Alexis L. Johns

Qualitative Analysis of the Role of Culture in Coping Themes of Latina and European American Mothers of Children With Cancer

It has been well established that mothers of children diagnosed with cancer experience high levels of distress. Latina mothers may be at risk for higher levels of distress related to language barriers, cultural factors, and economic, immigration, and acculturation stressors. Despite the increasing US Latino population, few studies have examined the role of culture within pediatric oncology, including how mothers cope with their childs cancer. This study used qualitative analysis of 24 sessions from 3 Latina and 3 European American mothers of children recently diagnosed with cancer. The session transcripts were divided into a total of 2328 thought segments that were then analyzed for themes using a collaborative iterative process. Analysis identified 9 shared coping themes that included, with some variations: gathering information, professional help-seeking, activities, problem solving, positive thinking, present orientation, reframing, avoidance, and religion. Three themes were culture specific: only European American mothers discussed compromise, whereas normalization and perspective taking were unique to the Latina mothers and suggest that the cultural value of simpatía influences coping. Clinical and research recommendations are discussed.

Teasing in younger and older children with microtia before and after ear reconstruction

Abstract This study prospectively measured teasing and emotional adjustment before and after ear reconstruction in younger and older children with microtia. Participants with isolated microtia (n = 28) were divided into two groups by age at surgery, with a younger group aged 3–5 years (n = 13) with a mean age of 4.0 (0.71) years at the time of surgery and an older group aged 6–10 years old (n = 15) with a mean age of 7.87 (1.30) years. Children and their parents were interviewed preoperatively and a year after surgery about teasing and emotions about their ear(s). Teasing began between the ages of 2.4–4.8 years. A third of the younger group and all of the older group reported preoperative teasing. Before surgery, the older group reported higher rates of negative emotions about their ear(s) and teasing was correlated for all ages with feeling sad, worried, and mad about their ear(s). After surgery, teasing and negative emotions significantly decreased with increased happiness about their ear(s). Postoperative teasing was correlated with trying to hide their ear(s). There were significant interactions from before to after surgery based on surgery age for frequency of teasing, sadness, and feeling mad, with the older group showing relatively greater change postoperatively. Teasing and negative emotions about their ear(s) decreased for all ages after surgery, with a potential protective factor seen in younger surgery age.

310 Predictors of Preoperative Developmental Delay in Nonsyndromic Sagittal Craniosynostosis.

Patients with nonsyndromic sagittal craniosynostosis (SC) were previously thought to have normal neurocognitive development; however, a pattern of mild delays has been described in these patients. We reviewed our patients with SC to identify potential perinatal risk factors that serve as indicators for subsequent developmental delay.Nonsyndromic patients with SC (n = 66) completed preoperative Bayley Scales of Infant and Toddler Development (III) with a single examiner between August 2009 and April 2015. Patients were classified as having no delays (n = 52; 79%) or having delays (n = 14; 21%) below the ninth percentile in one or more area(s) of development. Mean differences were compared using Multivariate Analyses of Variance.Participants were mostly male (79%) and aged 2 to 12 months at testing. There were no group differences in sociodemographic categories. Prenatally, patients in the group with delays vs the group with no delays had lower gestational age in weeks (36.9 vs 39.2, P <.000) with higher rates of gestational diabetes (36% vs 6%, P =.002) and premature rupture of membranes (14% vs 0%, P =.006). There were no group differences in maternal hypertension, maternal age, breech position, preterm labor, emergency cesarean delivery, or failure to progress. At birth, patients with delays had lower birth weight in grams (2982 vs 3359, P =.041), higher rates of respiratory distress (29% vs 4%, P =.005), additional medical diagnoses (57% vs 15%, P =.001), and longer NICU stays in weeks (1.6 vs 0.2, P =.001). There were no differences for infection, hyperbilirubinemia, age at SC diagnosis, or subsequent surgery age.Patients with SC with delays in development had a lower gestational age and birth weight with more prenatal and birth complications. Further studies are required to validate appropriate follow-up and genetic testing in these groups.INTRODUCTION Patients with nonsyndromic sagittal craniosynostosis (SC) were previously thought to have normal neurocognitive development; however, a pattern of mild delays has been described in these patients. We reviewed our patients with SC to identify potential perinatal risk factors that serve as indicators for subsequent developmental delay. METHODS Nonsyndromic patients with SC (n = 66) completed preoperative Bayley Scales of Infant and Toddler Development (III) with a single examiner between August 2009 and April 2015. Patients were classified as having no delays (n = 52; 79%) or having delays (n = 14; 21%) below the ninth percentile in one or more area(s) of development. Mean differences were compared using Multivariate Analyses of Variance. RESULTS Participants were mostly male (79%) and aged 2 to 12 months at testing. There were no group differences in sociodemographic categories. Prenatally, patients in the group with delays vs the group with no delays had lower gestational age in weeks (36.9 vs 39.2, P < .000) with higher rates of gestational diabetes (36% vs 6%, P = .002) and premature rupture of membranes (14% vs 0%, P = .006). There were no group differences in maternal hypertension, maternal age, breech position, preterm labor, emergency cesarean delivery, or failure to progress. At birth, patients with delays had lower birth weight in grams (2982 vs 3359, P = .041), higher rates of respiratory distress (29% vs 4%, P = .005), additional medical diagnoses (57% vs 15%, P = .001), and longer NICU stays in weeks (1.6 vs 0.2, P = .001). There were no differences for infection, hyperbilirubinemia, age at SC diagnosis, or subsequent surgery age. CONCLUSION Patients with SC with delays in development had a lower gestational age and birth weight with more prenatal and birth complications. Further studies are required to validate appropriate follow-up and genetic testing in these groups.

A Support Group for Caregivers of Children with Craniofacial Differences

ABSTRACT Caregivers of children with craniofacial differences (CFD) experience psychosocial stressors; however, few groups are described for this population. The authors outline an eight-session group and qualitative analysis of caregivers’ experiences. The majority of participants (n = 100) were mothers (76%) of children who were female (75%) and identified as Latino (79%). Children’s mean age was 10.6 (SD = 2.8) years, and they were born with cleft lip/palate (56%) along with other CFD diagnoses. Themes included: group appreciation (21%), mutual acceptance (18%), coping (18%), parenting skills (17%), learning (9%), resiliency (7%), empathy (4%), diagnosis information (3%), and self-care (3%). Caregivers’ reported experiences largely corresponded with group goals.

Familial Recurrence of 3MC Syndrome in Consanguineous Families: A Clinical and Molecular Diagnostic Approach With Review of the Literature

We report four individuals from two unrelated consanguineous families with 3MC syndrome. In the first family, chromosome microarray data revealed that the two affected sisters, born to first-cousin parents, shared a unique homozygous C-terminal deletion in the COLEC11 gene. Two affected brothers from a second family, also born to first-cousin parents, shared a region of homozygosity that included the second gene known to cause the 3MC syndrome, MASP1. We discuss the diagnostic approach of craniofacial disorders born to consanguineous parents and highlight a literature search and reference a helpful dysmorphology solution powered by FDNA (Facial Dysmorphology Novel Analysis) technology.

Neurodevelopment of Infants with and without Craniofacial Microsomia

Objectives To determine whether infant cases with craniofacial microsomia (CFM) evidence poorer neurodevelopmental status than demographically similar infants without craniofacial diagnoses (“controls”), and to examine cases’ neurodevelopmental outcomes by facial phenotype and hearing status. Study design Multicenter, observational study of 108 cases and 84 controls aged 12‐24 months. Participants were assessed by the Bayley Scales of Infant and Toddler Development‐Third Edition and the Preschool Language Scales‐Fifth Edition (PLS‐5). Facial features were classified with the Phenotypic Assessment Tool for Craniofacial Microsomia. Results After adjustment for demographic variables, there was little difference in Bayley Scales of Infant and Toddler Development‐Third Edition or Preschool Language Scales‐Fifth Edition outcomes between cases and controls. Estimates of mean differences ranged from –0.23 to 1.79 corresponding to standardized effect sizes of −.02 to 0.12 (P values from .30 to .88). Outcomes were better among females and those with higher socioeconomic status. Among cases, facial phenotype and hearing status showed little to no association with outcomes. Analysis of individual test scores indicated that 21% of cases and 16% of controls were developmentally delayed (OR 0.68, 95% CI 0.29‐1.61). Conclusions Although learning problems have been observed in older children with CFM, we found no evidence of developmental or language delay among infants. Variation in outcomes across prior studies may reflect differences in ascertainment methods and CFM diagnostic criteria.

Psychosocial Functioning of Children in a Craniofacial Support Group

Objective: To describe psychosocial functioning before and after participation in support groups for pediatric patients with craniofacial diagnoses and their families. Design: Baseline and postgroup outcomes and comparison to test norms. Setting: Urban children’s hospital. Participants: Patients (N = 138) were 54% female, primarily Latino (83%), aged 7 to 18 years (mean = 10.4, standard deviation = 2.8), and had public insurance (72%). Patients had isolated cleft lip/palate (54%), craniofacial syndromes (19%), craniofacial microsomia/microtia (14%), or other diagnoses (12%). Caregivers (n = 138) were mostly mothers (80%). Intervention: Support groups focused on peer normalization, social skills, and coping for patients with craniofacial diagnoses. Main Outcome Measure: Selected scales of the Behavior Assessment System for Children–Second Edition completed by patients and caregivers (51% Spanish; 49% English). Results: While in the average range, caregivers reported significantly higher baseline clinical concerns and patients and caregivers reported lower positive scales compared to test norms. Postgroup, patients reported significantly lower social stress than peer norms. Caregivers reported higher postgroup clinical scales, but no differences from test norms in the positive scales. In comparing pre to postgroup means, all but one scale showed significant improvement. The largest effect sizes were for higher self-reported self-esteem (d = 0.49) and lower caregiver-reported depression (d = 0.54) in their children. Conclusions: Although greater clinical concerns were reported compared to test norms, baseline and postgroup functioning was in the average range. Patients and caregivers reported significantly improved psychosocial functioning following group participation, particularly for adaptive skills and self-esteem.

Cognitive outcomes among Latino survivors of childhood acute lymphoblastic leukemia and lymphoma: A cross-sectional cohort study using culturally competent, performance-based assessment

This study sought to characterize cognitive outcomes among Latino survivors of childhood acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LL).

Early Familial Experiences With Microtia: Psychosocial Implications for Pediatric Providers

This study focuses on early experiences of families with a child with microtia to better inform their ongoing care by pediatric providers. Parents and children (n = 62; mean age of 6.9 ± 3.9 years) with isolated microtia participated in semistructured interviews in Spanish (66.1%) or English (33.9%). Qualitative analysis of responses used open coding to identify themes. Parents reported stressful informing experiences of the diagnosis with multiple negative emotions. Parents and children generally reported not understanding microtia etiology, while some families identified medical, religious, and folk explanations. Parental coping included learning about surgeries, normalization, perspective taking, and support from family, providers, religion, and others with microtia. Family communication centered on surgery and reassurance. Pediatricians of children with microtia need to understand families’ formative psychosocial experiences to better promote positive family adjustment through clarifying misinformation, educating families about available treatment options, modeling acceptance, psychosocial screening, and providing resources.

Development of a Culturally Competent Service to Improve Academic Functioning for Latino Survivors of Acute Lymphoblastic Leukemia: Methodological Considerations:

Many survivors of childhood acute lymphoblastic leukemia (ALL) develop neurocognitive deficits that compromise academic functioning, especially in the presence of sociodemographic risk factors. The extent to which these risk factors coexist for Latino ALL survivors is not well described, but with shifts in U.S. demographics and improved survival in ALL, culturally competent interventions are needed. The Achieving Best Cognitive Successes after Cancer service was designed and implemented by a team representing nursing, medicine, psychology, and social work. Service components include neurocognitve assessment and individualized intervention for treatment-related risks and improving academic success for school-aged ALL survivors. Interventions are child-focused and parent-directed, recognizing that parents are major sources of support and advocates for their children within school systems. The service was designed to be culturally appropriate for the predominantly Latino patient population at our center, based on (1) linguistic competency of children and parents; (2) multicultural and ecological considerations for urban, low socioeconomic status, and migrant populations; (3) literacy barriers; and (4) contextual factors. This report describes methodological considerations and practice implications relevant to the design and implementation of similar culturally competent services for Latino pediatric cancer survivors.