Finding community solutions to improve access and acceptance of cataract surgery, optical correction and follow up in children in Malawi

Abstract

Background: Late presentation to the hospital and poor post-operative follow-up after cataract surgery are associated with complications which compromise visual recovery and perpetuate disability among children with cataract. The objectives of the study were to understand the social, psychological and physical consequences of blindness in families, to understand why some parents with blind children access services and others do not, and to explore factors related to decision making within families that prevent access to health care services. Methodology: A mixed methodology quantitative and qualitative community study of blindness in children conducted in southern Malawi to compare “Doers”: families with blind children from the same communities who had attended cataract surgical services with “Non-doers” versus families with blind children from the same communities who had not attended services. Individual, family, community socio-cultural and economic characteristics and other qualitative data on knowledge, perceptions, and beliefs were recorded and analyzed thematically, based on grounded theory. Results: A total of 53 in-depth interviews of parents; 21 in-depth interviews of children; 15 focus group discussions with community members; 62 children’s clinical eye examinations, and 4 case studies were conducted over the study period. Doer families were likely to have a reliable source of income, have better housing and live closer to health centres than non-doer families. Visual acuity among doers was better than non-doers. Conclusion: This research has highlighted reasons why some families who have children with cataract are likely to be delayed to seek surgical intervention. Comprehensive counseling modules targeting such families need to be developed to increase acceptance and access to children’s cataract surgical services.