Cuidado de crianças com demandas medicamentosas na perspectiva de familiares/cuidadores

Abstract

Children with special health care needs - CSHCN are characterized by having a diversity of health care, among them, stand out the medical care. In this process, we highlight the presence of family/caregivers who perform daily care through adaptation and family restructuring in favor of care. The aim of this study was to identify how care is provided by the family member/caregiver of CSHCN with medication demands. This is a field research, with qualitative, descriptive and exploratory approach. The study involved 15 family members/caregivers of CSHCN. Data were collected through semi-structured interviews, recorded on digital media and submitted to content analysis. The results revealed that the care for children with special health needs which present medicine demands is exclusively female, where caregivers learn to take care of them on their own and sometimes have the support of other family members. The CSHCN make extensive use of health services, and this study emphasized APAE as the main institutional network. For support and care the CSHCN, some caregivers stopped developing their daily activities such as recreation, work and studies to dedicate themselves to the care of CSHCN. Here we highlight the importance of nursing and support networks to meet the care demands of CSHCN and their family in the community. It is suggested that nurses develop health education groups and spaces for the knowledge exchange, as well as preparing the family for hospital discharge and especially demystifying the socialization and inclusion taboos of CSHCN.