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Education of family caregivers about care of patient with Amytrophic lateral sclerosis (ALS)
Authors: Cvrkalová Lenka | Ehler Edvard | Mandysová Petra
Year: 2016
Type of publication: ostatní - přednáška nebo poster
Page from-to: nestránkováno
Titles:
Language Name Abstract Keywords
eng Education of family caregivers about care of patient with Amytrophic lateral sclerosis (ALS) Background: Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig´s disease or motor neuron disease, is a chronic, degenerative disease of nervous system affecting I + II motoneurons. ALS is characterized by muscle weakness, atrophy and paralysis of all muscles including the diaphragm. It also causes problems with speech, swallowing and respiration. Patients with ALS totally progressive lose independence and have increased need help with everyday life activities by caregivers. In most cases patients with ALS are nursed by their relatives (usually the partner) in home environment. However the quality of care depends primarily on the knowledge, skills and experience of patient´s caregivers. With the worsening of patient´s clinical status, family caregivers are more and more involved in the specialized nursing care of the patients and it require very specialized education. Methods: For this research a mix of methods was chosen (quantitative and qualitative). Nowadays we are at the beginning of our cooperation with association ALSA. ALSA association is an organization of patients and professionals interested in disease ALS. We plan to cooperate with neuromuscular centers in the Czech Republic as well. Our expectation is to cooperate with all of these centers and organization ALSA in the future for quantitative part of this research, where we would like to use a questionnaire for caregivers of patients with ALS. But at first we would like to use a qualitative method of interviews with caregivers. Our own research investigation will be preceded by a pilot study for elimination of any obscurity and inaccuracies in the questionnaires. Results and conclusion: Currently there are no results of the study yet. This research have just started, but we can say, that we are planning to make the educational program based on the results of research in order to improve the care for patients with ALS. amyotrophic lateral sclerosis; ALS, education; care givers; home care

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