Indian nurses’ experiences of supporting parents of children with cleft lip and palate : A minor field study

Abstract: The aim of this study was to describe the nurses’ experiences of supporting parents whose children are subjects of the Nutrition Program at Guwahati Comprehensive Cleft Care Center. Cleft lip and palate are congenital malformations of the face, where nose, lip and/or upper jaw fail to coalesce adequately in utero, creating a gap. The organization Operation Smile provides free reconstructive surgery to children with facial malformations. The Guwahati Comprehensive Cleft Care Center in Assam was founded with the knowledge that the population in this area is largely underserved in relation to the care of these patients. Children with clefts are commonly malnourished; children who suffer from moderate or severe malnutrition are prone to infectious complications associated with surgical procedures. To enhance patient safety and improve the chances of successful interventions, the Operation Smile India Nutrition Program was started in 2011. The parents of children who are enrolled in the Nutrition Program get education by trained nurses. The education contains thorough information on how children can best assimilate nutrition and how their diet should be designed at different ages. There is a lack of studies about the nurse’s experiences of supporting the parents on this matter. It is of great interest to examine nurses’ experiences of supporting the parents of children with cleft lip or palate. The study was based on a qualitative approach, and semi-structured interviews were conducted with six nurses. The interviews were transcribed and the material was analyzed with qualitative content analysis. Three categories were discerned in the transcribed material: Caring actions, Education and Creating trust. Each category is followed by a number of subcategories. The findings show that the relationship to the parents was crucial for the nurses’ supporting actions to succeed. In the discussion, certain aspects of the findings are highlighted, such as the nurses’ emotional involvement and their way of admonishing the parents. Some aspects of the nurses’ work with supporting the parents are applicable to nurses’ work with next of kin anywhere in the world.