Documenting Nutritional Status and Access to Care for Infants with Cleft Lip and/or Palate in Karachi, Pakistan: A Mixed-Methods Study

Objective: To assess the nutritional status and feeding difficulties of infants with cleft lip and/or palate (CL/P) in Karachi, Pakistan, and explore barriers in accessing healthcare. Design: Mixed-methods convergent study. Setting: A centrally located clinic in Karachi, Pakistan. Participants: Between July 2023 and February 2024, 22 infants were identified with CL/P through the Congenital Anomalies Registry project. Of these, seven caregivers provided consent and participated in the study with their infants. Interventions: A single-day study was conducted, comprising both quantitative and qualitative components. Quantitative assessments included a caregiver survey and anthropometric measurements. A qualitative focus group discussion was held to explore feeding challenges and access to care. Main Outcome Measures: Proportion of infants with malnutrition (wasting, stunting, underweight), reported feeding practices, caregiver-reported barriers to feeding and healthcare access. Results: All data was anonymized before reporting of results. Five of the seven infants exhibited poor nutritional indicators. A variety of feeding practices were reported including breastfeeding along with bottle and syringe feeding. Feeding difficulties were reported by almost all caregivers (n = 6). Specialist care was only accessed by four participants; barriers were identified across the various dimensions of access to care. Conclusions: Infants with CL/P in this urban low- and middle-income country setting face high rates of malnutrition and significant barriers to care. Nutritional assessment, feeding support, and holistic patient-centered care are critically important in improving surgical outcomes in children with CL/P. Moreover, context-specific care pathways must be made available that address the identified barriers.