Investigating the coping strategies and interaction with healthcare of people living with Motor Neurone Disease

运动神经元疾病是一种无法确定病因或治愈方法的绝症。被诊断患有这种疾病的人逐渐失去了行动、说话、进食和呼吸的能力，这可能意味着人们可能会以身体无法对任何命令做出反应而精神仍然活跃的情况结束自己的生命。研究表明，这种疾病不仅是身体症状，而且对家庭生活、工作生活、改变认同感和社会生活，极大地影响运动神经元疾病患者的生活质量。目前，医疗保健主要集中在这种疾病的身体症状上，尽管我们知道这种疾病的心理和社会影响同样是毁灭性的，但如何帮助运动神经元疾病患者应对这一问题的研究很少。该项目旨在通过采访运动神经元疾病患者和其他参与他们护理的人来调查，以更好地了解人们如何应对运动神经元疾病的情感影响，以及他们采取的行动，以便他们能够在生活中找到满足感。了解这些问题将使我们能够为运动神经元疾病患者提供更好的医疗保健，满足他们的所有需求，而不仅仅是他们的身体需求。

Motor Neurone Disease is a terminal illness with no known cause or cure. People diagnosed with this illness gradually lose their ability to move, speak, eat and breathe, this can mean people may end their lives with a body unable to react to any commands but a mind which is still engaged and active.Research shows that it is not only the physical symptoms of this illness, but the effects upon family life, working life, changing sense of identity and social life that greatly affect the quality of life of people with Motor Neurone Disease.At present medical care focuses upon the physical symptoms of this illness but although we know the psychological and social effects of this illness are just as devastating there is very little research into how to help people with Motor Neurone Disease deal with this. This project aims to investigate, through interviewing people with Motor Neurone Disease and others involved in their care, to better understand how people cope with the emotional effects of Motor Neurone Disease and the actions they take so they can find satisfaction in their life. To understand these issues will allow us to provide better healthcare for people with Motor Neurone Disease that meets all their needs not just their physical needs.