School of Nursing & Midwifery, Western Sydney University, Locked Bag 1797, Penrith, NSW, 2751, Australia.
Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
Health Soc Care Community. 2020 Sep;28(5):1622-1631. doi: 10.1111/hsc.12987. Epub 2020 Apr 1.
This study reports the findings of a qualitative, grounded theory study which explored the experiences of partners and other long-term family carers living with and supporting loved ones with spinal cord injury. The study is exploratory in that little was previously known about the experience of long-term care-giving in this context in Australia. Most research in this area has focused on this experience during the first 5 years postinjury. This study focuses on the experiences of family carers beyond that 5-year period. The study aimed to explore the experience of partners and other long-term family carers of people with spinal cord injury, and illuminate their daily lives, interests, concerns and caring approaches in this context. Data collection included in-depth interviews, a focus group and an on-line, password-protected research blog for participant narrative reflections. Findings revealed that the experience of long-term caring is complex, all-encompassing and lifelong. This experience is conceptualised here as lifetime active care which always involves what we describe as protective, negotiated, surreptitious and strategic caring. These dimensions of caring are interdependent and deeply embedded in the daily, active support provided by long-term carers of people with spinal cord injury. We argue that carers in this context are involved in processes that have, in other contexts, been conceptualised as narrative reconstruction and also that the four dimensions of caring identified involve significant emotion work. The social processes of lifetime active care may shed light on the experiences of family carers in other long-term care contexts.
本研究报告了一项定性、扎根理论研究的结果，该研究探讨了与脊髓损伤患者生活在一起并为其提供支持的伴侣和其他长期家庭照顾者的体验。该研究具有探索性，因为此前人们对澳大利亚这一背景下长期护理的体验知之甚少。该领域的大多数研究都集中在受伤后 5 年内的这一经历上。本研究关注的是 5 年以上的家庭照顾者的经历。该研究旨在探讨脊髓损伤患者的伴侣和其他长期家庭照顾者的体验，并阐明他们在这种情况下的日常生活、兴趣、关注点和护理方法。数据收集包括深入访谈、焦点小组和在线密码保护的研究博客，供参与者进行叙事反思。研究结果表明，长期护理的体验是复杂的、全面的和终身的。在这里，我们将这种体验概念化为终身积极护理，它始终涉及我们所说的保护性、协商性、秘密性和策略性护理。这些护理维度相互依存，深深植根于脊髓损伤患者长期护理者提供的日常积极支持中。我们认为，在这种情况下，护理人员参与了在其他背景下被概念化为叙事重构的过程，而且确定的四个护理维度涉及到大量的情感劳动。终身积极护理的社会过程可以揭示其他长期护理背景下家庭护理人员的体验。
