Challenges and coping mechanisms among caregivers of children with orofacial cleft in a Nigerian teaching hospital: photovoice approach

Introduction: Children with Orofacial cleft (OFC) require specific support that can be challenging for their caregivers due to the various challenges associated with OFC. The use of photovoice in cleft research is scant. Thus, we used the photovoice approach to investigate the challenges and coping mechanisms of caregivers of children with OFC. Methods: We conducted community-based participatory research using the photovoice approach and focus group discussion to investigate the challenges and coping mechanisms of caregivers (36 females and two males) of children with OFC at the Lagos University Teaching Hospital Cleft Clinic, Idi-Araba, Lagos, Nigeria. Three semi-structured group discussions and one focus group discussion with 10 caregivers across the three groups. Through a day exhibition, the caregivers created awareness about OFC, shared their challenges and coping strategies with caring for a child with OFC to key stakeholders. Results: The caregivers highlighted the difficulty of caring for children with OFC, particularly feeding and financial constraints. Nasal regurgitation and the inability of children to latch on to the breast made feeding difficult. Most caregivers adopted baby formulas, but they lamented their high cost, exacerbated by either losing their businesses or resigning from work to care for the children. The major coping mechanism was resilience through faith and spirituality. Conclusion: Burden of care was a major challenge for caregivers of children with OFC. Feeding and financial challenges were major burdens, leading the caregivers to hold on to faith and spirituality for succor. Health providers must educate caregivers on sustainable feeding techniques and management of their ward's feeding to meet the required feeding expectations regarding the children's weight.