Healthcare and psychosocial experiences of individuals with craniofacial microsomia: Patient and caregivers perspectives

Luquetti, Daniela V; Brajcich, Michelle; Stock, Nicola Marie; Heike, Carrie L.; Johns, Alexis L.

doi:10.1016/j.ijporl.2018.02.007

Cited by 21 publications

(24 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In a study of young children with microtia (Johns et al, 2017), teasing was reported to begin between the ages of 2 to 5 years and to increase with age, with all the children in this sample reported having been teased by age 6. Similar early teasing patterns were reported by Luquetti et al (2018) in a larger sample of children with CFM.…”

Section: Introductionsupporting

confidence: 85%

Behavioral Adjustment of Preschool Children With and Without Craniofacial Microsomia

Johns

Wallace

Collett

et al. 2020

The Cleft Palate-Craniofacial Journal

Self Cite

View full text Add to dashboard Cite

Objective: The study aim was to assess behavioral adjustment in preschool children with and without craniofacial microsomia (CFM). Design: Multisite cohort study of preschoolers with CFM (“cases”) or without CFM (“controls”). Participants: Mothers (89%), fathers (9%), and other caregivers (2%) of 161 preschoolers. Outcome Measure: Child Behavior Check List (CBCL 1.5-5); linear regressions with standardized effect sizes (ES) adjusted for sociodemographic confounds. Results: Child Behavior Check Lists for 89 cases and 72 controls (average age 38.3 ± 1.9 months). Children were male (54%), white (69%), and of Latino ethnicity (47%). Cases had microtia with mandibular hypoplasia (52%), microtia only (30%), or other CFM-associated features (18%). Nearly 20% of cases had extracranial anomalies. Composite CBCL scores were in the average range compared to test norms and similar for cases and controls. On the subscales, cases’ parents reported higher Anxious/Depressed scores (ES = 0.35, P = .04), Stress Problems (ES = 0.40, P = .04), Anxiety Problems (ES = 0.34, P = .04), and Autism Spectrum Problems (ES = 0.41, P = .02); however, the autism subscale primarily reflected speech concerns. Among cases, more problems were reported for children with extracranial anomalies and certain phenotypic categories with small ES. Conclusions: Behavioral adjustment of preschoolers with CFM was comparable to peers. However, parental reports reflected greater concern for internalizing behaviors; thus, anxiety screening and interventions may benefit children with CFM. Among cases, more problems were reported for those with more complex presentations of CFM. Craniofacial microsomia–related speech problems should be distinguished from associated psychosocial symptoms during developmental evaluations.

show abstract

Section: Introductionsupporting

confidence: 85%

Behavioral Adjustment of Preschool Children With and Without Craniofacial Microsomia

Johns

Wallace

Collett

et al. 2020

The Cleft Palate-Craniofacial Journal

Self Cite

View full text Add to dashboard Cite

show abstract

“…CFM is estimated to occur in 1 in 3,500 to 5,600 live births ( Poswillo, 1988 ) and can result in surgeries to restore craniofacial form and function, such as for the ear, eye, mandible, facial nerve, and orbit ( Birgfeld & Heike, 2012 ). Students with CFM can receive rehabilitation services, including occupational and speech therapies ( Luquetti et al, 2018 ; Speltz et al, 2017 ), and can experience reduced quality of life relative to unaffected peers, as indicated by caregiver-reported difficulties in physical, social, and school functioning ( Khetani et al, 2013 ) that may hinder their school participation. These functional difficulties include lower verbal processing skills, including vocabulary, reading, and writing ( Speltz et al, 2017 ), and behavioral–social adjustment ( Wallace et al, 2018 ), as well as greater social concerns ( Johns et al, 2018 ; Khetani et al, 2013 ; Luquetti et al, 2018 ) and stigma because of their appearance ( Hamilton et al, 2018 ; Luquetti et al, 2018 ).…”

mentioning

confidence: 99%

Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia

Kaelin

Wallace

Werler

et al. 2021

The American Journal of Occupational Therapy

View full text Add to dashboard Cite

Importance: Knowledge of unmet school participation needs for students with craniofacial microsomia (CFM) can inform decisions regarding intervention support. Objective: To compare students with and without CFM on school participation (i.e., frequency, involvement, desire for participation to change) and caregivers’ perceptions of environmental support for participation in occupations. Design: Cross-sectional design using secondary analyses of a subset of data. Setting: Multisite cohort study. Participants: Caregivers of students with CFM ( n = 120) and of students without CFM ( n = 315), stratified by history of education- and health-related service use. Outcomes and Measures: School participation and environmental support, obtained with the Participation and Environment Measure–Children and Youth. Results: Significant group differences were found in frequency of school participation (effect size [ES] = −0.38, 95% confidence interval [−0.64, −0.12], p = .005), level of involvement (ES = −0.14, p = .029), and desired change ( p = .001), with students with CFM exhibiting greater participation restriction than students without CFM and no history of service use. No statistically significant group differences were found in environmental support for participation in the school setting. Item-level findings showed statistically significant higher desire for participation to change in three of five school occupations (odds ratio = 1.77–2.39, p = .003–.045) for students with CFM compared with students without CFM and no history of service use. Conclusions and Relevance: The results suggest that students with CFM experience restriction in participation at school. What This Article Adds: Students with CFM may benefit from targeted school-based interventions to optimize their inclusion.

show abstract

“…These study questions expand on their reports of overall healthcare and psychosocial experiences. 23 The nuanced perspective of patients and their families reflects the growing recognition of the importance of including patient reported outcome measures and integrating their feedback in ongoing quality improvement in clinical practice. 24…”

Section: Introductionmentioning

confidence: 99%

In Their Own Words: Caregiver and Patient Perspectives on Stressors, Resources, and Recommendations in Craniofacial Microsomia Care

Johns

Luquetti

Brajcich

et al. 2018

Journal of Craniofacial Surgery

Self Cite

View full text Add to dashboard Cite

This study describes stressors, resources, and recommendations related to craniofacial microsomia (CFM) care from the perspective of caregivers of children with CFM and adults with CFM in order to inform improved quality of healthcare delivery. A mixed method design was used with fixed-response and open-ended questions from an online survey in English. The survey included demographics, CFM phenotypic information, and items about CFM-related experiences across settings. Themes were identified by qualitative analysis of responses to open-ended questions. Respondents (N = 51) included caregivers (n = 42; 90% mothers) and adults with CFM (n = 9; 78% female), who had a mean age of 45±6 years. Most children were male (71%) with an average age of 7±4 years. Respondents were primarily white (80%), non-Hispanic (89%), from the United States (82%), had a college degree (80%), and had private health insurance (80%). Reflecting the high rate of microtia (84%) in the sample, themes centered on the impact of hearing difficulties across settings with related language concerns. Negative social experiences were frequently described and school needs outlined. Multiple medical stressors were identified and corresponding suggestions included: providers need to be better informed about CFM, treatment coordination among specialists, and preference for a family-centered approach with reassurance, empathy, and clear communication. Advice offered to others with CFM included positive coping strategies. Overall, caregivers’ and patients’ responses reflected the complexity of CFM treatment. Incorporating these perspectives into routine CFM care has the potential to reduce family distress while improving their healthcare.

show abstract

Healthcare and psychosocial experiences of individuals with craniofacial microsomia: Patient and caregivers perspectives

Cited by 21 publications

References 20 publications

Behavioral Adjustment of Preschool Children With and Without Craniofacial Microsomia

Behavioral Adjustment of Preschool Children With and Without Craniofacial Microsomia

Caregiver Perspectives on School Participation Among Students With Craniofacial Microsomia

In Their Own Words: Caregiver and Patient Perspectives on Stressors, Resources, and Recommendations in Craniofacial Microsomia Care

Contact Info

Product

Resources

About