|
|
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.
|
|
|
Involving users in the psychiatric care reform
Wolfová, Magdaléna ; Tušková, Eva (advisor) ; Dobiášová, Karolína (referee)
The subject of this diploma thesis is the involvement of users of psychiatric care in the process of planning and realization of psychiatric care reform at the macro level of policy making. The aim of the research is to describe and understand this involvement. In the research are describer possibilities of participation in the phases of involvement, its form, purpose, formal regulation of opportunities, expectations of respondents, perceived power and barriers in involvement. The data was collected during interviews with key actors and studies of relevant documents. The results relate to the theoretical concepts of coproduction, patient-oriented care, strategic and human rights documents (the Convention on the Human Rights of People with Disabilities). The element of power is described through the typology of Sherry Arnstein's participation ladder. Evidence of interviews indicates elements of tokenism and disadvantages. There is a low (one-person) representation of users in reform bodies, lack of time for discussion in consultative bodies, lack of information and lack of capacity (people, time, resources) for greater development of patient organizations. Respondents have identified barriers as the socio-economic situation, lack of capacity for macro-level involvement, mental health constraints or...
|
|
|
Involving users in the psychiatric care reform
Wolfová, Magdaléna ; Tušková, Eva (advisor) ; Dobiášová, Karolína (referee)
The subject of this diploma thesis is the involvement of users of psychiatric care in the process of planning and realization of psychiatric care reform at the macro level of policy making. The aim of the research is to describe and understand this involvement. In the research are describer possibilities of participation in the phases of involvement, its form, purpose, formal regulation of opportunities, expectations of respondents, perceived power and barriers in involvement. The data was collected during interviews with key actors and studies of relevant documents. The results relate to the theoretical concepts of coproduction, patient-oriented care, strategic and human rights documents (the Convention on the Human Rights of People with Disabilities). The element of power is described through the typology of Sherry Arnstein's participation ladder. Evidence of interviews indicates elements of tokenism and disadvantages. There is a low (one-person) representation of users in reform bodies, lack of time for discussion in consultative bodies, lack of information and lack of capacity (people, time, resources) for greater development of patient organizations. Respondents have identified barriers as the socio-economic situation, lack of capacity for macro-level involvement, mental health constraints or...
|
|
|
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.
|
|
| |
|
| |
guest ::
