Cotidiano da família que cuida de criança com condição crônica no domicílio

Abstract

This study aims to analyze the everyday life of families which take care of children of three to eight years of age with chronic conditions, in their own homes. It is a descriptive exploratory, qualitative study, oriented by Dialectics and the theoretical approach on sociology of everyday life, developed by philosopher Agnes Heller. The subjects of study were 15 caretakers and family members of 17 children with chronic conditions, and the scenery was these childrens residences. The field research began in the follow-up ambulatory of Belo Horizontes (Minas Gerais) Public Teaching Hospital, where the families of children in the selected age group(three to eight) who presented symptoms of childhood chronic conditions as described by Stein et al. (1993) were located. These children either presented low birth weight, and/or were born with 32 weeks or less, and/or even had to be put in an Intensive Treatment Unit. They were also evaluated with Alberta Infant Motor Scale or with Movement Assessment Battery for Children and obtained a percentile of 5 or less. All children selected for this study reside in Belo Horizonte. Data were collected through semi-structured interviews with the main responsible for taking care of each child and through observing their residences and the families everyday lives. The analysis of the data was carried out through Theme-based Content Analysis, from which four empirical categories emerged: Home care of children with chronic conditions; Institutional Social Network; Family Social Networks; Caregivers view of the children. The analysis revealed that in the act of taking care there is intense use of light technologies and reinvention of technologies which are adapted to the residences conditions and to the needs of the children, their families and the environment in which they are living. It could be noticed that the more serious was the childs condition, the greater was the dedication demanded from caregivers and also the more intense and complex were the caring procedures. The discourses of the caregivers revealed the existence of an institutional social network, constituted by Health, Education and Social Assistance services which provide support for the treatment of these children. Nevertheless, in general, this network presents itself in a disorganized, insufficient manner, usually distant from its users. In the Health Care, the caregivers itinerary varies according to their searches and to the behavior of professionals who accompany the treatment. Regarding the Educational services, this research concluded that, even though they constitute important opportunities for socialization, they have various limitations that make it difficult for them to meet these childrens needs. The caregivers stated that they receive the Benefits of Continued Services, provided by Social Assistance and have free-pass to public transportation, provided by the Ministry of Transportation. They also revealed the difficulties to obtain and to maintain such benefits. Moreover, it could be noticed that caregivers reach their family networks and religiosity for support, and that there is an absence of people to help them, which makes it harder or even impossible for them to meet certain needs. The research also emphasizes the caregivers point of view concerning the evolution of the childrens clinical state, revealing the cyclical characteristics of chronic conditions, which alternate moments of control and moments of acuteness. The research concludes that society needs to give more visibility to these children, respecting their rights such as access to health services, education, social assistance, culture, as well as adequate sports and activities of leisure that are safe and of good quality.