O cotidiano do cuidado da criança com câncer no domicílio: percepção do cuidador familiar

Abstract

The family caregivers of children with cancer, besides the usual demands of growth and development, is faced with specific demands care of the clinical condition. The child becomes more dependent on their biological needs, such as hygiene, nutrition and rest. There may be social isolation and conflict between the parents, since they are always involved with the sick child; change in maternal role, where the mother started to devote himself exclusively to the sick child; family income shall be reduced because one of the members assumes the role of caregiver. From the foregoing, we sought to answer the research question "How is the care of children with cancer everyday in the perspective of the caregiver?" Thus, this study is the object of study of the everyday care of children with cancer in the household and the objective: to describe how the child-care at home everyday with cancer in the perception of family caregivers. Methodological approach: to achieve the objective of the proposed research we used the qualitative approach of descriptive exploratory nature. Their production began after the approval by the IRB through an interview with script of open questions, respecting the ethical aspects of research with human beings of Resolution 466/12. The study included five family caregivers who reside in Chapecó and performing the care of children with cancer at home. Data analysis based on this Bardin content analysis method (2009). The results point to challenges in coping with childhood cancer, where the cancer with child care everyday in the household in the perception of family caregivers is permeated by the discovery of the diagnosis, making it a very difficult time, pain and sorrow; care of daily life requires careful attention, for all the care is due to the new clinical condition of the child; The family caregiver requires support to develop care, since it constitutes an exhaustive and exclusive activity of a single person (the primary family caregiver); from the discovery of the disease in children, the family routine needs adaptation, through a process of transformation and adaptation based on the new information emerging in the course of diagnosis and treatment. We conclude that the diagnosis of cancer in children causes a restructuring of daily activities performed by the family caregiver and the child's entire family. One of the biggest problems encountered is the lack of assistance to develop care. We suggest, health groups involving these family caregivers for the exchange of experience and establishing care strategies that minimize their difficulties.