Article

Social-Emotional Development of Infants and Young Children With Orofacial Clefts

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  • University of Washington School of Medicine, Seattle
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Abstract

Children with orofacial clefts are believed to have distinctly elevated risk for a variety of adverse social-emotional outcomes including behavior problems, poor self-concept, and parent-child relationship difficulties. This assumption has been based primarily on theories of facial appearance and social bias, a handful of empirical studies, and clinical impressions. Studies of these children have been limited by methodological problems such as diagnostic heterogeneity, ascertainment bias, and absent or poorly matched control groups. In an attempt to address at least some of these methodological problems, the longitudinal research described in this article examined the developmental course of infants with unilateral cleft lip & palate (CLP) and cleft palate only (CPO). We followed these infants to age 7, with ongoing comparisons to a demographically matched group of typical children. Outcome measures targeted child attachment, maternal/child interaction during feeding and teaching tasks, parent satisfaction with surgical outcomes, parent and teacher behavior rating scales, and child self-concept and behavioral adaptation. Although our findings have provided limited support for the hypothesis that infants and young children with CLP/CPO are at greater risk for social-emotional problems than their peers, we have found that among infants with clefts, early assessment can predict subsequent social-emotional outcomes. In this article, we review theory and data in this area of study, summarize our longitudinal findings, describe our success and failures with respect to methodological rigor, and discuss emerging research and areas for further inquiry.

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... Equally, several different outcome measures have been proposed for use in the craniofacial population (Collett & Speltz, 2006), and there is a lack of consensus over which tools are most useful and when . The Ages and Stages Questionnaires (ASQs) are widely used in early educational and healthcare settings more broadly and are endorsed by the UK government (Ofsted & NHS Digital, 2017). ...
... As an initial screen with the potential to identify the children in need of further assessment, the ASQ also offers an appealing alternative to the time-consuming battery of tests that are currently recommended in some countries (Collett & Speltz, 2006). Versions of the ASQ are available from the age of 1 month to 5.5 years, and children's progress can therefore be followed longitudinally. ...
Article
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Background: One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) has been shown to potentially impact long‐term physical and developmental outcomes in affected children. However, little is known about the factors that contribute to such outcomes, and there is a lack of consensus about which screening tools may be most effective. The aims of the current study were (a) to assess parent‐reported socioemotional and cognitive development in children born with CL/P at 18 months of age; (b) to identify factors associated with the incidence of developmental concerns; and (c) to assess the utility of the widely recommended Ages and Stages Questionnaires (ASQs) in identifying developmental concerns from an early age in the CL/P population. Methods: Parent‐reported questionnaire data were extracted from The Cleft Collective Cohort Study for 322 mothers of children with CL/P aged 18 months. Results: Mean scores across both ASQ measures indicated typical development in the study sample overall. However, 31.1% of children met a referral criterion on at least one domain. Child‐related risk factors included problems with physical development and feeding method. Parent‐related risk factors included the mother's levels of anxiety and depression and mother's marital status. Additional developmental concerns extracted from mothers' qualitative data included feeding difficulties, speech development, sleep patterns, aggressive behaviours, vision, oral health, hearing, breathing and motor skills. Conclusions: The majority of children in this study were developing as expected at 18 months of age. However, parent‐reported developmental concerns were identified in a minority of children, suggesting a need to screen for potential risk factors in routine practice. Further, the ASQ appears to offer a viable option in the early identification of developmental concerns in children with CL/P. A combined medical and systemic approach to healthcare is recommended to support the prevention of long‐term developmental concerns in the child and poor psychological adjustment in parents.
... Equally, several different outcome measures have been proposed for use in the craniofacial population (Collett & Speltz, 2006), and there is a lack of consensus over which tools are most useful and when . The Ages and Stages Questionnaires (ASQs) are widely used in early educational and healthcare settings more broadly and are endorsed by the UK government (Ofsted & NHS Digital, 2017). ...
... As an initial screen with the potential to identify the children in need of further assessment, the ASQ also offers an appealing alternative to the time-consuming battery of tests that are currently recommended in some countries (Collett & Speltz, 2006). Versions of the ASQ are available from the age of 1 month to 5.5 years, and children's progress can therefore be followed longitudinally. ...
Article
Full-text available
Background: One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) has been shown to potentially impact long-term physical and developmental outcomes in affected children. However, little is known about the factors that contribute to such outcomes, and there is a lack of consensus about which screening tools may be most effective. The aims of the current study were:1) to assess parent-report socioemotional and cognitive development in children born with CL/P at 18 months of age; 2) to identify factors associated with the incidence of developmental concerns; and 3) to assess the utility of the widely-recommended Ages and Stages Questionnaires (ASQ) in identifying developmental concerns from an early age in the CL/Pv population. Methods: Parent-reported questionnaire data were extracted from the Cleft Collective Cohort Study for 322 mothers of children with CL/P aged 18 months. Results: Mean scores across both ASQ measures indicated typical development in the study sample overall. However, 31.1% of children met a referral criterion on at least one domain. Child-related risk factors included problems with physical development and feeding method. Parent-related risk factors included the mother's levels of anxiety and depression, and mother's marital status. Additional developmental concerns extracted from mothers' qualitative data included feeding difficulties, speech development, sleep patterns, aggressive behaviours, vision, oral health, hearing, breathing, and motor skills. Conclusions: The majority of children in this study were developing as expected at 18 months of age. However, parent-reported developmental concerns were identified in a minority of children, suggesting a need to screen for potential risk factors in routine practice. Further, the ASQ appears to offer a viable option in the early identification of developmental concerns in children with CL/P. A combined medical and systemic approach to healthcare is recommended to support the prevention of long-term developmental concerns in the child and poor psychological adjustment in parents.
... Clinicians and investigators have anticipated poor socialemotional outcomes for many if not most children with orofacial clefts, including greater susceptibility to teasing or other forms of social rejection, greater likelihood of emotional or behavioral problems and limited quality of life (e.g., Speltz et al., 1994;Turner et al., 1998). Parents often worry about these outcomes for their children, in addition to those associated with the medical and physical aspects of clefting (Collett and Speltz, 2006). Empirical studies, however, have painted a more complex picture (see review by Hunt et al., 2005). ...
... A few studies also have examined parent and family status (see review by Collett and Speltz, 2006). Two have found that parents of children with orofacial clefts report higher levels of parenting stress than controls (e.g., Speltz et al., 1990;Pelchat et al., 1999). ...
Article
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Objective: To determine whether psychosocial functioning in children with orofacial clefts and their parents differs from that in unaffected controls. Design: The study used a nonrandomized, case-control design. Participants: Outcomes were evaluated in 93 cases with orofacial clefts and 124 controls, aged 5 to 9 years, who were part of the Massachusetts Center for Birth Defects Research and Prevention registry. Main outcome measures: Measures included the Child Behavior Checklist, the PedsQL 4.0, the Social Competence Scale, and the Parenting Stress Inventory. Results: Group differences were negligible for all measures, and findings changed little with the application of inverse probability weighting to adjust for response bias. Stratified analyses revealed differences according to both sex and age, with worse outcomes observed in male cases and cases aged 7 to 9 years. Conclusions: In contrast to previous studies, we found minimal differences in psychosocial functioning among children with orofacial clefts and their parents compared with unaffected controls. This may reflect ascertainment factors, and psychosocial differences may be less apparent in population-based versus clinic-based samples. Alternatively, social-emotional deficits may become apparent in older school-aged children, making the preschool and early elementary school years an optimal time for preventive interventions.
... However, in general, the attachment of the mother and infant dyad is not likely to be affected by the child's appearance. 17 The complexity of issues in caring for a child with an orofacial cleft challenges the primary care clinician and the family. It is always crucial that medical clinicians remain sensitive to the cultural, ethnic, and linguistic needs of the parents/family since the assimilation of the infant into the family is contingent on how the parents view the baby. ...
... There may be some early developmental delays that may partly be related to chronic medical problems including recurrent ear, nose, and throat problems and associated speech problems, although by school age many of these delays are not noticeable for children with nonsyndromic clefting. 17 Many require orthodontic care. Some adolescents may require additional plastic surgery to address residual structural abnormalities that impair communication or other oral-motor skills such as eating. ...
... In clinical practice, we have also found that many parents of patients with CL/P pay too much attention to the improvement of their children's appearance and function while ignoring their children's performance in interpersonal communication, personality development and school achievement and attribute the patients' inadaptability in these aspects only to different personalities and characteristics. Previous studies have also found similar problems (72)(73)(74). In summary, although the burden of life care and medical care for parents is reduced as patients with CL/P grow up, we should still remind parents and provide parents with relevant professional services to promote the healthy growth of patients' psychology and society. ...
Article
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Background: Resilience has become a hot spot in the field of positive psychology to study life-change events. However, there were little information on resilience among the fathers and mothers of patients with cleft lip and/or palate respectively. The present study aimed to explore and compare the level and potential influential factors associated with resilience among fathers/mothers of patients with cleft lip and/or palate in China. Method: A cross-sectional study was carried out between April 2019 and July 2020 among fathers/mothers of patients with cleft lip and/or palate in two cleft lip and/or palate treatment centers in China. Sixty Nine fathers and 179 mothers of patients with cleft lip and/or palate were interviewed with a questionnaire on demographic variables and the Resilience Scale-14 (RS-14), Herth Hope Index (HHI), Multidimensional Scale of Perceived Social Support (MSPSS), Revised Life Orientation Test (LOT-R), Parenting Stress Index-Short Form (PSI-SF) and Coping Health Inventory for Parents (CHIP). T -test/univariate one-way ANOVA, Pearson's r, hierarchical linear regression analysis were conducted to explore the influential factors of resilience. Results: Fathers of patients with cleft lip and/or palate had a higher level of resilience (77.77 ± 14.18) than mothers (74.52 ± 14.33) though without significance. Resilience was positively associated with hope, perceived social support, optimism and coping and negatively correlated with parenting stress both in the fathers and the mothers. Hierarchical linear regression analysis showed that hope (β = 0.400, P < 0.01), coping (β = 0.281, P < 0.05), job status, medical payments (β = −0.240, P < 0.05) were found to be associated with resilience among the fathers of patients with CL/P, and all four variables in the model could explain 42.8% of the variance in resilience; Hope (β = 0.225, P < 0.05), perceived social support (β = 0.194, P < 0.05), the age of patients (β = 0.189, P < 0.05) were found to be associated with resilience among the mothers, and all three variables in the model could explain 27.6% of the variance in resilience. Conclusion: Our study showed that, in China, fathers of patients with cleft lip and/or palate had a higher level of resilience than mothers though without significance. Hope was the only communal variable strongly associated with resilience among both the fathers and the mothers; besides, coping, job status and medical payments were found to be associated with resilience among the fathers; while perceived social support and the age of patients were found to be associated with resilience among the mothers. The results suggest that enhance hope in parents of patients with cleft lip and/or palate might greatly help improve their resilience. Besides, fathers and mothers need specific intervention to prompt their resilience.
... 17 En un estudio realizado por Brent R y cols, mencionan que los pacientes con labio y paladar fisurado desarrollan autopercepciones negativas, incluyendo la apariencia, comunicación e interacción con terceros, sin embargo, todo nuestro grupo encuestado manifiestan tener una buena autopercepción. 18 ...
Article
Full-text available
Objetivo: conocer la autopercepción de los niños con Labio y Paladar Fisurado de la Clínica Multidisciplinaria de la Universidad Católica de Cuenca. Materiales y métodos: La presente investigación es un estudio descriptivo- transversal. La muestra consistió en 78 pacientes que fueron atendidos en la Clínica Multidisciplinaria de Labio y Paladar Fisurado de la Universidad Católica de Cuenca de ambos sexos. Para la toma de datos se utilizó una encuesta, contando con consentimiento y asentimiento informados. Información que será organizada, analizada y tabulada en una base de datos en Excel Microsoft Office. Resultados: Respecto a la autopercepción de los pacientes con labio y paladar fisurado un 71.8% afirma sentirse conforme con su imagen, sin embargo, a un 80.8% le gustaría cambiar su apariencia de ser posible. En general se recibieron respuestas positivas en este estudio realizado. Conclusión: Un abordaje multidisciplinario para los pacientes con labio y paladar fisurado, ayuda a mejorar la calidad de vida y mejora la autopercepción de cada uno de ellos.
... According to Tollefson and Sykes, unilateral clefts were associated with underlying brain deformity [23]. Collet and Speltz also found that children with unilateral clefts lag behind in development [24]. In the present study, developmental delay was more common in isolated cleft palate than isolated cleft lip. ...
... The impact of the birth of a disabled child on the family has been extensively studied, and has largely focused on the psychological adaptation of the parents (Brent and Matthew 2006;Dolger-Hafner et al. 1997;Gras and Hernández 2004;Pelchat et al. 2004;Strauss 2011;Snyder et al. 2004;Sola-Carmona et al 2016a;Turner et al. 1998;Weigl et al. 2005). ...
Article
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Objectives Children suffering from disabilities require special care that may influence their family environment and result in parental stress. The objective of this study was to assess the effectiveness of a stress-management program for parents with disabled children. Methods The experimental procedure included a pre-test, post-test and 6-month follow-up evaluation of the stress levels, and adaptation and parental coping strategies. Seven 90-min long group sessions were held once a week in the experimental group and their satisfaction with the program was assessed. The principal aspects of the program were stress and coping strategies conceptualization, relaxation training, control of breathing, cognitive restructuring of a sense of guilt, training on coping skills, problem-solving, rewarding activities, improving self-esteem, assertive communication, the importance of humor and optimism, and value of social support. Results Significant differences were seen between the pre- and post-test scores of the majority of the evaluated variables, except for the use of avoidance strategies, in the experimental group. In addition, compared to the control group, the experimental group showed significant improvements in various indices after the intervention. Conclusion The development of a stress management training program is more effective than no treatment for parents of disabled children. Family intervention programs can improve parental response to stress factors.
... Some, but not all clinical psychologists in the current study reported using formal developmental assessments and only a minority of clinical psychologists reported screening for developmental concerns routinely. Several measures have been used with the craniofacial population to assess developmental concerns in infants and toddlers (Collett & Speltz, 2006). Consensus between clinical psychologists and nurse specialists is needed to implement brief, yet sensitive screening tools which complement the national screening program carried out by UK Health Visitors to support the early identification of developmental concerns and to offer support for this potentially vulnerable subgroup. ...
Article
Full-text available
Objectives: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to identify common psychosocial challenges and potential risk and/or protective factors for psychosocial distress from the perspective of specialist clinicians and to establish the types of interventions currently being delivered in practice. Design: Individual interviews with 17 clinical nurse specialists and 19 specialist clinical psychologists, representing all 16 UK CL/P surgical sites. Data were analyzed using inductive content analysis. Results: Numerous psychosocial challenges affecting individuals with CL/P and their families were identified across the life span. Risk factors were predominantly contextual in nature, while protective factors appeared amenable to intervention. Participants drew upon a range of therapeutic models and approaches to guide formulation and intervention, while acknowledging the lack of evidence to support these approaches in CL/P populations specifically. Conclusions: Findings have important implications for the way in which psychosocial support for CL/P and related conditions is delivered and evaluated. A framework for the standardized assessment of holistic individual and familial well-being is proposed. Suggestions for increasing the evidence base for specific psychosocial interventions are made, including enhanced family functioning; social, emotional, and appearance concerns; treatment decision-making; and screening for psychosocial and developmental issues.
... Although we did not ask about the nature and availability of family support, the findings suggest that the responsibilities for care provision of these CL/P children fall disproportionately on these women. Studies in the United States and the United Kingdom reported that the long term implications of parenting children with clefts include higher stress levels, anxiety and depression, a risk of maternal detachment, and lower cognitive functioning of the children [15,47,48]. Hence, the single mothers may require additional health and social service support. ...
Article
Full-text available
Background: Clefting of the lip and/or palate (CL/P) is amongst the five most common birth defects reported in South Africa. The emotional impact on parents at the birth of their new-born with CL/P could affect parent-child relationships. In light of insufficient scholarly attention parental experiences and perceptions, this study reports on caregivers' perceptions of health service provision and support for children born with cleft lip and palate in South Africa. Methods: The study setting consisted of 11 academic hospital centres situated in six of South Africa's nine provinces. At each of the academic centres cleft clinic, five to ten parents or caregivers were selected purposively. Participants were interviewed, using a semi-structured interview schedule that elicited socio-demographic information, explored the family experiences of having a child with CL/P, and their perceptions of care provision and support services available. The interviews were analysed using thematic content analysis. Results: Seventy-nine participants were interviewed. Their mean age was 33.3 years (range 17-68 years). The majority of the parents were black African (72%), unemployed (72%), single (67%) and with only primary school education (58%). The majority of the children were male, with a mean age of 3.8 (SD = ±4.3) years. Five broad themes emerged from the interviews: emotional experiences following the birth of a child with cleft lip and palate; reactions from family, friends or the public; the burden of care provision; health system responsiveness; and social support services. Caregivers reported feelings of shock, anxiety, and sadness, exacerbated by the burden of care provision, health system deficiencies, lack of public awareness and insufficient social support services. Conclusions: The findings have implications for the integrated management of children with cleft lip and/or palate, including information to parents, the education and training of healthcare providers, raising public awareness of birth defects, and social support.
... 18 On the other hand, it is reported that children with clefts were more shy and socially inhibited compared to noncleft children. 19,20 Then, type-D personality may have increased among these patients because of experiencing such negative emotions. ...
Article
The purpose of this study was to investigate the oral health-related quality of life and type-D personality in cleft lip/palate (CLP) patients and the relationship between type-D personality and oral health-related quality of life (OHRQoL) in CLP patients. Fifty patients with CLP within age range from 8 to 15 years were chosen and asked to complete both Child Oral Health Impact Profile (COHI) and Type-D scale (DS14) questionnaire. Moreover, the participants of a control group matched with CLP patients were asked to complete the DS14 questionnaire. A significant difference between boys and girls on the subscale "emotional well-being" of COHIP (P = 0.001) and a positive significant correlation between "oral symptoms" and age (P = 0.029) were found among CLP patients. The prevalence of type-D personality was equal between clefts and nonclefts groups. However, there was a significant relationship between type-D personality and OHRQoL in CLP patients regarding mean scores of overall COHIP and its subscales (P < 0.05). This study has shown that the personality type remains unchanged among cleft patients and a meaningful relationship exists between type-D personality and OHRQoL.
... The birth of a child with a disability creates a huge impact on the family, as revealed by numerous studies, the majority of which have focused on the psychological adaptation of the parents (Dolger-Hafner, Bartsch, Trimbach, Zobel & Witt, 1997;Turner, Rumsey & Sandy, 1998;Strauss, 2001;Pelchat, Lefebvre, Proulx & Reidy, 2004;Synder, Bilboul, & Pope, 2004;Weigl, Rudolph, Eysholdt & Rosanowski, 2005;Brent & Matthew, 2006;Limiñana, Corbalán & Patró, 2007). ...
Article
Full-text available
The birth of a child having a disability requires a period of adaptation for the family. When parents are maladjusted, their mental health will be negatively affected, interfering with their day to day lives. This document attempts to determine the degree of maladjustment in 36 parents (23 mothers and 13 fathers) of children with distinct disabilities as well as its relationship with certain sociodemographic variables. Results reveal values for these families that are above the cut-off point for a scale (> 12) of a series of variables affecting adaptation to their child's specific case.
... Several studies report no major psychosocial problems in cleft lip and palate patients above that of the noncleft population (Hunt et al., 2005;Collett and Speltz, 2006;Berger and Dalton, 2009;Feragen and Borge, 2010;Pisula et al., 2014). However, two systematic reviews report that patients with cleft lip and palate are at higher risk for behavioral problems, dissatisfaction with facial appearance, and impairment of certain aspects (marriage and friendships) of social functioning (Hunt et al., 2005;Queiroz Herkrath et al., 2015). ...
Article
Full-text available
Objective: The development of the Cleft Aesthetic Rating Scale, a simple and reliable photographic reference scale for the assessment of nasolabial appearance in complete unilateral cleft lip and palate patients. Design: A blind retrospective analysis of photographs of cleft lip and palate patients was performed with this new rating scale. Setting: VU Medical Center Amsterdam and the Academic Center for Dentistry of Amsterdam. Patients: Complete unilateral cleft lip and palate patients at the age of 6 years. Main outcome measures: Photographs that showed the highest interobserver agreement in earlier assessments were selected for the photographic reference scale. Rules were attached to the rating scale to provide a guideline for the assessment and improve interobserver reliability. Cropped photographs revealing only the nasolabial area were assessed by six observers using this new Cleft Aesthetic Rating Scale in two different sessions. Results: Photographs of 62 children (6 years of age, 44 boys and 18 girls) were assessed. The interobserver reliability for the nose and lip together was 0.62, obtained with the intraclass correlation coefficient. To measure the internal consistency, a Cronbach alpha of .91 was calculated. The estimated reliability for three observers was .84, obtained with the Spearman Brown formula. Conclusion: A new, easy to use, and reliable scoring system with a photographic reference scale is presented in this study.
... El impacto que el nacimiento de un hijo con una malformación crónica como la fisura palatina tiene en la familia ha sido ampliamente estudiado, en principio desde un punto de vista pediátrico, y más tarde abarcando aspectos psicosociales más complejos relacionados con la adaptación psicológica de la familia (Dolger-Hafner, Bartsch, Trimbach, Zobel, Witt, 1997;Turner, Rumsey, Sandy, 1998;Strauss, 2001;Pelchat, Lefebvre, Proulx y Reidy, 2004;Synder, Bilboul, y Pope, 2004;Weigl, Rudolph, Eysholdt, Rosanowski, 2005;Brent y Matthew, 2006). Los padres sienten cómo las ilusiones y expectativas más inmediatas sobre su bebé son bruscamente sustituidas por las demandas de ese diagnóstico y las necesidades inmediatas de estos niños, comenzando un largo camino, que a veces se prolongará hasta la adultez, en el que tanto sus vidas, como las de toda la familia, tendrán como propósito prioritario la restauración de los déficit físicos, a través de la cirugía y la rehabilitación de las alteraciones asociadas. ...
Article
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The unexpected birth of a son with a chronic malformation such as cleft and lip palate has an enormous impact on family dynamics and the psychological organization of the parents. This study tries to give account of some of these aspects in :1 sample of 36 parents of children with a diagnosis of cleft lip and palate. Coping strategies in these parents and their personality styles, allow us to describe stable ways of response on individuals that can be excellent indicators of the way in which parents confront this new reality, as well as of its effects on the medium and long terms.
... En este tipo de paciente existe un riesgo elevado de padecer problemas de comportamiento, autoestima baja y dificultades en la relación con sus padres. 11 aparición de esta malformación congénita, por lo que nos proponemos como objetivo identificar los antecedentes de consumo de medicamentos durante el embarazo en las madres de pacientes con fisura de labio y/o paladar. ...
Article
Full-text available
Congenital malformations are defined as genetically determined structural defects present in the child at birth. Thousand congenital defects have been identified. Lippalate fissures are congenital structural deficiencies due to a faulty fusion of some developing embryonal facial process. This defect is usually found in live-born children. In present study we intended to identify behavior of lip, palate fissures, or both in sick mother during pregnancy. Thus, we analyzed all the live-born children diagnosed with lip, palate fissure, or both during 2000-2006 years in Havana City province, with a study sample of 112 patients. Form was designed to get the information related to diseases present in the patient's mothers during pregnancy. Most of mothers whose children had fissures had diseases during pregnancy. The trimester of great affection was the third one, and the most frequent disease was the high blood pressure.
... Este colapso de arco es mayor en la zona de los caninos y disminuye progresivamente hacia la región molar, y es causado por una rotación medial del segmento del lado afectado, la falta de continuidad en el reborde alveolar y por la ausencia de la sutura media palatina. En este tipo de paciente existe un riesgo elevado de padecer problemas de comportamiento, autoestima baja y dificultades en la relación con sus padres.10 ...
Article
Full-text available
Congenital defects are anomalies in structure, functioning or metabolism of organism and its causes may be of genetic or environmental causes. Lip and palate fissure is an isolated congenital defect whose etiology is of multifactorial character. Aim of present study is to identify behavior of lip and/or palate fissures in mothers took drugs during pregnancy, thus analyzing all children live birth with a diagnosis of lip and/or palate during 2000 and 2006 in Havana City, from where it was possible to obtain a study universe of 112 patients. We applied a form to obtain information related to drugs by mothers of patients during pregnancy. Results show that 58, 92 % of mother took drugs, and that trimester of higher consumption was the third one, with 50,89 % of total of study mothers. More use drugs were vitamins and antianemic.
... Most infants with clefts, particularly those with bilateral CLP, have severe visible cosmetic defect. Immediately after birth, parents are concerned about the origins or reasons for their child's defect, how to take care of their child at home, and also report embarrassment upon introducing their child to others (Collett & Speltz, 2006). This had led to speculations of insecure mother-infant attachment (Maris, Endriga, Speltz, Jones, & DeKlyen, 2000). ...
... Literature exploring the psychosocial adjustment of those affected by CL±P has produced conflicting findings. While some studies suggested that individuals with a CL±P are more at risk of developing difficulties than their peers (Noar, 1991;1992;Turner et al., 1997), others have found no differences between this group and the general population (Hunt et al., 2005;Collett and Speltz, 2006;Berger and Dalton, 2009). While these contrasting findings may be partly attributable to the multifactorial nature of psychosocial adjustment, a lack of consensus and comparability in relation to the methodology employed is also likely to play a role (Rumsey and Stock, 2013). ...
Article
Objective: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. Design: We searched six databases including MEDLINE and EMBASE to June 2013 and checked bibliographies. We included research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. Results: Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. Conclusions: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.
... Este colapso de arco es mayor en la zona de los caninos y disminuye progresivamente hacia la región molar, y es causado por una rotación medial del segmento del lado afectado, la falta de continuidad en el reborde alveolar y por la ausencia de la sutura media palatina. En este tipo de paciente existe un riesgo elevado de padecer problemas de comportamiento, autoestima baja y dificultades en la relación con sus padres.10 ...
Article
Full-text available
Congenital defects are anomalies in structure, functioning or metabolism of organism and its causes may be of genetic or environmental causes. Lip and palate fissure is an isolated congenital defect whose etiology is of multifactorial character. Aim of present study is to identify behavior of lip and/or palate fissures in mothers took drugs during pregnancy, thus analyzing all children live birth with a diagnosis of lip and/or palate during 2000 and 2006 in Havana City, from where it was possible to obtain a study universe of 112 patients. We applied a form to obtain information related to drugs by mothers of patients during pregnancy. Results show that 58, 92 % of mother took drugs, and that trimester of higher consumption was the third one, with 50,89 % of total of study mothers. More use drugs were vitamins and antianemic.
... En este tipo de paciente existe un riesgo elevado de padecer problemas de comportamiento, autoestima baja y dificultades en la relación con sus padres. 11 aparición de esta malformación congénita, por lo que nos proponemos como objetivo identificar los antecedentes de consumo de medicamentos durante el embarazo en las madres de pacientes con fisura de labio y/o paladar. ...
Article
Full-text available
Congenital malformations are defined as genetically determined structural defects present in the child at birth. Thousand congenital defects have been identified. Lip-palate fissures are congenital structural deficiencies due to a faulty fusion of some developing embryonal facial process. This defect is usually found in live-born children. In present study we intended to identify behavior of lip, palate fissures, or both in sick mother during pregnancy. Thus, we analyzed all the live-born children diagnosed with lip, palate fissure, or both during 2000-2006 years in Havana City province, with a study sample of 112 patients. Form was designed to get the information related to diseases present in the patient's mothers during pregnancy. Most of mothers whose children had fissures had diseases during pregnancy. The trimester of great affection was the third one, and the most frequent disease was the high blood pressure.
... Literature exploring the psychosocial adjustment of those affected by CL/P has produced conflicting findings. Whereas some studies suggested that individuals with CL/P are more at risk of developing difficulties than their peers are (Noar, 1991(Noar, , 1992Turner et al., 1997), others have found no differences between this group and the general population (Hunt et al., 2005;Collett and Speltz, 2006;Berger and Dalton, 2009). Although these contrasting findings may be partly attributable to the multifactorial nature of psychosocial adjustment, a lack of consensus and comparability in relation to the methodology used is also likely to play a role (Rumsey and Stock, 2013). ...
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Objective: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. Design: We searched six databases including MEDLINE and EMBASE to June 2013, and checked bibliographies. We included studies that evaluated any psychological intervention in studies that included at least 10% participants with cleft lip and/or palate or parents of those with cleft lip and/or palate. Studies in which <90% of participants (or parents of those) with cleft lip and or palate were excluded. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. Results: Seven studies were identified as inclusions, with only two studies being included in the full data analysis. The five remaining studies were included only in a narrative synthesis as data was available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. Conclusions: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomised controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents. Key words: psychological intervention, cleft palate, systematic review
... Initially, parents are likely to feel shocked and daunted by the potential challenges that lie ahead, and throughout their child's development the burden of care can be considerable. Longer-term implications may include elevated levels of parental stress, anxiety and depression, a risk of maternal detachment, lower cognitive functioning in the child, and family discord (Drotar, 1997;Cohen, 1999;Collett and Speltz, 2006). The risk of such outcomes may be exacerbated if appropriate support is not readily accessible throughout the family's journey (Baker et al., 2009;Knapke et al., 2010;Vanz and Ribeiro, 2011;Nelson et al., 2012). ...
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Background: One of the key challenges facing young adults with CL/P is decision-making around starting a family, due to the increased likelihood of their own child being diagnosed with CL/P. 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 non-specialist Health Professionals, cleft teams and genetic counsellors. 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 which had helped or hindered their adjustment. Parents also described ways in which their own experiences had impacted on 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 CL/P may impact on 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. Keywords: cleft, adult, parent, genetics, psychological adjustment, qualitative
... As a result, those with diverse ethnic backgrounds, those reporting a different marital status or less traditional family structure, and those living in lower socioeconomic conditions were not represented in this research. Given that each of these factors have been implicated in psychosocial adjustment to CL/P (Collett and Speltz, 2006;Black et al., 2009;Waylen and Stewart-Brown, 2009;Persson, 2012), it is important that future research aims to capture a fuller range of experiences. It is interesting that one study identified a similar self-selection bias among fathers, namely that those fathers with less education, less traditional family structures, and less optimal environments were less likely to participate in family research (Costigan and Cox, 2001). ...
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Objective: To explore the impact of having a child born with a cleft lip and/or palate from the father's perspective. Design: Individual qualitative telephone interviews. Participants: A total of 15 fathers of children born with cleft lip and/or palate were recruited throughout the U.K. via advertisements. Results: Supported by a number of subthemes, four overarching themes were identified: variations in care and support; appraisals of the cleft; perceptions of treatment; and looking back and moving forward. Conclusions: Fathers reported experiences comparable to those previously reported by mothers, in addition to a number of further support and information needs. Participants played a key role in supporting their families through the treatment process, yet fathers are underrepresented in the research literature. Recommendations are made for the adequate inclusion of fathers in future research and in relation to methods of support for fathers through their children's diagnosis and treatment. (E-pub December 2013)
... The prevalence of non-syndromic or facial clefts (CLP) in Thai children is 2.5 per 1,000. The anomaly occurs during the first trimester of pregnancy (1) and affects babies in many developmental dimensions including facial appearance, self-esteem, speech fluency, conductive hearing loss (from recurrent middle ear infection), dentition and delayed development (2) including physical, social adaptation and socioemotional problems (3,4) . Mothers of these children experience anxiety and loss of confidence to properly care for their children (5) . ...
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To measure the development outcomes among Thai children with non-syndromic cleft lip and/or palate (CLP) treated at the Tawanchai Center 5 years after birth. Using a developmental screening test, Thai children with CLP were followed-up at the center. Nearly two-thirds (62.5%) of 24 Thai children with CLP had delayed development. Eight of the children had more than one delayed category and 13 both "delayed" and "caution". Delayed language, personal, social and fine motor skills occurred in 54.2%, 20.8% (5/24) and 20.8% (5/24) of cases, respectively. An understanding of the incidence of the different types of delays will help our center to improve our treatment standards and place more emphasis on psychosocial and development outcomes.
... Este colapso de arco es mayor en la zona de los caninos y disminuye progresivamente hacia la región molar, y es causado por una rotación medial del segmento del lado afectado, la falta de continuidad en el reborde alveolar y por la ausencia de la sutura media palatina. En este tipo de paciente existe un riesgo elevado de padecer problemas de comportamiento, autoestima baja y dificultades en la relación con sus padres.10 ...
... ), which may undermine adaptation. However, difficulties are not universal (Collett and Speltz, 2006) and some parents report positive outcomes from having a child with CL/P, including personal growth and increased sensitivity (Eiserman, 2001; Baker et al., 2009). Nevertheless, the limited literature pertaining to this area appears to suggest that ''healthy'' parental adaptation (typically evidenced by lower levels of maternal depression, stress/anxiety) in relation to their child's condition is an important protective factor for the child's psychosocial adjustment (e.g., Krueckeberg and Kapp-Simon, 1993; Campis et al., 1995; Endriga et al., 2003; Pope et al., 2005). ...
Article
Objective: To investigate the impact of parental diagnosis of cleft lip and/or palate on factors associated with parental adaptation to having a child with a cleft. Design: A mixed-methodological, quasi-experimental, causal-comparative research design. Participants: A total of 27 parents born with a cleft lip and/or palate and 27 parents born without a cleft lip and/or palate completed the study measures. Outcome measures: The Ways of Coping Questionnaire, the Connor-Davidson Resilience Scale, the Interpersonal Support Evaluation List, and the Posttraumatic Growth Inventory were included along with a researcher-designed, cleft-specific questionnaire. Results: The cleft-specific questionnaire revealed that parents born with a cleft lip and/or palate reported feelings of guilt significantly more often than did parents without a cleft lip and/or palate. Parents without a cleft reported feeling anxious significantly more often than did parents born with a cleft lip and/or palate. The qualitative aspect of the study yielded further between-group differences. The feeling that their own cleft-related experiences influenced their adjustment to having a child with a cleft emerged as a dominant theme for parents born with a cleft; whereas, parents without a cleft lip and/or palate highlighted the importance of accurate information and positive interactions with clinicians in facilitating adjustment to their situation. No significant between-group differences were found on the standardized measures; however, the study's small sample size increases the risk of type II error and may account for the lack of significant findings. Conclusions: These findings appear to provide support for the widely held clinical opinion that parental diagnosis of cleft lip and/or palate impacts how parents cope with and adjust to their child's diagnosis.
... In contrast, some question remains as to whether early knowledge of a cleft pregnancy may generate greater maternal anxiety during a presumably joyful period (Matthews et al., 1998; Klein et al., 2006), whether prenatal information is of any value because the problem cannot be corrected prenatally (Matthews et al., 1998), and whether prenatal diagnosis might encourage termination of the pregnancy in the absence of other malformations (Klein et al., 2006). No population-based studies have compared these more detailed preparations and outcomes among mothers forewarned of the cleft birth to preparations and outcomes among mothers who learn of the cleft at delivery (Collett and Speltz, 2006). This research has identified few advantages to early prenatal diagnosis of orofacial clefts. ...
Article
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Objective: Prenatal diagnosis of an orofacial cleft is thought to allow mothers greater opportunity to become prepared for the special needs of an infant with a cleft and plan for the care of their child. Using a population-based sample, we determined which children were more likely to be diagnosed prenatally, and whether early diagnosis was associated with maternal satisfaction and treatment outcomes. Design: Interviews were completed with 235 (49% of eligible) mothers of children ages 2 to 7 with orofacial clefts initially enrolled in the National Birth Defects Prevention Study from the Arkansas, Iowa, and New York sites. Maternal satisfaction with information, support, and treatment outcomes was compared between women who received a prenatal diagnosis and those who did not. Results: Of 235 infants with clefts, 46 (19.6%) were identified prenatally. One third of mothers were somewhat or not satisfied with information provided by medical staff. Satisfaction did not vary by timing of the diagnosis. Infants diagnosed prenatally were no more likely to have received care provided by a recognized multidisciplinary cleft team (76%) than were infants diagnosed at birth (78%). Speech problems and facial appearance as rated by the mother did not vary by timing of the diagnosis. Conclusions: Timing of the cleft diagnosis did not alter maternal satisfaction with information, whether care was provided by a designated cleft team, or maternal perception of facial appearance or speech. Further research should determine whether prenatal diagnoses alter maternal anxiety or influence postnatal morbidity.
... (Young et al., 2001). From a cultural perspective, we did find that parents have a superstition problem in Taiwan; there is support for this in the literature (Collett and Speltz, 2006;Olasoji et al., 2007). One of the items in the SSPCC, S29, which emerged from phase 1, is ''the cause of the condition is misunderstood as a result of superstitions,'' and in response to this, one of the participants mentioned that ''someone said that if you have done something wicked in your previous life or invaded the God of fetus during pregnancy, and you will give birth to a child with CL/P.'' ...
Article
Objective: To develop the Stress Scale for Parents With Cleft Lip and/or Palate Children in Taiwan and to evaluate the psychometric properties of the scale with a group of parents who have children with cleft lip and/or palate. Design: In phase 1, qualitative procedures were conducted in constructing the item pool for the Stress Scale for Parents With Cleft Lip and/or Palate Children. Psychometric properties of the scale were assessed in phase 2. Setting: Outpatient department of a children's hospital in northern Taiwan. Participants: Phase 1 included 21 parents of children with cleft lip and/or palate. Phase 2 included 184 parents of children with cleft lip and/or palate. Interventions: The item pool was developed by interview, content analysis, and literature review. Problematic items were identified by item analysis. Main outcome measures: Exploratory factor analysis was used to examine the construct validity. Reliabilities were evaluated by Cronbach alpha and intraclass correlation coefficients. Results: Thirty-three items with a content validity index greater than .80 were recognized. They were grouped into four categories by exploratory factor analysis and accounted for 42.34% of the total variance. Internal consistency reliability was high for the total scale (Cronbach α = .90) and ranged from .71 to .84 on the subscales. Test-retest reliability with intraclass correlation coefficient was .94 on the total scale (p < .0001, 95% confidence interval) and from .90 to .96 for the subscales. Conclusions: The Stress Scale for Parents With Cleft Lip and/or Palate Children appears to be a reliable tool with strong evidence of content and construct validity that may be useful in assessing parental stress in the caretakers of children with cleft lip and/or palate.
... En Europa las asociaciones encargadas de promover la investigación y el desarrollo de tratamientos son EUROCRAN y EURO- CLEFT; en España se creó la Sociedad Española de Fisuras Faciales que, junto a las diversas asociaciones de padres que han ido organizándose en las distintas comunidades autónomas , pretenden mejorar la atención a las familias y la operatividad de los equipos. El impacto que el nacimiento de un hijo con una malformación crónica como la fisura palatina tiene en la familia ha sido ampliamente estudiado, en principio desde un punto de vista pediátrico, y más tarde abarcando aspectos psicosociales más complejos relacionados con la adaptación psicológica de la familia (Dolger-Hafner, Bartsch, Trimbach, Zobel , Witt, 1997; Turner, Rumsey, Sandy, 1998; Strauss, 2001; Pelchat, Lefebvre, Proulx y Reidy, 2004; Synder, Bilboul, y Pope, 2004; Weigl, Rudolph, Eysholdt, Rosanowski, 2005; Brent y Matthew, 2006). Los padres sienten cómo las ilusiones y expectativas más inmediatas sobre su bebé son bruscamente sustituidas por las demandas de ese diagnóstico y las necesidades inmediatas de estos niños, comenzando un largo camino, que a veces se prolongará hasta la adultez, en el que tanto sus vidas, como las de toda la familia, tendrán como propósito prioritario la restauración de los déficit físicos , a través de la cirugía y la rehabilitación de las alteraciones asociadas. ...
Article
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The unexpected birth of a son with a chronic malformation such as cleft and lip palate has an enormous impact on family dynamics and the psychological organization of the parents. This study tries to give account of some of these aspects in a sample of 36 parents of children with a diagnosis of cleft lip and palate. Coping strategies in these parents and their personality styles, allow us to describe stable ways of response on individuals that can be excellent indicators of the way in which parents confront this new reality, as well as of its effects on the medium and long terms. El inesperado nacimiento de un hijo con una malformación crónica como la fisura palatina tiene un enorme impacto en la dinámica familiar y en la organización psicológica de los padres. Este estudio pretende dar cuenta de algunos de estos aspectos en una muestra de 36 padres y madres de un niño con un diagnóstico de fisura labio velo palatina. Las estrategias de afrontamiento en estos padres y sus estilos de personalidad, permiten describir modos de respuesta estables de los sujetos, que pueden resultar excelentes indicadores del modo en que los padres afrontan esta nueva realidad, y de sus efectos a medio y largo plazo.
Article
OBJECTIVE Outcomes research on unilateral coronal synostosis is mostly limited to the early postoperative period. This study examines facial asymmetry, desire for revision, and patient-reported outcomes at school age in children who received either endoscopic strip craniectomy with helmet therapy or fronto-orbital advancement (open repair). METHODS Patients with repaired unilateral coronal synostosis born between 2000 and 2017, with 3D photographs taken when they were between 3.5 and 8 years of age, were eligible for study inclusion. Three pairs of bilateral linear measurements and two angular measurements were taken. Parent- and physician-reported desire for revision and patient-reported outcomes (Patient-Reported Outcomes Measurement Information System cognitive function and Quality of Life in Neurological Disorders stigma scores) were collected from patient charts. RESULTS Thirty-five patients qualified, including 25 with open repair and 10 with endoscopic repair. The median patient ages at repair were 3 months and 8 months in the endoscopic and open groups, respectively. The average ages at final 3D photography were 5.8 years and 5.5 years in the endoscopic and open groups, respectively. Digital anthropometry revealed no significant differences in measures of facial asymmetry between the repair groups (p ≥ 0.211). Midface depth (tragion to subnasale) was significantly less symmetric at school age than other linear measures (F(2,102) = 9.14, p < 0.001). Forehead asymmetry was significantly associated with parent- and physician-reported desire for revision (p ≤ 0.006). No significant associations were found between physical asymmetry and patient-reported stigma or cognitive function (p > 0.046, Holm-Bonferroni correction). CONCLUSIONS Children who underwent open or endoscopic repair for unilateral coronal synostosis have comparable facial symmetry at school age, but midface depth remains highly asymmetrical in both groups. Forehead asymmetry at school age correlates with parent- and physician-reported desire for revision.
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Genetic services for individuals affected by cleft lip and/or palate (CL/P) and their families are an important aspect of clinical care; yet debate exists as to how this service should be offered. This study explored the utility, acceptability, and delivery of genetic services from the perspectives of cleft-specialist clinicians, genetic counsellors, and affected families. Analysis of data collected from three focus groups and eleven individual interviews identified two overarching themes: “Referring patients and families to genetic services”, and “The role of a genetic specialist in the context of CL/P”. The first examines common reasons for referral to the genetics service, how best to judge the timing of a referral, and the optimal approach to the delivery of sensitive genetic information. The second theme discusses the role of the genetic specialist in the context of cleft care, including the optimal management of affected individuals and their families, and the delivery of basic genetics training and support for health professionals working in other disciplines. A model for the effective delivery of genetic services in CL/P is subsequently proposed. Coordination and financial implications of the proposed model ultimately require further consideration and evaluation to determine its effectiveness. Key words: cleft lip and palate; genetics; genetic counselling; aetiology; recurrence; model; mainstreaming
Introduction Children born with cleft lip and palate (CLP) are exposed to several risk factors for developmental delay. Methods This cross-sectional and descriptive study compared the performance of gross motor, adaptive fine motor, social-personal and language skills in children with non-syndromic cleft lip and palate (age = 36–47 months, n = 30) matched as to chronological age and gender. The evaluation instruments were Denver Developmental Screening Test II and MacArthur Communicative Development Inventory – part D, employed for the receptive and expressive vocabulary checklist. Intergroup comparisons were performed using t tests and Chi-square tests. The Pearson correlation coefficient was used to verify the inter-category correlation (p ≤ 0.05). Results There was statistically significant difference in gross motor, adaptive fine motor, and language skills, both in receptive and expressive aspects, in the comparison between groups. In the personal-social area, children with CLP presented performance below the expected, without statistically significant difference between groups. Conclusions Children with CLP are at risk for developmental disorders and should be monitored from early childhood to minimize the deleterious effects of this risk condition.
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Parenting is a complex behavior that involves making a significant investment in 1 or more children. Evolutionary theory predicts that this investment should be a facultative decision based on a cost-benefit analysis. One important source of information for parents regarding this decision may be cues that come directly from the child, such as resemblance to parent, health, age, sex (gender), happiness, and cuteness. Therefore, we review a vibrant, growing body of literature on the evolutionary importance of infant and child facial cues on adults’ perceptions and behaviors related to parental care. While this literature has already generated some review articles, it lacks a comprehensive review of the methods, effect sizes, and theoretical underpinnings of the research. Our review, therefore, focuses on examining the strengths and weaknesses in the methods used to study infant and child facial cues, providing estimated effect sizes associated with these data, and offering new theoretical and practical implications for multiple infant and child facial cues. Overall, our review suggests that infant and child facial cues are potentially important, but underappreciated, factors that can influence evolved parenting behaviors and parent– child interactions.
Chapter
Developmental psychopathology can be defined in a variety of ways, all having to do with development on the one hand and the resulting set of maladaptive behaviors on the other. We, too, define developmental psychopathology as focusing on and integrating these two traditional areas; however, a third feature needs to be added, namely, maladaptive processes as well as behaviors. Thus, developmental psychopathology is the study of the development of maladaptive behaviors (Sroufe & Rutter, 1984) and also the study of maladaptive processes themselves. Underlying the study of developmental psychopathology is the principle of predictability. Because of the research of Kohlberg, LaCrosse, and Ricks (1972), the prediction of maladaptive behavior has been viewed not only as possible but as an important feature in the study of developmental psychopathology.
Article
Purpose Attention-deficit hyperactivity disorder (ADHD) is a common childhood neurobehavioral disorder characterized by inattention, poor impulse control, and motor restlessness. Risk factors include familial stressors, anxiety disorders, learning disabilities, abnormal brain development, heritability, and dopamine polymorphisms. Children with an orofacial clefting (OFC) history are at increased risk of familial stressors, anxiety disorders, learning disabilities, and abnormal brain development. Given this overlap, we present a conceptual model proposing that children with OFC may be more likely to exhibit ADHD symptoms than children without and explore this relationship using pilot data. Design This cross-sectional pilot study included 29 children with OFC or a first-degree relative with OFC recruited through a cleft research registry. Methods The Disruptive Behavior Disorder Scale was used to collect data on children’s ADHD symptoms. Saliva or whole blood samples were collected from children and parents for DNA analyses. ADHD-associated dopamine polymorphisms within the DRD4, DRD2, and DAT1 genes were genotyped. We tested for associations between presence of OFC and dopamine polymorphisms. Mixed-effects models tested whether children with OFC and dopamine polymorphisms had more ADHD symptoms. Results The DRD4 4-repeat allele was associated with increased inattentive ADHD symptoms ( p = .03). Having the DRD2 Taq1A1 allele and OFC predicted fewer ( p = .02) inattentive ADHD symptoms. Children with OFC were significantly less likely to have the DAT1 10-repeat allele ( p = .04). Conclusions: Results indicate that further investigation among a larger sample of children with OFC is warranted, particularly for relationships with inattentive ADHD.
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A cleft of the lip and/or the palate and its treatment can pose challenges in many domains of life, including several areas of psychological and social functioning. To date, research exploring the psychosocial ramifications of clefting has produced complex and contrasting results. A recent literature review by Stock and Rumsey (2011) highlighted some emerging areas of consensus, alongside a number of methodological challenges for researchers in the field. Using a lifespan perspective, this chapter summarises current knowledge and outlines the potential of these findings to inform appropriate psychosocial support and interventions for patients with cleft and their families.
Article
Objective To determine the age-specific communication functioning of children with cleft lip and palate (CLP) in the age groups of 1 to 11 months, 12 to 23 months, and 24 to 48 months. Design A retrospective, descriptive, cross-sectional survey design was employed. Participants Purposive sampling was implemented as a nonrandomized sampling method. The data sets of 227 participants, between the ages of 1 month and 48 months, and their families were investigated. Setting The assessment data were extracted from an early communication intervention database at the Clinic for High Risk Babies at the University of Pretoria. Results The findings revealed that expressive and receptive language and listening skills presented as the most vulnerable communication areas across all three age groups. The cumulative effect of the risk factors was the greatest in the 12- to 23-month age group, as this group presented with the highest frequency of delayed communication development. Relative strengths were found across all age groups in three areas: average cognitive skills, gross motor development, and displaying an appropriate variety of communication functions. Conclusions The findings are confirmed by other studies and suggest that young children with CLP in the 12- to 23-month age group may be the most vulnerable for the emergence of communication delays. The vulnerable areas of communication development should be integrated as goals in a focused early communication intervention approach to the treatment of the young population with CLP.
Article
This chapter looks at developmental models and their application to psychopathology, and then considers the issues of the meaning of maladaptive behavior and predictability in the study of developmental psychopathology. Models discussed include a trait model, a contextual or environmental model, and an interactional model. These 3 models, which are prototypes of the various views of development, make clear how such models diverge and how they can be used to understand the etiology of psychopathology. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Congenital facial differences may impact a child's self-perception, activities and valuation, and what has been termed their "self-concept." This article reviews what constitutes self-concept, and its development during childhood and adolescence. The literature examining the role of physical appearance, specifically congenital facial differences on individuals' perceptions of self are reviewed in the context of psychosocial development. Positive self-concept can impact healthy behaviors, positive interactions with peers, and academic achievement. The role of mental health professionals in evaluating self-concept and objective measures of self-concept are discussed, and recommendations are made to assist medical practitioners regarding monitoring and encouragement of positive self-concept in children with congenital facial differences.
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Objective: The announcement, prenatally or at birth, of a cleft lip and/or palate represents a challenge for the parents. The purpose of this study is to identify parental working internal models of the child (parental representations of the child and relationship in the context of attachment theory) and posttraumatic stress disorder symptoms in mothers of infants born with a cleft. Method: The study compares mothers with a child born with a cleft (n = 22) and mothers with a healthy infant (n = 36). Results: The study shows that mothers of infants with a cleft more often experience insecure parental working internal models of the child and more posttraumatic stress symptoms than mothers of the control group. It is interesting that the severity or complexity of the cleft is not related to parental representations and posttraumatic stress disorder symptoms. The maternal emotional involvement, as expressed in maternal attachment representations, is higher in mothers of children with a cleft who had especially high posttraumatic stress disorder symptoms, as compared with mothers of children with a cleft having fewer posttraumatic stress disorder symptoms. Discussion: Mothers of children with a cleft may benefit from supportive therapy regarding parent-child attachment, even when they express low posttraumatic stress disorder symptoms.
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To test the hypothesis that children with orofacial clefts score lower than controls on measures of language and reading and to examine predictors of these outcomes. Longitudinal study tracking the development of children with and without orofacial clefts from infancy through age 7 years. Children with isolated cleft lip and palate (n = 29) and cleft palate only (n = 28) were recruited from the craniofacial program in an urban medical center. Seventy-seven demographically similar, unaffected controls were recruited via advertisements placed in area pediatric clinics and community centers. Infant measures assessed child development and mother-child interactions during feeding and teaching tasks. At ages 5 and 7 years, measures of language functioning and academic achievement were completed along with an interview to collect school placement data and information on speech services received. There were no significant group differences in language at ages 5 and 7 years. Children with clefts scored significantly higher than controls on measures of early reading at age 7 years. Outcomes were predicted by demographic factors, the quality of mother-child interactions during teaching and feeding tasks, and cognitive development scores at age 24 months. Findings do not support the hypothesis that children with clefts score lower than controls on neurocognitive and academic achievement measures. Predictive analyses revealed several dimensions that may be used in clinical practice to identify children at risk for learning and developmental concerns.
Article
Speech results were surveyed in 110 adolescent patients with clefts: 53 with unilateral cleft lip and palate, 46 with bilateral cleft lip and palate, and 11 with isolated clefts of the secondary palate. Only 12 of the 110 teenagers had received consistent team care from infancy. The early physical management was impossible to reliably determine in the remaining 98. Speech was normal in 22.7%, characterized by a variety of problems in approximately 66%, and a complete habilitative failure in 10.9%. Cleft palate and craniofacial teams who first encounter incompletely managed cases in the teenage years are faced with complex and interrelated challenges of providing appropriate physical management, speech habilitation, and psychosocial support, including determination of that approach which will be most likely to assure future compliance with treatment recommendations to each child and family.
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The high prevalence of mental health problems among children in the United States has continued to stimulate service-oriented professionals to seek targets for preventive intervention. In a 1999 survey of youth risk behavior during the previous year (Centers for Disease Control and Prevention, 2000), 28% of high school children felt blue or hopeless, 19% had considered suicide, and 8% had made an attempt. In terms of aggression, 36% had been in a physical fight. Academic problems were equally serious, with 30% of Hispanics dropping out before high school graduation compared to 14% of African Americans and 8% of whites. Although the majority of youth do not have such problems, the number who do is substantial. Understanding the pathways that have led to such problem behavior is an important precursor of any successful intervention. Prevention is intimately connected to developmental concerns because there is an expected time course in which activities in the present will influence activities in the future. Where the problem seems to be in the family, school, or peer group, intuitively interventions should take place in those settings and should have immediate impact. Unfortunately, most interventions in single domains have not produced major reductions in problem behavior. It appears that children typically experience multiple risks in multiple social contexts; consequently, it is unlikely that a “magic bullet” for prevention or intervention will be found (Masten & Coatsworth, 1998).
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This study compared personality characteristics of children with cleft lip and palate to another group of children with different observable physical impairment (orthopedic disability) and speech difficulties. It was hypothesized that different types of observable physical stigmata may result in different personality adaptations. Forty-five children from each of two groups (25 males and 20 females) were matched for sex, age, and intelligence. They were compared using the Missouri Children's Picture Series, a non-verbal personality test, on the following dimensions: Conformity, Masculinity/Femininity, Maturity, Agression, Inhibition, Activity Level Sleep Disturbance and Somatization. The results indicate that males with cleft lip and palate are significantly higher on Maturity and Inhibition while Orthopedically Disabled males are higher on Agression, Activity Level, and Somatization. Cleft lip and palate females are significantly higher on Maturity and Inhibition while Orthopedically Disabled females are higher on Masculinity. The results indicate differential personality adaptations in the two different types of observable physical impairments. Results are discussed in terms of their relationship to selected psychosocial variables.
Article
Objective. Physicians often are called on to deliver "bad news" in the form of a diagnosis with unhappy implications. Few guidelines exist for practitioners who wish to meet patient and family expectations for clear and caring communication. To develop recommendations for physicians, this study was undertaken to document how biologic parents of children born with a specific, non-life-threatening birth defect perceive the encounter with a physician during which they were informed of their children's diagnosis. The study also examines parental preferences for how this communication might best be managed and compares those with parent reports of their actual experiences. Methodology. Biologic parents of children born with cleft lip and/or palate (n = 100) were studied with a self-administered questionnaire about the diagnostic encounter in which they rated theoretically derived dimensions of physician communication. Their experiences, as well as their preferences for communication in a hypothetical case, were compared through the use of ratings and open-ended qualitative narratives. Results. Parents learned the diagnosis at birth (90%) from a physician (96%). Many report positive experiences, but there are significant differences between what parents experienced and what they desire in the informative interview. Parents wanted more opportunity to talk and to show their feelings and wanted the physician to try harder to make them feel better. As compared with their experiences, parents indicated a desire to have more information and more of a discussion about the possibility of mental retardation. They wanted the physician to show more caring and confidence, and wanted more referral to other parents, than they had experienced. Dimensions of physician behavior were more positively perceived by parents who were informed by a physician whom they felt they knew well. Conclusions. It is possible for physicians to effectively deliver bad news, such as the diagnosis of a birth defect, to parents. This study suggests specific communicative and educational approaches that are likely to improve parental satisfaction with such physician communications.
Article
This study hypothesized that maternal adjustment, perceptions, and social support would better predict child adaptation to craniofacial disfigurement than medical severity. Mothers of 77 children (ages 6-12) completed the Child Behavior Checklist, Beck Depression Inventory, Spielberger Trait Anxiety Scale, Social Support Questionnaire Revised, and Parenting Stress Index. Medical severity was assessed by the number of operations (craniofacial and other), comorbid medical conditions, and the Hay Attractiveness Scale. The children and mothers in our sample resembled a normal population in terms of their psychological functioning and quality of the mother-child relationships. Maternal adjustment and maternal perceptions of the mother-child relationship were more potent predictors of children's emotional adjustment than either medical severity or maternal social support.
Article
This study investigated the parenting stress and style and the social networks of parents with preschool children with and without craniofacial anomalies (CFA), and the effect of these factors on the child's level of social skill. Fifty-two families participated In the study. No differences were found between the CFA and control groups on level of parenting stress, parenting style, or social network characteristics. However, parents with children with visible defects found their social support networks more helpful, and advocated a more nurturing parenting style. For the CFA group, parenting stress predicted child level of social skill. These results underscore the Importance of Investigating the interaction between parent and child factors.
Article
Twenty-three mothers and their 5- to 7-year-old children with craniofacial anomalies (CFA) who were assessed during the child's infancy were followed. Three types of CFA were Included: cleft lip and palate (CLP), isolated cleft palate (CP), and sagittal synostosis. Measures of child status focused on behavior-problem frequency and self-concept. Mothers completed self-report measures of emotional well-being, marital satisfaction, and social support. Results Indicated that (1) a sizable minority (18%) of the children with CFA had clinically significant behavior-problem scores shown in concordant reports by parent and teacher of behavior problems; (2) Individual differences In child functioning within the CFA group were predicted by observational measures of earlier mother-Infant interaction during play and teaching situations; (3) mothers of children with CLP reported less favorable social support than mothers of children with CP or sagittal synostosis.
Article
This article outlines a developmental perspective on psychosocial maladjustment and Its implications for the psychological study and treatment of Individuals with craniofacial anomalies. A developmental theory of attachment is described and used to formulate hypotheses about the developing parent-child relationship during the first 5 years of life and its influence on the child's subsequent social and emotional growth. Preliminary research Involving Infants with clefts and other craniofacial anomalies is reviewed with respect to hypothesized points of vulnerability in the attachment process. Two major points are made: (1) developmental theory provides a framework for the early identification of children in this population with elevated risk of subsequent psychosocial problems, and (2) among the multiple child and family variables associated with elevated risk, a craniofacial anomaly Is unlikely to produce maladjustment in the absence of one or more other risk conditions such as family adversity, insecure attachment, or compromised child characteristics.
Article
Objective The purpose of this investigation was to study the adjustment and learning characteristics of children with different types of clefts. The hypotheses were that there may be different relationships among cleft variables (speech and appearance) according to the cleft types. Design The study compared three cleft groups on behavior rating, anxiety scales, depression scales, and self-perception (analyses of variance) and examined the influence of facial and speech ratings on self-perception (multiple regression analyses). Setting All patients were treated at a university hospital cleft palate clinic. Patients Sixty-five children aged 8 years to 17 years were selected based on nonsyndromic cleft (unilateral cleft lip and palate [ULP], bilateral cleft lip and palate [BLP], and cleft palate only [CPO]) and no significant neurological condition or hearing loss. Results The findings indicated children with CPO showed greater problems with parent- and teacher-reported depression, anxiety, and learning related to speech than children with ULP or BLP. The later two groups showed fewer problems and a greater relationship of problem to facial appearance. The children with ULP self-reported lower levels of depression than the other two groups. Conclusions Children with cleft show relatively good overall adjustment, but some problems appear related to speech and facial appearance. Subgroups may need to be studied separately.
Article
Maternal language addressed to 1-, 2-, and 3-year-old children with cleft lip and palate was studied. Videotaped interactions were obtained from 23 mother-child dyads (13 mother-cleft lip and palate child dyads, and 13 mother nonecleft child dyads) during free play. Results Indicated more similarities than differences in maternal language characteristics for the two groups of mothers.
Article
Objective The use of ultrasound for the prenatal diagnosis of cleft lip and palate has aided considerably in the early diagnosis of orofacial clefting. The impact and consequences of this need to be considered as the reliability and validity of ultrasound diagnosis increases. This review article considers a number of these issues as well as up-to-date information on the quality of the technique.
Article
Objective To identify aspects of psychosocial adjustment related to the self-perceived facial appearance of preadolescents with craniofacial abnormalities. Design Concurrent relationships were evaluated using a within-group correlational design. Participants Participants were 24 patients, aged 11 to 13, of a major craniofacial center and their parents who were contacted by telephone and agreed to participate. Main Outcome Measures Self-report and parent-report questionnaires assessing psychosocial adjustment. Results Self-perceived facial appearance was positively correlated with global self-worth, self-perceived social acceptance, and number of same-sex close friends, and negatively correlated with loneliness, parent-rated social problems, and parental advice/support and concern (all p's < .05 or better). Conclusions Dissatisfaction with facial appearance was associated with peer relationship problems and low global self-esteem, but not with other aspects of self-concept or other types of adjustment problems.
Article
Background The unexpected birth of a baby with a cleft lip and palate (CL/P) is a shocking and traumatic experience, generating anxiety for parents as well as the attendant health care team. Parents frequently leave the hospital with many unanswered questions because health care professionals do not educate them adequately. Objective To determine what information these parents felt was “critical” for them during the immediate newborn period and to determine how the “informer” was perceived during these encounters. Design Retrospective, self-administered questionnaire. Subjects and Methods Biologic parents of children with isolated CL/P aged 6 years and younger were surveyed. The questionnaire asked parents whether they remembered discussing diagnosis, prognosis, management, home care, and psychosocial issues. Parents were also asked to rank how “critical” it would have been for the “informer” to have discussed certain issues with them during this first day. Results Parents gave the highest priority to feeding and learning to identify illness in their baby; 95% wanted to be shown all normal aspects of their baby's exam, and 87% wanted to be told that the CL/P was not their fault. Usage of proper terminology to describe abnormal findings and receiving assurance that their child was not in pain were also important. Unfortunately, many parents reported that the informers did not address these issues. Conclusions Parents of newborns with CL/P want basic information in the immediate newborn period, especially regarding feeding and recognizing illness. These data suggest that informers are not adequately discussing these issues with parents.
Article
Objective The purpose of this study was to use caregiver report measures to describe the developmental status of infants and toddlers with clefts. Method Developmental assessment data were obtained on 186 infants and toddlers with cleft lip (n = 48), cleft palate (n = 46), and cleft lip/palate (n = 92) at one of the following age categories: 5 months (n = 47), 13 months (n = 46), 25 months (n = 47), and 36 months (n = 46). Developmental assessment measures used were the Kent Infant Developmental Scale and the Minnesota Child Development Inventory, both caregiver reports. Data were analyzed in separate 2-between ANOVAs (age x cleft type) for each developmental domain according to developmental assessment measure. Further, results were examined relative to the normative sample. Results The ANOVA results indicated that at 5 months, lower motor and self-help developmental quotients (DQs) were evident compared to the 13-month-old level. When compared to the normative sample, the 5-month-old infants exhibited ‘at-risk/delayed’ development on the motor, self-help, and cognitive domains, and as reflected on their full-scale scores, depending on the cleft type. Infants at 13 and 25 months were within normal limits in all developmental domains, with the exception of the 13-month-old infants with cleft palate, who demonstrate ‘at-risk’ development in the motor domain. At 36 months of age, all toddlers demonstrated significantly lower developmental performance in the fine motor, gross motor, and expressive language domain compared to the 25-month-old toddlers. Toddlers with cleft palate exhibit ‘at-risk/delayed’ development in the expressive language domain at 36 months. Conclusion Data are discussed relative to the events surrounding team management of clefts, Including surgery, middle-ear problems, and feeding difficulty.
Article
The self-concept of 105 children (8 to 11 years) and adolescents (12 to 18 years) with cleft lip and/or palate (CLP) was studied using the Piers-Harris Children's Self-Concept Scale and selected demographic and medical variables. Results indicated that most (98%) of children had average or above average self-concept scores. Further analysis, however, demonstrated an interaction between age and gender: adolescent girls experienced a more negative self-concept in comparison to younger girls and adolescent boys experienced a more positive self-concept in comparison to younger boys. In addition, popularity cluster scores for all children were below the mean for the normed population. Because children with CLP have additional difficulties (i.e., facial disfigurement, speech and language deficits, multiple surgeries), professionals should intercede to prevent or interrupt negative psychosocial outcomes, particularly for adolescent girls.
Article
Objective The purpose of this study was to examine the conversational skills of preschool and school-age children with cleft lip and palate. Design The children were audio- and videotaped during interactions with an unfamiliar adult. In addition, standardized measures of speech and language were administered, and ratings of resonance were obtained. Comparisons were made between the children with cleft lip and palate and their same-age peers on measures of conversational participation and a standardized test of pragmatic skills. Participants Participants were 20 children with unilateral cleft lip and palate (10 preschoolers and 10 school-age children) recruited from the Craniofacial Team at Rainbow Babies and Children's Hospital, Cleveland (OH) and 20 noncleft peers matched for gender, age, and socioeconomic status. Main outcome Measures Separate comparisons were made for the preschool children with cleft lip and palate and their noncleft peers, and the school-age children with cleft lip and palate and their noncleft peers on eight measures of conversational assertiveness/responsiveness and the standardized tests of pragmatics. Next, each child with cleft lip and palate was classified for level of conversational participation. Results Paired t tests revealed no significant differences between the preschool and school-age children with cleft lip and palate and their noncleft peers in level of conversational participation. However, individual child comparisons revealed less assertive profiles of conversational participation for 50% of the preschool and 20% of the school-age children with cleft lip and palate. Conclusions Children with cleft lip and palate may show a less assertive style of conversational participation, at least during the preschool years. Therefore, craniofacial team evaluations should include examination of conversational competency, particularly for children who are demonstrating difficulty with other aspects of speech, language, or social development.
Article
Objective The current study sought to replicate an unexpected finding reported by Speltz et al. (1997): relatively unattractive infants at age 3 months were more likely than attractive infants to show secure maternal attachment at age 12 months, a finding unaffected by the diagnosis of cleft lip and palate (CLP), cleft palate only (CPO), or the absence of a cleft condition. Design We evaluated the effects of diagnosis (CLP, CPO, or no diagnosis) and age (3, 12, and 24 months) on facial attractiveness ratings derived from a modified Q-sort method. Setting Craniofacial clinic in an urban children's hospital. Participants Infants with CLP and CPO and typically developing infants without clefts (n = 126) and their mothers. Ratings were made by 13 adults unfamiliar with cleft conditions. Main outcome Measures Facial attractiveness ratings. Results Infants with CLP were rated as the least attractive at all time points. At ages 12 and 24 months, infants in the CPO group were rated as less attractive than typical infants but more attractive than infants in the CLP group. Typical infants and those with CLP—utnot CPO—received higher attractiveness ratings with age. As hypothesized, less attractive infants, regardless of diagnosis, were more likely to show secure attachment than were more attractive infants. Conclusions We tentatively conclude that the perceived vulnerability of young infants, as indexed by atypical or unattractive facial characteristics, engenders extraordinary protectiveness and responsiveness in some mothers, leading to a higher probability of secure attachment. A test of this hypothesis with a new sample of infants is recommended.
Article
The study compared the social skills of preschoolers with and without craniofacial anomalies (CFA). Fifty-two children completed self-perception and facial expression tasks and a social skills interview. Parents and teachers also rated the children's social skills. Children with CFA gave less friendly responses to hypothetical social situations and were rated as less attractive by graduate students. Girls with CFA reported above average self-perceptions. Parents and teachers rated the children with CFA as having a level of social skills equal to the children without CFA. Different factors were predictive of level of social skills for CFA and control children.
Article
Nonsyndromic oral clefts are among the most common birth defects, affecting approximately 1 in 1000 Caucasian newborns. In recent decades, many investigators have used genetic and epidemiologic methods to identify etiologic factors, but results have often been inconclusive or contradictory. Etiologic heterogeneity is undoubtedly a major component in these birth defects, and there may not be a single answer to this problem. Here, we describe the main features of published studies pointing out their strengths and limitations. Additionally, we give insight into current methods for detecting the presence of interaction between genetic markers and environmental exposures in the etiology of oral clefts.
Article
Objective This research studied the relationship between associated congenital malformations and the mental and psychomotor development of children with clefts. Design The study was cross-sectional. Setting The study was conducted in a university hospital for children. Participants The sample consisted of 148 children with cleft lip, cleft palate, or both. Main Outcome Measures The children were assessed by a clinical geneticist at the age of 18 months. The children's level of development was determined by means of the Dutch version of the Bayley Scales of Infant Development. Results One-third of the total sample had associated malformations. Children with an isolated cleft lip showed the least. Children with an isolated cleft palate showed the highest percentage of minor malformations that are minor yet possibly worrisome. The total group achieved a mean developmental index (DI) on the mental scale of 98.9 with SD of 20.9. The motor scale showed a mean DI of 104.9 and SD of 24.7. Analysis of variance (ANOVA) showed that on the mental scale, the three main effects (diagnosis, evaluation, and sex) were significant at the 5% level. On the motor scale, only the main effect “evaluation” was significant. Conclusions This study demonstrated that children with associated congenital malformations might be disadvantaged with respect to their development. These malformations occurred most frequently with the cleft lip and palate and cleft palate only subgroups. More research, especially concerning the cleft palate only subgroup is needed because they are most at risk.
Article
Objective This study examined whether or not assumptions made about personality characteristics based on speech samples differed for children with repaired cleft palates (CP) versus unaffected children. Design Audiotapes of speech samples were presented in random order to blind raters. Patients/Participants The subjects were 20 children (10 females, 10 males) with repaired CP and 16 control (i.e., unaffected) children (8 females, 8 males). All children were 8 to 12 years of age, Caucasian, living in the St. Louis area, and lower-middle to upper-middle class. The raters were 20 (13 females, 7 males) 6th grade Caucasian students who attend a private school in the area. Setting Raters heard tapes in a group setting, but with individual headphones, in their school's cafeteria. Main Outcome Measure Each speech sample was rated (7-point Likert scale) by each student rater on a variety of personality characteristics based on the “Big Five” personality factors. Results A factor analysis of the items revealed a two-factor solution, although the factors were highly negatively correlated. No significant differences were found between ratings for the CP sample and the control sample for either factor scale (ANOVA, p = .93; p = .67). Similarly, when the two factors were combined to form a single factor, no significant differences were found between the ratings for the CP sample and the control sample (ANOVA, p = .79). Conclusions Overall, it does not appear that children differentially associated personality characteristics based on speech to children with repaired CP versus unaffected children, in the absence of visual input.
Article
Self-ratings of satisfaction with appearance and accomplishment of psychosocial tasks were examined by age and gender among school aged children with visible defects (cleft lip and/or palate, n = 272), or Invisible defects (cleft palate only, n = 159), and dental patients (n = 128) without clefts. Using weighted least squares ANOVA and logistic regressions, the results revealed that subjects with visible defects expressed greater dissatisfaction with their appearance than those subjects with invisible defects (p < .001). Subjects with Invisible defects consistently expressed lower problem solving ability than subjects with visible defects (p < .001) and dental patients with no defects (p < .05). Both groups with clefts expressed less social independence (p < .001); and subjects with clefts reported having more friends than other children (p < .01). Implications for clinicians and further research are discussed.
Article
Objective Several risk factors in the early lives of children with clefts are believed to interfere with their development of secure attachments to parents; however, this possibility has rarely been studied empirically. This study compared 12- and 24-month attachment classifications of infants with cleft palate (CP), infants with cleft lip and palate (CLP), and a comparison group of unimpaired infants (COMP). Method Twenty-two CP infants, 24 CLP infants, and 61 matched COMP infants were assessed at 12 and 24 months of age in an urban children's hospital. At both visits, mothers and infants participated in the Strange Situation, which was videotaped and subsequently coded for patterns of attachment behavior. Results CP infants displayed a lower rate of 12-month attachment security than infants in the CLP or COMP groups. By 24 months, no diagnostic group differences in attachment classification were found. Stable 12- to 24-month attachment classifications were less likely in the CP group (36.3%) than in the COMP (62.3%) group. CP infants who were insecure at 12 months were more likely to become secure by 24 months than were CLP or COMP group infants. Conclusions In contrast to previous theory and clinical speculation, the facial appearance of infants with CLP does not appear to affect the early mother-infant relationship adversely. The infancy period is marked by attachment instability for infants with CP, who demonstrated lower-than-expected rates of security at 12 months. However, these problems resolved in nearly all cases by 24 months of age. Most infants with clefts emerged from the first 2 years of life with secure maternal attachments.
Article
Objective Genetics has been thought to play a crucial role in the etiology of nonsyndromic cleft lip and palate (CL/P) for over 60 years, but we are still no closer to finding contributing genes. The main hindrance to the progress of CL/P genetic research is the complex multifactorial nature of the disorder with environmental factors playing a significant, if not equally important role. Thus, CL/P is the likely outcome of several developmental and biochemical events that may be different in different individuals or families. Conclusions Because of the known advantages of folate therapy during pregnancy and the developmental problems that may occur when diets are folate deficient, recent research has looked toward a possible genetic explanation for susceptibility to low folate status. Several gene variants have been identified which, when combined with an inadequate diet, may impede human development, but it still remains to be seen whether these are a major contributor to CL/P. Here we review some of the current viewpoints and the possible impact of folic acid supplementation on clefting incidence.
Article
Objective Investigated mental development in infants and toddlers with cleft lip and/or palate (CLP). Design This was a retrospective analysis of developmental scores on qualified children between 4 and 36 months of age. Cross-sectional analysis included children in four age groups (6, 12, 18, and 24 months); longitudinal analysis included children at mean age 9.1 (range = 4 to 15) months at Time 1 and 24 months (range = 16 to 36) at Time 2. Participants Cross-sectional analysis included 180 children (59% male participants) in four diagnostic groups (cleft lip only [CL], cleft lip and palate [CLP], cleft palate only [CP], and Pierre Robin). The longitudinal sample included 85 children (64% male children) in the same diagnostic groups. Main outcome Measures Mental Scale (MDI) of the Bayley Scales of Infant Development. Results Mean MDIs were in the average range but decreased significantly between youngest and oldest groups in both cross-sectional (F(3,179) = 4.9, p < .01) and longitudinal samples (F(1,84) = 6.87, p < .01). There was a significant difference among cleft types (F(3,179) = 3.5, p < .025). Infants with CL obtained the highest scores, and infants with Pierre Robin Sequence obtained the lowest. Perceptual-motor development in the first year of life was predictive of developmental status at age 2. Conclusions The number of children with CLP who may be at risk for developmental problems during the second year of life is greater than would be expected. Children at greatest risk may demonstrate early delays in acquisition of perceptual-motor skills during the first year of life.
Article
In this paper we examine mothers' representations of one form of trauma to the caregiving system: the experience of receiving a diagnosis of a chronic illness or disability in their child. An interview and classification system was used with 91 mothers of children ages 15-50 months with cerebral palsy or epilepsy. Mothers were classified as Resolved or Unresolved with respect to their child's diagnosis and grouped into subcategories within these major groups. Roughly half of these mothers were classified as Unresolved with respect to their child's diagnosis. Diagnosis type, severity of condition, developmental age, and time since receiving diagnosis were all unrelated to the distribution of Resolved/Unresolved classifications. Patterns of resolution in which cognitive strategies predominated were the most frequent form within the Resolved classification. Findings provide support for the organizational nature of caregiving representations as well as a number of implications for clinical practice.
Article
Objective: To compare a group of children with cleft lip and palate (CLP) with a group of noncleft, matched control children on measures of cognitive development, speech and language abilities, and audiologic status at 12 and 24 months of age. Design: Using a prospective, longitudinal study design, a group of 16 children with CLP and a group of 16 noncleft control children matched for race, sex, birth order, and socioeconomic status were compared using the Bayley Scales of Infant Development, the Receptive-Expressive Emergent Language Scale, the Sequenced Inventory of Communication Development-Revised (SICD-R), the Preschool Language Scale-Revised (PLS-R), the mean length of utterance, audiometric evaluation, and impedance screening at 12 and 24 months of age. All were free of other congenital abnormalities or known causes of neurodevelopmental dysfunction. Results: Children with CLP had lower mental developmental index (MDI) and psychomotor developmental index scores than control children. They had lower language comprehension scores on the SICD-R and PLS-R and lower expressive language scores on the Receptive-Expressive Emergent Language Scale, SICD-R, and PLS-R than control children. The group with CLP had a significantly higher number of children with abnormal tympanogram results or ventilation tubes at 12 and 24 months. There was a positive correlation between language test scores at 24 months and MDI scores at 24 months (r = .73 to .85). Seventy-five percent of children with CLP who had hearing loss at 12 months had MDI scores more than 1 SD below the mean versus 0% of children with normal hearing. There was a relationship between hearing status at 12 months and comprehension and expressive language scores at 24 months. Conclusions: Children with CLP had significantly lower scores on tests of cognition, comprehension, and expressive language abilities than matched control children at 12 and 24 months of age. They also had a higher frequency of middle-ear disease and ventilation tubes than control children, although no significant difference in hearing sensitivity was found between groups. Early identification and treatment of these delays may reduce subsequent verbal deficits, hearing loss, and academic difficulties.
Article
To compare a group of children with cleft lip and palate (CLP) with a group of noncleft, matched control children on measures of cognitive development, speech and language abilities, and audiologic status at 12 and 24 months of age. Using a prospective, longitudinal study design, a group of 16 children with CLP and a group of 16 noncleft control children matched for race, sex, birth order, and socioeconomic status were compared using the Bayley Scales of Infant Development, the Receptive-Expressive Emergent Language Scale, the Sequenced Inventory of Communication Development-Revised (SICD-R), the Preschool Language Scale-Revised (PLS-R), the mean length of utterance, audiometric evaluation, and impedance screening at 12 and 24 months of age. All were free of other congenital abnormalities or known causes of neurodevelopmental dysfunction. Children with CLP had lower mental developmental index (MDI) and psychomotor developmental index scores than control children. They had lower language comprehension scores on the SICD-R and PLS-R and lower expressive language scores on the Receptive-Expressive Emergent Language Scale, SICD-R, and PLS-R than control children. The group with CLP had a significantly higher number of children with abnormal tympanogram results or ventilation tubes at 12 and 24 months. There was a positive correlation between language test scores at 24 months and MDI scores at 24 months (r = .73 to .85). Seventy-five percent of children with CLP who had hearing loss at 12 months had MDI scores more than 1 SD below the mean versus 0% of children with normal hearing. There was a relationship between hearing status at 12 months and comprehension and expressive language scores at 24 months. Children with CLP had significantly lower scores on tests of cognition, comprehension, and expressive language abilities than matched control children at 12 and 24 months of age. They also had a higher frequency of middle-ear disease and ventilation tubes than control children, although no significant difference in hearing sensitivity was found between groups. Early identification and treatment of these delays may reduce subsequent verbal deficits, hearing loss, and academic difficulties.
Article
Physicians often are called on to deliver "bad news" in the form of a diagnosis with unhappy implications. Few guidelines exist for practitioners who wish to meet patient and family expectations for clear and caring communication. To develop recommendations for physicians, this study was undertaken to document how biologic parents of children born with a specific, non-life-threatening birth defect perceive the encounter with a physician during which they were informed of their children's diagnosis. The study also examines parental preferences for how this communication might best be managed and compares those with parent reports of their actual experiences. Biologic parents of children born with cleft lip and/or palate (n = 100) were studied with a self-administered questionnaire about the diagnostic encounter in which they rated theoretically derived dimensions of physician communication. Their experiences, as well as their preferences for communication in a hypothetical case, were compared through the use of ratings and open-ended qualitative narratives. Parents learned the diagnosis at birth (90%) from a physician (96%). Many report positive experiences, but there are significant differences between what parents experienced and what they desire in the informative interview. Parents wanted more opportunity to talk and to show their feelings and wanted the physician to try harder to make them feel better. As compared with their experiences, parents indicated a desire to have more information and more of a discussion about the possibility of mental retardation. They wanted the physician to show more caring and confidence, and wanted more referral to other parents, than they had experienced. Dimensions of physician behavior were more positively perceived by parents who were informed by a physician whom they felt they knew well. It is possible for physicians to effectively deliver bad news, such as the diagnosis of a birth defect, to parents. This study suggests specific communicative and educational approaches that are likely to improve parental satisfaction with such physician communications.
Article
Spontaneous expressive control of negative emotion was examined in 2 studies of children aged 3-9 using an experimental "disappointing" situation. In Study 1, facial expressions, verbalizations, and spontaneous references to emotional expression control were examined in terms of the child's age and sex and the experimental manipulation (neutral, positive, and "disappointing" mood segments). Results suggested that children attempted to control the display of negative emotion with positive displays and that females did so more than males. No effect of age on expressive behavior was found. Age differences were found for children's spontaneous reference to expressive control, with such references increasing with age. To further examine the possibility that preschoolers engaged in expressive control, Study 2 examined the expressive behavior of 20 preschool girls in the disappointing situation in 2 conditions, alone or with the examiner present. These data indicated that females, aged 3-4, inhibited negative displays when in the presence of the examiner.
Article
Objective: To compare at ages 3, 12, and 24 months the cognitive and psychomotor development of 29 infants with cleft lip and palate (CLP), 28 infants with cleft palate only (CPO), and a demographically matched comparison (COMP) group of 69 infants; to examine predictors of cognitive status at age 24 months in the cleft group. Methods: Infants were administered the Bayley Scales of Infant Development (BSID), mother-infant interactions were observed, and medical records were reviewed. Results: CLP and CPO groups scored lower than the COMP group on the BSID, but did not differ from one another. Cleft group infants scored lower than COMP group infants on BSID items assessing nonverbal and expressive language skills. Quality of maternal interaction predicted the 2-year Mental Development Index (MDI) scores of infants with clefts. Conclusions: Infants with clefts show relative deficits in cognitive and psychomotor development. Cognitive deficits are apparent in nonverbal as well as verbal areas of performance.
Article
Presents a theoretical model based on attachment theory as a framework for understanding the processes involved in parents' resolutions versus nonresolution of their reaction to receiving their child's diagnosis of cerebral palsy. The Reaction to Diagnosis Interview (RDI), a 15-min interview designed to assess parental resolutions of a child's diagnosis, is described. To assess the validity of the RDI, 70 mothers of infant and preschool children with a diagnosis of cerebral palsy were administered the RDI, and the security of each child's attachment to his or her mother was assessed using the Strange Situation. Results indicate that parental resolution versus nonresolution of the child's diagnosis is strongly associated with secure versus insecure child-parent attachment. Results are discussed in terms of the validity of the RDI, implications for clinical research and theory, and the potential use of the RDI as a clinical assessment procedure.
Article
The present study examined qualitative and quantitative differences in maternal interactive behaviour towards infants with and without cleft lip and palate (CLP). Thirty-three mother-child pairs with CLP and 34 pairs without CLP were videotaped at 3, 6, 9, and 12 months of age in two sorts of play situations at home. In addition, the mothers were questioned by letter about their ability to recognize and interpret the child's signals; their willingness to respond to such signals; and the duration of shared daily activities in the context of feeding and play. The results showed that mothers of CLP children are somewhat less sensitive than other mothers. In addition, it appeared that CLP children play less with other people. Longer feeding times for CLP children appeared to be restricted to the age of 3 months. It is suggested that mothers of CLP children may be comparatively directive and stimulating because of uncertainty about additional deficiencies. Furthermore, they may be inclined to keep their children away from the outside world.
Article
Ethological attachment theory is a landmark of 20th century social and behavioral sciences theory and research. This new paradigm for understanding primary relationships across the lifespan evolved from John Bowlby's critique of psychoanalytic drive theory and his own clinical observations, supplemented by his knowledge of fields as diverse as primate ethology, control systems theory, and cognitive psychology. By the time he had written the first volume of his classic Attachment and Loss trilogy, Mary D. Salter Ainsworth's naturalistic observations in Uganda and Baltimore, and her theoretical and descriptive insights about maternal care and the secure base phenomenon had become integral to attachment theory. Patterns of Attachment reports the methods and key results of Ainsworth's landmark Baltimore Longitudinal Study. Following upon her naturalistic home observations in Uganda, the Baltimore project yielded a wealth of enduring, benchmark results on the nature of the child's tie to its primary caregiver and the importance of early experience. It also addressed a wide range of conceptual and methodological issues common to many developmental and longitudinal projects, especially issues of age appropriate assessment, quantifying behavior, and comprehending individual differences. In addition, Ainsworth and her students broke new ground, clarifying and defining new concepts, demonstrating the value of the ethological methods and insights about behavior. Today, as we enter the fourth generation of attachment study, we have a rich and growing catalogue of behavioral and narrative approaches to measuring attachment from infancy to adulthood. Each of them has roots in the Strange Situation and the secure base concept presented in Patterns of Attachment. It inclusion in the Psychology Press Classic Editions series reflects Patterns of Attachment's continuing significance and insures its availability to new generations of students, researchers, and clinicians.
Article
This observational study examined developmental patterns in children's attempts to regulate their expressive behavior in a mildly conflictful situation that was contrived by creating expectations in children for receiving a desirable reward but in fact receiving an undesirable one. This situation provided a limited sample of children's expressive behavior when faced with an implied display rule: "Look pleased, despite receiving a disappointing gift." Videotapes of the children's expressive behavior were analyzed, and the major findings included significant age X sex interactions wherein the youngest children (especially boys) were more likely to show negative behavior on receiving an undesirable gift (i. e., a drab baby toy), while the older children (especially girls) were more likely to maintain their positive expressive behavior. The results are discussed in terms of developmental differences in (a) awareness of social rules for management of expressive behavior, (b) ability to implement the rule, and (c) motivation to carry out the rule.
Article
In Exp I, peer perceptual correlates of social preference (SP) and social impact (SI) were investigated with 311 3rd, 5th, and 8th graders. SP was highly positively related to cooperativeness, supportiveness, and physical attractiveness and negatively related to disruptiveness and aggression. SI was related to active, salient behaviors of both positive and negative valence. Whereas the correlates were found to be similar at each grade level, greater proportions of the variance in these dimensions could be predicted at younger than older ages. In Exp II, these dimensions were used to assign 531 Ss to 5 sociometric status groups: popular, rejected, neglected, controversial, and average. Peer perceptions of the behavioral correlates of these groups were solicited and found to reveal distinct profiles. A previously unidentified group of controversial children was perceived as disruptive and aggressive (like the rejected group), but also as social leaders (like popular Ss). It is suggested that researchers consider controversial children as a distinct group in future behavioral and epidemiological studies. (32 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
A series of interrelated studies describe the scale development and empirical validation of the Health Resources Inventory (HRI), a teacher measure of primary-grade children's competency-related behavior. Oblique factor analysis of the HRI for matched samples ( N = 298 and N = 294) of 1st-3rd graders yielded comparable solutions, each with 5 internally consistent competence dimensions. Test-retest reliability was .87 for the full scale and ranged from .72 to .91 on individual factor scales. Parametric findings reveal that girls had consistently higher competence scores, county children had significantly higher scores than city children, and there were no consistent grade level differences. Correlations between the HRI and a symptom scale indicate that although competence and pathology are strongly (inversely) related for overall global judgments, competence and pathology are more independent at the level of individual factors. The HRI discriminated between normal and disturbed children, and in a more stringent validity test, sensitively differentiated competence levels within a normative sample. Limitations of the inventory are discussed along with implications for future work. (44 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Investigated whether toddlers with neurological defects would demonstrate more indices of the disorganized attachment pattern than children with non-neurologically based conditions. 25 children with neurological problems (e.g., cerebral palsy; aged 15–30 mo) and 25 children with non-neurologically congenital problems (e.g., cleft lip; aged 13–33 mo), and their mothers (aged 18–41 yrs) were recruited. Attachment quality, neurological indices of disorganization, and maternal sensitivity, reaction to child diagnosis, attitudes regarding child congenital problems, mental health, and parenting hassles and stressful life events were measured in the strange situation, interactive and divided-attention play tasks, and interviews and questionnaires completed by the mothers. Mothers of children diagnosed with neurological problems were more likely to be rated as unresolved, and mothers who had resolved their grief over having a child with a congenital problem were more likely to have a child classified as secure. Children with a neurological disorder exhibited significantly more neurological indices of disorganization. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Compared the early face-to-face interactions of 12 3-mo-old infants with cranio-facial anomalies (cleft lip and palate) and their mothers with those of 12 normal control infant–mother dyads to determine the degree to which early infant–mother interactions were impaired by cranio-facial deformity. Infant–mother play was videotaped for 10 min and mother–infant time spent looking and vocalizing was coded by a naive research assistant. In addition, videotapes were rated on infants' state, physical activity, head orientation, gaze behavior, facial expressions, vocalizations, and fussiness and on mothers' state, physical activity, head orientation, gaze behavior, silencing during infants' gaze aversion, facial expression, vocalizations, imitative behaviors, contingent responsivity, and game playing. Results show that, although mothers of cranio-facial infants looked at them as much as did mothers of normal infants, cranio-facial infants looked at their mothers for a lesser amount of interaction time. Cranio-facial infants engaged in less frequent smiling and vocalizing than did normal infants. Mothers of cranio-facial infants also showed less frequent smiling, vocalizing, imitative behaviors, contingent responsivity, and game playing. Although it is not clear why mothers of cranio-facial infants were less active, it is suggested that such mothers view their infants' condition as long-term and are depressed by this reality. (15 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Recent research indicates the importance of distinguishing between sociometrically neglected children and sociometrically rejected children. However, making the distinction between neglected status and rejected status traditionally has required administering a negative-nomination sociometric measure, a measure viewed by some researchers and school personnel as having potentially harmful effects. An alternative method of identifying rejected children is proposed and evaluated that involves the joint use of positive-nomination and rating-scale measures. Rating-scale, positive-nomination, and negative-nomination measures were administered to 747 children in Grades 2–6. The results indicate that the alternative method accurately identified a high percentage of rejected Ss (91.2%) and that the stability of rejected status, identified using the new method, is similar to that obtained in previous research. It is concluded that the method proposed should make it possible to identify rejected children when circumstances do not allow for the administration of a negative-nomination measure. (23 ref) (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Four-month-old infants were classified on motor activity and frequency of crying to visual and auditory stimuli. The subgroups that were either high or low on both variables were observed at 14 months during a free-play period in an unfamiliar playroom. Five free-play variables were combined to produce a composite on which a high score was indicative of behavioral inhibition. The infants who had been high in motor activity and crying at 4 months had higher inhibition scores than did the infants with the opposite profile.
Article
Facial embryology and neonatal palatal cleft morphology.- Types of Clefts. Facial growth in cleft palate children.- Lip and palate surgery.- Presurgical orthopedics.- Mid-facial changes.- Orthognatic surgery.- The nasopharyngeal area.- Speech.- The future.
Article
In this paper we examine mothers' representations of one form of trauma to the caregiving system: the experience of receiving a diagnosis of a chronic illness or disability in their child. An interview and classification system was used with 91 mothers of children ages 15–50 months with cerebral palsy or epilepsy. Mothers were classified as Resolved or Unresolved with respect to their child's diagnosis and grouped into subcategories within these major groups. Roughly half of these mothers were classified as Unresolved with respect to their child's diagnosis. Diagnosis type, severity of condition, developmental age, and time since receiving diagnosis were all unrelated to the distribution of Resolved/Unresolved classifications. Patterns of resolution in which cognitive strategies predominated were the most frequent form within the Resolved classification. Findings provide support for the organizational nature of caregiving representations as well as a number of implications for clinical practice.
Article
This study assessed parent and child predictors of attachment in a sample of 72 toddlers with neurological (e.g., cerebral palsy) and non-neurological (e.g., cleft lip and palate) birth defects and their mothers. Parenting quality (e.g., sensitivity) was expected to be more important in predicting the attachment relationship than type and severity of child medical condition. Parenting and indices of severity of child condition were measured via researcher observation. Attachment was measured via the Strange Situation and parent reported Attachment Q-sort. Parenting quality was better for children with more severe appearance disfigurements. Strange Situation and Q-sort assessments of attachment were not significantly related. Children with neurological impairments were at greater risk for developing insecure attachments than were children with non-neurological conditions. Parenting quality also directly predicted Strange Situation assessed attachment security and Q-sort comfort seeking/exploration but not standard Q-sort criterion scores. Parenting quality partially mediated the relation between child medical condition and attachment security. Results suggest child medical factors influence parenting, and thereby, child attachment. ©2002 Michigan Association for Infant Mental Health.
Article
Abstract— Videotaped observations of the free-play interaction of mothers and (a) 12 physically handicapped, (b) 14 premature and (c) nine healthy 2-year-olds were evaluated. Mothers of handicapped toddlers were significantly more likely to ignore their children at 24 months than were mothers in other groups. Further, although children's Bayley scores had not differed when seen previously at 1 year, children of mothers who ignored at 2 years had lower concurrent 2-year IQ scores and experienced an average 30-point drop between the two evaluations. These results support clinical reports of maternal withdrawal from handicapped young children and suggest that the mother-child dyad in such cases may be at continuing risk throughout the early years.