|
|
Caring for a Girl with Rett Syndrome in the Family
Pěnková, Michaela ; Němec, Zbyněk (advisor) ; Zemková, Jaroslava (referee)
The diploma thesis deals with the care of a girl with Rett syndrome (RTT) in the family. The six main chapters and individual subchapters present the issues of Rett syndrome, the family of a girl with RTT and area of care for a girl with RTT. The first chapter of the diploma thesis presents the fundamental issues related to Rett syndrome with an outline of the history, definition, causes and manifestations. The prevalence and incidence, diagnosis and manifestations of RTT are presented. The following subchapters are devoted to the individual stages of Rett syndrome, their course and the issue of RTT in boys. The second chapter focuses on the issue of the family caring for a child with a disability, presents a definition of the family and the stages of acceptance of a child with a disability. The following subchapters present the complex care for a child with a disability and present an overview of possible forms of support for families of children with disabilities. The third chapter deals with selected areas of care that parents of girls with RTT often have to provide. The individual subchapters include the following areas such as hygiene, sleep, diet, mobility, communication and health care. The fourth chapter is the research survey itself, conducted qualitatively. The research aimed to find out...
|
|
|
The attitude and the role of siblings of children with strong mental handicaps in a family.
TŮMOVÁ, Gabriela
This dissertation is focused onthe role of siblings of children with severe health disability and the position they take within a family. The main objective was to find out what role and position healthy children and their siblings with disability take with each other. I decided to focus my main research questionon "If & howthe role and position of a healthy sibling towards a sibling with a severe health disabilitytransformed during adolescence". The theoretical part of the dissertation focuses on the family, its function, upbringing styles and types of contemporary families. Furthermore I also focused on health disability. I defined a physical and mental disability, identified the difference between congenital disability and disability gained during life. I also looked in depth into cerebral palsy. Apart from this disability I also briefly looked into neuromuscular and other muscular diseases and orthopaedic disability. The next part of my theoretical study concerned a family with a disabled child. Here I focused on the very important process of coming to terms with the birth of a child with disability as described by well-known Swiss- American doctor Elisabeth Kübler-Ross. Last but not least I looked at siblings of a child with a disability, their inter-relationship withthe disabled child and how the child copes with their impairment. Considering the number of respondents and openness of the questions I have opted for qualitative research. This consisted of eight respondents whom I know personally and were willing to participate in my research. Data collection took place by means of prepared questionnaires that I sent by e-mail. All respondents were made aware ofthe topic of my dissertation, its objective, research question and that anonymity would be provided on the information given in questionnaires about which some of them had inquired. I opted for questionnaires because some of the respondents were currently overseasor due to various other reasons were not able to meet in person. I asked open questions hence, without the option of choosing an answer. That way the respondents had completely unrestricted opportunity to express their opinion. This dissertation could be beneficial to the siblings of children with a severe health disability themselves who could see this issue from theperspective of other siblings. It could also help parents of children with a health disability to realise how this issue is perceived by a healthy sibling.
|
guest ::
