Parentalidade, participação e suporte social : dando voz aos adolescentes com paralisia cerebral e às suas mães

Abstract

Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. Research has indicated that children and adolescents with disability have difficulties related to their social participation. However, family has been indicated as an important factor that could optimize the social participation of children and youth with CP. Though, it is still being a challenge to understand the factors of the family that collaborates to the social participation of adolescents with CP. Hence, this study aimed to better understand about the social participation and the social support of adolescents with CP and about the parenting of their parents. Further specific objectives were raised: to identify the perspectives of adolescents about the parenting practices that they received; to understand the perspectives and wishes of the adolescents about their future; and to identify the parents expectative about the challenges related to parenting their children with CP. The participants of this research were 7 adolescents with CP aged from 11 to 17 years old and their mothers. For collecting data, two semi-structured interviews scripts were applied, in addition, the GMFCS - Gross Motor Function Classification System the Family Report Questionnaire, and the Social Support Appraisals (SSA) were utilized. The interviews were analyzed qualitatively using the Collective Subject Discourse technique. Results from GMFCS and SSA were analyzed according to instructions of each instrument. As major results, the present research showed that in general, mothers understand that their parenting practices are positive and contribute to the social participation of their children. However, some mothers identified that the social participation of their children was restricted to the school context, whereas other mothers reported that the social participation of their adolescents included the engagement in activities in the community. Furthermore, mothers discussed about their worries on the independence and autonomy of their children with CP, and how to help them to establish relationships in a mature way. However, some difficulties in parenting were also identified such as the differences between the mother’s and father’s parenting style, which may result in conflicts. Mothers also reported difficulties in properly stimulating the participation of their children and expressed difficulties in teaching their values and principles to their children. From the perspective of the adolescents with CP, results indicated that they enjoy and try to engage in various leisure activities, where they seek for their social participation with friends in different contexts, such as restaurants, church, school, in others. Furthermore, results on the perspectives of the adolescents about their future revealed the importance that they attributed to progress in the academic studies, establishing a professional carrier and having a family. It is hoped that this study contributed to the understanding of parenting of families of youth with CP and about the consequences of them practices to the social participation of these youths. It is also wished that this study can provide elements contributing to best understand about how the social participation of youth with CP is established and about what they expect for their future. It is hoped that this study can adds to the positive efforts of appropriately implementing practices of Occupational Therapists and other rehabilitation professions which focuses on the participation of this population.