Ray Robin A, Street Annette F
School of Nursing & Midwifery, La Trobe University, Melbourne, Australia.
J Adv Nurs. 2006 Oct;56(1):35-43. doi: 10.1111/j.1365-2648.2006.03977.x.
This paper reports a study of how family members caring for people living with motor neurone disease managed the deteriorating body, their own bodywork and the associated emotional labour.
People living with the neurodegenerative condition of motor neurone disease face the prospect of dying in 3-5 years from progressive loss of voluntary muscle mass and function, culminating in respiratory failure. Theories concerning the body in illness have been used to illustrate patient perspectives; however, family caregivers' experiences of the body have been neglected.
An ethnographic case study was undertaken with 18 primary family caregivers and six peripheral caregivers. Primary caregivers participated over 10 months in three face-to-face, semi-structured interviews which included mapping their support networks using ecomaps. Observational data were also recorded as field notes. Peripheral caregivers were interviewed once during the same time period. The data were generated between 2003 and 2004.
Informal caregiving requires engagement in various aspects of bodywork. Three body concepts were identified: the visible body--how the disease affected the patient and caregivers; the dependent body--the resulting care requirements; and the social body--how living with motor neurone disease affected their social support networks. The visible body is a continual reminder of the ravages of the disease, while the dependent body demands physical and emotional care. Social interactions decline over time, depriving family caregivers of the much needed support for sustaining their commitment to the bodywork required in caregiving.
The demands of bodywork for family caregivers are increased by the continual presence of emotional labour as they seek to implement the best way to support their relative with motor neurone disease. Nurses and allied healthcare workers need to assess each family situation, asking appropriate questions to establish the most appropriate interventions to facilitate supportive care.
本文报告了一项关于照顾运动神经元病患者的家庭成员如何应对患者身体机能恶化、自身护理工作及相关情感劳动的研究。
患有运动神经元病这种神经退行性疾病的患者，由于随意肌质量和功能逐渐丧失，最终导致呼吸衰竭，面临着在3至5年内死亡的前景。有关疾病中身体的理论已被用于阐释患者的观点；然而，家庭照顾者对身体的体验却被忽视了。
对18名主要家庭照顾者和6名外围照顾者进行了人种学案例研究。主要照顾者在10个月的时间里参与了三次面对面的半结构式访谈，其中包括使用生态图绘制他们的支持网络。观察数据也作为实地记录进行了记录。外围照顾者在同一时期接受了一次访谈。数据收集于2003年至2004年期间。
非正式护理需要参与身体护理的各个方面。确定了三种身体概念：可见身体——疾病如何影响患者和照顾者；依赖身体——由此产生的护理需求；以及社会身体——患有运动神经元病如何影响他们的社会支持网络。可见身体不断提醒人们疾病的肆虐，而依赖身体则需要身体和情感上的照顾。随着时间的推移，社会互动减少，使家庭照顾者失去了维持其对护理所需身体护理承诺所需的急需支持。
家庭照顾者的身体护理需求因情感劳动的持续存在而增加，因为他们试图找到支持患有运动神经元病亲属的最佳方式。护士和相关医护人员需要评估每个家庭的情况，提出适当的问题，以确定最适当的干预措施，促进支持性护理。
