Atenção à saúde da criança com doença crônica na estratégia saúde da família: percepção da família

Abstract

Chronic disease has many implications for the child´s life and his/her family, making it a challenge for the Family Health Strategy to coordinate care for these children in view of completeness and longitudinality. This study aimed to know the family´s perception about the Family Health Strategy care and follow-up of children with chronic disease in the territory. It is a qualitative, exploratory and descriptive piece of research carried out between September and November 2015, through a semi-structured interview with the primary caregiver of children with chronic disease enrolled in the Family Health Units in a municipality of the rural area in Pernambuco. Data interpretation followed the principles of thematic analysis resulting in the construction of the following categories: Family Health Strategy´s weaknesses in the construction of comprehensive care for children with chronic disease; and potentialities in the production of care for children with chronic disease in the Family Health Strategy. Organizational barriers to access, lack of counter-reference between the levels of care, vertical integration in the organization of actions, lack of proper communication between professionals and the family, and the difficulty of reconciling the spontaneous and programmatic demand contribute to the care fragmentation for the child with chronic illness and their family. The findings of this study showed a scenario in which the families of children with chronic illnesses seek care in urgency and emergency units as first choice due to the lack of welcoming reception in primary care, revealing an unbalance with the National Health Service principles and the attributes of Primary Health Care. Care and follow-up occur satisfactorily when there is a strong bond with at least one of the team members. To overcome the contradictions and challenges in the care management for children with chronic disease, it is essential to establish partnerships between the family/staff and the community because their demands involve multiple aspects and dimensions of care management.