The organizational example of a university-based team and two patient case studies illustrate how... more The organizational example of a university-based team and two patient case studies illustrate how team interaction affects decision making. The model presented for effective team organization is an egalitarian one. Interdependency, flexibility, and open communication among members are essential. Cleft lip and palate teams provide evaluation and treatment that include input from a variety of professional disciplines. The team context makes it possible for care to be coordinated and alleviates the fragmentation of seeking treatment from several independent specialists. Teams also have a special opportunity to address the complex social and psychological issues prevalent in treating persons with birth defects. Specialists, like psychologists and social workers, identify these issues so that surgeons, dentists, and other clinicians may provide a comprehensive treatment plan and management approach. If psychologists or social workers are not available to a team, the group may still succe...
Comparing oral health-related quality of life (OHRQoL) measures can facilitate selecting the most... more Comparing oral health-related quality of life (OHRQoL) measures can facilitate selecting the most appropriate one for a particular research question/setting. Three child OHRQoL measures Child Perceptions Questionnaire (CPQ11–14), the Child Oral Health Impact Profile (COHIP) and the Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) were used with 335 10- to 13-year-old participants in a supervised tooth-brushing programme in New Zealand. The use of global questions enabled their validity to be examined. Assessments were conducted at baseline and after 12 months. All three measures had acceptable internal consistency reliability. There were moderate, positive correlations among their scores, and all showed differences in the impact of dental caries on OHRQoL, with children with the highest caries experience having the highest scale scores. Effect sizes were used to assess meaningful change. The CPQ11–14 and the CARIES-QC showed meaningful change. The COHIP-SF score...
Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic con... more Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.
Increased overjet has been associated with teasing, negative stereotyping, and low self-concept. ... more Increased overjet has been associated with teasing, negative stereotyping, and low self-concept. Early treatment for children with Class II malocclusion is often recommended under the assumption that an improved dental appearance may benefit a child by increasing his or her social acceptance and hence self-concept. The self-concept of 208 patients, age 7 to 15 years and with increased overjet, was measured before treatment using the Piers-Harris self-concept scale; a subset of 87 of these children were measured again after 15 months of early growth modification. The mean self-concept score for these children was above the population norm, and there was no association between the child's score and the magnitude of his or her overjet or age. Although some significant associations were found between Class II malocclusion features and self-concept scores, the explained variation in self-concept scores was low (R2 from 5% to 8%). There was no change in the mean self-concept score of these children during early treatment, nor was there any association between reduction of Class II malocclusion features and improved self-concept. These findings suggest that children with Class II malocclusion do not generally present for treatment with low self-concept and, on average, self-concept does not improve during the brief period of early orthodontic treatment.
A sample of 194 patients whose dentofacial disharmonies were severe enough to warrant an orthogna... more A sample of 194 patients whose dentofacial disharmonies were severe enough to warrant an orthognathic surgical treatment option completed the SCL-90-R, a 90-item assessment tool used to measure current level of psychological distress. Two global and nine primary dimension scores of psychological distress were computed. The average interpersonal sensitivity, psychoticism, and obsessive-compulsive dimension scores were higher than the nonpsychiatric patient population norms for both males and females, but the confidence intervals for these dimensions were still in the upper end of the normal range of functioning (< 1 SD above the normative mean). No statistically significant differences by gender or age group were observed. Over 15% of the patients were clinically elevated on obsessive-compulsive behavior, interpersonal sensitivity problems, hostility, paranoid ideation, and psychoticism; and 24.7% qualified as a positive diagnosis for a psychiatric disorder. It appears that a surprisingly large number of individuals with dentofacial disharmonies who are seeking treatment consultation are experiencing a level of psychological distress that warrants intervention.
This study investigated the relationship between oral conscious sedation and subsequent behavior ... more This study investigated the relationship between oral conscious sedation and subsequent behavior in the dental setting. The sample consisted of 38 children between the ages of 39 to 71 months (mean=50 months) who had been treated with oral sedation 2 to 34 months(mean=13 months) previously, and a control group of 38 children, matched by age (mean=51 months) and gender, who had received dental treatment without conscious sedation or general anesthesia one week to 3 years previously. Subjects were matched by age and gender. All children received a standard recall examination and a prophylaxis, during which behavior and anxiety were measured. Independent variables included age at the time of sedation, present age, gender, time elapsed since sedation, effectiveness of sedation, parental scores on Corah&amp;amp;amp;amp;amp;amp;amp;amp;#39;s Dental Anxiety Scale and parent&amp;amp;amp;amp;amp;amp;amp;amp;#39;s answers to a questionnaire. The dependent variables were child behavior (rated with the 4-point Frankl scale) and self-reported anxiety ratings. Both groups had mean behavior ratings of positive or very positive (experimental group mean=3.13; control group mean=3.34). There were no statistically significant differences between the groups and there was little correlation of independent and dependent variables. There is no relationship between oral conscious sedation and the future behavior of children in the dental setting.
Despite the increasing use of nasoalveolar molding in early cleft treatment, questions remain abo... more Despite the increasing use of nasoalveolar molding in early cleft treatment, questions remain about its effectiveness. This study examines clinician and caregiver appraisals of primary cleft lip and nasal reconstruction with and without nasoalveolar molding in a nonrandomized, prospective, multicenter study. Participants were 110 infants with cleft lip/palate (62 treated with and 48 treated without nasoalveolar molding) and their caregivers seeking treatment at one of six high-volume cleft centers. Using the Extent of Difference Scale, standard photographs for a randomized subset of 54 infants were rated before treatment and after surgery by an expert clinician blinded to treatment group. Standard blocked and cropped photographs included frontal, basal, left, and right views of the infants. Using the same scale, caregivers rated their infants' lip, nose, and facial appearance compared with the general population of infants without clefts before treatment and after surgery. Multi...
This study evaluated interpersonal communication skills among third- and fourth-year dental stude... more This study evaluated interpersonal communication skills among third- and fourth-year dental students during two clinical communications training programs. Students participated in two clinical communications (CC) training sessions, each comprised of four encounters with patient instructors (PIs) who were trained to enact standardized patient scenarios. Scenarios in CC1 addressed straightforward patient care situations in dentistry (e.g., bridge adjustment), while CC2 added
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, Jan 5, 2015
To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-r... more To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-related quality of life and self-reported speech outcomes in school aged-children. Prospective, nonrandomized multicenter design. Six ACPA-accredited cleft centers. Patients with cleft palate at the age of mixed dentition. None. Prevalence of fistula and location of fistula (Pittsburgh Classification System). Patients were placed into one of three groups based on the following criteria: alveolar cleft present, no previous repair (Group 1); alveolar cleft present, previously repaired (Group 2); no congenital alveolar cleft (Group 3). Presence of fistula and subgroup classification were correlated to oral health-related quality of life (Child Oral Health Impact Profile [COHIP]) and perceived speech outcomes. The fistula rate was 5.52% (62 of 1198 patients). There was a significant difference in fistula rate between the three groups: Group 1 (11.15%), Group 2 (4.44%), Group 3 (1....
This study sought to understand caregivers&amp;amp;amp;amp;#39; (CGs&amp;amp;amp;amp;#39;... more This study sought to understand caregivers&amp;amp;amp;amp;#39; (CGs&amp;amp;amp;amp;#39;) responses to early cleft lip/palate care for their infants. A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants&amp;amp;amp;amp;#39; cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (∼1 month of age), prelip surgery (∼3-5 months of age), and postpalate surgery (∼12-13 months of age). Multilevel modeling was used to longitudinally assess CGs&amp;amp;amp;amp;#39; psychosocial outcomes. Although the first year was demanding for all CGs, NAM onset and the child&amp;amp;amp;amp;#39;s lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs&amp;amp;amp;amp;#39; ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research. (PsycINFO Database Record
Questionnaire data about mental health services provided by teams for patients with cleft lip, cl... more Questionnaire data about mental health services provided by teams for patients with cleft lip, cleft palate, or craniofacial anomalies were examined. The subjects were 195 directors of cleft/craniofacial teams. Descriptive analysis of the directors&#39; responses included their teams&#39; patient population, mental health representation, and intervention practices. Nurses and social workers were most frequently identified as the mental health specialists on the teams. Eighty percent of the directors stated that mental health intervention was important to patients and to teams. The type of service and the directors&#39; ratings of the importance of psychosocial issues are presented. Research suggestions are provided.
This study compares self-concept scores on the Primary Self-Concept Inventory (PSCI) of 58 7-year... more This study compares self-concept scores on the Primary Self-Concept Inventory (PSCI) of 58 7-year-old children. The experimental groups included the three following subgroups: those with visible defects (cleft lip), mixed visible and invisible defects (cleft lip and palate), and invisible defects (cleft palate). The control consisted of first grade students with no physical defects. Significant differences between the subjects with clefts and controls were found. Children with cleft lip and palate (visible and invisible defects) demonstrated the lowest self-concept scores. These test results suggest that early primary school age children experience significant stigma. Therefore, early evaluation of psychosocial stress factors for children with clefts is suggested. School personnel can contribute to addressing self-concept concerns of children with defects. Suggestions for further research are presented.
Questionnaire data about genetic counseling experiences are presented from 37 parents and 25 pati... more Questionnaire data about genetic counseling experiences are presented from 37 parents and 25 patients who were evaluated. The subjects&#39; perceptions vary regarding the cause of cleft lip or palate or both. More positive feelings about the birth defect are expressed after the subjects receive counseling. However, 25 percent of the sample express negative feelings about the birth defect after counseling. Ninety percent of the subjects indicate that counseling should occur within the first 3 months of the birth of the infant with a cleft. The subjects agree significantly on the important components of genetic counseling. The authors conclude that effective counseling includes (1) providing facts, alleviating guilt, and dispelling misperceptions; (2) discussing decision making; and (3) facilitating the coping process. Implications for further research and a protocol for counseling are suggested.
This study surveyed 102 patients with cleft lip, cleft palate, or cleft lip and cleft palate (age... more This study surveyed 102 patients with cleft lip, cleft palate, or cleft lip and cleft palate (ages 13 to 19) and their parents to assess satisfaction with appearance, speech ability, and intelligibility. The data were based upon standardized interviews conducted at a cleft palate treatment center, using simple questions with high face validity. Surgical experience was high among this sample, as reflected by the finding that the majority of patients (55.7%) had had three or more operations on the face or mouth. Patient ratings of facial appearance showed that most patients were very pleased (59.3%) or moderately pleased (13.2%); others were somewhat (18.7%) or very (8.8%) disappointed. Many parents indicated that their children expressed occasional (22.0%) or frequent (27.5%) concerns about appearance. Nearly all patients (91.9%) felt that their operations had accomplished what they expected, though some of the cleft lip patients (35.7%) and their parents (43.9%) were less than very pleased with the appearance of the lip. When asked how pleased they were with the way they presently talked, most patients (69.1%) were very pleased, though some disappointment was expressed. Although often pleased with their current speech status, many patients rated themselves as only moderately understandable (19.1%) or as not understandable (8.5%). No significant gender effects were found in satisfaction, appearance, or speech ratings. There were no significant differences found between parent and child ratings. The findings indicate that at a center delivering team-based cleft palate care, both adolescent patients and their parents have considerable concerns about appearance and speech results.
The International journal of adult orthodontics and orthognathic surgery
Patients whose skeletal disharmony was severe enough to warrant a surgical treatment option compl... more Patients whose skeletal disharmony was severe enough to warrant a surgical treatment option completed a 24-item Motives for Treatment questionnaire. Each item was rated from (1) not at all a reason to (4) very much a reason. Items were grouped to form six dimensions. An average score of 3.0 or greater on a given dimension was considered a strong motivation. Of the 135 patients who completed the questionnaire, 16% of the patients had primarily a self-image motivation, 4% primarily an oral function motivation, and 6% strong dual self-image/oral function motivations. Males and females differed significantly on the social well-being and temporomandibular joint (TMJ) dimensions. A strong social motivation occurred 4.5 times more frequently among males than among females, while a higher proportion of females than males reported TMJ concerns. Patients older than 25 scored higher on oral function, future health, and TMJ dimensions. Patients who elected surgery had higher scores on oral function, nasal function, and TMJ dimensions. Approximately 1.5 times as many patients who elected surgery scored an average of 3.0 or higher on the self-image and oral function dimensions.
Objectives: The original 34-item COHIP (Children's Oral Health Impact Profile) sought to meas... more Objectives: The original 34-item COHIP (Children's Oral Health Impact Profile) sought to measure oral health-related quality of life in children with craniofacial anomalies and unmet oral health care needs and was developed using several samples of child-caregiver pairs. The goal of the present study was to explore possible item reduction on the COHIP to create a shorter measure for survey purposes (e.g., needs assessment) while retaining the desirable measurement properties of the original instrument. Methods: The COHIP has been established as a reliable and valid tool (2007). To identify the lowest performing items, second Order Confirmatory Factor Analysis using ML estimation in AMOS 18.0 was applied to the subscales (first order factors) and used to estimate the overall COHIP properties (second order factor). Cronbach's alpha was used to measure internal consistency. Two diverse samples were used: 1) 220 Latino children from low-income families 11.8 (2.9) years and 45% f...
Objective: We sought to evaluate a theoretical model regarding the relationships amongst individu... more Objective: We sought to evaluate a theoretical model regarding the relationships amongst individual characteristics and psychological well-being and OHRQoL and the possible mediating role of extent of defect in youth receiving cleft care at one of six US treatment centers. Method: As part of a five-year longitudinal observational investigation, youth with cleft palate only (n=282) and cleft lip and palate (n=918) between 7-18 years old and their caregivers were recruited. At baseline, youth completed research packets including: the Beck Self-Concept and Depression Inventories, 20-item scales; and the Child Oral Health Impact Profile (COHIP), a validated 34-item OHRQoL assessment developed for school-aged youth with orofacial conditions. Higher scores indicate a higher OHRQoL. Based on clinical evaluation, youth were either recommended for surgery within a year (n=433) or not recommended for surgery. Surgical recommendations were categorized as: ‘Invisible’– functional surgical needs...
The organizational example of a university-based team and two patient case studies illustrate how... more The organizational example of a university-based team and two patient case studies illustrate how team interaction affects decision making. The model presented for effective team organization is an egalitarian one. Interdependency, flexibility, and open communication among members are essential. Cleft lip and palate teams provide evaluation and treatment that include input from a variety of professional disciplines. The team context makes it possible for care to be coordinated and alleviates the fragmentation of seeking treatment from several independent specialists. Teams also have a special opportunity to address the complex social and psychological issues prevalent in treating persons with birth defects. Specialists, like psychologists and social workers, identify these issues so that surgeons, dentists, and other clinicians may provide a comprehensive treatment plan and management approach. If psychologists or social workers are not available to a team, the group may still succe...
Comparing oral health-related quality of life (OHRQoL) measures can facilitate selecting the most... more Comparing oral health-related quality of life (OHRQoL) measures can facilitate selecting the most appropriate one for a particular research question/setting. Three child OHRQoL measures Child Perceptions Questionnaire (CPQ11–14), the Child Oral Health Impact Profile (COHIP) and the Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) were used with 335 10- to 13-year-old participants in a supervised tooth-brushing programme in New Zealand. The use of global questions enabled their validity to be examined. Assessments were conducted at baseline and after 12 months. All three measures had acceptable internal consistency reliability. There were moderate, positive correlations among their scores, and all showed differences in the impact of dental caries on OHRQoL, with children with the highest caries experience having the highest scale scores. Effect sizes were used to assess meaningful change. The CPQ11–14 and the CARIES-QC showed meaningful change. The COHIP-SF score...
Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic con... more Conducting longitudinal, multicentre, multidisciplinary research for individuals with chronic conditions can be challenging. Despite careful planning, investigative teams must adapt to foreseen and unforeseen problems. Our objective is to identify challenges encountered and solutions sought in a recently completed observational, longitudinal study of youth with cleft lip and palate as well as their caregivers. Data for analysis were derived from a 6-year, multicentre, prospective, longitudinal study of youth with cleft conducted from 2009 to 2015 that examined oral health-related quality of life and other related clinical observations over time in youth who had cleft-related surgery compared to those who did not. Youth and their caregivers participating in this study were followed at one of six geographically diverse, multidisciplinary cleft treatment centres in the USA. Establishing effective communication, ensuring protocol adherence, safeguarding data quality, recognizing and managing differences across sites, maximizing participant retention, dealing with study personnel turnover, and balancing/addressing clinical and research tasks were particularly exigent issues that arose over the course of the study. Attending to process, ongoing communication within and across sites, and investigator and clinician commitment and flexibility were required to achieve the stated aims of the research. Studying children with cleft and their caregivers over time created both foreseen and unforeseen challenges. Solutions to these challenges are presented to aid in the design of future longitudinal research in individuals with chronic conditions.
Increased overjet has been associated with teasing, negative stereotyping, and low self-concept. ... more Increased overjet has been associated with teasing, negative stereotyping, and low self-concept. Early treatment for children with Class II malocclusion is often recommended under the assumption that an improved dental appearance may benefit a child by increasing his or her social acceptance and hence self-concept. The self-concept of 208 patients, age 7 to 15 years and with increased overjet, was measured before treatment using the Piers-Harris self-concept scale; a subset of 87 of these children were measured again after 15 months of early growth modification. The mean self-concept score for these children was above the population norm, and there was no association between the child&#39;s score and the magnitude of his or her overjet or age. Although some significant associations were found between Class II malocclusion features and self-concept scores, the explained variation in self-concept scores was low (R2 from 5% to 8%). There was no change in the mean self-concept score of these children during early treatment, nor was there any association between reduction of Class II malocclusion features and improved self-concept. These findings suggest that children with Class II malocclusion do not generally present for treatment with low self-concept and, on average, self-concept does not improve during the brief period of early orthodontic treatment.
A sample of 194 patients whose dentofacial disharmonies were severe enough to warrant an orthogna... more A sample of 194 patients whose dentofacial disharmonies were severe enough to warrant an orthognathic surgical treatment option completed the SCL-90-R, a 90-item assessment tool used to measure current level of psychological distress. Two global and nine primary dimension scores of psychological distress were computed. The average interpersonal sensitivity, psychoticism, and obsessive-compulsive dimension scores were higher than the nonpsychiatric patient population norms for both males and females, but the confidence intervals for these dimensions were still in the upper end of the normal range of functioning (< 1 SD above the normative mean). No statistically significant differences by gender or age group were observed. Over 15% of the patients were clinically elevated on obsessive-compulsive behavior, interpersonal sensitivity problems, hostility, paranoid ideation, and psychoticism; and 24.7% qualified as a positive diagnosis for a psychiatric disorder. It appears that a surprisingly large number of individuals with dentofacial disharmonies who are seeking treatment consultation are experiencing a level of psychological distress that warrants intervention.
This study investigated the relationship between oral conscious sedation and subsequent behavior ... more This study investigated the relationship between oral conscious sedation and subsequent behavior in the dental setting. The sample consisted of 38 children between the ages of 39 to 71 months (mean=50 months) who had been treated with oral sedation 2 to 34 months(mean=13 months) previously, and a control group of 38 children, matched by age (mean=51 months) and gender, who had received dental treatment without conscious sedation or general anesthesia one week to 3 years previously. Subjects were matched by age and gender. All children received a standard recall examination and a prophylaxis, during which behavior and anxiety were measured. Independent variables included age at the time of sedation, present age, gender, time elapsed since sedation, effectiveness of sedation, parental scores on Corah&amp;amp;amp;amp;amp;amp;amp;amp;#39;s Dental Anxiety Scale and parent&amp;amp;amp;amp;amp;amp;amp;amp;#39;s answers to a questionnaire. The dependent variables were child behavior (rated with the 4-point Frankl scale) and self-reported anxiety ratings. Both groups had mean behavior ratings of positive or very positive (experimental group mean=3.13; control group mean=3.34). There were no statistically significant differences between the groups and there was little correlation of independent and dependent variables. There is no relationship between oral conscious sedation and the future behavior of children in the dental setting.
Despite the increasing use of nasoalveolar molding in early cleft treatment, questions remain abo... more Despite the increasing use of nasoalveolar molding in early cleft treatment, questions remain about its effectiveness. This study examines clinician and caregiver appraisals of primary cleft lip and nasal reconstruction with and without nasoalveolar molding in a nonrandomized, prospective, multicenter study. Participants were 110 infants with cleft lip/palate (62 treated with and 48 treated without nasoalveolar molding) and their caregivers seeking treatment at one of six high-volume cleft centers. Using the Extent of Difference Scale, standard photographs for a randomized subset of 54 infants were rated before treatment and after surgery by an expert clinician blinded to treatment group. Standard blocked and cropped photographs included frontal, basal, left, and right views of the infants. Using the same scale, caregivers rated their infants' lip, nose, and facial appearance compared with the general population of infants without clefts before treatment and after surgery. Multi...
This study evaluated interpersonal communication skills among third- and fourth-year dental stude... more This study evaluated interpersonal communication skills among third- and fourth-year dental students during two clinical communications training programs. Students participated in two clinical communications (CC) training sessions, each comprised of four encounters with patient instructors (PIs) who were trained to enact standardized patient scenarios. Scenarios in CC1 addressed straightforward patient care situations in dentistry (e.g., bridge adjustment), while CC2 added
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, Jan 5, 2015
To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-r... more To report the associations of oro-nasal fistulae on the patient-centered outcomes oral health-related quality of life and self-reported speech outcomes in school aged-children. Prospective, nonrandomized multicenter design. Six ACPA-accredited cleft centers. Patients with cleft palate at the age of mixed dentition. None. Prevalence of fistula and location of fistula (Pittsburgh Classification System). Patients were placed into one of three groups based on the following criteria: alveolar cleft present, no previous repair (Group 1); alveolar cleft present, previously repaired (Group 2); no congenital alveolar cleft (Group 3). Presence of fistula and subgroup classification were correlated to oral health-related quality of life (Child Oral Health Impact Profile [COHIP]) and perceived speech outcomes. The fistula rate was 5.52% (62 of 1198 patients). There was a significant difference in fistula rate between the three groups: Group 1 (11.15%), Group 2 (4.44%), Group 3 (1....
This study sought to understand caregivers&amp;amp;amp;amp;#39; (CGs&amp;amp;amp;amp;#39;... more This study sought to understand caregivers&amp;amp;amp;amp;#39; (CGs&amp;amp;amp;amp;#39;) responses to early cleft lip/palate care for their infants. A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants&amp;amp;amp;amp;#39; cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (∼1 month of age), prelip surgery (∼3-5 months of age), and postpalate surgery (∼12-13 months of age). Multilevel modeling was used to longitudinally assess CGs&amp;amp;amp;amp;#39; psychosocial outcomes. Although the first year was demanding for all CGs, NAM onset and the child&amp;amp;amp;amp;#39;s lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs&amp;amp;amp;amp;#39; ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research. (PsycINFO Database Record
Questionnaire data about mental health services provided by teams for patients with cleft lip, cl... more Questionnaire data about mental health services provided by teams for patients with cleft lip, cleft palate, or craniofacial anomalies were examined. The subjects were 195 directors of cleft/craniofacial teams. Descriptive analysis of the directors&#39; responses included their teams&#39; patient population, mental health representation, and intervention practices. Nurses and social workers were most frequently identified as the mental health specialists on the teams. Eighty percent of the directors stated that mental health intervention was important to patients and to teams. The type of service and the directors&#39; ratings of the importance of psychosocial issues are presented. Research suggestions are provided.
This study compares self-concept scores on the Primary Self-Concept Inventory (PSCI) of 58 7-year... more This study compares self-concept scores on the Primary Self-Concept Inventory (PSCI) of 58 7-year-old children. The experimental groups included the three following subgroups: those with visible defects (cleft lip), mixed visible and invisible defects (cleft lip and palate), and invisible defects (cleft palate). The control consisted of first grade students with no physical defects. Significant differences between the subjects with clefts and controls were found. Children with cleft lip and palate (visible and invisible defects) demonstrated the lowest self-concept scores. These test results suggest that early primary school age children experience significant stigma. Therefore, early evaluation of psychosocial stress factors for children with clefts is suggested. School personnel can contribute to addressing self-concept concerns of children with defects. Suggestions for further research are presented.
Questionnaire data about genetic counseling experiences are presented from 37 parents and 25 pati... more Questionnaire data about genetic counseling experiences are presented from 37 parents and 25 patients who were evaluated. The subjects&#39; perceptions vary regarding the cause of cleft lip or palate or both. More positive feelings about the birth defect are expressed after the subjects receive counseling. However, 25 percent of the sample express negative feelings about the birth defect after counseling. Ninety percent of the subjects indicate that counseling should occur within the first 3 months of the birth of the infant with a cleft. The subjects agree significantly on the important components of genetic counseling. The authors conclude that effective counseling includes (1) providing facts, alleviating guilt, and dispelling misperceptions; (2) discussing decision making; and (3) facilitating the coping process. Implications for further research and a protocol for counseling are suggested.
This study surveyed 102 patients with cleft lip, cleft palate, or cleft lip and cleft palate (age... more This study surveyed 102 patients with cleft lip, cleft palate, or cleft lip and cleft palate (ages 13 to 19) and their parents to assess satisfaction with appearance, speech ability, and intelligibility. The data were based upon standardized interviews conducted at a cleft palate treatment center, using simple questions with high face validity. Surgical experience was high among this sample, as reflected by the finding that the majority of patients (55.7%) had had three or more operations on the face or mouth. Patient ratings of facial appearance showed that most patients were very pleased (59.3%) or moderately pleased (13.2%); others were somewhat (18.7%) or very (8.8%) disappointed. Many parents indicated that their children expressed occasional (22.0%) or frequent (27.5%) concerns about appearance. Nearly all patients (91.9%) felt that their operations had accomplished what they expected, though some of the cleft lip patients (35.7%) and their parents (43.9%) were less than very pleased with the appearance of the lip. When asked how pleased they were with the way they presently talked, most patients (69.1%) were very pleased, though some disappointment was expressed. Although often pleased with their current speech status, many patients rated themselves as only moderately understandable (19.1%) or as not understandable (8.5%). No significant gender effects were found in satisfaction, appearance, or speech ratings. There were no significant differences found between parent and child ratings. The findings indicate that at a center delivering team-based cleft palate care, both adolescent patients and their parents have considerable concerns about appearance and speech results.
The International journal of adult orthodontics and orthognathic surgery
Patients whose skeletal disharmony was severe enough to warrant a surgical treatment option compl... more Patients whose skeletal disharmony was severe enough to warrant a surgical treatment option completed a 24-item Motives for Treatment questionnaire. Each item was rated from (1) not at all a reason to (4) very much a reason. Items were grouped to form six dimensions. An average score of 3.0 or greater on a given dimension was considered a strong motivation. Of the 135 patients who completed the questionnaire, 16% of the patients had primarily a self-image motivation, 4% primarily an oral function motivation, and 6% strong dual self-image/oral function motivations. Males and females differed significantly on the social well-being and temporomandibular joint (TMJ) dimensions. A strong social motivation occurred 4.5 times more frequently among males than among females, while a higher proportion of females than males reported TMJ concerns. Patients older than 25 scored higher on oral function, future health, and TMJ dimensions. Patients who elected surgery had higher scores on oral function, nasal function, and TMJ dimensions. Approximately 1.5 times as many patients who elected surgery scored an average of 3.0 or higher on the self-image and oral function dimensions.
Objectives: The original 34-item COHIP (Children's Oral Health Impact Profile) sought to meas... more Objectives: The original 34-item COHIP (Children's Oral Health Impact Profile) sought to measure oral health-related quality of life in children with craniofacial anomalies and unmet oral health care needs and was developed using several samples of child-caregiver pairs. The goal of the present study was to explore possible item reduction on the COHIP to create a shorter measure for survey purposes (e.g., needs assessment) while retaining the desirable measurement properties of the original instrument. Methods: The COHIP has been established as a reliable and valid tool (2007). To identify the lowest performing items, second Order Confirmatory Factor Analysis using ML estimation in AMOS 18.0 was applied to the subscales (first order factors) and used to estimate the overall COHIP properties (second order factor). Cronbach's alpha was used to measure internal consistency. Two diverse samples were used: 1) 220 Latino children from low-income families 11.8 (2.9) years and 45% f...
Objective: We sought to evaluate a theoretical model regarding the relationships amongst individu... more Objective: We sought to evaluate a theoretical model regarding the relationships amongst individual characteristics and psychological well-being and OHRQoL and the possible mediating role of extent of defect in youth receiving cleft care at one of six US treatment centers. Method: As part of a five-year longitudinal observational investigation, youth with cleft palate only (n=282) and cleft lip and palate (n=918) between 7-18 years old and their caregivers were recruited. At baseline, youth completed research packets including: the Beck Self-Concept and Depression Inventories, 20-item scales; and the Child Oral Health Impact Profile (COHIP), a validated 34-item OHRQoL assessment developed for school-aged youth with orofacial conditions. Higher scores indicate a higher OHRQoL. Based on clinical evaluation, youth were either recommended for surgery within a year (n=433) or not recommended for surgery. Surgical recommendations were categorized as: ‘Invisible’– functional surgical needs...
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Papers by Hillary Broder