Caregivers’ Perception of Cleft Lip and/or Palate During Infancy: A Qualitative Study

Objective To understand the experiences of caregivers of infants with cleft lip and/or palate (CL/P) as it relates to current and future ableism as their child grows. Design Qualitative study design utilizing semistructured interviews, thematic analysis, and descriptive phenomenology. Setting Single, tertiary-care pediatric hospital providing nasoalveolar molding (NAM) treatment alongside multidisciplinary CL/P care team. Participants Fifteen caregivers of infants (0-12 months old) with nonsyndromic complete CL/P. Interventions Not applicable. Main Outcome Measure(s) Caregiver perceptions and experiences related to facial ableism during infancy. Results Four major themes were identified: (1) caregiver experiences related to receiving a CL/P diagnosis prenatally, (2) perceived emphasis on the “fixability” of CL/P by healthcare providers, family, and friends, (3) concerns about their child's future social acceptance, and (4) the increased caregiving burden associated with CL/P compared to their non-CL/P peers. Conclusions Caregiver experiences during infancy for patients with CL/P extend far beyond medical and surgical concerns and are largely informed by early perceptions of facial differences and anticipation of facial ableism. By understanding caregiver experiences, multidisciplinary CL/P teams can better support patients and families, as early as prenatally, through antiableist approaches to care, clinical practice, and policy.