Family of people with spina bifida: goals and strategies

Résumé 0

We aim to describe the goals and strategies of action that parents have established for their child and young adults with spina bifida. Participants were 17 families who answered an online questionnaire. The instrument included topics about sociodemographic characteristics and the following questions: "How do you imagine your son's or daughter's life in the future?” and "What do you think he or she needs to develop these characteristics?". Data of socialization goals were analyzed according to the categories: Self-improvement, Self-control, Emotionality, Social Expectations and Good Behavior. Data of strategies of action were classified in the categories: Self-centered, Context-centered and Person-centered. Main results showed that the most valued socialization goal is self-improvement which is similar to other German families, suggesting that the disability condition does not interfere in the culturally shared beliefs. In order to achieve their goals, parents use, primarily, the self-centered strategy, which represents parents want to serve as a model to their son or daughter with spina bifida. In addition, it was possible to identify that those mothers and fathers also tend to combine different strategies in order not only to maximize the developmental gains, but also to obtain social support in the parental role. In fact, parents of people with spina bifina should be supported in their needs since disability condition seems to be the major factor in the establishment of goals and strategies.