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Caregiver Responses to Early Cleft Palate Care: A Mixed Method Approach

Sischo, Lacey; Clouston, Sean A P; Phillips, Ceib; Broder, Hillary L
OBJECTIVE: This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants. METHOD: A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' 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 ( approximately 1 month of age), prelip surgery ( approximately 3-5 months of age), and postpalate surgery ( approximately 12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes. RESULTS: Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' 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. CONCLUSION: 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
PMCID:4757521
PMID: 26280177
ISSN: 1930-7810
CID: 1745152

Surgeon's and Caregivers' Appraisals of Primary Cleft Lip Treatment with and without Nasoalveolar Molding: A Prospective Multicenter Pilot Study

Broder, Hillary L; Flores, Roberto L; Clouston, Sean; Kirschner, Richard E; Garfinkle, Judah S; Sischo, Lacey; Phillips, Ceib
BACKGROUND: 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. METHODS: 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. Multilevel modeling was used to model change in ratings of infants' appearance before treatment and after surgery. RESULTS: The expert clinician ratings indicated that nasoalveolar molding-treated infants had more severe clefts before treatment, yet both groups were rated equally after surgery. Nasoalveolar molding caregivers reported better postsurgery outcomes compared with no-nasoalveolar molding caregivers (p < 0.05), particularly in relation to the appearance of the nose. CONCLUSIONS: Despite having a more severe cleft before treatment, infants who underwent nasoalveolar molding were found by clinician ratings to have results comparable to those who underwent lip repair alone. Infants who underwent nasoalveolar molding were perceived by caregivers to have better treatment outcomes than those who underwent lip repair without nasoalveolar molding. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, II.
PMCID:4770834
PMID: 26910677
ISSN: 1529-4242
CID: 1964792

Coping With Cleft: A Conceptual Framework of Caregiver Responses to Nasoalveolar Molding

Sischo, Lacey; Broder, Hillary L; Phillips, Ceib
Objective : To present a conceptual framework of caregiver coping and adaptation to early cleft care using nasoalveolar molding. Design : In-depth interviews were conducted at three time points with caregivers of infants with cleft lip or cleft lip and palate whose children had nasoalveolar molding to treat their cleft. Qualitative data were analyzed using modified grounded theory. Results : Most caregivers expressed initial apprehension and anxiety about the responsibilities of care associated with nasoalveolar molding (e.g., changing and positioning tapes, cleaning the appliance). In subsequent interviews, caregivers often reported positive feelings related to their active participation in their child's treatment for cleft. These positive feelings were associated with increased self-esteem and feelings of empowerment for the caregivers. Although caregivers also identified burdens associated with nasoalveolar molding (e.g., stress related to lip taping, concerns about the appliance causing sores in their child's mouth, travel to weekly appointments), they tended to minimize the impact of these issues in comparison with the perceived benefits of nasoalveolar molding. Conclusions : Despite the increased burden of care, many caregivers of infants with cleft used nasoalveolar molding as a problem-focused coping strategy to deal with their child's cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant.
PMCID:4363042
PMID: 25225840
ISSN: 1055-6656
CID: 1258752

Communication Skills in Dental Students: New Data Regarding Retention and Generalization of Training Effects

Broder, Hillary L; Janal, Malvin; Mitnick, Danielle M; Rodriguez, Jasmine Y; Sischo, Lacey
Previous studies have shown that a communications program using patient instructors (PIs) facilitates data-gathering and interpersonal skills of third-year dental students. The aim of this study was to address the question of whether those skills are retained into the students' fourth year and generalized from the classroom to the clinic. In the formative training phase, three cohorts of D3 students (N=1,038) at one dental school received instruction regarding effective patient-doctor communication; interviewed three PIs and received PI feedback; and participated in a reflective seminar with a behavioral science instructor. In the follow-up competency phase, fourth-year students performed two new patient interviews in the clinic that were observed and evaluated by clinical dental faculty members trained in communications. Mean scores on a standardized communications rating scale and data-gathering assessment were compared over training and follow-up sessions and between cohorts with a linear mixed model. The analysis showed that the third-year students' mean communication and data-gathering scores increased with each additional encounter with a PI (p<0.05) and that communication scores were not only maintained but increased during the fourth-year follow-up competency evaluations (p<0.05). Based on changes in the communications curriculum, prior instruction facilitated the students' clinical communication performance at baseline (p<0.05). This study suggests that the current Clinical Communications program improved students' data-gathering and interpersonal skills. Those skills were maintained and generalized through completion of the D4 students' summative competency performance in a clinical setting.
PMID: 26246533
ISSN: 1930-7837
CID: 1709392

Type II diabetes and oral health: perceptions among adults with diabetes and oral/health care providers in Ghana

Broder, H L; Tormeti, D; Kurtz, A L; Baah-Odoom, D; Hill, R M; Hirsch, S M; Hewlett, S A; Nimako-Boateng, J K; Rodriguez, J Y; Sischo, L
OBJECTIVE: This study sought to examine oral health beliefs and attitudes, and utilisation of oral health care services among individuals with diabetes and health professionals who serve them in Ghana. BASIC RESEARCH DESIGN: A qualitative study using grounded theory was conducted. CLINICAL SETTING: University of Ghana Dental School at Korle Bu, University of Ghana School of Public Health, National Diabetes Research and Management Centre at Korle Bu, and New York University College of Dentistry. PARTICIPANTS: A convenience sample of 59 patients comprised 7 focus groups conducted in either Twi or English. Seven key informant interviews with healthcare professionals and one spiritual leader were completed. RESULTS: Data from the focus groups and interviews reveal: 1, half of the participants with diabetes have oral manifestations (e.g., bleeding gums) and participants are generally unaware of interrelationship between diabetes and oral health; 2, dental treatment utilisation is minimal and associated almost exclusively with reparative and emergency care; and 3, medical health providers do not acknowledge the interrelationship between oral health and diabetes nor do they incorporate oral health issues into diabetes screening/treatment. CONCLUSION: Oral health knowledge and practices are limited among patients with diabetes in Accra, Ghana. Collaborative efforts for in-service education and training for oral health and medical professionals may be beneficial in serving the oral and general health care needs as well as improving the oral health-related quality of life of Ghanaians with diabetes.
PMID: 25300150
ISSN: 0265-539x
CID: 1307722

Examining factors associated with oral health-related quality of life for youth with cleft

Broder, Hillary L; Wilson-Genderson, Maureen; Sischo, Lacey; Norman, Robert G
BACKGROUND: Patient-reported quality-of-life outcomes in cleft lip-cleft palate treatment are critical for evidence-based care. Scant data exist analyzing treatment from the patient's perspective. The authors examined the interrelationship among variables associated with oral health-related quality of life among youth with cleft. METHODS: As part of an ongoing longitudinal study, clinical evaluations and research questionnaire packets were completed before surgical recommendations were made (baseline). Participants completed the Child Oral Health Impact Profile, a validated oral health-related quality-of-life measure for children with cleft. During the baseline clinical evaluations, plastic surgeons determined whether surgical interventions were recommended within the year (expert determination represents a greater degree of current clinical need). General linear models incorporating surgical recommendation, gender, and age were fit for each subscale of and for the total Child Oral Health Impact Profile. Significant interaction terms were evaluated for their effect on the subscale. RESULTS: Baseline assessments were obtained from 1200 participants (mean, 11.8 years; 57 percent male). Participants with a surgical recommendation had lower quality of life on all but the self-esteem subscale compared with those without a surgical recommendation (p < 0.002). Two subscales had statistically significant age-sex interactions (p < 0.003), whereas another subscale had a statistically significant surgery by sex interaction term (p = 0.027). CONCLUSIONS: Overall, youth for whom surgery is currently recommended had lower oral health-related quality-of-life scores on the Child Oral Health Impact Profile Total scale than those with no surgical recommendation; older female subjects had lower quality-of-life scores than male subjects. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, II.
PMCID:4120869
PMID: 24867742
ISSN: 1529-4242
CID: 1018702

Examination of a Theoretical Model for Oral Health-Related Quality of Life Among Youths With Cleft

Broder, Hillary L; Wilson-Genderson, Maureen; Sischo, Lacey
Objectives. We evaluated relationships among physical and psychological indicators and oral health-related quality of life (OHRQOL) in youths with cleft. Methods. We recruited youths aged 7 to 18 years with cleft palate (n = 282) or cleft lip and palate (n = 918) and their caregivers into a 5-year observational investigation at 6 US treatment centers from 2009 to 2011. At baseline, youths completed surveys to assess psychological status. After clinical evaluation, 433 youths received a recommendation for surgery. We developed structural models from the baseline data incorporating age, gender, race, and cleft diagnosis to examine direct relationships between depressive symptoms and, in separate models, self-concept and sense of mastery and OHRQOL. Subsequent models examined the possible mediating effect of surgical recommendation. Results. Depressive symptoms were negatively and self-concept and self-efficacy were positively associated with OHRQOL. Surgical recommendation appeared to mediate the effect of psychological well-being, but not depression, on OHRQOL, even after adjustment for cleft diagnosis. In some models, individual-level characteristics were significant. Conclusions. Path analyses support the theoretical model and underscore the importance of examining positive psychosocial characteristics such as resiliency and self-concept in this patient population. (Am J Public Health. Published online ahead of print March 13, 2014: e1-e7. doi:10.2105/AJPH.2013.301686).
PMCID:3987602
PMID: 24625170
ISSN: 0090-0036
CID: 836462

Evaluation of the similarities and differences in response patterns to the Pediatric Quality of Life Inventory and the Child Oral Health Impact Scores among youth with cleft

Broder, Hillary L; Norman, Robert G; Sischo, Lacey; Wilson-Genderson, Maureen
PURPOSE: To examine (a) the pattern of responses to a generic health-related quality of life (HRQL) measure (Pediatric Quality of Life Inventory-PedsQL) and an oral health-related quality of life (OHRQoL) measure (Child Oral Health Impact Profile-COHIP), and (b) the associations of these scores with surgical recommendation status among youth with cleft. METHODS: Cross-sectional data (baseline) regarding clinicians' surgical recommendations and quality of life (QoL) measures were examined from an ongoing observational study on treatment outcomes. Approximately one-third of the racially and geographically diverse sample (N = 1,200; [Formula: see text] = 11.6 years) received surgical recommendations to correct either visible (aesthetic) or invisible (functional) defects. Effect sizes were used to quantify differences in QoL based on surgical recommendation and to compare the sensitivity of the PedsQL and COHIP subscales. Using Pearson coefficients, the scores of those recommended for surgery were compared with those without a surgical recommendation. RESULTS: A moderate correlation (0.52) was found between the total scores on the PedsQL and COHIP (p < 0.0001). Subscale correlations between the QoL measures ranged from 0.19 to 0.48 with the strongest correlation between the PedsQL Emotional (r = 0.47) and COHIP Socioemotional Well-being subscale. The effect size for the COHIP Socioemotional Well-being (0.39) was larger than the PedsQL Social/Emotional (0.07/0.11) subscale (Z = 5.30/Z = 4.64, p < 0.0001, respectively), and the total COHIP (0.31) was significantly greater than the total PedsQL scale (0.15, z = 2.65, p = 0.008). CONCLUSIONS: A significant relationship was found between generic HRQL, OHRQoL, and surgical needs among youth with cleft with the COHIP having larger effect sizes than the PedsQL among surgical groups.
PMCID:3834226
PMID: 23760529
ISSN: 0962-9343
CID: 381152

Erratum: Reliability and validity testing for the Child Oral Health Impact Profile-Reduced (COHIP-SF 19) (Journal of Public Health Dentistry 73 (2013) (86)) [Correction]

Broder, H. L.; Wilson-Genderson, M.; Sischo, L.
SCOPUS:84874069770
ISSN: 1752-7325
CID: 2808292

An Overview of Children's Oral Health-Related Quality of Life Assessment: From Scale Development to Measuring Outcomes

Genderson, M W; Sischo, L; Markowitz, K; Fine, D; Broder, H L
The objectives of this paper are to present an overview of children's oral health-related quality of life and include specific applications for using quality of life assessment in dental research. The process of developing pediatric oral health- related quality of life measures, in particular the Child Oral Health Impact Profile, is outlined. Examples of children's oral health-related quality of life measurement in caries research are also provided. Quality of life outcomes are presented and discussed in the context of caries research. Lastly, the relevance of measuring clinically meaningful difference in the context of measuring outcomes research is highlighted with recommendations for future research. (c) 2013 S. Karger AG, Basel.
PMCID:3937956
PMID: 24107604
ISSN: 0008-6568
CID: 611652