18.
Plast Reconstr Surg ; 150(2): 301-308, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35666164

RESUMO

BACKGROUND: Despite various aesthetic trends, the ideal lip proportion and lip volume remains elusive. Thus, the aim of this study was to investigate the aesthetic perception of various lip shapes to identify the most attractive lips. METHODS: Fifty-nine White study participants with a mean age of 32.73 ± 9.4 years were asked to assess lips of various proportions and of various volumes. Gaze assessment and aesthetic rating of the same set of modified lip images were performed. RESULTS: The results revealed that the lip proportion that was rated to be most attractive was the 1:1.6 ratio (upper-to-lower lip, 4.21 of a possible 5). This lip proportion, however, was not the first one to be viewed on initial image display (1.20 sec) and had the shortest duration of a stable eye fixation within the 6-second image display interval (2.18 of 6 seconds). The lip volume that received the highest aesthetic rating was the 100 percent volume (original lip size), with 4.56 of a possible 5. This lip volume, however, had the third longest interval between initial image exposure and the first stable eye fixation (0.81 second) and had the shortest duration of stable eye fixations during the 6 seconds of image display (2.22 of 6 seconds). CONCLUSION: The results presented could be potentially reflective of the internal cognitive processes during the involuntary and voluntary assessment of lip attractiveness.


Assuntos
Fenda Labial , Lábio , Adulto , Fenda Labial/psicologia , Estética , Tecnologia de Rastreamento Ocular , Fixação Ocular , Humanos , Lábio/cirurgia , Adulto Jovem
19.
Cleft Palate Craniofac J ; 59(12): 1502-1508, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-34870472

RESUMO

OBJECTIVE: To examine quality of life in internationally adopted children with cleft lip and/or palate (CL/P) versus non-adopted children with CL/P. DESIGN: Cross sectional study. SETTING: Multidisciplinary cleft team of a secondary and tertiary hospital in the Netherlands. METHODS: Parents of children under the age of 8 treated by the multidisciplinary cleft team of our institutions were asked to fill out a questionnaire containing demographic and clinical data and a validated parent proxy measure of cleft-specific quality of life instrument for children aged 0-8: the CleftChild-8. Adopted children were matched to non-adopted children using propensity score matching based on sex, age, type of cleft, if palatal surgery was completed and the level of education of the parent. CleftChild-8 scores were then compared between the matched samples of adopted and non-adopted children with CL/P. MAIN OUTCOME MEASURE(S): Differences in (sub)domain scores of the CleftChild-8. RESULTS: Most median CleftChild-8 scores of the adopted children (n = 29) were slightly lower compared to the 29 matched non-adopted children. A significant difference was seen for the domain score 'satisfaction with (operative) treatment' and 3 of the 13 subdomain scores: 'post-operative results', 'acceptance by siblings' and 'acceptance by family/friends'. CONCLUSIONS: By parent report, adopted children with CL/P experienced some areas of lower quality of life when compared to non-adopted children. Members of cleft teams should be aware of the problems associated with adoption and offer additional guidance and counseling to adopted children and their parents.


Assuntos
Fenda Labial , Fissura Palatina , Humanos , Fenda Labial/psicologia , Fissura Palatina/psicologia , Qualidade de Vida , Pontuação de Propensão , Estudos Transversais , China
20.
Eur J Orthod ; 44(3): 268-278, 2022 05 24.
Artigo em Inglês | MEDLINE | ID: mdl-34891156

RESUMO

OBJECTIVE: The purpose of this study was to evaluate the influence of orthodontic treatment on the oral health-related quality of life (OHRQoL) of patients with cleft lip and palate. SEARCH METHODS: Electronic searches were conducted in Pubmed, Scopus, Web of Science, Cochrane Library, VHL, and OpenGrey databases, completed in January 2021. SELECTION CRITERIA: Cross-sectional and longitudinal observational studies that presented an assessment of OHRQoL in cleft patients undergoing orthodontic treatment were included, according to PRISMA guidelines. Contacts via email were made with authors, to clarify inaccuracies or request additional data. DATA COLLECTION AND ANALYSIS: The entire process was accomplished by two authors, in case of disagreement, a third author mediated the discussion until there was a consensus. Risk assessment was performed by the Fowkes and Fulton qualifier, and the quality of evidence, assessed by the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) tool. A meta-analysis was performed considering the domains combined into three large groups (physical, psychological, and social). The questionnaires were standardized as to the scores and their direction. RESULTS: A total of 3822 studies were retrieved. After excluding duplicates, the titles and abstracts of the remaining articles were analysed. Twenty-eight articles were read in full; 13 met the eligibility criteria; 12 articles showed sufficient methodological quality and 7 were included in the quantitative assessment. The included studies were published between 2011 and 2019. The samples comprised 19 to 183 patients of both sexes. GRADE showed low evidence when compared to the control group, sexes, age, and types of cleft and very low evidence among longitudinal articles. CONCLUSIONS: The OHRQoL is lower in orthodontic patients with cleft than in those without. The OHRQoL of patients with cleft undergoing orthodontic treatment is not influenced by gender or age group, considering children and adolescents, but it is influenced by the type of cleft. The OHRQoL of patients with CLP does not undergo significant changes during orthodontic treatment. LIMITATIONS: The variety of instruments for measuring OHRQoL rendered meta-analysis difficult. REGISTRATION: PROSPERO database number CRD42017054764.


Assuntos
Fenda Labial , Fissura Palatina , Adolescente , Criança , Fenda Labial/psicologia , Fissura Palatina/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Saúde Bucal , Qualidade de Vida
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