Assessment of caregiver burden in families of persons with multiple sclerosis

Marijean Buhse1

  • 1School of Nursing, State University of New York at Stony Brook, Stony Brook, NY, USA. marijean.buhse@stonybrook.edu

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.

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