Physical Activity Experiences of People with Multiple Sclerosis during the COVID-19 Pandemic
Abstract
:1. Introduction
1.1. Multiple Sclerosis
1.2. Multiple Sclerosis & COVID-19
1.3. Multiple Sclerosis & Physical Activity
1.3.1. Social Ecological Model
1.3.2. Multiple Sclerosis & Physical Activity during COVID-19
2. Materials and Methods
2.1. Participants & Recruitment
2.2. Data Generation
2.3. Data Analysis
- Familiarization involved getting to know the dataset through the transcription of interview audio files, reading and re-reading transcripts, and taking initial notes of ideas of interest to answer the research questions.
- Generating initial codes consisted of identifying and labelling points of interest and relevance in the dataset as the first step in organizing data into meaningful groups. This was done through a combination of highlighting, cutting, and pasting pieces of interviews into charts and tables through multiple rounds of reading and re-reading the transcripts.
- Initial themes were developed by grouping coded and collated data into broader categories using charts and tables to capture the shared meaning. Sub-themes were developed where necessary to identify a distinct pattern within a theme.
- Reviewing and refining themes. Through critical discussions, analytical reflection, and returning to sections of the dataset, themes were refined to ensure they appropriately answered the research questions, reflected the lived experience of participants, and included a central organizing concept with a distinct definition.
- Defining and naming themes, where the main ideas were determined, appropriately named to reflect experiences and answer the research questions, and data extracts (e.g., quotes) exemplifying these ideas were identified.
- Writing involved collating developed themes, definitions, and stories captured within the dataset through a written narrative with data extracts to illustrate themes.
2.4. Rigor
3. Results
3.1. Experiences of Physical Activity during the COVID-19 Pandemic
3.1.1. Changing Opportunities and Adapting to New Opportunities
“It’s kind of just losing the routine and then trying to get back to, ok, how am I going to do this now? Like you’re used to going to the gym 2 to 3 times a week uh doing your routine at the gym and when you lose that, because our gym closed.”
Creativity & Adaption
“I have set up my home room differently, so I don’t know if you can see, but behind me are some mirrored doors. I’ve changed it so when I’m live streaming I can still be looking in the mirror to see what my form is like while I’ve got the instructor over my back. To more simulate what we were doing in the dance studio.”
“I actually bought snowshoes this year too, so, I go snowshoeing too, not just walking, I guess. Yeah. That’s totally new this year.”
“For years I went to a bootcamp in town and now I do it at home using it online. He has become an online bootcamp instructor to serve those of us who can’t come in.”
Benefits to New Ways of Doing Physical Activity
“[i] t doesn’t matter where you live or what you have available, you can be part of a class, a group and all be receiving the same benefits.”
“I do like the fact that we get on, it’s sort of a 45-min to an hour, two days a week it’s 45-min and on Fridays it’s an hour-long class. Um, what I like is it’s time, you get it done, there’s no travelling time, there’s no whatever, so, um, if I’m tired afterwards or if I need to take a break, um, I just turn my video off. I take my break. So that’s, that’s better for me and my MS. Where in the studio, you’re going, oh everybody’s watching.”
“I personally would love to continue to work out at home because it’s proven its benefits and like having a busy school schedule, like and just being able to work out when it’s convenient that’s been super beneficial.”
Drawbacks of New Ways of Doing Physical Activity
“And now, like this morning we didn’t go out until 11:15 or so because we are not all part of a group. There are some drawbacks to that, for example today not going until 11:15, not getting back until 1:00 after a good 30 kilometres, then I come home, I’m tired and I find I’m less motivated to do anything in the afternoon. I’m not doing as many different things, where I guess I think pre-COVID I was a better balancer at my time management.”
“Not having other people there. Like sometimes the vibe when everybody gets working out together, it pushes you, makes you work out harder. Sometimes when you’re by yourself nobody is telling you to you know, hold that longer or to tighten up or you know. I miss that.”
3.1.2. Social Isolation & Physical Activity
“I mean during the summer there were weeks that I went without seeing anyone except my husband. That would be the biggest thing is the isolation. That I do things. I do so many things alone now.”
Physical Activity Connects Us
“Because staying at home drives me crazy. Like I can’t do that. Actually, it causes worse depression for MS being at home all day. Except for walking with [friend’s name]. We go for long walks with dogs or whatever. Like kilometers.”
“[A] lot of the people that I see on those walks I start seeing daily and they just start saying hi, how are you. You get to know them a little bit. Again, it’s nice for me, somebody who’s a homebody, who doesn’t get to see people all the time, right. It’s just that nice interaction for someone who literally doesn’t get that all day long.”
3.1.3. Adapting Physical Activity to Stay Safe from COVID-19
Concerns & Caution
“[I] t’s definitely been terrifying because I am not only higher on the disability scale with MS, but I have taken LEMTRADA® which is a chemotherapy or an immunosuppressant.”
“And even going outside for walks and stuff in the beginning because COVID-19 is scary, because um living with a disease it’s scarier.”
“I’m very careful to make sure that anybody I come into contact with has an extremely small bubble. We wear masks or you know, I don’t go into stores, I don’t do anything like that, so, yeah each and every activity that I do I have to think about what’s the consequence. Like, um, in the beginning and I was still kind of doing my life as normal. Until one of my daughters said, hey, I kind of like you to be around, so do you sort of think you can smarten up and isolate yourself.”
“So, my risk assessment has changed, now it’s not just: is there going to be a bear; are there going to be rocks; am I going to fall and hurt myself? You know, is weather going to come in? Now it’s also, who are you going to come into contact with? Um, are you going to bring COVID home to your husband? Are you going to, you know?”
3.2. Facilitators & Barriers of Physical Activity during the COVID-19 Pandemic
3.2.1. Individual
3.2.2. Social Environment
3.2.3. Physical Environment
3.2.4. Policy
4. Discussion
4.1. Limitations
4.2. Recommendations for Practice
- If you are active, other people with MS may be encouraged by your motivation and experience; consider sharing your success with others
- Set achievable goals
- Seek out physical activity information and materials specifically for people living with MS from trusted sources
- Online options can be valuable opportunities for people who may not otherwise be able to participate in in-person physical activity (e.g., due to distance or other barriers), even after COVID-19 is resolved
- Incorporating social connection and encouraging social engagement as part of physical activity programming may improve adherence and enjoyment for participants with MS
- Individuals with MS appreciate professionals who are willing to work with them to tailor exercise to their ability; each person with MS experiences symptoms in a different way
- More widespread sharing of information is needed about physical activity, the benefits of physical activity, and how one can use things around you to be physical active without an exercise facility (e.g., at home, outside)
- Improvements to the accessibility of built environments benefits everyone
- Making booking systems (i.e., the pool) straightforward and flexible
- Develop physical activity and recreation spaces that enable both socialization and physical activity.
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Topic | Example Interview Questions |
---|---|
Physical activity experiences during COVID-19 | →What does physical activity mean to you? →What motivates you to be physically active? →In what ways has your physical activity changed during the pandemic? |
Facilitators and barriers to physical activity during COVID-19 | →What has helped you to be active throughout the pandemic? →Have you used any online programming to support your physical activity? Please explain. →Is there anything that has stopped you from being active during COVID? →Do you have any concerns about being active during COVID? |
Characteristic | Participant Responses |
---|---|
Age range (n,%) | 18–33 (2, 18.2%) 34–49 (5, 45.5%) 50–64 (4, 36.4%) |
Gender (n,%) | Woman (9, 81.9%) Man (2, 18.2%) |
Community size (n,%) 1 | Rural (1, 9.1%) Small population center (2, 18.2%) Medium population center (5, 45.5%) Large population center (3, 27.3%) |
Type of MS (n,%) | No type identified (1, 9.1%) Relapsing remitting (6, 54.5%) Secondary progressive (4, 36.4%) |
Years living with MS (n,%) | Unknown (1, 10%) 1–5 (3, 30%) 6–10 (1, 10%) 11–15 (0, 0%) 16–20 (1, 10%) 21–26 (5, 50%) |
Mobility aid (n,%) | No mobility aid (5, 45.5%) Cane, walker, poles or other (4, 36.4%) Motorized wheelchair or scooter (2, 18.2%) |
Theme | Definition | Subthemes |
---|---|---|
Changing opportunities and adapting to new opportunities | Participants responded to the challenges associated with physical activity during COVID-19 through creative means and adaptation of activities they did pre-pandemic. | →Creativity and adaption →Benefits to new ways of doing physical activity →Drawbacks to new ways of doing physical activity |
Social isolation and physical activity | Physical activity is an opportunity to engage with others and remained so during the COVID-19 pandemic. Social engagement can be a motivating reason to be physically active. | →Physical activity connects us |
Adapting physical activity to stay safe from COVID-19 | Participants took precautionary measures to keep themselves and their families safe from COVID-19; this involved what kinds of physical activity they engaged in, and how. | →Concerns and caution |
Level | Facilitators | Example Quotes |
---|---|---|
Individual | →Feeling well and healthy →Knowledge that exercise is good for you →Self-awareness →Self-motivation →Having a goal or reason to exercise →Not wanting to stay at home all day →New equipment →Having the equipment already, such as internet connection, yoga mats, weights, etc. →Fitness trackers →Prior knowledge of how to utilize things you have in the home to be active MS Specific: →When fewer symptoms present it is easier to be active →Being active improves MS symptoms →Desire to regain strength and mobility →Materials specifically for individuals with MS | Diane: “And then, since being diagnosed, it’s like you know what, I can do this. Nobody’s going to tell me that I can’t do something, and I know I can do it.” Natalia: “I have a FitBit and seeing my points, like the steps add up motivates me more.” Christiane: “Where I already had my yoga mat, all the types of things I needed to transition to doing [physical activity] it at home. So, I had the computer, I had the high-speed internet. You know, all these types of things that some other people might not have had, I was fortunate to have.” Lita: “I’ve noticed that when my physical activity, even in the slightest doing laps for an hour or two, it helps me with my MS. It makes me feel stronger, I’m gaining a little bit more strength, I’m able to be a little more energized than usual.” |
Social Environment | →People who encourage →Being a caregiver: motivation to move and care for children →Friend(s) to walk with in a small bubble →Need for social interaction →Family who help out with working out at home →Free online programming→Shift of regular programming to online programming →Fitness tracker with family and friends →Friends who have found good resources and have sent them MS Specific: →Connections through support groups →Friends with MS who set an example of being active →Changing message about MS and PA: good for you →Having exercise providers that work with you to tailor exercise | Lita: “They have been the biggest support system. My friends have really been able to help me get through and motivate me to do those simple tasks or go for that walk, even though I’m not feeling the best.” Briana: “going online has been critical because if it wasn’t that I wouldn’t be doing it. Um, that’s probably the number one thing that’s helped me.” |
Physical Environment | →Living in rural location: less likely to come into contact when doing PA and being able to exercise outside →Not having to wear a mask when exercising outdoors →Milder winter, spring, and summer weather →Space to walk around and move inside the house →Making one’s home more suited to PA (e.g., setting it up similar to a studio) →Convenience of exercising at home | Diane: “I think just being outside would make the difference, being inside I don’t think I would be um, inclined to do as much [physical activity] being outside you don’t need to wear a mask so that’s kind of a cool thing.” Briana: “Where I live there’s no people, so I can go exercise. I can hike, I can swim, I can whatever, without coming into contact with any other people.” |
Policy | None identified | None identified |
Level | Barriers | Example Quotes |
---|---|---|
Individual | →COVID-19 was a ready-made excuse →Fear of contracting COVID-19 →Lack of information about COVID-19 MS Specific: →Temperature regulation →Limited and gradually decreasing mobility →Fatigue →Relapses →Lack of information about PA & MS →Challenge to have the mental fortitude to continue to engage with the world | Viktor: “[COVID,] it’s a ready-made excuse, as well for people and we’re all just kind of cocooning.” Daniela: “I had a relapse and I think that was like another huge thing that threw a wrench into things, on top of COVID-19.” |
Social Environment | →Isolation →Loss of in person group PA →Walking/running alone →Interacting with people with larger bubbles →Online classes: limited capacity, more distractions, less motivated →Shift to online appointments decreases time in community →Stressful work environments | Elinor: “I mean I’ve been home since you know for a year now. I hardly go out. I go to the hospital to change my catheter. I don’t even go to the doctor because I talk to the doctor on the phone.” |
Physical Environment | →Accessibility of built environment →Cannot go to the place once gone to for exercise →Gyms not safe places during COVID-19 →Icy trails/sidewalks →Areas with steep hills →Lack of accessible sidewalks →Trails got very busy →Narrow trails don’t allow for social distancing | Gabriela: “it sounds so trivial, but from where the change room is to the actual pool, it’s an extremely long walk for me and like where you have to place your towel. It seems so trivial, but when you’re living with ambulation limitations it’s huge. And so, for me that’s been, utilization of city services has been challenging.” |
Policy | →Closure of pools & gyms →Extra steps to access city services (e.g., booking in advance or online) →Absence of services specially for people with MS →Lack of acknowledgement of the need for people with physical disabilities to be able to access city services →Lack of leadership or direction/information | Gabriela: “Trying to utilize city services, trying to utilize the pool… any of those areas has been an utterly frustrating experience. I don’t know how people are actually able to book a time at the pool because they are always full.” |
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Koopmans, A.; Pelletier, C. Physical Activity Experiences of People with Multiple Sclerosis during the COVID-19 Pandemic. Disabilities 2022, 2, 41-55. https://doi.org/10.3390/disabilities2010004
Koopmans A, Pelletier C. Physical Activity Experiences of People with Multiple Sclerosis during the COVID-19 Pandemic. Disabilities. 2022; 2(1):41-55. https://doi.org/10.3390/disabilities2010004
Chicago/Turabian StyleKoopmans, Alanna, and Chelsea Pelletier. 2022. "Physical Activity Experiences of People with Multiple Sclerosis during the COVID-19 Pandemic" Disabilities 2, no. 1: 41-55. https://doi.org/10.3390/disabilities2010004
APA StyleKoopmans, A., & Pelletier, C. (2022). Physical Activity Experiences of People with Multiple Sclerosis during the COVID-19 Pandemic. Disabilities, 2(1), 41-55. https://doi.org/10.3390/disabilities2010004