Cheung Jenny, Hocking Peta
School of Nursing and Midwifery, Victoria University, Melbourne, Victoria, Australia. Jenny.Cheung.vu.edu.au
J Adv Nurs. 2004 Sep;47(5):475-82. doi: 10.1111/j.1365-2648.2004.03126.x.
With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.
The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.
An interpretive phenomenological approach was used to describe spousal carers' experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.
This paper presents one of the major themes identified: 'caring as worrying'. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.
Spousal carers' worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.
随着对居家护理的日益关注，配偶在家照顾慢性病伴侣的需求不断增加。护理的理论层面在文献中已多有讨论，但实际层面受到的关注较少。护理者压力已得到探讨，但关于护理对非正式护理者的意义却鲜有著述。
本文旨在报告1998年至1999年进行的一项研究中出现的一个主要主题，即从配偶护理者的角度阐释对多发性硬化症患者护理的意义，以便深入了解并理解这些护理者所面临的挑战和需求。
采用解释现象学方法描述配偶护理者照顾其伴侣的经历。10名多发性硬化症患者的配偶护理者参与其中。通过非结构化深度访谈收集数据，并采用诠释分析方法进行分析。
本文呈现所确定的一个主要主题：“护理即担忧”。虽然从该主题中浮现出的护理意义支持了文献中讨论的许多护理哲学理解，但作为护理责任的担忧提供了进一步的见解。“护理即担忧”将护理描述为这些参与者中一种复杂的责任情感关系。他们担忧伴侣、与伴侣的关系以及未来。他们还担忧自身健康、机构护理以及缺乏政府支持。
配偶护理者的担忧对医疗保健专业人员具有重要意义。研究结果深入揭示了多发性硬化症患者的护理者在家照顾慢性病伴侣时所面临的关切和担忧。
