Caregivers’ perception of speech and language status and related needs in children with cleft lip and palate

Background and Purpose: Comprehensive management for communication disorders in individuals with CLP was provided in a community based program in two rural districts in Tamilnadu, India. This program provides services at the community to empower the families about CLP and treatment options. Objective: To document the caregiver perceptions’ of communication status and needs in children with repaired CLP. Method: Six Focus Group Discussions were conducted in Thiruvannamalai and Cuddalore districts in Tamil Nadu, India. Participants were 55 Caregivers of children (5–12 years of age) with repaired CLP. Results: Most participants were concerned about their child's communication and few expressed concerns about specific errors in speech observed in their children. The caregivers recognized the need for and were willing to avail speech correction services. The focus group discussions highlighted some factors that need to be considered while planning a service delivery program for speech correction. The caregivers’ expressed inability to independently carryout home training programs attributing it the lack of cooperation from their children. However they were open to receiving services if it was logistically convenient. Conclusion: This study provided the caregiver perceptions’ of needs relating to communication in children with CLP. These need to be incorporated in the existing program to develop a model for speech intervention that would be feasible, sustainable and have good compliance.