| Summary: | Objectives: To identify the limitations faced by the hemophiliac child, according to his/her parents, and how they deal with these limitations, and to verify how parents approach the problem of hemophilia with the child as well as their strategies for disciplining that child and their nonhemophiliac children. Methods: An exploratory descriptive research study with a quantitative approach carried out with 20 parents of hemophiliac children seen at the ambulatory of a medium size public hospital in the city of São Paulo. The data were collected by means of a structured interview, using a form with open-ended and closed questions. Rresults: All the parents (20; 100%) reported talking to their children about hemophilia, especially as to the definition of the disease (19; 46,35%) and the activities that should be avoided (eight; 19.50%). Most of them (17; 85%) also reported talking about hemophilia with their other children. Eighteen parents (90%) restricted participation in sports and physical activities for their hemophiliac child, including at school: 11 (55%) prohibit participation in physical activities, and 12 (60%) ban extracurricular activities. All the parents also reported raising the subject of their child’s hemophilia with the educational professionals at their child’s school. As to discipline, half of them (ten; 50%) use different strategies for disciplining their hemophiliac and non-hemophiliac children. Cconclusions: All the parents are concerned with discussing the subject of hemophilia with the child, his/her siblings, and teachers at school, imposing limitations especially as to participation in sports and/or physical activities. Differences were noted as to the strategies used by the parents for the discipline of their hemophiliac and non-hemophiliac children.
|
|---|
