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The aim of non - state non - profit organisations in taking care of families of children with spinal muscular atrophy
ROUBÍKOVÁ, Kateřina
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.
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Specifics of nursing care for patients with spinal muscular atrophy
HRBKOVÁ, Lenka
This thesis is focused on defining the specifics of nursing care for patients with disease spinal muscular atrophy. SMA is classified as an incurable genetic disease that causes progressive muscle atrophy and deformity of the body but sensory perception and intellect remain preserved. The incidence of the disease in the neonatal and childhood prevails, however the outbreak of the disease in adulthood is not any exception. Suitable nursing care is of great importance in maintaining the health of the patients for the longest possible time and delaying the onset of worsening health. The thesis is divided into theoretical and empirical part. The theoretical part deals with SMA disease, incidence, classification, treatment options and nursing care. In connection with the theme of this thesis, we choosed three targets. 1.: Map out the specifics of nursing care of pediatric patients with spinal muscular atrophy from the perspective of nurses. 2.: Map out the specifics of nursing care of adult patients with spinal muscular atrophy from the perspective of nurses. 3.: Comparison of the specifics of nursing care of pediatric and adult patients with spinal muscular atrophy. We used qualitative research method using a semi-structured interview to achieve our goals. To assess quality goals, we used the following research questions: How nurses specify the nursing care provided to a pediatric patient with spinal muscular atrophy? How nurses specify the nursing care provided to an adult patient with spinal muscular atrophy? With which needs of patients suffering with spinal muscular atrophy have the most experienced nurses experience? The research group consisted of six respondents, three of which respondents had experience with care of pediatric patients and the other three with care of adult patiens. As a processing technique we used open coding, through pencil and paper. The information obtained was divided into categories. The research shows that for nurses caring for pediatric patients the age is important at first occurrence of the disease as that influences the possibility of communication. Prevails ensure physiological needs. For nursing care, throughput of the tracheostomy cannula and status check of the oral cavity is important. In terms of nutrition the nurses prefer serving food through the PEG. They also agreed on the need for positioning. Emptying urine is ensured by the PMK or urinating in diapers. The nurses agreed on serving laxatives and manual defecation. The survey of nurses caring for adult patiens explains that the most common barrier is a state of consciousness, mental status and impaired verbal and nonverbal communication. For the needs of the nurses they state the physiological needs, as well as the fulfillment of psychological needs. In the nursing care of respiratory ways nurses report caring for tracheostomy cannula and a suctioning. In the case of nutrition they prefer per os (orally) and after that they use the help of NGS or NJS. The most common way of serving the diet they indicate the PEG. In case of immobility of the patient they all agree on positioning. For emptying urine they use PMK, one also mentioned epicystostomy. For defecation they agree on serving of laxatives, enemas and manual defecation. The results of our survey highlight the differences in nursing care provided to children and adults. The most relevant in the category of barriers in communication, is the age of the children and adults state of consciousness, the willingness and the ability to communicate. Adult patients desire to fulfill even higher requirements,while with children it is about fulfilling the physiological and social needs. In the nursing care, significant differences are not found. The results obtained in the practical part, I would like to use the knowledge to broaden awareness of nurses who have experience in caring for patients with SMA and to better inform the general public about this rare and often fata
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Problems of nursing care for a child with spinal muscular atrophy
BUBALOVÁ, Petra
Spinal muscular atrophy (SMA) is a hereditary disease characterized by progressive loss of -motoneurons of the spinal front corners, the consequence of which atrofizaci of muscles occurs. As a result, children become disabled and infirm dependent on the help and care of others at an early age. This is a relatively rare disease, the prevalence is about 1: 6,000 children. Spinal muscular atrophy is divided into 4 types according to its severity and time of onset of symptoms. Despite significant longtime research, it has failed to find a drug that could cure this disease so far. To the present date, there are only methods that slow the progression. The survey also contained 4 research questions, namely: What are the principles of treating a child with spinal muscular atrophy ? What are the most common problems in the care of a child with spinal muscular atrophy ? Are parents adequately educated on the issue of child with spinal muscular atrophy ? What impact has the presence of a child with spinal muscular atrophy in his family? Qualitative research was used in the implementation of the empirical part . Two qualitative methods were used to collect the data, a semi-structured interview and a hidden observation of the participant . Interviews were conducted with 3 research files, with 11 general nurses from the České Budejovice Hospital and University Hospital Motol, 7 mothers of children with I and II. type SMA of a summer camp for children with SMA and with 5 personal assistants. This thesis should help nurses and the public to gain awareness of the disease of Spinal Muscular Atrophy. It refers to all aspects of care of such a sick child, with which their parents daily struggle. Caring for a child with SMA is very difficult for their caregivers and requires considerable restrictions for the whole family. Information observed during the research were presented at a seminar for nurses in the České Budejovice Hospital in January 2015.
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The quality of life of children suffering with spinal muscular atrophy
KOČOVÁ, Helena
The scope of this dissertation focuses on issues related to the quality of life of children suffering with spinal muscular atrophy (SMA) and their carers and the associated social impact on families affected by this progressive and incurable disease. It describes ethical aspects of help to families with SMA and serious decisions in relation to the need to connect to artificial ventilation. Spinal Muscular Atrophy - SMA is a motoneuron disease i.e. disease of neurons, which are responsible for conscious movements of muscles e.g. running, head movement and swallowing. The prevalence is approximately 1 newborn for 6000 live births and approximately 1 person of 40 people is the carrier of the disease. SMA affects all the bone muscles i.e. proximal muscles are often affected the most. Everyone affected is in some point in life, depending on stage and type, reliant on mechanical or electrical wheelchair, in many cases also on artificial ventilation and permanent 24hr care. Families affected by this illness accept the fact of this progressive and incurable illness differently, this dissertation reflects upon such different perceptions on quality of life of the affected children, the carers. It forms a contribution in building a foundation for organising multi-discipline teams of experts with sole purpose of therapeutical interventions, to support the child and his/hers family. The World Health Organization (WHO) defines palliative care as "improving quality of life of patients facing life-threatening illnesses, and their families, through the prevention and relief of suffering by early identification and treatment of pain and other problems, whether physical, psychological, social or spiritual." Palliative care prepares families for these situations and should be provided along with whatever treatment options families choose. This dissertation is a comprehensive information base to support children affected by SMA and their families in early care in Czech Republic and in the process of inclusive educational integration into mainstream society.
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