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Advantages and disadvantages of membership of organizations in the Czech Association for Rare Diseases (CAVO)
Stránská, Markéta ; Navrátil, Jiří (advisor) ; Moree, Dana (referee)
In my work, I want to focus on the perceived advantages and disadvantages of membership in the umbrella organization. This topic, I will discuss from the perspectives of the member organizations. This is a specific segment associations - the patient organizations focused to patients with rare diseases. It is clear that cooperation in the umbrella organization brings advantages, but it is probable that it can also bring some disadvantages. For my work I choose the Czech Association for rare diseases. In the Czech Republic is the only organization in the civil sector, focusing exclusively on rare diseases. The goal of the master thesis is to find out the perceived advantages and disadvantages, and how it is related to the level of activity of members of the umbrella organization. Further, I want to compare the data with the theoretical literature in order that differs. Theme of umbrella in the Czech Republic is almost unexplored. There are only a few expert papers in this area. That's why I decided to focus on cooperation in civil sector (organization focus on rare diseases), which is relatively unknown. Keys words: advantages of cooperation, disadvantages of cooperation, rare disease, advocacy function, information function, umbrella organizations, patient organizations, Czech Association for Rare...
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Rheumatoid arthritis versus ankylosing spondylitis from the view of dependence to social network
JELENOVÁ, Michaela
The number of rheumatic diseases has been increasing in Europe. It is estimated that currently up to a quarter of Europeans suffer from some type of rheumatism. Rheumatoid arthritis and Bechterew's disease (ankylosing spondylitis) are chronic diseases manifested by pain, stiffness, inflammation of joints and the back. The theoretical section is divided into two parts; the first part defines rheumatoid arthritis and Bechterew's disease from the health point of view. The second part is devoted to the social area that is often neglected. The aim of the practical section of the thesis is to reveal how rheumatoid arthritis differs from Bechterew's disease in terms of the use of social assistance, as well as employability or participation in social life. For the data collection, qualitative research methods and interviewing techniques were used. The addressed respondents were patients of rheumatology consulting rooms of the Medipont Plus Ltd., who were divided into two groups ? patients with rheumatoid arthritis and those with Bechterew's disease. The research has shown that persons suffering form rheumatoid arthritis are more likely to get a disability pension than those with Bechterew's disease and they also more often use social contributions, most frequently the extra benefits for people with disabilities ? ZTP cards. This is related to a lower work capability in patients with rheumatoid arthritis compared to those with Bechterew's disease. The research results are influenced by the age of the respondents, the length of the illness, the difference in the roles of men and women and last but not least, by personality characteristics. The research has proved that patients suffering from rheumatic diseases as well as those suffering from Bechterew's disease and undergoing biological treatment are more self-sufficient due to this modern treatment. It has also been found that the respondents who are not fully self-sufficient are not informed about the possibilities to get social benefits and contributions and do not know where to get this information. The thesis could provide an impetus for the strategy when rheumatic diseases are not considered only a medical issue, because these diseases significantly influence the lives of the people affected and thus become a serious psychosocial issue.
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A client with non specific intestinal inflammations in community care
DOLEŽALOVÁ, Jana
Non specific intestinal inflammations, including Crohn´s disease and ulcerous colitis, belong to so called civilization diseases. Their cause is not completely clear. There is a common factor of both the diseases, that they attack mainly young people between 20 and 30 years of age. These diseases affect mainly physical, but also mental and social aspects of client´s lives. A client needs to have sufficient information on his/her disease and its treatment to be able to cooperate with medical staff actively and thus contribute to improvement of his/her health condition. A nurse plays an important role here as well. Nurse are those who are in permanent contact with a patient and patiens often ask them questions they would be embarrassed to ask a physician. Support of family and friends is also of great importace. Patient organizations that support and help patiens suffering from non specific intestine inflammations and also support their family members may also play an important role. The aim of the bachelor thesis is to find out how patiens with non specific intestine inflammations may benefit from patient associations, to find out how nurses participate in keeping the clients informed and to compile material for clients with non specific intestine inflammations. The qualitative research method was used in the practical part of the thesis. Data collection was performed by means of a semi-structured interwiew. The research sample consisted of selected clients with non specific intestine inflammations, members of IBD CROCODILE Club České Budějovice, participants of seminars of CroCus Patient Club České Budějovice and a civil association of patiens with idiopathic intestine inflammations in Prague. Case studies were elaborated upon interviews with the indiviual respondents. The case studies formed a base for categorization tables in which the most important research results were summarized. Apart from the set goals the research results showed problems the patiens and thein families have to cope with on daily basis. The disease has the most serious impact on their lives in the fields of nourishment, physical activities and travelling. The elaborated information material may be used in seminars of patient organizations, but also in classes at medical school. The research result might be published at specialized lectures and conferences.
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