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Purpose: Craniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program, this study described caregivers' early feeding experiences., Design and Materials: US-based caregivers of 34 children with CFM participated in remote narrative interviews. Two authors completed inductive thematic analysis in an iterative process until consensus was reached., Results: Caregivers' narratives outlined the inherent challenges of feeding an infant with special healthcare needs. The first theme 'Navigating Challenges and Managing Expectations' describes the distress participants experienced when they were unable to breastfeed and the negative emotional effect of switching to formula. The second theme 'Making Adaptations' outlines the methods participants tried, including breast pumps and feeding tubes. The third theme 'Accessing Support' describes participants' interactions with healthcare providers and challenges accessing feeding support. The final theme 'Growing from Adversity' recounts participants' relief once their child established a feeding pattern and the personal growth gained from their experiences., Conclusions: Caregivers reported several feeding related challenges associated with CFM, many of which negatively affected their wellbeing. Negative consequences were particularly pronounced in cases where caregivers' feeding experiences differed from their expectations. Participants identified challenges in accessing reliable feeding information and support. Despite difficult experiences, caregivers cited some positive outcomes, including increased confidence and resilience., Practice Implications: Holistic feeding information and support for families affected by CFM should be inclusive of several feeding methods to improve care delivery, child health, and the caregiver experience., Competing Interests: Declaration of competing interest No known conflicts to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Caring for patients with congenital upper limb differences (CULD) requires an understanding of unique psychosocial challenges. The study purpose was to describe the needs of children with CULD and their caregivers to develop a group curriculum. This mixed-method study included 13 mothers and one father of children with CULD (age 3 months to 14 years; mean 7.2 ± 4.3 years) using Patient-Reported Outcomes Measurement Information System Parent Proxy Reports and caregiver interviews. Patient-Reported Outcomes Measurement Information System Peer Relationships (M = 48.1 ± 10.9) and Pain Interference (M = 44.5 ± 7.5) T-scores were average with below average scores for Physical Function: Upper Extremity (M = 31.9 ± 12.1). Caregivers expressed high interest in groups to create community and mutual support covering themes of responding to questions from strangers, social and coping skills, building self-confidence, accessing resources, advocacy skills, and advice from adults with CULD. Access to a support group with a curriculum addressing CULD-related patient and family needs may improve care., Competing Interests: The authors has disclosed no conflicts of interest., (Copyright © 2024 by National Association of Orthopaedic Nurses.)

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.

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 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.

Objective: Craniofacial microsomia (CFM) is primarily characterized by underdevelopment of the ear and mandible, with several additional possible congenital anomalies. Despite the potential burden of care and impact of CFM on multiple domains of functioning, few studies have investigated patient and caregiver perspectives. The objective of this study was to explore the diagnostic, treatment-related, and early psychosocial experiences of families with CFM with the aim of optimizing future healthcare delivery., Methods: Forty-two caregivers and nine adults with CFM responded to an online mixed-methods survey. Descriptive statistics and qualitative methods were used for the analysis., Results: Survey respondents reported high rates of subspecialty evaluations, surgeries, and participation in therapies. Some participants reported receiving inaccurate or incomplete information about CFM and experienced confusion about etiology. Communication about CFM among family members included mostly positive messages. Self-awareness of facial differences began at a mean age of three years and teasing at mean age six, with 43% of individuals four years or older reporting teasing. Teasing often involved name-calling and frequent reactions were ignoring and negative emotional responses. Participants ranked "understanding diagnosis and treatment" as a top priority for future research and had the most questions about etiology and treatment guidance., Conclusions: The survey results on the healthcare and psychosocial experiences from birth through adulthood of individuals with CFM reinforce the need for ongoing psychological assessment and intervention. Healthcare provision could be improved through establishing diagnostic criteria and standardized treatment guidelines, as well as continued investigation of CFM etiology., (Copyright © 2018 Elsevier B.V. All rights reserved.)