Cuidado familiar de adolescentes com necessidades especiais de uma associação de pais e amigos excepcionais

Abstract

The objective was to describe, how family care is developed for adolescents living with special health needs, and attending an Association of Parents and Friends of the Exceptional (APAE). This is a qualitative, descriptive, and exploratory research developed with family members of adolescents from an APAE located in the northwest of Rio Grande do Sul. Data were collected through semi-structured interviews and soon after submitted to content analysis. The results showed that these adolescents present a diversity of care developed especially by the women of the family. The man is delegated the role of financial provider and so often ends up not participating in care with the teenager. It was also observed that the family caregiver often ends up neglecting his own care, which generates a family burden. Another emerging focus of the study concerns the adolescent support networks, which are extremely important for care and also the invisibility of nursing within the care network. The discovery of the disease by the family is also another highlight, as it causes fear and uncertainty. It is concluded that family care is mostly exercised by the maternal figure who renounce their personal and professional lives in favor of adolescents with special health needs. The invisibility of nursing care to adolescents and the care network denotes the weaknesses in the bond, care and health education for the continuity of care at home.