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

本研究的目的是开发一种有效的医疗方法，为住院神经难治性疾病患者提供高质量的生活方式。如下所述，与支持失序有关的社会和福利问题相当多。在知情同意的基础上，Y居民区的100名患者及其照顾者参加了这项研究，无论他们是否已经失去日常生活能力。对照顾者对患者的关心、家庭危机处理的准备和方法以及具体的行为和家庭观念进行了问卷调查。研究结果如下：1.增加护理者课程中处理调查问卷的年度演习强度，表明对患者生命的保护有所改善，因为这有助于使护理者更多地意识到患者的安全。顺便说一句，一些护理者被发现并不总是关注他们的患者；2.护理者在采取预防措施防止患者死亡方面存在困难；3.从危机干预中吸取的严重教训不幸没有转化为实际效果；4.患者和护理者对我们正在进行的调查持积极态度。最近在整个家庭护理领域发生的许多危及生命的危机迫使许多护理人员重新护理。评估他们在家中的安全感，并重新检查他们在患者日常生活中所扮演的角色。因此，我们得出的结论是，我们对患者和照顾者的年度调查问卷可能有效地提醒他们家庭护理的悲剧，从而帮助他们为未来的危机做好准备。进一步的研究正在进行中，以提高成本效益和患者对自身安全性的理解和参与。

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.