Ressignificações e perspectivas do vivido : experiência de cuidado cotidiano ao filho com a rara síndrome de Schinzel-Giedion

Abstract

In this study, we include the experience of a family whose son was born with a very rare syndrome called Schinzel-Giedion (SGS), which is congenital, neurodegenerative, and has a gloomy prognosis. We aimed to understand the family experience of care in the chronic illness from rare syndrome. This is a comprehensive study where, assuming that people experience life events in a very personal way, we opted for the “study of situation”. The participating family is composed by Bruno and Jéssica, young couple, twenty-four years old, parents of Ricardo, one-year-old baby. The methodological strategies included the Life History performed by In-Depth Interview and Observation. The collection of information took place between June/2015 and January/2016, and the empirical material was organized in a Research Journal, thereby comprising our analytical corpus. We held a thorough reading by highlighting the axes of meaning of the family experience: a) caring for in the situation of rare illness: family experience and problem-solving ability of health services and b) new meanings and perspectives of the lived in the experience of having a son with the rare Schinzel-Giedion Syndrome. The matrix research to which this study is connected has ethical approval no 951.101/CEP–HUJM/2015. Aware of the short life expectancy imposed by SGS, the family keeps an extremely active stance by undertaking pathways that go even beyond the geographical boundaries of the state where they live in an attempt to achieve some help to provide the best care for its child. The element ‘time’ gains a special importance because it hosts the life of Ricardo and, also, holds the suffering of uncertain tomorrows imposed by the very rare SGS. The family enjoys and enhances this life cycle of the son, both to expand it to the extent to which it is possible and to offer the best care “of, in and for” its life. The expectations of Jéssica and Bruno in relation to the parenthood have obtained a new meaning throughout time, and the young couple is still learning to be a family within the possible normality of Ricardo, when caring for those inherent needs of a baby and also those imposed by SGS. They keep living ‘with’ and ‘for’ the son, intensively enjoying the “here and now”, in such a way as to expand the present, and the future is comprised by the projection of what they experience in the current time. At last, we can understand the notion of care that encompasses and integrates the needs of the beginning of human life, which is a notion that is driven and extended by the caring for during the illness, when promptness and speed are essential elements. This leads us to think about the conception of time in a confluence in which past and future can reflect the present, and it is an inexhaustible source of the lived, through which the life incessantly flows. The health services and professionals need to consider the differentiated notions of time and temporality, thereby rethinking the protocol and strictly formalized times that, as a general rule, drive them to the actions and the organization of care-related processes, in an effort to encompass the temporality of the lived and of the caring for children with other normalities.