Qualitative needs assessment of people with multiple sclerosis.

TitleQualitative needs assessment of people with multiple sclerosis.
Publication TypeJournal Article
AuthorsJohnson KL, Weir VG, Verrall A, Yorkston KM, Amtmann D
JournalInternational Journal of MS Care
Management of activities of daily living in MS, MS and the caregiver/family, Quality of Life in MS

Background: The Pacific Northwest of the United States has a higher than average prevalence of multiple sclerosis (MS). The Greater Northwest Chapter of the National Multiple Sclerosis Society serves over 12,000 people with MS in Alaska, Montana, and Washington. Objectives: Focus groups of people with MS and caregivers of individuals with MS were conducted to investigate unmet need and quality of life issues as the first step toward developing a needs assessment survey. Methods: Focus groups were conducted with adults with MS (N = 35) and primary caregivers (N = 10) ofpeople with MS either in person or over the phone. Participants lived in Washington, Alaska, and Montana. Data were transcribed and coded by the research team and analyzed using a phenomenological approach. Results: Three themes emerged from qualitative data analysis of focus group transcripts. These themes were endorsed by all participants: (1) Barriers: individual-level obstacles to gaining or maintaining optimum health and independence including lack of health insurance and transportation, (2) Problems: larger systemic impediments to lifestyle maintenance including career building and high prevalence of uncertainty, and (3) Strategies: steps taken or solutions identified by participants to manage MS and maintain high quality of life including education about MS and social support. Conclusions: The chronic and unpredictable nature of MS can place severe strain on an individual’s ability to navigate life. However, individuals with MS have developed solutions to address issues of physical and cognitive decline and quality of life. Thus, people with MS are very interested in learning to better manage MS outside of a physician’s office. Organizations and groups whose mission is to improve the quality of life of people with MS have an opportunity to address this need through initiation of self-management programs.


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