Buhse Marijean
School of Nursing, State University of New York at Stony Brook, Stony Brook, NY, USA.
J Neurosci Nurs. 2008 Feb;40(1):25-31. doi: 10.1097/01376517-200802000-00005.
Multiple sclerosis (MS) is a chronic, unpredictable, progressive, disabling disease. It is generally diagnosed in young adult females between the ages of 20 and 40 years. Symptoms of MS may include profound fatigue, depression, gait disorder, spasticity, blurred vision, and bladder and bowel problems. It is an unpredictable disease and has the potential to create a stressful family life. Because MS is frequently diagnosed in early adulthood, it may affect developmental experiences such as raising a family and building and sustaining a career. Satisfaction with relationships can also be altered. MS has a significant social, psychological, and physical impact on the affected individual as well as his or her family. Partners of people with MS often become caregivers, adding to the demands and challenges of family life. As the individual's disease progresses, the capacity for self-care may decrease, and the individual may require daily assistance from family members. However, the daily assistance that family members provide to a disabled spouse, parent, partner, or child can take a physical and economic toll on the caregiver, causing caregiver burden. Caregiver burden is a multidimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience. Caregivers who experience burden are more likely to have a higher risk of depression and a lower quality of life. Early recognition of caregiver burden is important in determining appropriate interventions.
多发性硬化症（MS）是一种慢性、不可预测、进行性的致残疾病。它通常在20至40岁的年轻成年女性中被诊断出来。MS的症状可能包括极度疲劳、抑郁、步态障碍、痉挛、视力模糊以及膀胱和肠道问题。这是一种不可预测的疾病，有可能导致家庭生活压力重重。由于MS经常在成年早期被诊断出来，它可能会影响诸如组建家庭、建立和维持职业生涯等发展经历。对人际关系的满意度也可能会改变。MS对患者本人及其家庭有着重大的社会、心理和身体影响。MS患者的伴侣往往会成为照顾者，这增加了家庭生活的需求和挑战。随着患者病情的发展，自我照顾能力可能会下降，患者可能需要家庭成员的日常帮助。然而，家庭成员为残疾配偶、父母、伴侣或孩子提供的日常帮助可能会给照顾者带来身体和经济上的负担，导致照顾者负担。照顾者负担是对与照顾经历相关的身体、心理、情感、社会和经济压力源的多维度反应。经历负担的照顾者更有可能患抑郁症，生活质量也较低。早期识别照顾者负担对于确定适当的干预措施很重要。
