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Needs and Experience of Families with Child Suffering from Spinal Muscular Atrophy - Current Situation and Challenges for Social and Health Care System in Czech Republic
Schagererová, Iveta ; Štegmannová, Ingrid (advisor) ; Tichá, Růžena (referee)
Situation of families in which a child with spinal muscular atrophy was born, is the topic of this thesis. This rare genetic disease affects neuromuscular system of children and shortens their lives. In most severe cases the failure of respiratory functions comes in the first year of child's life. This thesis is focused on support that Czech system of social and medical services provides to families with this disease. Next, it looks into needs of these families and examine the extent to which the system is able to saturate them. Very important point in this research is also families' perception of quality of care. The research was implemented with use of qualitative methods, mostly by semi-structured interviews which followed families' journey through the system of social and medical services. Then there is a comparison of experience of families with theories, policy and other normative framework and suggestion of steps that should be taken to improve families' satisfaction with services they receive concerning the child's disease. Key words: spinal muscular atrophy, rare diseases, patient's autonomy, patient- centered care, patient journey, quality of care.
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Living will in the Czech Republic's legislation in comparison with Australian Legislation
Kocichová, Ondřejka ; Šustek, Petr (advisor) ; Salač, Josef (referee)
The aim of this thesis is a detailed description and analysis of the institute advance directives/previously expressed wishes in the Czech Republic in comparison with the Australian legislation. This thesis deals with the Queenland's legislation and the legislation of the Northern Territory. The methods used in this thesis are analyzes of legal norms and comparison of specific law regulations. Introductory chapters are focused on the principle of patient's autonomy in the Czech Republic legislation and on the protection of the person's integrity. The thesis covers not only the rules contained in the Act. No. 89/2012 Coll., the Civil Code, but also mentions rules in the Act. No. 40/1964 Coll., the Civil Code. The next chapter is focused on different patient's rights, such as the right to life and be healthy, the right to self-determination and the right to dignity. In the second part, the author focuses on the institute of advance directives/previously expressed wishes. First within the international legal framework. This chapter also underlines negative opinions about advance directives/previously expressed wishes and points out the benefits of their use in practice. Next the author focuses on the Czech legal regulations. The author does not mention only the Health Services Act, but also not...
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Needs and Experience of Families with Child Suffering from Spinal Muscular Atrophy - Current Situation and Challenges for Social and Health Care System in Czech Republic
Schagererová, Iveta ; Štegmannová, Ingrid (advisor) ; Tichá, Růžena (referee)
Situation of families in which a child with spinal muscular atrophy was born, is the topic of this thesis. This rare genetic disease affects neuromuscular system of children and shortens their lives. In most severe cases the failure of respiratory functions comes in the first year of child's life. This thesis is focused on support that Czech system of social and medical services provides to families with this disease. Next, it looks into needs of these families and examine the extent to which the system is able to saturate them. Very important point in this research is also families' perception of quality of care. The research was implemented with use of qualitative methods, mostly by semi-structured interviews which followed families' journey through the system of social and medical services. Then there is a comparison of experience of families with theories, policy and other normative framework and suggestion of steps that should be taken to improve families' satisfaction with services they receive concerning the child's disease. Key words: spinal muscular atrophy, rare diseases, patient's autonomy, patient- centered care, patient journey, quality of care.
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