Asking for help: The experience of individuals with MS.

TitleAsking for help: The experience of individuals with MS.
Publication TypeJournal Article
AuthorsKlasner ER, Dudgeon BJ, Yorkston KM
JournalInternational Journal of MS Care

While the course of multiple sclerosis (MS) is variable, many individuals will require care and assistance with a variety of activities. The literature suggests that most people with MS receive care from family members. Studies have been conducted to examine issues that caregivers frequently face, such as stress, burden and poor health. Only a few studies have examined the experience of care giving from the perspective of the person who is receiving the care or asking for help. The purpose of this study was to understand the experience of receiving care from the perspective of the person with MS. One man and five women with moderate to severe MS participated in semi-structured "What is it like to ask for help from your care giver, i.e. spouse, friends, other family members?" A phenomenological analysis was conducted and three major themes emerged. The themes were preservation of family roles, not being a burden, and changing personal expectations. The individuals with MS felt that it was difficult to maintain his/her position in the family when he/she required help with personal care. Participants indicated that family members viewed them differently and his/her role in the family became compromised. Those interviewed also felt great concern about becoming a burden to the family. They reported monitoring the amount of help they asked for and always being aware of not asking too much. The individuals interviewed also discussed the need to change personal expectations. Since he/she required assistance he/she had to adjust to things being done differently, and felt they had lost a sense of control when personal expectations had to be changed. Awareness and understanding of both perspectives (caregiver and person with MS) can help to establish and maintain a partnership between caregiver and the person with MS.

UW Medicine Multiple Sclerosis Center

Now located at Northwest Hospital & Medical Center, you may visit the clinic's website or call 206-598-3344 to make an appointment. 

Studies Seeking Volunteers:

Check out our current list of studies