Assessment of Felt Needs of Caregivers of Children With Orofacial Cleft in a Low-Middle-Income Country: A Longitudinal Study.

ObjectiveTo determine the changes in felt needs of caregivers of children with cleft lip and/or palate (iCL/P) from first clinic presentation to first surgical intervention.DesignLongitudinal observational study.SettingA tertiary hospital in Nigeria.Patients, ParticipantsCaregivers of children with nonsyndromic CL/P (iCL/P) managed at a tertiary hospital in Nigeria from January 2023 to December 2024.InterventionMultiple semistructured counseling sessions.Main Outcome MeasuresCaregivers felt needs at time of first clinic presentation (T1) and at time of first surgical intervention (T2).ResultsEighty caregivers, all mothers of children with iCL/P were included. Their mean age was 31.1 ± 6.24 years. At T1, information on etiology of iCL/P, surgical intervention, feeding and potential speech challenges were considered very significant needs. Feeding was also considered a primary concern for most participants. At T2, after counseling sessions, there was a statistically significant reduction in the proportion of caregivers who considered information on surgical intervention, improvement in family and community acceptance and improvement in clinical psychology as very significant needs, while potential speech challenge became the primary concern of most caregivers. Caregivers of children below 1 month of age were also found to have significantly higher felt needs compared to those with older children.ConclusionsThe waiting period between birth and first corrective surgery can be stressful for caregivers of children with iCL/P. Repeated counseling from first clinic visit to first surgical intervention may be beneficial to caregivers and should focus on the domains of needs highlighted in this study.