A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Multiple sclerosis (MS) is a chronic, progressive central nervous system disease. People with MS can experience a variety of symptoms which typically start between the ages of 20 and 40, including difficulty walking, vision loss, pain, fatigue, or challenges with thinking and memory. As people get older with MS, they may experience worsening symptoms along with other life challenges, such as needing to retire early from employment. People aging with MS may benefit from building their resilience to deal with those challenges. Resilience is the ability to bounce back and flourish in the face of stress or adversity. Past studies have found that people can build their resilience through instruction and practice. In a recent NIDILRR-funded study, researchers tested a telephone and Internet-based resilience building program for people aging with MS. They wanted to find out whether the program led to increases in resilience, greater participation in social roles, or improvements in mood. The researchers also wanted to find out how well the telephone and internet-based format worked for the program participants.
Researchers at the Rehabilitation Research and Training Center on Promoting Healthy Aging for Individuals with Long-Term Physical Disabilities enrolled 31 people with MS in a study. The participants were at least 45 years old and had MS for an average of 20 years. Most of the participants had been diagnosed with relapsing-remitting MS. The researchers randomly assigned the participants to either an experimental group, who participated in the resilience program, or a comparison group who did not participate in the program.
The participants in the experimental group completed a resilience program modified from the Everyday Matters program, originally developed by the National MS Society. During the study, each participant attended up to six 90-minute group conference calls led by a trained therapist. During these calls, the participants received group instruction on skills such as setting goals, developing more positive thinking patterns, building social relationships, and overcoming barriers to action. Along with the telephone-based discussions, the participants were given a workbook, supplemental videos, and a popular book about happiness (the Happiness Advantage). Finally, the participants were invited to an online discussion group hosted by the National MS Society to encourage discussion between sessions.
The participants in the experimental and comparison groups completed online surveys three weeks before the start of the intervention, and again two weeks after the end of the intervention. The surveys included a ten-question resilience scale, where the participants rated their agreement with items such as “I can deal with whatever comes my way” or “Coping with stress strengthens me.” The participants also answered questions about their satisfaction with their social involvement, such as “I am satisfied with my ability to do things for my family”; questions about happiness and well-being, such as “Lately, I had a sense of well-being”; and questions about mood, including recent symptoms of depression. The participants in the experimental group were also asked for feedback on how helpful they found the program to be, and their opinions of the telephone- and internet- based format. In addition, the researchers tracked the participants’ program attendance.
The researchers found that the participants in the experimental group reported improvements in resilience, more satisfaction with their social involvement, improvements in happiness and well-being, and less severe depression after the intervention. For example, the participants in the experimental group increased their resilience scores by an average of 23%. The participants in the comparison group showed no changes between the beginning and the end of the study.
The researchers also found that the participants in the experimental group rated the program, on average, as being very helpful, and they thought that the telephone and internet format was extremely convenient. Although three of the participants in the experimental group dropped out before starting the study due to schedule conflicts, the remaining participants had high attendance overall, with half attending all six sessions, and 83% attending at least four sessions.
The authors noted that a brief, six-session resilience program may have a meaningful impact on resilience, well-being, and mood for people aging with MS. The telephone and Internet-based format of the program may be especially useful for people who live far away from a clinic, or who have symptoms that may make it difficult to leave home. The authors also noted that the participants in this study were generally older than the MS population at large and were doing fairly well overall, with relatively low levels of distress. It may be useful to extend this research by conducting a larger study of the program with a more diverse sample of people aging with MS to understand its impact across the population. It may also be useful to examine whether bringing together people with MS who are similar in age and health challenges might help them to build their resilience.
To Learn More
The RRTC on Promoting Healthy Aging for Individuals with Long-Term Physical Disabilities offers a collection of factsheets and research summaries on diverse topics in aging with disabilities like MS including:
- How to Bounce Back
- What is Resilience and How Does it Help with Stress
- Maintaining Resilience in the Face of MS
The MS Workbook, developed by the Multiple Sclerosis RRTC (2008-2013), is s a comprehensive guide to help you manage fatigue and weakness, cope with pain, get the most out of your health care system, combat anxiety and depression, optimize your activity level, create a career and financial plan, maintain intimacy with your partner, and gain support from family, friends, and your community.
Everyday Matters is available through the National MS Society, along with many other publications and connection to local support resources.
To Learn More About this Study
Alschuler, K.N., Arewasikporn, A., Nelson, I.K., Molton, I.R., and Ehde, D.M. (2018) Promoting resilience in individuals aging with multiple sclerosis: Results from a pilot randomized controlled trial. Rehabilitation Psychology, 63(3), 338-348. This article is available from the NARIC collection under Accession Number J79577.