A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families’ treatment experiences or the impact of CFM on caregivers’ well-being. To address this gap, the NIH-funded ‘Craniofacial microsomia: Accelerating Research and Education (CARE)’ program sought to develop a conceptual thematic framework of caregiver adjustment to CFM. Design: Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (n = 62) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified. Results: Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of “high” and “low” points throughout their journey and shared their priorities for future research. Conclusions: Narrative interviews provided rich insight into caregivers’ experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward

“I can't provide what my child needs”: Early feeding experiences of caregivers of children with craniofacial microsomia

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 children with CFM (n=34) 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

Psychosocial experiences of Spanish-speaking parents of children with craniofacial microsomia

Craniofacial microsomia (CFM) and microtia psychosocial research in the U.S. is primarily with English-speaking participants. Given that 19% of the U.S. is Latino and there is a higher prevalence of CFM in Latino populations, this study aims to describe psychosocial experiences related to CFM among Spanish-speaking Latino caregivers to better inform healthcare. Narrative interviews (mean 73±17 minutes) were completed in Spanish with parents of children with CFM aged 3-17 (mean age 10.8±4.8 years). Transcripts were analyzed using quantitative linguistic analyses and reflexive thematic analysis. Participants (N=12) were mostly mothers (83%) who had immigrated to the U.S. and had low socioeconomic status. Based upon analysis of grouped word counts, participants spent approximately half of their narratives discussing the first two years of their child’s life. Themes selected based on U.S. Latino sociodemographics and cultural values included the Impact of Language, Healthcare Challenges, Supportive Healthcare Experiences, Caregiver Coping with CFM, Family Roles, and Addressing Social Implications of CFM. Results highlighted that the first years of care are of critical importance to parents and suggest this is an optimal time to focus education and support services for families. Additional treatment suggestions include providing interpretation and informational materials in Spanish, addressing care barriers, supporting familial and child coping, accounting for the role of extended family, and helping address social concerns. Ongoing research with Latino families can further assist in guiding culturally sensitive CFM healthcare

Early experiences of parents of children with craniofacial microsomia

Objective: To describe the early healthcare experiences of parents of children with craniofacial microsomia (CFM),a congenital diagnosis often identified at birth.Design: Qualitative descriptive.Setting: Homes of participants.Participants: Parents of 28children with CFM from across the United States.Methods: We interviewed participants(27 mothers individually and one mother and father together) via telephone or teleconference and used reflexive thematic analysis to describe themes in the early health care experiences of parents of children with CFM. Results: Participants’ narratives included detailed recounting of their birth and early care experiences.There were two overarching themes. The first overarching theme, Stressors, included four subthemes that represented difficulties related to emotional reactions and negative experiences with health care providers.The second overarching theme, Finding Strength, included four subthemes that represented participants’ positive adjustment to stressors through independent information seeking about CFM, adaptive coping, positive experiences with healthcare providers, and drawing on external supports. Conclusion:Early experiences were often described as challenging for parents.Findings have implications for improving early care, including increasing open and supportive communication by healthcare professionals, expanding access to CFM information, screening for parental mental health concerns, strengthening parental coping, and linking families to resources, such as reliable online CFM information and early intervention programs