Lerum Sverre Vigeland, Solbrække Kari Nyheim, Frich Jan C
Institute of Health and Society, University of Oslo, P. O. Box 1089, N-0318, Oslo, Norway.
BMC Palliat Care. 2016 Feb 24;15:22. doi: 10.1186/s12904-016-0097-4.
Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers' work and sense of responsibility, exploring family caregivers' accounts of caring for a family member with MND.
We recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work.
We found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers' priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others' expectations without being overwhelmed by care work.
A changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers' preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND.
运动神经元病（MND）是一种进行性神经疾病，会导致肌肉萎缩、逐渐瘫痪和呼吸衰竭。MND护理要求高、情况复杂，涉及多种护理任务。家庭成员可能会经历巨大且持久的压力。我们开展了一项定性研究，以更深入了解家庭护理人员的工作和责任感，探讨他们对照顾MND家庭成员的描述。
我们从挪威招募并采访了25名参与者，其中包括17名现任和8名已故家庭成员的护理人员。借鉴科尔宾和施特劳斯的护理理论，我们通过对材料进行理论解读来分析数据，以确定不同类型的护理工作。
我们发现护理人员从事五条护理工作线，这些工作线可能并行或紧密相连：i）即时护理工作；ii）寻求有关疾病的信息并弄清楚病情；iii）处理相互冲突的义务；iv）维持正常生活；v）管理外部资源和援助。护理人员的优先事项受到他们与MND患者的互动、可用辅助设备、疾病发展以及付费护理使用情况的影响。护理工作对护理人员具有象征意义和道德意义，并与自我价值和他人尊重相关。护理人员试图在不被护理工作压垮的情况下平衡自己和他人的期望。
家庭护理人员面临的不断变化且可能混乱的情况可能会削弱他们利用支持性服务的能力。以工作线为框架来评估护理人员的偏好和优先事项，卫生专业人员可以为照顾MND患者的家庭成员量身定制援助和支持。
