O cuidado às crianças e aos adolescentes com condições crônicas : a perspectiva da família

Abstract

Current descriptive, exploratory and qualitative analysis aims at understanding how the family of the child/adolescent with chronic conditions exercises care in its day-to-day routine. The authors also aimed at delineating the everyday life of families of children and adolescents with chronic conditions and the impact of the diagnosis on the dynamics of family routine; describing the therapeutic pathway in the context of chronic disease in childhood and adolescence; and identifying the strength, weakness and support networks of families of these children / adolescents in the process of coping with such conditions within the family. Research collaborators were seven family caregivers who mainly took care of the children/adolescents with chronic conditions at a university hospital in the northwestern region of the state of Paraná, Brazil. Collaborators were selected by reviewing medical records from suggestions of the team to verify criteria of eligibility. Data collection occurred in the hospital sector and follow-up occurred in the homes of participating families between November and December 2012. A semi-structured questionnaire was used for the interviews, with the following guiding statement: "Tell me what life was like for your family before the discovery of the disease and how it is at present after the discovery". Interview also contained items to complete the report and achieve the aims proposed. Data of the interviews, recorded and transcribed wholly, were supplemented with notes from the researcher´s field diary and submitted to Directed Content Analysis. So that the information on the setting and social support network of families could be represented didactically and facilitate the process of understanding the contexts investigated, several genograms and ecomaps were constructed for each participating family. The project was approved by the Standing Committee on Ethics in Research Involving Human Subjects of the State University of Maringa, according to protocol 71.634/2012. Results revealed the need for greater understanding among health professionals with regard to the various contexts of care provided by family caregivers to build a less traumatic path of confrontation and rehabilitation towards regaining quality of life, providing a family-centered approach and a more welcoming attitude. Emphasis is given to the nurses as potential facilitators in family conviviality in so far as they are properly sensitized and equipped with knowledge and tools to penetrate the subjects´ sociocultural world. Acknowledging and respecting the limits of each family should be underscored, coupled to the identification of the potentialities of each member, their specific restoration processes to promote independence for home care through educational and assistential activities. The importance of qualification for work with families should also be underpinned through a sensitive and capable approach while taking into account the different social realities of this clientele by planning activities that make the life of these families less painful and more effective.