Embarking on a Treatment Journey: Experiences of Caregivers of Young Children With Craniofacial Microsomia

Abstract

Caregiver psychosocial adjustment can be impacted by their children's early treatment for craniofacial microsomia (CFM). A deeper understanding of caregiver early experiences is needed to advance family-centered clinical care. This study aimed to describe the range of caregiver experiences of CFM care for their young children to inform recommendations for providers. As part of the "Craniofacial Microsomia: Accelerating Research and Education" (CARE) program, health histories and narrative interviews were completed with a national sample of US caregivers (N=42) of children with CFM aged 3 to 17 years (mean=10.1, SD=4.5). Interviews (average 71 min) were in English (n=30) or Spanish (n=12) and primarily with mothers (93%). Thematic analysis was used to describe early care experiences. By age 3, 91% of children were diagnosed with hearing loss, 64% had participated in early developmental services, 38% had undergone at least one surgery, and 24% used hearing aids. Caregivers' experiences fit within themes of: (1) Burden of Care; (2) Adaptation; (3) Perceived Quality of Care; (4) Child's Physical Health; and (5) Early Surgical Interventions. CFM care in early childhood presented challenges for caregivers, which may be mitigated by health care providers reducing burdens of care, coordinating care, building trust, increasing CFM and hearing education, instilling hope, assisting with hearing aid access, referring to early interventions, screening for caregiver distress, linking caregivers to support services, promoting coping and social support, and preparing families thoroughly for surgeries.

Keywords: Caregiver experiences; Goldenhar syndrome; craniofacial microsomia; early childhood; hemifacial microsomia; microtia; qualitative analysis.