The aim of non - state non - profit organisations in taking care of families of children with spinal muscular atrophy

This bachelor's thesis is called "The role of nongovernmental organisations in helping families looking after children suffering from spinal muscular atrophy." The theoretical part is divided into 5 main chapters. The first chapter defines basic terms: spinal muscular atrophy, classification, diagnosis and basic care of people suffering from spinal muscular atrophy. The second part deals with possible therapies. Particularly about rehabilitation and spa treatment, conservative and operative therapy, alternative treatment and medication, compensatory aids, mainly wheel chairs. This chapter also mentions respiratory, orthotic and physiotherapeutic care. Regarding physiotherapeutic care there are descriptions of: using a ball for massage, ergotherapy, basal stimulation, hydrotherapy and pool, hypotherapy. In the conclusion of this chapter there is a description of the project REaDY (REgistry of muscular DYstrophy). The third chapter is named "The family of a child suffering from spinal muscular atrophy." It seemed important to mention stages of grief parents are going through after their handicapped child was born. The stages were described by a famous Swiss thanatology expert Elizabeth Kübler-Ross. There are recommendations for parents and people taking care of handicapped child at the end of the third chapter. The fourth chapter addresses the upbringing and education of children with spinal muscular atrophy. The intellect of these children is not affected so they can be integrated into nursery, primary and secondary schools attended by unhandicapped children. The last chapter deals with nongovernmental organisations having great social benefit for handicapped people. The practical part of this work has two main goals: to find out what services are offered by nongovernmental organisations to the families of children with spinal muscular atrophy and how are these families satisfied with offered services. The qualitative type of research was used for achieving these goals: the technique of semi-structured interviews. The target set of the research part consisted of workers of nongovernmental organisations specialised in spinal muscular atrophy and the parents of children suffering from it. The interviews were focused on gaining the list of services provided by nongovernmental organisations regarding the caring families. Seven families were asked for participation in this research. Five families agreed to be involved in the interview. The list of provided services makes another part of the research. Therefore a social worker from Arpida (rehabilitation centre for handicapped people) and a special consultant from Kolping Family Smečno were addressed. It was found out that organisations mentioned above provide short-term stays, rehabilitations, ergotherapy, swimming pool, hypotherapy, compensatory aids and consulting. Parents are particularly interested in short-term stays, they can have a rest and an assistant takes care of their child. This service is of utmost importance for parents. It brings both a physical and a psychological relief. Intellect is not affected in children and it is not easy to invent new activities. At the same time the contact with another person is invaluable. There is also a great demand for rehabilitation, which is beneficial and unsubstitutable. Parents say that consulting is also important. The consulting is usually needed for purchases of compensatory aids or integration of children into schools. Almost all parents agreed to be fully satisfied with provided services. One of the respondents would be more satisfied if the short-term stays took place more frequently, not only during the summer. Concerning financial issue the basic income comes from social services The results of this work can be used to get an overview of services provided by nongovernmental organisations and to find out how satisfied those users of the services are