Jenkin Peter, Koch Tina, Kralik Debbie
Royal District Nursing Service, Glenside, Australia.
J Clin Nurs. 2006 Sep;15(9):1123-31. doi: 10.1111/j.1365-2702.2006.01343.x.
The aim of this study was to go beyond objective clinical assessment and explore the experience of fatigue and self-care strategies with adults who live with HIV.
This study responded to a perceived lack of available evidence to inform the practice of service providers about ways fatigue impacts on the lives of people with HIV. Prior understandings of fatigue are derived from survey or instrument-based tools or studies that do not consider the complexities of the personal experience that in-depth interviews can elicit. The focus remains generally on description, measurement or management from a biomedical perspective.
A qualitative study using participatory action research methods was conducted during 2003 with 15 adults diagnosed with HIV who perceived fatigue was a problem in their lives. Data were collected by individual interviews, researcher's notes and two participatory action research groups.
Thematic analysis of data demonstrated that fatigue remains silent and invisible to participant's families, friends and employers. Fatigue experienced by people living with HIV generally also met with a lack of acknowledgement and understanding from health professionals. People developed self-care strategies over many years of trial and error.
People living with a HIV seek to be acknowledged that fatigue is a legitimate concern, not only by health care professionals, but also people with whom they live. It is imperative that nurses who work with people living with HIV-related fatigue consider the wider social aspects of the person's life as well as physical symptoms. Most importantly, there then needs to be a process of engagement and active listening to the individual's account of their experience of fatigue. Advocating that fatigue is a legitimate complaint to the person living with HIV as well as the wider public and professional community is imperative.
本研究的目的是超越客观的临床评估，探索感染艾滋病毒的成年人的疲劳体验和自我护理策略。
本研究回应了一种认识，即缺乏可用证据来指导服务提供者了解疲劳对艾滋病毒感染者生活的影响方式。先前对疲劳的理解来自基于调查或工具的方法或研究，这些方法或研究没有考虑到深度访谈所能揭示的个人经历的复杂性。目前的重点通常是从生物医学角度进行描述、测量或管理。
2003年采用参与式行动研究方法进行了一项定性研究，研究对象为15名被诊断感染艾滋病毒且认为疲劳是其生活中一个问题的成年人。通过个人访谈、研究者笔记和两个参与式行动研究小组收集数据。
对数据的主题分析表明，疲劳对参与者的家人、朋友和雇主来说仍然是无声且无形的。艾滋病毒感染者所经历的疲劳通常也未得到医疗专业人员的认可和理解。人们在多年的反复试验中制定了自我护理策略。
感染艾滋病毒的人希望不仅得到医疗保健专业人员，而且得到与其共同生活的人的认可，即疲劳是一个合理的问题。照顾感染艾滋病毒相关疲劳的护士必须考虑到患者生活的更广泛社会层面以及身体症状。最重要的是，随后需要有一个参与过程，并积极倾听个人对其疲劳经历的描述。向感染艾滋病毒的人以及更广泛的公众和专业群体倡导疲劳是一种合理的抱怨至关重要。
