与患有慢性病的配偶一起生活——平衡需求与资源的挑战。
Living with a spouse with chronic illness - the challenge of balancing demands and resources.
机构信息
Department of Health and Caring Sciences, University of Gävle, Kungsbäcksvägen 47, 801 76, Gävle, Sweden.
Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden.
出版信息
BMC Public Health. 2019 Apr 23;19(1):422. doi: 10.1186/s12889-019-6800-7.
BACKGROUND
The number of partners providing informal care for their chronically ill spouse is rising, and they describe their daily life as demanding. The aim of this paper was to describe the partners' experiences of living with a person with chronic illness and how they manage everyday life.
METHODS
A descriptive design with a qualitative approach was used. A purposive sample of 16 Swedish partners with a chronically ill spouse were interviewed. The interviews were recorded, transcribed, and analyzed using qualitative content analysis.
RESULTS
Four main themes were identified: 'Managing challenges in daily life,' 'Seeking support and use own capabilities to manage life,' 'Appreciating the good parts of life' and 'Adapting to constant changes and an uncertain future'. Their experiences of support from formal care providers varied; they expressed the need for more assistance from the health care sector.
CONCLUSIONS
The partners experienced many challenges in everyday life when providing informal care for their chronically ill spouse. This affected both their physical and psychological health, as they had limited time for themselves. The partners seemed to receive more support from their informal network than from formal care providers. In handling daily life, the partners balanced demands and resources to identify possibilities to move forward and find meaning in life. This is congruent with theories by Antonovsky, and Folkman and Lazarus that describes meaningfulness and how to handle challenges in everyday life.
背景
为慢性病配偶提供非正式护理的伴侣人数正在增加，他们形容自己的日常生活要求很高。本文的目的是描述伴侣与慢性病患者一起生活的体验，以及他们如何管理日常生活。
方法
采用描述性设计和定性方法。对 16 名瑞典慢性病配偶的伴侣进行了有针对性的访谈。对访谈进行了录音、转录和分析，采用定性内容分析。
结果
确定了四个主要主题：“管理日常生活中的挑战”、“寻求支持和利用自身能力管理生活”、“欣赏生活的美好部分”和“适应不断变化和不确定的未来”。他们对来自正规护理提供者的支持的体验各不相同；他们表示需要更多来自医疗保健部门的帮助。
结论
为慢性病配偶提供非正式护理的伴侣在日常生活中面临许多挑战。这影响了他们的身心健康，因为他们自己的时间有限。伴侣们似乎从非正式网络中获得的支持多于正规护理提供者。在处理日常生活时，伴侣们平衡需求和资源，以确定前进的可能性，并在生活中找到意义。这与 Antonovsky 和 Folkman 和 Lazarus 的理论是一致的，这些理论描述了意义和如何应对日常生活中的挑战。
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