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Subacute sclerosing encephalitis, its impact on the individual and the family
PLCHOVÁ, Barbora
In the bachelor thesis I tried to find out (on the basis of qualitative research, which was made in the form of questioning method and through biographical interview) how the subacute sclerotizing encephalitis influences the social functioning of an individual and a family. I divided the collected data into categories on the basis of groups resulting from the interviews. The research set consists of four individuals, which are members of a family, where a boy suffering from subacute sclerotizing encephalitis grew up. Three women and one man. My thesis is divided into theoretical part, which is then further divided into a part describing the subacute sclerotizing encephalitis and a part describing the care for dying child and the role of a social worker in this problematic. In the second part of the thesis I deal with the research of the influence of subacute sclerotizing encephalitis on the social functioning of an individual and a family. My aim was to bring near to the community what all comes with this disease. Give them the information about how this illness progresses and what are its symptoms. Moreover, I also wanted to show what all brings life with a child suffering from fatal disease and what possibilities the families have nowadays. From the results of my research came out, that the whole life changes in the family where a fatally ill child grows up. Every bad influence on the family comes out of an incorrect treatment process, which is a consequence of the lack of knowledge about the disease. Due to the circumstances not even the family was able to recognise the symptoms. Only when the symptoms escalated, the doctors came to a suspicion that it could be a fatal disease. The examination results were clear - Subacute sclerotizing encephalitis. This finding swept almost every member of the family. Due to the worsening of the health condition the patient had to be relieved of school attendance and after a short time period also permanently hospitalized. Due to the absence of specialised institutions 25 years ago the patient had to be hospitalized at the psychiatric department of the hospital in Opařany. The biological father of the patient took a very interesting stand to the situation he completely distanced himself from the patient and from his sister as well. However, all the needed care was absolutely compensated by the rest of the family. After seven years the health condition of the patient significantly worsened, which then lead to malnutrition and pneumonia. At the beginning of 1993, the patient, aged 19 years, died. This whole incident lead to breakup of the relationship between patient's mother and grandmother, as well as breakup of the relationship of daughter and father. Thanks to the solidarity of the rest of the family was this difficult situation overcome. After the death of her son, the mother got more attached to her two daughters. With this thesis I would like to help the laic community to get more familiar with this disease and what could happen in a family where a child with this diagnose grows up.
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