The physical symptoms of weakness and fatigue from multiple sclerosis (MS) can rock a person's confidence and ability to engage in what he or she feels is important, from being a good parent and friend to taking up a hobby, according to Matthew Plow, assistant professor from Case Western Reserve University's Frances Payne Bolton School of Nursing.
To help people with MS maintain autonomy and independence, a team of researchers set out to determine what factors prevented individuals from undertaking and enjoying the activities they believe are most important to live fulfilling lives.
The study is among the first to examine what people with MS felt were important activities and what would make them happy.
Researchers asked 335 people with MS rank the importance of 20 activities. On average, the survey respondents were age 53 and lived with MS for about 15 years. Nearly 60 percent used some mobility aid.
Participants ranked the following as most important to them: Getting out and about, spending time with family and friends, managing bills and expenses, and participating in clubs and civic and political events.
The researchers sought possible new approaches to improve the health and quality of life of people with MS.
In particular, Plow said, they wanted to identify factors that rehabilitation professionals might target to increase overall engagement in community activities and promote other healthy behaviors, like exercise and eating right.
They set out to find what prevents people with MS from being engaged in social and community activities. Three barriers surfaced: lack of confidence, physical and mental impairments, and environmental factors.
Plow and his team discovered that struggling with impairments, like MS fatigue and cognitive and walking problems, interact with environmental factors, like inadequate social support and transportation issues, to impede a person's confidence to manage his or her MS symptoms in order to engage in healthy behaviors and meaningful activities, like spending time with family and friends.
A lack of confidence resulting from impairments interacting with environmental factors may impede people with MS from taking steps to prevent secondary symptoms like depression, deconditioning from lack of exercise, and poor nutrition or eating choices that may result in obesity or diabetes.
Based on the survey, Plow is testing an intervention that builds confidence in people with MS. It gives the individual steps to take to make changes and learn new skills to engage in activities that are meaningful to the participant.
The National Multiple Sclerosis Society and National Institute of Nursing Research of the National Institutes of Health supported the study.
Marcia Finlayson, PhD, OT reg, OTR, Queen's University (Ontario, Canada); Douglas Gunzler, PhD, Case Western Reserve University School of Medicine; and Allen W. Heinemann, PhD, Northwestern University and the Rehabilitation Institute of Chicago, contributed to the study.
The findings were reported in the Journal of Rehabilitation Medicine article, "Correlates of Participation in Meaningful Activities Among People with Multiple Sclerosis."