Abstract
The purpose of this study was to clarify the changes in parents' perceptions about the burden of care after gastrostomy surgery for their children with severe motor and intellectual disabilities (SMID). Questionnaires were distributed and valid responses were received from 90 parents with children under the age of 18 with SMID who had received gastrostomy surgery in the past five years. Thematically analyzed results yielded six categories regarding the changes in parents' burden: 1) children's physical condition; 2) children's life; 3) medical care; 4) available support; 5) parents' life and 6) feeling for children. Although most parents felt that their burden was reduced, some parents felt that their burden was increased because of the development of complications or the reduction of available support. Parents' perceptions measured on a 100 mm Visual Analog Scale suggested that after their children's gastrostomy surgery, there was a significant decrease in parents' burden of care(t (89) = 8.4, p < 0.001). During the process of parents' decision making about choosing gastrostomy surgery for their children, nurse should provide information to parents about the nature of a gastrostomy and consider with the parents whether gastrostomy surgery could improve the quality of life of children and parents.
