Experiences and perceived outcomes of persons with multiple sclerosis from participating in a randomized controlled trial testing implementation of the Canadian Physical Activity Guidelines for Adults with MS: an embedded qualitative study

Abstract

Purpose

To describe the experiences and outcomes of participants who enrolled in a randomized controlled trial testing implementation of the Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis.

Materials and methods

Fifty-six persons with MS who enrolled in the trial participated in the current study which involved a semi-structured interview at 16-week follow-up. Interview data were analyzed using thematic analysis.

Results

Of the 56 participants, 26 ended up enrolling in a community-based exercise program specialized for persons with multiple sclerosis (MS), 7 joined another gym, 4 trained at home, and 17 took part in no specific program. Across all study participants, positive outcomes were reported across a number of domains including mental function, knowledge about the physical activity (PA) and MS, physical function, advocacy of PA to peers, daily participation, and body awareness. For those who enrolled in the community-based program, having a supportive and inclusive environment was critical to their PA experiences. Furthermore, environmental supports, particularly knowledgeable and supportive trainers and similar peers, contributed largely to the positive mental changes and increased knowledge gained.

Conclusions

Our study provides support for the promotion of PA in persons with MS and the development of community-based programs adapted for people with MS.

IMPLICATIONS FOR REHABILITATION

• Engaging in regular physical activity is associated with many positive benefits and outcomes for people with MS.

• Supportive elements such as a community of peers who also have MS, adaptive equipment, and trainers who are knowledgeable about MS are especially important for creating positive experiences including enjoyment from and desire to engage in regular physical activity.

• This study provides support for further advocacy (e.g., by persons with MS directly) and referral to community-based exercise programs adapted for people with MS.

Keywords:

• Multiple sclerosis
• physical activity
• exercise
• qualitative
• interview

Acknowledgments

The authors would like to thank all of the volunteers from the MacWheelers program and all of the study participants.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

All data requests can be made to the corresponding author (NA).

Additional information

Funding

Funding for this study was provided by the Multiple Sclerosis Society of Canada Operating Grant [EG 2001] awarded to AH, ALC and MF. Funding was also provided by the National MS Society Mentor-based Postdoctoral Fellowship Award in Rehabilitation Research [MB0028] awarded to MF to cover the time of NA.