A study of the domiciliary treatment, social care and quality of life of patients suffering from neuromuscular disorders.

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The objective of the present study was to develop an effective medical method for providing a high quality of life style for residential patients with neurological intractable disorders. There are considerable social and welfare problems associated with the support of disorder, as described below. One hundred patients and their caregivers in Y residential area were enrolled in this study based on informed consent, irrespective of whether they had lost the ability of daily living or not. A questionnaire about the caregivers' concerns about their patients, their preparations and methods of crisis managements in home, and concrete behavior and family concepts just in this case were studied. The following results were obtained :1.Increasing the intensity of annual drills to deal with a questionnaire in the caregiver curriculum suggests an improvement in the protection of patient's lives, since this helped to make caregivers more aware of their patient's safety. Incidentally, some caregivers were found to not always be keeping an eye on their patients ;2.The caregivers had difficulty in taking preventive measures against patients' death ;3.The severe lessons learned through the crisis intervention unfortunately have not translated into practical effects ;4.The patients and caregivers viewed our ongoing survey in a favorable light. A lot of life-threatening crises which recently occurred throughout the home care are forcing a number of caregivers to re。evaluate their perceptions of safety in the house and to re-examine the roles they play in the encounter in day to day living of their patients. Therefore, we conclude that our annual questionnaire to patients and caregivers may be effective in reminding them of the tragedy of the nursing care in home, and consequently to help prepare them for future crisis. Further studies are in progress to improve cost-effectiveness and patient's comprehension and involvement in their own safety.