Exploring Concerns of Caregivers in Tamil Nadu, India on the Birth of a Child With CLP Using Focus Group Discussions

ObjectiveTo explore the community beliefs and immediate concerns of the caregivers at the birth of a child with a cleft lip and palate (CLP).DesignThis study is ethnographic research using Focus Group Discussions (FGDs).SettingFGDs were conducted in the DDRC setup across the districts of Tamil Nadu.ParticipantsA total of 15 FGDs were conducted. One hundred sixty-eight caregivers from low- to middle-income families registered in early intervention programs participated in this study.ResultsThe verbatim transcripts from the FGDs helped us capture the essence of community dynamics related to the congenital cleft condition. It captures caregivers' perceptions, beliefs, and attitudes on the birth of a child with a CLP. The verbatim data were analyzed for major themes and subthemes to explore the community's concerns and beliefs. It was quite evident that accepting the children with CLP was very difficult for all the caregivers and the community. Although many taboos, superstitions, and acceptance of consanguinity were prevalent, the community also emphasized the importance of a gestational scan and comprehensive information in prenatal counseling. The interesting finding from this study was that the caregivers expected more help from health-care professionals and policymakers. These findings would raise awareness and bridge the gap between policymakers and the target population.ConclusionThe results obtained will raise awareness to guide healthcare professionals and policy makers to address parental queries and help these caregivers overcome these challenging situations efficiently.