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

对神经肌肉疾病患者的家庭治疗、社会护理和生活质量的研究。

基本信息

批准号：
14570335
负责人：
KATO Tadahiro
金额：
$ 2.24万
依托单位：
Ehime University
依托单位国家：
日本
项目类别：
Grant-in-Aid for Scientific Research (C)
财政年份：
2002
资助国家：
日本
起止时间：
2002 至 2003
项目状态：
已结题

来源：
https://kaken.nii.ac.jp/en/grant/KAKENHI-PROJECT-14570335/
关键词：
neurological intractable disorder social care quality of life experience of disorder talking quantitative study qualitative study doctrine of social constitutions 介護保険患者のQOL ライフヒストリー介護ストレス介護・福祉サービスの満足度

项目摘要

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.

本研究的目的是开发一种有效的医疗方法，为住院的难治性神经系统疾病患者提供高质量的生活方式。如下文所述，与支持混乱有关的社会和福利问题相当多。在知情同意的基础上，选择Y居住区的100例患者及其照顾者，无论是否丧失日常生活能力，均纳入本研究。本研究采用问卷调查的方式，调查照顾者对病人的关心程度、家庭危机处理的准备和方法，以及照顾者在家庭危机处理中的具体行为和家庭观念。研究结果如下：1.增加护老者课程中的年度练习以处理问卷的强度，显示护老者对病患生命的保护有所改善，因为这有助于让护老者更了解病患的安全。结果发现：（1）照顾者对病人的照顾不到位;（2）照顾者对病人死亡的预防措施存在困难;（3）危机干预的经验教训并没有转化为实际效果;（4）病人和照顾者对本次调查持积极态度。许多危及生命的危机，最近发生在整个家庭护理迫使一些照顾者重新。评估他们对家中安全的看法，并重新检查他们在患者日常生活中所扮演的角色。因此，我们的结论是，我们的年度问卷调查的病人和照顾者可能是有效的提醒他们的悲剧，在家里的护理，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的理解和参与自己的安全。