Problems of nursing care for a child with spinal muscular atrophy

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