Study of nursing support for family caregivers of patients with incurable diseases in the context of optimization model

这项研究从2004年开始，为期两年，旨在探索护理支持系统，以帮助不治之症患者的照顾者(妻子)建立实现生活的策略。在第一年，我们访问了14位妻子，询问她们的生命历程、她们在护理经验中应用的策略以及她们的生活质量(QOL)，以获得制定策略模型的基础数据。访谈结果显示，采取积极策略如继续学习、志愿者工作或关注自己的健康管理的妻子，尽管其丈夫的病情恶化，随后需要提供更多的照顾工作，但她们的生活质量仍较好。2005年，我们起草了《为患有不治之症的丈夫的妻子实现充实生活的策略模型》的草案。我们对建立的模型进行了测试和评估，访问了7位丈夫经历过气管切开或死亡的妻子。结果表明，妻子们(即主要家庭照顾者)通过向护理支持提供者讲述她们最糟糕的生活经历，鼓励了她们对事件的接受。我们观察了表明我们的战略模式的好处的反应，例如重组生活或改变生活方式。

This study was conducted for a period of two years from 2004 to explore the nursing support system to help the caregivers (wives) of patients with an incurable disease to establish strategies for fulfilling life. In the first year, we interviewed 14 wives to ask about their life course, strategies they applied to their nursing care experience and their quality of life (QOL) in order to obtain basic data for development of a strategy model.The results of the interviews showed that the wives who adopted such positive strategies as continuing to study, volunteer work, or paying attention to their own health management had a better QOL in spite of the progression of their husband's illness and the subsequent increase in the work to provide care.In 2005, we prepared a draft for the "Strategy model for achievement a fulfilling life for wives of husbands with an incurable disease. We had a test operation and evaluation of the created model by interviewing seven wives whose husbands either underwent tracheotomy or died.The results showed that the wives' (i.e. the main family caregivers') acceptance of events was encouraged by relating their worst experience in life to the nursing support provider. Responses indicating the benefits of our strategy model, such as reorganizing life or changing the lifestyle, were observed.