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I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis
Disability and Health Journal xxx (xxxx) xxx
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Original Article
I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis* Kimberly S. Fasczewski*, Hannah M. Cook, Katie E. Campbell, Blair Anderes Appalachian State University, Department of Health and Exercise Science, Boone, NC, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 29 March 2019 Received in revised form 7 October 2019 Accepted 15 October 2019
Background: Multiple Sclerosis (MS) is a chronic neurodegenerative disease that results in deficits in physical and cognitive functioning. Research supports the use of physical activity (PA) to aid in MS symptom management and slow disease progression, however individuals diagnosed with MS are generally physically inactive. Social support has been shown to increase PA behavior in group exercise settings. Events such as Bike MS, a charity bicycle ride where individuals raise money for MS, could increase motivation for participation and therefore may be an ideal setting to introduce PA to individuals diagnosed with MS. Objective: /Hypothesis: The objective of the current research was to explore motives for participation in a Bike MS event in individuals diagnosed with MS and their family members, and examine if their Bike MS participation has translated to long-term PA behavior change and positive quality of life outcomes. Methods: A descriptive qualitative approach using semi-structured focus group, individual, and phone interviews, combined with observational field notes, was used to explore the experiences of seven individuals diagnosed with MS and four family members from two regional self-help groups who all actively participated in a Bike MS event. Results: Participants reported important social bonds, raising awareness for the cause, fundraising, longterm physical benefits, and overall increased quality of life as motives for participation. All participants reported long-term PA participation as a result of Bike MS participation. Conclusion: Results support using Bike MS to increase long-term PA participation in individuals with MS, resulting in positive quality of life outcomes. © 2019 Elsevier Inc. All rights reserved.
Keywords: Quality of life Motivation Physical activity Multiple sclerosis Self-determination theory Qualitative research
Multiple sclerosis (MS) is a chronic neurodegenerative disease of the central nervous system that affects individuals in the prime of their lives and often reduces physical and cognitive functioning.1 Limitations are dependent upon the location of demyelination and vary widely by individual but may include reduction in balance, coordination, vision, cognitive skills, and energy levels.2 In combination with drug therapies, a large body of research supports the use of physical activity (PA) as a supplementary treatment to slow disease progression and manage symptoms.3e7 A direct link between PA, increased physical functioning, and quality of life (QoL)
* This research was previously presented as a poster at the North American Society for Psychology of Sport and Physical Activity Annual Conference in Denver, CO in June of 2018. * Corresponding author. Department of Health and Exercise Science, Beaver College of Health Sciences, Appalachian State University, 1179 State Farm Road, Boone, NC, 28608, USA. E-mail address: [email protected] (K.S. Fasczewski).
has been found, yet the MS population as a whole is physically inactive.8e10 Research surrounding increasing PA participation in individuals diagnosed with MS has demonstrated that motivation for physical activity includes self-efficacy (situation-specific self-confidence) and self-determination (internalized motivation).11e13 Creating an environment where the individual diagnosed with MS feels competent in PA participation and inherently enjoys the experience results in increased motivation to maintain the behavior longterm.14 The research explains what motivates PA behavior in those individuals diagnosed with MS who are active, but still leaves gaps in the knowledge surrounding effective facilitation of behavior change and increased PA in the MS population as a whole. Longterm behavior change, specifically regarding PA participation, can be defined as a behavior that is maintained longer than six months.15 One possible means of increasing long-term PA adherence is through group-based PA.16,17 Individuals participate more often and continue behavior longer when they are connected to a
https://doi.org/10.1016/j.dhjo.2019.100853 1936-6574/© 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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group.16 Charity fundraising events based on PA (e.g. 5K run/walk events) are one type of group setting that may increase motivation for PA behavior.18 In this setting, the individual experiences the group dynamic of PA with individuals who are motivated by the same charity or cause. Concurrently, these types of activities potentially present the added incentive of making a difference through fundraising for a specific cause as part of participation. Little is known about motivation for participation in PA based charity events beyond the assumption that the participants have a relationship to the cause they have chosen to support.19 An event such as Bike MS, a two-day charity bicycle ride where individuals raise money for MS research, may be an ideal setting to introduce PA to individuals diagnosed with MS.20,21 The National MS Society promotes over 100 Bike MS events each year across the United States and collectively these events have raised over $1billion dollars for MS research since 1980.22 These events are targeted at individuals living with MS and friends and family members of those diagnosed with MS. Furthermore, the team-based structure of the Bike MS events, where most participants ride on “teams” that train and fundraise together, may increase motivation and social cohesion, thus potentially increasing long-term adherence.23 The aim of the current research was to explore motives for participation in a Bike MS event in individuals diagnosed with MS and their family members, and examine if their Bike MS participation has translated to long-term PA behavior change and positive QoL outcomes. Methods Study design This qualitative research study used a phenomenological deductive approach with multiple lenses to examine the phenomenon of interest e Bike MS participation.24 The goal of this type of examination was to understand the personal perspectives of the participants and gain insight into their motives for behavior.25 Multiple methods of data collection including focus groups, inperson individual interviews, phone interviews, and observational data in two different settings, provided a depth of information that allowed the research team to understand the experiences of the participants in a way that would not have been possible with a more myopic approach.26,27 Participants Research was approved by the overseeing Institutional Review Board and participants were recruited via email flyers and inperson announcements from two regional MS self-help groups. Both self-help groups had long-standing Bike MS teams established. Inclusion criteria for the study was any individual over the age of 18 years of age who participated in Bike MS events as a rider or volunteer, and had been previously diagnosed with MS, or was a family member of someone diagnosed with MS. Seventeen individuals expressed interest in participation however three were unable to participate due to scheduling/logistic conflicts, two were removed because they had not yet completed a Bike MS event, and one did not report a diagnosis of MS for themselves or a family member. Over a nine-month time period, seven individuals with a self-reported diagnosis of MS ages 40 to 65 (2 males, 5 females), and four family members, ages 18 to 70 (2 males, 2 female), all Caucasian, participated in the interviews. All participants diagnosed with MS were ambulatory, but all reported some level of impairment from MS, primarily fatigue, reduced balance, and motor skill limitations. All individuals interviewed were actively involved in the Bike MS team they were associated with, whether as
a riding participant, fundraiser, team support personnel, or event volunteer. See Table 1 for detailed participant information. Data collection - interviews A semi-structured interview guide was developed by the PI (KSF) based on her extensive previous research in the area of PA and QoL in individuals diagnosed with MS, the research questions, and literature on PA and QoL.14,28,29 The aim of the interview guide was to explore participants views on (a) motivation and perceived benefits of participating in Bike MS, (b) motivation and perceived benefits of participating in PA, (c) social aspects of Bike MS, (d) QoL outcomes, and (e) challenges, barrier and other negative outcomes (see supplementary material for full interview guide). Data were collected in a series of interviews e one focus group interview, two in-person one-on-one interviews, and two phone interviews e that explored these questions. The Focus group interview was conducted in a private room at the local public library and lasted approximately 1.5 h, one in-person interview was held at the selfhelp group meeting room in a local church, and one in-person interview was held at the participant’s home. Both in-person interviews lasted approximately 45e50 min and the phone interviews lasted approximately 30 min. All interviews were conducted between one- and three-months post- Bike MS event by the PI (KSF), an experienced qualitative researcher. The PI knew the participants as professional acquaintances e she had previously been a guest speaker at a self-help group meeting and worked with the MS population within the local community. The different formats for data collection were used to accommodate participants’ schedules however the same guide was used in all interviews. In the focus group setting, the individuals diagnosed with MS and their family/friends were interviewed concurrently. The mission of the self-help groups is to welcome anyone affected by MS; consequently, the self-help groups and the Bike MS teams are made up of a combination of people diagnosed with MS, their family, and friends. For this reason, data were collected with the same group structure, providing a realistic view of the interpersonal interactions and group dynamic.30 Due to mobility/transportation and scheduling conflicts, two individual in-person interviews and two phone interviews (one with two participants) were also done. While the focus groups provided a breadth of information, the in-person and phone individual interviews gave a more in-depth picture of participant experiences. All three methods of data collection returned similar results and were therefore deemed appropriate.30 Data collection e observational data Observational data were collected from the Bike MS event by one member of the research team (KEC) using standard observational protocol - detailed field notes were taken describing the event and notes on the researcher’s perceptions of the observations were added post hoc.24 The purpose of these observations was to gain an understanding of the social culture and interpersonal interactions of participants at the Bike MS event. Social bonds can influence health behavior31 therefore exploring the social aspect of Bike MS was important for in-depth comprehension of the participant experience. Five other members of the research team (research assistants) participated as volunteers by helping at a midride support station during the Bike MS event to gain a more indepth perspective on Bike MS during the ride as experienced by participants. This immersion of the research team as Bike MS volunteers provided a view of the mid-event participant interactions that would otherwise have been unattainable.26 Descriptive field notes from this portion of data collection were produced
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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Table 1 Participant information. Participant (Male/Female)
MS or Supporter
a
M1 F1 M2 F2 F3 F4 M3 F5 M4 F6 F7
MS MS MS Family MS MS Family MS Family MS Family
SG1 SG1/SG2 SG1 SG1 SG1 SG1/SG2 SG1/SG2 SG2 SG2 SG2/SG1 SG2
a b
Support Group
Years living with MS
Years doing Bike MS
Data Collection
7 11 6 n/a 23 31 n/a 22 n/a 33 n/a
7 11 5 2 3 20 20 15 15 On and off e 10 years 3
Individual interview Individual interview Focus Group Focus Group Focus Group b Phone interview b Phone interview Focus Group Focus Group Phone interview Focus Group
Some participants attended both groups e Bike MS group listed first. Combined phone interview.
immediately following the event prior to any debriefing or postevent discussions among the research team members. Due to the multiple methods of interview data collection, observation data were important for triangulation of results and depth of analysis.26
Data analysis A qualitative descriptive approach was used in data analysis.32 All interviews were transcribed verbatim using a University contracted transcription service and then checked for accuracy individually by two member of the research team (BA and HMC) at which time all names and identifying information were removed. All four member of the research team then individually read and reread the transcripts for farmiliarization.24 The team then met and determined the main themes based primarily on the ideas shared by the participants and informed by the observational data from the researcher field notes with consideration for the overall interest of the research questions.33 Following this, researchers individually coded the interviews and field notes into the themes and then met again as a team to discuss the individual coding.24 Any discrepancies were discussed until a consensus was reached.26 The consensus discussion involved both the contextual information from the transcripts and the observational data. Each of the main themes was then examined for sub-themes by the research team and divided into sub-themes as deemed necessary, again using consensus coding techniques. After completion of all coding, meaning was determined based on the coded theme/sub-theme and context using a consensus of all four members of the data analysis team.26 The PI (KSF) and one other research team member (KEC) participated in both data collection and data analysis. The other research team members (HMC, BA and five field research team members) performed only one role to ensure an additional measure of objectivity between data collection and analysis.27
Results Data analysis resulted in the emergence of four main themes with three of these themes producing additional sub-themes. The themes were: a.) taking action for the MS cause e with two subthemes of contributing by fundraising and raising awareness; b.) benefits and positive outcomes of being part of Bike MS e with three sub themes of physical benefits, mental benefits, and benefits to others; c.) social connections; and d.) negative impacts from Bike MS participation e with two sub themes of physical challenges and time management.
Taking action for the MS cause Contributing by fundraising. Participants felt fundraising for MS was a tangible way for them to contribute in the search for a cure. Medication developed from research was repeatedly credited for controlling MS and there was a feeling that the funds raised through Bike MS directly contributed to the research developing those medications. “The funds, when you see what a difference the fundraising and research [makes], you can truly see a path.” Some participants actively connected their fundraising to the medications they were now using. While speaking about her last relapse, one participant said, “There was medication that helped me recover that came from the research too... if they didn’t have the research where would I be?” This fundraising effort was a means to actively fight MS and take control of their condition. Raising awareness for MS. Raising awareness for the cause was important for participants. The participants believe that the Bike MS events “raised a great awareness” and was an important factor in the search for a cure. Those living with MS want others to realize the need for continued research. There was gratitude expressed to anyone without MS who participated. As one participant put it “You’re raising money to help fight a disease that I have. It’s not hard to say thank you.” and another stated “… knowing that there’s so many people that are there because they want to help raise money and awareness for MS, it makes me that much stronger and more motivated.” Awareness was mentioned at some point by every participant. They linked awareness to fundraising and fundraising to an eventual cure. Benefits and positive outcomes from being part of bike MS Physical benefits. Participants cited both immediate and longterm physical benefits they perceived from participation in Bike MS. They described feeling the immediate accomplishments from cycling, “… I noticed the more I exercise, the better I felt” or helping with the events “It brings us a great deal of joy.” For some, the immediate result was fatigue but within a day they felt better and stronger. This was noticeable to family and friends “[My dad], he’ll ride his bike ... and then he’ll be really wobbly and he doesn’t feel very good. But then the next day, his walking will be a lot better and he’ll feel really good.” Long-term benefits cited included physical improvements, and overall better functioning. Participants saw the direct connection between PA and long-term overall health. Statements such as "If you don’t move it, you lose it… Even if you can only move it a little bit, still move it" and “I think the most important thing that we can do is, with MS, is to exercise and take care of ourselves” were common during the interviews. The
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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majority expressed their belief that their involvement Bike MS events has slowed their disease progression. For instance, when speaking of living with MS for over 20 years, one participant said “… when I was diagnosed they told me ... you have to rest, don’t stress yourself out, take care of your body. I found out on my own the more I exercise, the better I felt.” In this way, the perceived physical benefits were directly related to QoL benefits for many. Participants reported being part of Bike MS for multiple years (see Table 1) and had plans to continue indefinitely stating, “as long as I’m able to do it [ride], I want to do it”, and “If I was able to retire from work, part-time, I would spend most of my time doing [active things]”. One participant explained “[even] if the MS rears its ugly head … I’m sure that would throw me for a loop…I would find another option of what I can and am capable of doing (for exercise)”. Mental strength. The conversations surrounding Bike MS participation led to discussions about improved mental strength as well. Participants felt that they developed a mental strength as they became physically stronger. “Because not only will you be stronger physically but mentally... that mental strength and outlook is almost as important as physical strength.” Another participant emphasized that to exercise with MS one must be “somewhat mentally strong and disciplined” to keep going and that events like Bike MS developed that mental strength which could translate to other aspects of life. When speaking about mental strength one participant stated “… down the road, if you do face a physical challenge or a health challenge, I think you’re more capable of fighting through that stronger.” Benefits to others. Bike MS is not just an individual endeavor. Many of the participants had family and friends who were involved because of the MS diagnosis. “We’re at the end of the ride, cheering people after they come across the line, my husband and I. He goes and does all those with me.” Many individuals credited Bike MS for increasing (or starting) PA behavior in their friends and family and believed that family members were living healthier lifestyles because of participation. “I think that’s what Bike MS is all about, is recruiting people to a healthy activity lifestyle.” Social connections All the participants talked about how the Bike MS team had become an important part of their lives. The team motivated them to participate. One participant emphasized that “being a part of a team gives you the encouragement to get out and bike.” Many individuals also like being able to ride with others who understood their struggles. “It’s about becoming a friend and doing social things together and supporting each other.” There was talk of the Bike MS team feeling like a “family” and how it was an integral part of their lives - “it was like our social life and we met so many wonderful people”. A number of participants reflected that they would likely not be physically active if they were not members of the Bike MS team. The group kept them coming back year after year. Two participants specifically spoke about how the social aspects of the Bike MS team also motivated their family members to be involved and live more active lives than they otherwise would. Speaking about her husband one participant stated “It makes him get up and do something. I mean, let’s get real. Otherwise, he wouldn’t be doing anything.” She credited the social connections they had developed through Bike MS for keeping her husband involved and riding his bike, which also translated to better overall health for him. In the same conversation the participant’s husband pointed out the impact family participation had on his wife “she likes to see her whole family involved. It makes me feel good because she feels good. The Tour [Bike MS Tour], it’s become a lifestyle for us.”
Negative impacts of bike MS participation Physical challenges. Participants shared that exercising with MS sometimes led to increased fatigue post-exercise or limited their ability to exercise. One participant stated “my health...sometimes that gets in the way.” and another explained she was never sure if her fatigue was due to exercising, aging, or MS “I push myself still… but even the doctors sometimes, they can’t tell you if it’s the MS or if it’s something else”. Similarly, one member shared that when riding uphill he struggles with balance and is sometimes “unable to stop himself” which leads to falls. Another participant shared how it was incredibly difficult to “bounce back” after one of her cycling accidents. Following the accident she had a “severe exacerbation” of her MS, resulting in difficulty with speech and reduced motor skills for some time. She had not regained the ability to ride her bike and linked her current physical condition to the bike accident. In total, three participants spoke specifically about falls during training for Bike MS that resulted in injuries with two reporting breaking at least one bone as a result of a bicycle accident. Time management. Bike MS participation also consumed a great deal of personal time for participants. One team leader discussed how he felt a strain on his family life as a result of the time and energy he put into the team. “I enjoy doing it. I feel like it’s kind of like my own personal mission. That means that I’m not home to do other things, which creates plenty of stress around the house. And so we have not really come to a good middle ground... It’s actually stressful.” Finding balance between the passion for participation in Bike MS and family and life responsibilities was a struggle echoed by several participants, especially with the added fatigue of exercise. More than one participant also explained that friends don’t always understand the commitment “We’ve got friends that say that I spend too much time with the MS thing…“, and “people think I put too much time in it, but it’s a labor of love.” Discussion This study aimed to gain insight into the motivation for participation in Bike MS fundraising events by individuals diagnosed with MS and their families. All participants reported long-term PA participation as a result of the Bike MS event. None had plans to cease involvement in PA or Bike MS in the future, suggesting this type of fundraiser event may be a means to consider when trying to increase PA. Individuals with MS are traditionally inactive10 and developing motivation to increase PA behavior has proven challenging.34 Healthcare providers may want to consider PA associated with a disease-related charitable cause as a means to increase beneficial PA behavior. Greater collaborative work between healthcare professional and charities encouraging individuals diagnosed with MS to become part of a Bike MS team, could provide a means for these individuals to be actively aiding in MS research, and at the same time develop a social network of like-mindedindividuals that supports their healthy behavior. The addition of the cause related activity and the social support may be an effective means of changing long-term PA behavior for portions of the MS population that have previously been physically inactive. Based on participant responses, the sources of motivation that appear to be facilitating participation in Bike MS is internalized in nature. In accordance with Self Determination Theory, increasing an individual’s autonomy, competence, and relatedness for an activity internalizes the motivation for that activity and results in long-term adherence.35,36 In the Bike MS participants, this is evidenced by the repeated discussion about how participation gives them control over MS (autonomy), how cycling improves physical functioning (competence), and how the people on the team are like family (relatedness). These responses points to motivation
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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becoming internalized with participation due to the very nature of the Bike MS event structure - individuals are part of a team effort and the fundraising aspect of the event provides control through the contributions to research. The physical benefits of PA are inherently developed as participation continues. If motivation is actually becoming internalized due to the nature of the Bike MS event as we posit, then the event by its very nature may be working to change long-term behavior. This points to long-term adherence and suggests that others impacted by chronic diseases, either directly or indirectly, may also be motivated in the same manner through similar events. Relatedness, through the social/group aspect of Bike MS played a pivotal role in participation for participants. The Bike MS atmosphere was part group PA, part family, and part MS support network. Group PA settings are successful in increasing long-term adherence however the underlying mechanisms are unclear.37 Further exploration into the group dynamic created in causerelated PA groups like Bike MS may help elucidate some of those mechanisms. The Bike MS team is unique due to the shared MS bond, however the common group goal of PA still exists. Often, training was just training, and MS was not mentioned. Social bonds were strong among the team because of the activity they were participating in together. These bonds became stronger as they worked together raising money for MS research and training for the Bike MS event. These findings align with previous research that supports cause-based physical activity program increases participation and results in increased overall health behavior.38 For these participants, Bike MS involvement resulted in positive QoL outcomes that were concurrently physical, psychological, and social in nature. The participants living with MS as well as their family members associated the increased PA levels with increases in physical functioning, both immediately and long-term, and these functional increases had a direct positive impact on the participants’ QoL. These results support previous research on increased QoL outcomes in individuals diagnosed with MS who participate in regular PA.39 Additionally, participants felt there was a psychological “toughness” they gained from Bike MS participation. They spoke about being mentally stronger and learning how to push themselves, and how this all translated into an ability to better face the adversity of the inevitable health challenges of the future. This toughness the participants are describing is resilience, which can be understood as positive actions/reactions in the face of adversity.40,41 Resilience has been shown to have a protective effect on MS disease progression, resulting in positive impacts on QoL.42 Furthermore, the aforementioned social bonds from the group involvement contribute to increased social QoL. Participants did not just ride together, they formed friendships that transcended Bike MS. Social support from PA participation has been shown to have a positive impact on QoL43 and for these participants, social support was extremely influential on their QoL. The friendships participants formed through Bike MS were a social network for multiple aspects of their lives. Although there were numerous positive outcomes from Bike MS participation, we would be remiss if we did not acknowledge the challenges participants reported. Falls, which can happen in any cycling context, have more severe consequences than in a healthy population due to the increased risk of osteoporosis in individuals diagnosed with MS.44 Combined with the balance issues often reported by individuals diagnosed with MS,2 participation in Bike MS may be a substantial health risk. Three participants reported falls as a result of training for Bike MS and two talked about broken bones as a result of these falls. Additionally, the time commitment required by Bike MS participants for planning and training meant that participants had to sacrifice other aspects of their lives. This introduced stress into the personal lives of some of the individuals.
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In MS stress can exacerbate symptoms45 meaning that the very thing (PA) that is being used to mitigate disease symptoms could have the opposite effect. As with all research, this project is not without limitations. Participants that are drawn to these type of events may have inherent characteristics that others diagnosed with MS do not possess, limiting the generalizability of these findings. Future research should focus on individuals diagnosed with MS who are not already members of an organized MS fundraising cause and see if participation changes their motivation and attitudes toward PA. Additionally, future research should explore the participation of family and friends in more depth. Expanding the ways we motivate individuals to be physically active through the use of fundraising events has large implications. Everyone has a personal connection to some chronic disease and many fundraising events exist connected to these diseases. Events such as the Susan G. Komen Race for the Cure, American Cancer Society Relay for Life, and the ALS Association Walk to Defeat ALS draw hundreds of thousands of participants each year.46e48 In conclusion, participants reported important social bonds, raising awareness for the cause, research fundraising, and positive physical benefits as motives for participation in the Bike MS event, resulting in overall increased QoL. Results support the idea that Bike MS can be used as a means to increase long-term PA participation in individuals with MS, resulting in positive QoL outcomes. This study lends insights into the motivation and drive behind participation in cause-related charity events and suggests that the very nature of these events may provide incentives for those impacted by MS or other chronic diseases to remain more physically active. Healthcare providers may want to consider this information when suggesting PA options for newly diagnosed patients with MS. Providers could develop working relationships with selfhelp groups by providing education on the benefits of long-term PA behavior and effective means of PA participation and self-help groups that support Bike MS and similar events could be recommended as part of the standard discussion on PA. Declaration of competing interest The authors have no conflict-of-interest. Acknowledgments The authors would like to thank the Greater Carolinas Chapter of the NMSS, Team MSBS and Team Canterbury for their hospitality during data collection, and all the individuals living with MS and their families who granted interviews. Appendix A. Supplementary data Supplementary data to this article can be found online at https://doi.org/10.1016/j.dhjo.2019.100853. Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. References 1. Coyle PK, Hamaad M. Multiple sclerosis. In: Neurologic Diseases in Women. second ed. New York, NY: Demos Medical Publishing; 2006:265e287. 2. Iezzoni L. Multiple Sclerosis. first ed. Santa Barbara, CA: ABC-CLIO, LLC; 2010. 3. Snook EM, Motl RW. Effect of exercise training on walking mobility in multiple sclerosis: a meta-analysis. Neurorehabilitation Neural Repair. 2009;23(2): 108e116. https://doi.org/10.1177/1545968308320641.
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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4. Motl RW, Dlugonski D, Pilutti L, Sandroff B, McAuley E. Premorbid physical activity predicts disability progression in relapsingeremitting multiple sclerosis. J Neurol Sci. 2012;323(1-2):123e127. https://doi.org/10.1016/ j.jns.2012.08.033. 5. Negaresh R, Motl RW, Mokhtarzade M, et al. Effects of exercise training on cytokines and adipokines in multiple Sclerosis: a systematic review. Mult Scler Relat Disord. 2018;24:91e100. https://doi.org/10.1016/j.msard.2018.06.008. 6. Bansi J, Kesselring J. Exercise and Sports Therapy in Multiple Sclerosis./Sporttherapie bei Multipler Sklerose. Ger J Sports Med Dtsch Z Sportmed. 2015;66(11): 308e312. 7. Baird JF, Sandroff BM, Motl RW. Therapies for mobility disability in persons with multiple sclerosis. Expert Rev Neurother. 2018;18(6):493e502. https:// doi.org/10.1080/14737175.2018.1478289. 8. Fasczewski KS, Rothberger SM, Gill DL. Why do they do it? Assessing self-report physical activity behavior and quality of life in individuals with multiple sclerosis. November J Health Psychol. 2017:1e12. https://doi.org/10.1177/ 1359105317739965. 9. Giacobbi PRJ, Dietrich F, Larson R, White LJ. Exercise and quality of life in women with multiple sclerosis. Adapt Phys Act Q. 2012;29(3):224e242. 10. Klaren RE, Motl RW, Dlugonski D, Sandroff BM, Pilutti L a. Objectively quantified physical activity in persons with multiple sclerosis. Arch Phys Med Rehabil. 2013;94(12):2342e2348. https://doi.org/10.1016/j.apmr.2013.07.011. 11. Casey B, Uszynski M, Hayes S, Motl R, Gallagher S, Coote S. Do multiple sclerosis symptoms moderate the relationship between self-efficacy and physical activity in people with multiple sclerosis? Rehabil Psychol. 2018;63(1):104e110. https://doi.org/10.1037/rep0000190. 12. Fasczewski KS, Gill DL. A model of motivation for physical activity in individuals diagnosed with multiple sclerosis. April Disabil Rehabil. 2018:1e8. https://doi.org/10.1080/09638288.2018.1459883. 13. Motl RW, McAuley E, Doerksen S, Hu L, Morris KS. Preliminary evidence that self-efficacy predicts physical activity in multiple sclerosis. Int J Rehabil Res. 2009;32(3):260e263. https://doi.org/10.1097/MRR.0b013e328325a5ed. 14. Motl RW, Snook EN. Physical activity, self-efficacy, and quality of life in multiple sclerosis. Ann Behav Med Publ Soc Behav Med. 2008;35(1):111e115. https://doi.org/10.1007/s12160-007-9006-7. 15. Prochaska JO, Velicer WF. The Transtheoretical Change. :11. 16. Harden SM, McEwan D, Sylvester BD, et al. Understanding for whom, under what conditions, and how group-based physical activity interventions are successful: a realist review. BMC Public Health. 2015;15(1). https://doi.org/ 10.1186/s12889-015-2270-8. 17. Learmonth YC, Paul L, Miller L, Mattison P, McFadyen a K. The effects of a 12week leisure centre-based, group exercise intervention for people moderately affected with multiple sclerosis: a randomized controlled pilot study. Clin Rehabil. 2012;26(7):579e593. https://doi.org/10.1177/0269215511423946. 18. Funk DC, O’Brien D. Examining motivation for charity Sport event participation: a comparison of recreation-based and charity-based motives AU - Filo, Kevin. J Leis Res. 2011;43(4):491e518. https://doi.org/10.1080/ 00222216.2011.11950247. 19. Goodwin A, Snelgrove R, Wood L, Taks M. Leveraging charity Sport events to develop a connection to a cause. Event Manag. 2017;21:175e184. https:// doi.org/10.3727/152599517X14878772869603. 20. Bennett R, Mousley W, Kitchin P, Ali-Choudhury R. Motivations for participating in charity-affiliated sporting events. J Cust Behav. 2007;6(2):155e178. https://doi.org/10.1362/147539207X223375. 21. Motl RW, Pilutti LA. The benefits of exercise training in multiple sclerosis. Nat Rev Neurol. 2012;8(9):487e497. https://doi.org/10.1038/nrneurol.2012.136. 22. BIKE MS. https://secure.nationalmssociety.org/site/SPageServer? pagename¼BIKE_HOM_splash. Accessed October 2, 2018. 23. Snelgrove R, Wood L, Havitz ME. Developing personal attachment to a physically active charity event: developing event attachment. Int J Nonprofit Voluntary Sect Mark. 2013;18(2):133e140. https://doi.org/10.1002/nvsm.1464. 24. Patton MQ. Qualitative Research and Evaluation Methods. third ed. Thousand Oaks, CA: Sage Publications; 2002. 25. Wilding C, Whiteford G. Phenomenological research: an exploration of conceptual, theoretical, and practical issues. OTJR Occup Participation Health. 2005;25(3):98e104. https://doi.org/10.1177/153944920502500303.
26. Creswell JW. Qualitative Inquiry and Research Design. third ed. Thousand Oaks, CA: Sage; 2013. 27. Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Method Approaches. second ed. Thousand Oaks, Calif: Sage Publications; 2003. 28. Motl RW, McAuley E. Pathways between physical activity and quality of life in adults with multiple sclerosis. Health Psychol. 2009;28(6):682e689. https:// doi.org/10.1037/a0015985. 29. Motl RW, McAuley E, Wynn D, Sandroff B, Suh Y. Physical activity, self-efficacy, and health-related quality of life in persons with multiple sclerosis: analysis of associations between individual-level changes over one year. Qual Life Res. 2013;22(2):253e261. https://doi.org/10.1007/s11136-012-0149-z. 30. Giacobbi Jr PR, Poczwardowski A, Hager P. A pragmatic research philosophy for applied Sport Psychology. Sport Psychol. 2005;19(1):18. 31. Umberson D, Crosnoe R, Reczek C. Social relationships and health behavior across the life course. Annu Rev Sociol. 2010;36(1):139e157. https://doi.org/ 10.1146/annurev-soc-070308-120011. 32. Sandelowski M. “Casing” the research case study. Res Nurs Health. 2010. https://doi.org/10.1002/nur.20421. n/a-n/a. 33. Colorafi KJ, Evans B. Qualitative descriptive methods in health science research. HERD Health Environ Res Des J. 2016;9(4):16e25. https://doi.org/10.1177/ 1937586715614171. 34. Klaren RE, Hubbard EA, Motl RW. Efficacy of a behavioral intervention for reducing sedentary behavior in persons with multiple sclerosis: a pilot study. Am J Prev Med. 2014;47(5):613e616. 35. Deci EL, Ryan RM, eds. Handbook of Self-Determination Research. Softcover ed. Rochester, NY: Univ. of Rochester Press; 2004. 36. Deci EL, Ryan RM. Intrinsic Motivation and Self-Determination in Human Behavior. New York: Plenum; 1985. 37. Estabrooks PA, Harden SM, Burke SM. Group dynamics in physical activity promotion: what works?: group dynamics in physical activity promotion. Soc Personal Psychol Compass. 2012;6(1):18e40. https://doi.org/10.1111/j.17519004.2011.00409.x. 38. Jeffery KA, Butryn TM. The motivations of runners in a cause-based marathontraining program. J Sport Behav. 2012;35(3):300e319. 39. Motl RW, Gosney JL. Effect of exercise training on quality of life in multiple sclerosis: a meta-analysis. Mult Scler Houndmills Basingstoke Engl. 2008;14(1): 129e135. https://doi.org/10.1177/1352458507080464. 40. Silverman AM, Verrall AM, Alschuler KN, Smith AE, Ehde DM. Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis. Disabil Rehabil. 2017;39(1):14e22. https://doi.org/10.3109/ 09638288.2016.1138556. 41. Stewart DE, Yuen T. A systematic review of resilience in the physically Ill. Psychosomatics. 2011;52(3):199e209. https://doi.org/10.1016/ j.psym.2011.01.036. 42. Black R, Dorstyn D. A biopsychosocial model of resilience for multiple sclerosis. J Health Psychol. 2015;20(11):1434e1444. https://doi.org/10.1177/ 1359105313512879. 43. Motl RW, McAuley E, Snook EM, Gliottoni RC. Physical activity and quality of life in multiple sclerosis: intermediary roles of disability, fatigue, mood, pain, self-efficacy and social support. Psychol Health Med. 2009;14(1):111e124. https://doi.org/10.1080/13548500802241902. 44. Gupta S, Ahsan I, Mahfooz N, Abdelhamid N, Ramanathan M, WeinstockGuttman B. Osteoporosis and multiple sclerosis: risk factors, pathophysiology, and therapeutic interventions. CNS Drugs. 2014;28(8):731e742. https:// doi.org/10.1007/s40263-014-0173-3. 45. Pakenham KI. Investigation of the coping antecedents to positive outcomes and distress in multiple sclerosis (MS). Psychol Health. 2006;21(5):633e649. https://doi.org/10.1080/14768320500422618. 46. The time is now to defeat ALS!. https://secure2.convio.net/alsa/site/ SPageServer/;jsessionid¼00000000.app293b?NONCE_TOKEN¼DBAA6228676 24C41F5C75D93897983BB&pagename¼WLK_landing. Accessed February 15, 2019. 47. Relay For Life. Cancer walk | American cancer society. https://www.cancer.org/ involved/fundraise/relay-for-life.html. Accessed February 15, 2019. 48. Race for the cure | susan G. Komen®. http://ww5.komen.org/RaceForTheCure/. Accessed February 15, 2019.
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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Original Article
I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis* Kimberly S. Fasczewski*, Hannah M. Cook, Katie E. Campbell, Blair Anderes Appalachian State University, Department of Health and Exercise Science, Boone, NC, USA
a r t i c l e i n f o
a b s t r a c t
Article history: Received 29 March 2019 Received in revised form 7 October 2019 Accepted 15 October 2019
Background: Multiple Sclerosis (MS) is a chronic neurodegenerative disease that results in deficits in physical and cognitive functioning. Research supports the use of physical activity (PA) to aid in MS symptom management and slow disease progression, however individuals diagnosed with MS are generally physically inactive. Social support has been shown to increase PA behavior in group exercise settings. Events such as Bike MS, a charity bicycle ride where individuals raise money for MS, could increase motivation for participation and therefore may be an ideal setting to introduce PA to individuals diagnosed with MS. Objective: /Hypothesis: The objective of the current research was to explore motives for participation in a Bike MS event in individuals diagnosed with MS and their family members, and examine if their Bike MS participation has translated to long-term PA behavior change and positive quality of life outcomes. Methods: A descriptive qualitative approach using semi-structured focus group, individual, and phone interviews, combined with observational field notes, was used to explore the experiences of seven individuals diagnosed with MS and four family members from two regional self-help groups who all actively participated in a Bike MS event. Results: Participants reported important social bonds, raising awareness for the cause, fundraising, longterm physical benefits, and overall increased quality of life as motives for participation. All participants reported long-term PA participation as a result of Bike MS participation. Conclusion: Results support using Bike MS to increase long-term PA participation in individuals with MS, resulting in positive quality of life outcomes. © 2019 Elsevier Inc. All rights reserved.
Keywords: Quality of life Motivation Physical activity Multiple sclerosis Self-determination theory Qualitative research
Multiple sclerosis (MS) is a chronic neurodegenerative disease of the central nervous system that affects individuals in the prime of their lives and often reduces physical and cognitive functioning.1 Limitations are dependent upon the location of demyelination and vary widely by individual but may include reduction in balance, coordination, vision, cognitive skills, and energy levels.2 In combination with drug therapies, a large body of research supports the use of physical activity (PA) as a supplementary treatment to slow disease progression and manage symptoms.3e7 A direct link between PA, increased physical functioning, and quality of life (QoL)
* This research was previously presented as a poster at the North American Society for Psychology of Sport and Physical Activity Annual Conference in Denver, CO in June of 2018. * Corresponding author. Department of Health and Exercise Science, Beaver College of Health Sciences, Appalachian State University, 1179 State Farm Road, Boone, NC, 28608, USA. E-mail address: [email protected] (K.S. Fasczewski).
has been found, yet the MS population as a whole is physically inactive.8e10 Research surrounding increasing PA participation in individuals diagnosed with MS has demonstrated that motivation for physical activity includes self-efficacy (situation-specific self-confidence) and self-determination (internalized motivation).11e13 Creating an environment where the individual diagnosed with MS feels competent in PA participation and inherently enjoys the experience results in increased motivation to maintain the behavior longterm.14 The research explains what motivates PA behavior in those individuals diagnosed with MS who are active, but still leaves gaps in the knowledge surrounding effective facilitation of behavior change and increased PA in the MS population as a whole. Longterm behavior change, specifically regarding PA participation, can be defined as a behavior that is maintained longer than six months.15 One possible means of increasing long-term PA adherence is through group-based PA.16,17 Individuals participate more often and continue behavior longer when they are connected to a
https://doi.org/10.1016/j.dhjo.2019.100853 1936-6574/© 2019 Elsevier Inc. All rights reserved.
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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group.16 Charity fundraising events based on PA (e.g. 5K run/walk events) are one type of group setting that may increase motivation for PA behavior.18 In this setting, the individual experiences the group dynamic of PA with individuals who are motivated by the same charity or cause. Concurrently, these types of activities potentially present the added incentive of making a difference through fundraising for a specific cause as part of participation. Little is known about motivation for participation in PA based charity events beyond the assumption that the participants have a relationship to the cause they have chosen to support.19 An event such as Bike MS, a two-day charity bicycle ride where individuals raise money for MS research, may be an ideal setting to introduce PA to individuals diagnosed with MS.20,21 The National MS Society promotes over 100 Bike MS events each year across the United States and collectively these events have raised over $1billion dollars for MS research since 1980.22 These events are targeted at individuals living with MS and friends and family members of those diagnosed with MS. Furthermore, the team-based structure of the Bike MS events, where most participants ride on “teams” that train and fundraise together, may increase motivation and social cohesion, thus potentially increasing long-term adherence.23 The aim of the current research was to explore motives for participation in a Bike MS event in individuals diagnosed with MS and their family members, and examine if their Bike MS participation has translated to long-term PA behavior change and positive QoL outcomes. Methods Study design This qualitative research study used a phenomenological deductive approach with multiple lenses to examine the phenomenon of interest e Bike MS participation.24 The goal of this type of examination was to understand the personal perspectives of the participants and gain insight into their motives for behavior.25 Multiple methods of data collection including focus groups, inperson individual interviews, phone interviews, and observational data in two different settings, provided a depth of information that allowed the research team to understand the experiences of the participants in a way that would not have been possible with a more myopic approach.26,27 Participants Research was approved by the overseeing Institutional Review Board and participants were recruited via email flyers and inperson announcements from two regional MS self-help groups. Both self-help groups had long-standing Bike MS teams established. Inclusion criteria for the study was any individual over the age of 18 years of age who participated in Bike MS events as a rider or volunteer, and had been previously diagnosed with MS, or was a family member of someone diagnosed with MS. Seventeen individuals expressed interest in participation however three were unable to participate due to scheduling/logistic conflicts, two were removed because they had not yet completed a Bike MS event, and one did not report a diagnosis of MS for themselves or a family member. Over a nine-month time period, seven individuals with a self-reported diagnosis of MS ages 40 to 65 (2 males, 5 females), and four family members, ages 18 to 70 (2 males, 2 female), all Caucasian, participated in the interviews. All participants diagnosed with MS were ambulatory, but all reported some level of impairment from MS, primarily fatigue, reduced balance, and motor skill limitations. All individuals interviewed were actively involved in the Bike MS team they were associated with, whether as
a riding participant, fundraiser, team support personnel, or event volunteer. See Table 1 for detailed participant information. Data collection - interviews A semi-structured interview guide was developed by the PI (KSF) based on her extensive previous research in the area of PA and QoL in individuals diagnosed with MS, the research questions, and literature on PA and QoL.14,28,29 The aim of the interview guide was to explore participants views on (a) motivation and perceived benefits of participating in Bike MS, (b) motivation and perceived benefits of participating in PA, (c) social aspects of Bike MS, (d) QoL outcomes, and (e) challenges, barrier and other negative outcomes (see supplementary material for full interview guide). Data were collected in a series of interviews e one focus group interview, two in-person one-on-one interviews, and two phone interviews e that explored these questions. The Focus group interview was conducted in a private room at the local public library and lasted approximately 1.5 h, one in-person interview was held at the selfhelp group meeting room in a local church, and one in-person interview was held at the participant’s home. Both in-person interviews lasted approximately 45e50 min and the phone interviews lasted approximately 30 min. All interviews were conducted between one- and three-months post- Bike MS event by the PI (KSF), an experienced qualitative researcher. The PI knew the participants as professional acquaintances e she had previously been a guest speaker at a self-help group meeting and worked with the MS population within the local community. The different formats for data collection were used to accommodate participants’ schedules however the same guide was used in all interviews. In the focus group setting, the individuals diagnosed with MS and their family/friends were interviewed concurrently. The mission of the self-help groups is to welcome anyone affected by MS; consequently, the self-help groups and the Bike MS teams are made up of a combination of people diagnosed with MS, their family, and friends. For this reason, data were collected with the same group structure, providing a realistic view of the interpersonal interactions and group dynamic.30 Due to mobility/transportation and scheduling conflicts, two individual in-person interviews and two phone interviews (one with two participants) were also done. While the focus groups provided a breadth of information, the in-person and phone individual interviews gave a more in-depth picture of participant experiences. All three methods of data collection returned similar results and were therefore deemed appropriate.30 Data collection e observational data Observational data were collected from the Bike MS event by one member of the research team (KEC) using standard observational protocol - detailed field notes were taken describing the event and notes on the researcher’s perceptions of the observations were added post hoc.24 The purpose of these observations was to gain an understanding of the social culture and interpersonal interactions of participants at the Bike MS event. Social bonds can influence health behavior31 therefore exploring the social aspect of Bike MS was important for in-depth comprehension of the participant experience. Five other members of the research team (research assistants) participated as volunteers by helping at a midride support station during the Bike MS event to gain a more indepth perspective on Bike MS during the ride as experienced by participants. This immersion of the research team as Bike MS volunteers provided a view of the mid-event participant interactions that would otherwise have been unattainable.26 Descriptive field notes from this portion of data collection were produced
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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Table 1 Participant information. Participant (Male/Female)
MS or Supporter
a
M1 F1 M2 F2 F3 F4 M3 F5 M4 F6 F7
MS MS MS Family MS MS Family MS Family MS Family
SG1 SG1/SG2 SG1 SG1 SG1 SG1/SG2 SG1/SG2 SG2 SG2 SG2/SG1 SG2
a b
Support Group
Years living with MS
Years doing Bike MS
Data Collection
7 11 6 n/a 23 31 n/a 22 n/a 33 n/a
7 11 5 2 3 20 20 15 15 On and off e 10 years 3
Individual interview Individual interview Focus Group Focus Group Focus Group b Phone interview b Phone interview Focus Group Focus Group Phone interview Focus Group
Some participants attended both groups e Bike MS group listed first. Combined phone interview.
immediately following the event prior to any debriefing or postevent discussions among the research team members. Due to the multiple methods of interview data collection, observation data were important for triangulation of results and depth of analysis.26
Data analysis A qualitative descriptive approach was used in data analysis.32 All interviews were transcribed verbatim using a University contracted transcription service and then checked for accuracy individually by two member of the research team (BA and HMC) at which time all names and identifying information were removed. All four member of the research team then individually read and reread the transcripts for farmiliarization.24 The team then met and determined the main themes based primarily on the ideas shared by the participants and informed by the observational data from the researcher field notes with consideration for the overall interest of the research questions.33 Following this, researchers individually coded the interviews and field notes into the themes and then met again as a team to discuss the individual coding.24 Any discrepancies were discussed until a consensus was reached.26 The consensus discussion involved both the contextual information from the transcripts and the observational data. Each of the main themes was then examined for sub-themes by the research team and divided into sub-themes as deemed necessary, again using consensus coding techniques. After completion of all coding, meaning was determined based on the coded theme/sub-theme and context using a consensus of all four members of the data analysis team.26 The PI (KSF) and one other research team member (KEC) participated in both data collection and data analysis. The other research team members (HMC, BA and five field research team members) performed only one role to ensure an additional measure of objectivity between data collection and analysis.27
Results Data analysis resulted in the emergence of four main themes with three of these themes producing additional sub-themes. The themes were: a.) taking action for the MS cause e with two subthemes of contributing by fundraising and raising awareness; b.) benefits and positive outcomes of being part of Bike MS e with three sub themes of physical benefits, mental benefits, and benefits to others; c.) social connections; and d.) negative impacts from Bike MS participation e with two sub themes of physical challenges and time management.
Taking action for the MS cause Contributing by fundraising. Participants felt fundraising for MS was a tangible way for them to contribute in the search for a cure. Medication developed from research was repeatedly credited for controlling MS and there was a feeling that the funds raised through Bike MS directly contributed to the research developing those medications. “The funds, when you see what a difference the fundraising and research [makes], you can truly see a path.” Some participants actively connected their fundraising to the medications they were now using. While speaking about her last relapse, one participant said, “There was medication that helped me recover that came from the research too... if they didn’t have the research where would I be?” This fundraising effort was a means to actively fight MS and take control of their condition. Raising awareness for MS. Raising awareness for the cause was important for participants. The participants believe that the Bike MS events “raised a great awareness” and was an important factor in the search for a cure. Those living with MS want others to realize the need for continued research. There was gratitude expressed to anyone without MS who participated. As one participant put it “You’re raising money to help fight a disease that I have. It’s not hard to say thank you.” and another stated “… knowing that there’s so many people that are there because they want to help raise money and awareness for MS, it makes me that much stronger and more motivated.” Awareness was mentioned at some point by every participant. They linked awareness to fundraising and fundraising to an eventual cure. Benefits and positive outcomes from being part of bike MS Physical benefits. Participants cited both immediate and longterm physical benefits they perceived from participation in Bike MS. They described feeling the immediate accomplishments from cycling, “… I noticed the more I exercise, the better I felt” or helping with the events “It brings us a great deal of joy.” For some, the immediate result was fatigue but within a day they felt better and stronger. This was noticeable to family and friends “[My dad], he’ll ride his bike ... and then he’ll be really wobbly and he doesn’t feel very good. But then the next day, his walking will be a lot better and he’ll feel really good.” Long-term benefits cited included physical improvements, and overall better functioning. Participants saw the direct connection between PA and long-term overall health. Statements such as "If you don’t move it, you lose it… Even if you can only move it a little bit, still move it" and “I think the most important thing that we can do is, with MS, is to exercise and take care of ourselves” were common during the interviews. The
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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majority expressed their belief that their involvement Bike MS events has slowed their disease progression. For instance, when speaking of living with MS for over 20 years, one participant said “… when I was diagnosed they told me ... you have to rest, don’t stress yourself out, take care of your body. I found out on my own the more I exercise, the better I felt.” In this way, the perceived physical benefits were directly related to QoL benefits for many. Participants reported being part of Bike MS for multiple years (see Table 1) and had plans to continue indefinitely stating, “as long as I’m able to do it [ride], I want to do it”, and “If I was able to retire from work, part-time, I would spend most of my time doing [active things]”. One participant explained “[even] if the MS rears its ugly head … I’m sure that would throw me for a loop…I would find another option of what I can and am capable of doing (for exercise)”. Mental strength. The conversations surrounding Bike MS participation led to discussions about improved mental strength as well. Participants felt that they developed a mental strength as they became physically stronger. “Because not only will you be stronger physically but mentally... that mental strength and outlook is almost as important as physical strength.” Another participant emphasized that to exercise with MS one must be “somewhat mentally strong and disciplined” to keep going and that events like Bike MS developed that mental strength which could translate to other aspects of life. When speaking about mental strength one participant stated “… down the road, if you do face a physical challenge or a health challenge, I think you’re more capable of fighting through that stronger.” Benefits to others. Bike MS is not just an individual endeavor. Many of the participants had family and friends who were involved because of the MS diagnosis. “We’re at the end of the ride, cheering people after they come across the line, my husband and I. He goes and does all those with me.” Many individuals credited Bike MS for increasing (or starting) PA behavior in their friends and family and believed that family members were living healthier lifestyles because of participation. “I think that’s what Bike MS is all about, is recruiting people to a healthy activity lifestyle.” Social connections All the participants talked about how the Bike MS team had become an important part of their lives. The team motivated them to participate. One participant emphasized that “being a part of a team gives you the encouragement to get out and bike.” Many individuals also like being able to ride with others who understood their struggles. “It’s about becoming a friend and doing social things together and supporting each other.” There was talk of the Bike MS team feeling like a “family” and how it was an integral part of their lives - “it was like our social life and we met so many wonderful people”. A number of participants reflected that they would likely not be physically active if they were not members of the Bike MS team. The group kept them coming back year after year. Two participants specifically spoke about how the social aspects of the Bike MS team also motivated their family members to be involved and live more active lives than they otherwise would. Speaking about her husband one participant stated “It makes him get up and do something. I mean, let’s get real. Otherwise, he wouldn’t be doing anything.” She credited the social connections they had developed through Bike MS for keeping her husband involved and riding his bike, which also translated to better overall health for him. In the same conversation the participant’s husband pointed out the impact family participation had on his wife “she likes to see her whole family involved. It makes me feel good because she feels good. The Tour [Bike MS Tour], it’s become a lifestyle for us.”
Negative impacts of bike MS participation Physical challenges. Participants shared that exercising with MS sometimes led to increased fatigue post-exercise or limited their ability to exercise. One participant stated “my health...sometimes that gets in the way.” and another explained she was never sure if her fatigue was due to exercising, aging, or MS “I push myself still… but even the doctors sometimes, they can’t tell you if it’s the MS or if it’s something else”. Similarly, one member shared that when riding uphill he struggles with balance and is sometimes “unable to stop himself” which leads to falls. Another participant shared how it was incredibly difficult to “bounce back” after one of her cycling accidents. Following the accident she had a “severe exacerbation” of her MS, resulting in difficulty with speech and reduced motor skills for some time. She had not regained the ability to ride her bike and linked her current physical condition to the bike accident. In total, three participants spoke specifically about falls during training for Bike MS that resulted in injuries with two reporting breaking at least one bone as a result of a bicycle accident. Time management. Bike MS participation also consumed a great deal of personal time for participants. One team leader discussed how he felt a strain on his family life as a result of the time and energy he put into the team. “I enjoy doing it. I feel like it’s kind of like my own personal mission. That means that I’m not home to do other things, which creates plenty of stress around the house. And so we have not really come to a good middle ground... It’s actually stressful.” Finding balance between the passion for participation in Bike MS and family and life responsibilities was a struggle echoed by several participants, especially with the added fatigue of exercise. More than one participant also explained that friends don’t always understand the commitment “We’ve got friends that say that I spend too much time with the MS thing…“, and “people think I put too much time in it, but it’s a labor of love.” Discussion This study aimed to gain insight into the motivation for participation in Bike MS fundraising events by individuals diagnosed with MS and their families. All participants reported long-term PA participation as a result of the Bike MS event. None had plans to cease involvement in PA or Bike MS in the future, suggesting this type of fundraiser event may be a means to consider when trying to increase PA. Individuals with MS are traditionally inactive10 and developing motivation to increase PA behavior has proven challenging.34 Healthcare providers may want to consider PA associated with a disease-related charitable cause as a means to increase beneficial PA behavior. Greater collaborative work between healthcare professional and charities encouraging individuals diagnosed with MS to become part of a Bike MS team, could provide a means for these individuals to be actively aiding in MS research, and at the same time develop a social network of like-mindedindividuals that supports their healthy behavior. The addition of the cause related activity and the social support may be an effective means of changing long-term PA behavior for portions of the MS population that have previously been physically inactive. Based on participant responses, the sources of motivation that appear to be facilitating participation in Bike MS is internalized in nature. In accordance with Self Determination Theory, increasing an individual’s autonomy, competence, and relatedness for an activity internalizes the motivation for that activity and results in long-term adherence.35,36 In the Bike MS participants, this is evidenced by the repeated discussion about how participation gives them control over MS (autonomy), how cycling improves physical functioning (competence), and how the people on the team are like family (relatedness). These responses points to motivation
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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becoming internalized with participation due to the very nature of the Bike MS event structure - individuals are part of a team effort and the fundraising aspect of the event provides control through the contributions to research. The physical benefits of PA are inherently developed as participation continues. If motivation is actually becoming internalized due to the nature of the Bike MS event as we posit, then the event by its very nature may be working to change long-term behavior. This points to long-term adherence and suggests that others impacted by chronic diseases, either directly or indirectly, may also be motivated in the same manner through similar events. Relatedness, through the social/group aspect of Bike MS played a pivotal role in participation for participants. The Bike MS atmosphere was part group PA, part family, and part MS support network. Group PA settings are successful in increasing long-term adherence however the underlying mechanisms are unclear.37 Further exploration into the group dynamic created in causerelated PA groups like Bike MS may help elucidate some of those mechanisms. The Bike MS team is unique due to the shared MS bond, however the common group goal of PA still exists. Often, training was just training, and MS was not mentioned. Social bonds were strong among the team because of the activity they were participating in together. These bonds became stronger as they worked together raising money for MS research and training for the Bike MS event. These findings align with previous research that supports cause-based physical activity program increases participation and results in increased overall health behavior.38 For these participants, Bike MS involvement resulted in positive QoL outcomes that were concurrently physical, psychological, and social in nature. The participants living with MS as well as their family members associated the increased PA levels with increases in physical functioning, both immediately and long-term, and these functional increases had a direct positive impact on the participants’ QoL. These results support previous research on increased QoL outcomes in individuals diagnosed with MS who participate in regular PA.39 Additionally, participants felt there was a psychological “toughness” they gained from Bike MS participation. They spoke about being mentally stronger and learning how to push themselves, and how this all translated into an ability to better face the adversity of the inevitable health challenges of the future. This toughness the participants are describing is resilience, which can be understood as positive actions/reactions in the face of adversity.40,41 Resilience has been shown to have a protective effect on MS disease progression, resulting in positive impacts on QoL.42 Furthermore, the aforementioned social bonds from the group involvement contribute to increased social QoL. Participants did not just ride together, they formed friendships that transcended Bike MS. Social support from PA participation has been shown to have a positive impact on QoL43 and for these participants, social support was extremely influential on their QoL. The friendships participants formed through Bike MS were a social network for multiple aspects of their lives. Although there were numerous positive outcomes from Bike MS participation, we would be remiss if we did not acknowledge the challenges participants reported. Falls, which can happen in any cycling context, have more severe consequences than in a healthy population due to the increased risk of osteoporosis in individuals diagnosed with MS.44 Combined with the balance issues often reported by individuals diagnosed with MS,2 participation in Bike MS may be a substantial health risk. Three participants reported falls as a result of training for Bike MS and two talked about broken bones as a result of these falls. Additionally, the time commitment required by Bike MS participants for planning and training meant that participants had to sacrifice other aspects of their lives. This introduced stress into the personal lives of some of the individuals.
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In MS stress can exacerbate symptoms45 meaning that the very thing (PA) that is being used to mitigate disease symptoms could have the opposite effect. As with all research, this project is not without limitations. Participants that are drawn to these type of events may have inherent characteristics that others diagnosed with MS do not possess, limiting the generalizability of these findings. Future research should focus on individuals diagnosed with MS who are not already members of an organized MS fundraising cause and see if participation changes their motivation and attitudes toward PA. Additionally, future research should explore the participation of family and friends in more depth. Expanding the ways we motivate individuals to be physically active through the use of fundraising events has large implications. Everyone has a personal connection to some chronic disease and many fundraising events exist connected to these diseases. Events such as the Susan G. Komen Race for the Cure, American Cancer Society Relay for Life, and the ALS Association Walk to Defeat ALS draw hundreds of thousands of participants each year.46e48 In conclusion, participants reported important social bonds, raising awareness for the cause, research fundraising, and positive physical benefits as motives for participation in the Bike MS event, resulting in overall increased QoL. Results support the idea that Bike MS can be used as a means to increase long-term PA participation in individuals with MS, resulting in positive QoL outcomes. This study lends insights into the motivation and drive behind participation in cause-related charity events and suggests that the very nature of these events may provide incentives for those impacted by MS or other chronic diseases to remain more physically active. Healthcare providers may want to consider this information when suggesting PA options for newly diagnosed patients with MS. Providers could develop working relationships with selfhelp groups by providing education on the benefits of long-term PA behavior and effective means of PA participation and self-help groups that support Bike MS and similar events could be recommended as part of the standard discussion on PA. Declaration of competing interest The authors have no conflict-of-interest. Acknowledgments The authors would like to thank the Greater Carolinas Chapter of the NMSS, Team MSBS and Team Canterbury for their hospitality during data collection, and all the individuals living with MS and their families who granted interviews. Appendix A. Supplementary data Supplementary data to this article can be found online at https://doi.org/10.1016/j.dhjo.2019.100853. Funding This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. References 1. Coyle PK, Hamaad M. Multiple sclerosis. In: Neurologic Diseases in Women. second ed. New York, NY: Demos Medical Publishing; 2006:265e287. 2. Iezzoni L. Multiple Sclerosis. first ed. Santa Barbara, CA: ABC-CLIO, LLC; 2010. 3. Snook EM, Motl RW. Effect of exercise training on walking mobility in multiple sclerosis: a meta-analysis. Neurorehabilitation Neural Repair. 2009;23(2): 108e116. https://doi.org/10.1177/1545968308320641.
Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853
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Please cite this article as: Fasczewski KS et al., I ride for MS: The impact of bike MS participation on motivation for physical activity in individuals with multiple sclerosis, Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2019.100853