An Investigation into the Physical Activity Experiences of People Living with and beyond Cancer during the COVID-19 Pandemic
Abstract
:1. Introduction
2. Materials and Methods
2.1. Intervention Context
2.1.1. CARE Exercise Sheets
2.1.2. CARE Pre-Recorded Exercise Videos
2.1.3. CARE Sessions Delivered Online via the Zoom Platform
2.1.4. CARE Sessions Delivered Outdoors in Green Space
2.1.5. Self-Organised Physical Activity
2.2. Participant Recruitment and Ethical Procedures
2.3. Interviews with Participants
2.4. Data Analysis
3. Results
3.1. Demographics and Participant Profile
3.2. Referral to the CARE Programme
- People were recruited in a variety of ways. So, we’ve got our specialists and consultants, oncologist nurses that they have obviously contact with at their appointments in hospitals. Support groups that are around, so we make use of Maggie’s Centre, we’re in their quite often doing presentations and things. Then it’s also self-referral, so from seeing posters around different areas. (Staff 2)
- It was the Late Effects Team that referred me to the physio and then it was the physio who mentioned about CARE. So that’s how I was able to access it really. (CARE 4)
- Our youngest participant is in their early 20s and our oldest is in towards their late-80s, so you can see a wide variety. However, the bulk of our participants have probably been in that 50 to 70 range, that’s the average age I would say, although it is open to everyone, and we get obviously a real variety of people. (Staff 1)
3.3. Physical Activity Participation
3.3.1. Physical Activity Participation before Cancer Diagnosis
- I was fit and well before diagnosis, but I was never one for going to the gym and so I needed a lot of information when I joined CARE. (CARE 5)
- [I had] a soft tissue sarcoma in my leg. And I went on to have surgery and quite lengthy six-week daily radiotherapy. And at the time I was reasonably active because I’d been recently retired. And I, you know, did a lot of Pilates. I did a lot of walking. I went swimming a bit, I didn’t like swimming that much, but I went because I thought it was good for me. (CARE 8)
- My general health wasn’t very good anyway. I suffer a lot with depression and anxiety and the GP referred me to what was called the Be Active scheme, which is run by various gyms, so I went there. They put you under basically a personal trainer there who guide you through various things to help you cope with depression and anxiety because obviously exercise is supposed to help it. When I was 20, I had cancer before, so I’ve never really done physically at all, I was never a sporty person. (CARE 9)
- We kind of split them [participants] up into two groups, it’s one extreme or to the other. We never have someone who’s quite physically active or here and there, it’s always we have the participant who is, I cycle five times a week and I do 80 miles per week, or, I don’t do anything, it’s always one or the other. (Staff 1)
3.3.2. Physical Activity Participation Pre-COVID-19
- I’m trying to do a sort of, an eclectic mix of stuff [activity], because I tend to think, “Oh well this is great”. And then I get bored with it. So, I dog walk every day obviously because I must. I’m still running outside now that I’m allowed to go outside, I am running. I’ve just started swimming in the lake. (CARE 7)
3.3.3. Physical Activity Participation during COVID-19
- We decided we had a variety of different ways to interact with them and they can pick and choose what’s going to be better or necessary, whether that be Live Zoom classes which were well-attended but not as well-attended as the normal face to face sessions. (Staff 2)
- It was probably up to three quarters of CARE attendees did Zoom, so a quarter of them were saying they don’t want to do anything because they didn’t want to do Zoom, they didn’t want to do any PA or rehabilitation, some wanted to do [CARE] rehabilitation in person and some wanted to do [CARE] on Zoom. So, we had these three sets of groups who were happy with what they wanted and tried to form them into the same group online. (Staff 1)
3.3.4. No Physical Activity
- I have done nothing. I have back problem and I have physio, but if I had been going to CARE, I would not have this, I have gone backwards since CARE ended in person. (CARE 5)
3.4. Physical Activity via CARE
3.4.1. Physical Activity via CARE on the Zoom Platform
- I would say 75% of our overall participants engaged in some sort of online activity, so the Zoom classes probably were quite a good hit, but again we’re normally averaging 20/25 numbers and we’re probably getting 10 to 15 tops for the Zooms. (Staff 2)
- I did not attend Zoom CARE, I am not happy with Zoom on my phone, I did not enjoy it and I did not have the facility to do Zoom on a big TV, I have done absolutely zilch since CARE ended. (CARE 5)
- I have never got back the mobility that I had before cancer. And it’s got a lot worse in lockdown, probably understandably. I wasn’t even going for even the permitted walks because I was sitting round all day. And everything has really ceased up now. So, when CARE came back with the Zoom sessions I thought, well this is it now, you know, this will make me do it, this will be good. (CARE 8)
- When they put the [CARE] online up, I thought, yes…I was doing Pilates Tuesday morning and two CARE sessions on Zoom as well. So, it meant that I was getting all my usual exercise in which was fabulous. It’s been fabulous, just to be able to keep going with the CARE. You know, we were thrilled. I mean, some people didn’t do it because they don’t like using Zoom. That didn’t bother me at all because I say, I’m very adaptable…And my motto is, where there’s a will, there’s a way. Nothing is impossible. (CARE 2)
- I’m not good on Zoom. I can do it one-to-one or with a couple of people. But when you’ve got more, I find I really struggle with it. I used to struggle when I had to do it for work a few years ago. And even with friends, if there are more than three or four, I just find the whole experience a bit intimidating. I suppose a bit of it is trying to work out who is going to talk first, and I find that if you’ve got eight or nine people on a screen, I find the whole process a bit daunting, and it puts me off. And I find concentrating on the screen for more than about 20 min, it’s easier to talk to somebody on the phone or face to face with a cup of tea. (CARE 3)
- I just find the Zoom very, very easy. I mean, the instructors, he is very good at keeping us informed. Sends us a link every week. “This is the link for”, whatever and you just click on it and it’s absolutely fine. I think we’ve only really had one or two glitches and that was because of internet connections really. So, it’s not really been an issue. And I felt very comfortable with it. (CARE 4)
3.4.2. Physical Activity via CARE Outdoors in Green Spaces
- During lockdown six of us, decided to carry on running the CARE and carried on doing it legally while we could. So, we started meeting by the Trent, so set up some exercise sheets, took some music down and cones…We took weights down and did normal weight exercises. We did, there are steps down there so we could do step exercises. We were using either the grass when it was dry with a mat on or a tree for press ups. We have typically nine or 10 stations and do that twice for an hour. (CARE 6)
- Well, I have been going to the CARE sessions outside on the Embankment. I mean it was great last autumn, you know, beautiful colours. And then in the spring of the blossom and blue sky. And it was just such a wonderful feeling. (CARE 8)
- I could not entertain the CARE park sessions, it is cold, there are no seats to sit [on], I don’t do cold weather and there are no toilets. There is not the variety of equipment, there is just the equipment that can be carried in the bag. (CARE 5)
- Yes, in fact that’s a bit of a downer for me as well because obviously it’s great that things are opening for everybody but since they’ve opened and started outdoor [CARE sessions], which I don’t really see any point in me going to really because I liked the fact that it was indoors. I liked it was because I could use the equipment before and after, plus after the session we had some time to play badminton and table tennis which I loved, so going out-doing it outdoors is just basically what I was doing on Zoom but in person, so it seemed a bit pointless for me, especially with the extra cost of getting there. (CARE 9)
- I haven’t been along to the outdoor sessions. I’ve got problems with mobility now. So, I can’t walk very much and I can’t drive very far. And I haven’t wanted to use public transport. (CARE 3)
3.4.3. Physical Activity via CARE Videos and Exercise Sheets
- Exercise videos and documents were sent out on a weekly basis so they can exercise from home and do their own. We had some great little exercise videos that they could follow which was brilliant and demonstrated them all through and they really seemed to enjoy those, but could we set little challenges or things that would be a bit more engaging, a little bit more fun, rather than just the same structure of, oh, it’s another video, which was great. (Staff 2)
3.4.4. Self-Organised Physical Activity
- I am doing Yoga online. Yes, but it’s very- It’s quite low intensity yoga. It’s all stretching rather than strenuous moves. (CARE 9)
- In our village chair-based exercise group. The instructor left copies of all the music with us and we wrote down the exercises. So, I got the music out…and just stared doing sort of 10, 15 min in the afternoon, I try to do some most days just to- but they’re all chair-based ones and on the list, I’ve got it says whether it’s for your core, for your arms, for your legs, whatever. (CARE 1)
3.5. Barriers to Physical Activity Participation via CARE
3.5.1. Attending CARE Online via the Zoom Platform
- You need to know why people do not attend online through Zoom, we did not have the facilities and a camera that we could use. (CARE 5)
- And there was bandwidth, it kept dropping out or freezing. And in fact, I changed my broadband provider and I’ve also, upped some of my broadband allowance. I seemed to have different problems with Zoom every time I went into it. And I kept thinking that I don’t know why this is happening. It worked all right before. (CARE 8)
- Participants did join with phones. It might be low internet connection as well, on the mobile it’s the reception that they had, the internet speed that they had, so we’ll sometimes we’ll have people who might start an hour but also while might be breaking off and leaving the room as well at the same time but, yes, we just try and make it as comfortable as possible. (Staff 1)
- All this latest modern stuff, this Zooming and all that—I could cope with emails. I can cope with my mobile phone which is an old one and I can do texts on, but not a lot more than that. So, I didn’t getinvolved…I just have a thing about seeing people on the screen and that sort of thing. It doesn’t seem real to me. Well, no, it seems odd. (CARE 1).
- We did organise I think about four or five Zoom calls which was just a chance of team coffee as such over Zoom, and they worked quite well. A little bit difficult at times, again everyone’s trying to talk over everybody, but we use the breakout rooms and stuff and that was led by participants, it was one of their ideas and they led that and things which was great. (Staff 2)
- The breakout groups, we did try at one stage to have a sort of, you know, a social thing online. And then have a big group all together and then have breakout groups, that was the very beginning, you know, at the first lockdown. But that didn’t really work. But I think there’s an ideal group size on Zoom that makes you feel not so you’re sort of one of the five, and you’re feeling we have to go next time because there’s only five of them, and if I go, I don’t go and I know somebody else isn’t going for that time, it’ll only be three. (CARE 8)
- The troubles that we had were to do with it’s just that communication because if you have 10, 15 or 20 people in the same room and that’s their only chance to see other people on the CARE programme everybody wants to talk and you all have to wait to listen just for one person to talk, and then if someone’s going to respond you’re going to get 10 other people who are going to try and respond at the same time, so that communication. (Staff 1)
- It was a prescribed time from the coach’s point of view, some were better than others at making you feel more relaxed. But some it was just like feeling we’re just getting through it. They [the instructors] were not watching you in detail, I mean with the fixed screen, I was saying, I’ll do this on the wall. But sometimes they’d started, and I hadn’t set myself up in time. So I think that was the negatives. (CARE 8)
- I think we could do more to try and engage with others, maybe change the style of the session on Zoom. I know it’s obviously difficult you’re limited to what you can do but look into different things we could do to make it a little bit more full and engaging rather than so repetitive. It was pretty much like a bootcamp class online as such so they’re copying movements or exercises we’re doing we’re watching them do it, can we incorporate different things within that, be a better way of doing it. (Staff 2)
- Before we went into lockdown, before the Zoom gyms, that’s what I call it, people did used to meet in the café afterwards [after the CARE sessions]. (CARE 4)
- Another thing that was missing [compared to the in person sessions], we always went for a drink- at the pub afterwards near the gym. Which was fantastic. But of course, that’s all gone as well with Zoom. Which is how you got to know people better. It’s just- It just feels different not to be face to face. (CARE 8)
- You always felt like you were never in a safe space to have that one-to-one talk with someone [attendee] if you wanted to have that talk, as you usually would in a face-to-face session. (Staff 1)
- I’d say the negative of Zoom was trying to adjust to get people motivated to do Zoom sessions, but also at the same time is when it snowballs it kind of picks up quite a lot but it’s just that starting process of changing the whole dynamic of the CARE programme. The Zoom sessions, it was very much limited numbers and then when it came to I’d say November time when we went into lockdown two so it started to funnel down quite a lot of just quite double digit in participants but it started to filter down to the most regular people who attend. (Staff 1)
3.5.2. Attending CARE Sessions Delivered Outdoors in Green Spaces
- I didn’t feel I could cope with going to the outdoor one when they started that up because I need to be near a toilet. And the Trent hasn’t really got any toilets there that you could use. (CARE 1).
- There are seats to set yourself when you exercise and a lack of exercise equipment. (CARE 5)
- I don’t balance very well on lumpy grass, fell, and twisted, well not fell, I twisted my ankle doing the outside sessions. Took two weeks off. Went back. And trying to be clever thinking, ‘I’m really going to do this’ you know, ‘I’m going to be good at this. I’m going to do this one without my stick’. So, I did. Skidded on the gravel (CARE 8)
- Driving more than a couple of miles is really difficult. And when I was going to CARE regularly, I used to normally use public transport simply because I find driving, well, not so much driving, but parking round there, very stressful. So, I used to end up going into the sessions feeling really exhausted because I’d had a really stressful experience trying to park which was not a good start to the session. So, whenever possible, I used to use public transport. And I haven’t wanted to use public transport, though I am using it now, during the last year particularly. The other thing is I can only walk for about 15, 20 min at the moment. (CARE 3)
3.6. Facilitators for Physical Activity Participation Undertaken at CARE Sessions
3.6.1. Maintaining Fitness Levels
- I think they (the participants) wanted to maintain the work they’d done so far, the work they’d done through CARE, so keeping that, maintaining that fitness, and improving that again. Then also that social interaction and I think a little bit of boredom and routine so, right I’m going to do two online Zoom sessions a week with CARE and the video that is sent out. They get the real physical benefits of exercise, but it’s more than that now, it’s that social and psychological interaction. (Staff 2)
- It gets you moving and doing stuff because the thing, two sides. From the counter perspective, exercise is very important to alleviate the issues around chemo. And the chemotherapy does take, knock your body so you can’t do things. And if you don’t do exercise very quickly, I’ve seen people go down a slippery slope of not being able to do anything. And then you get psychologically traumatised in that you can’t do things. It becomes a vicious circle. And I think the exercising also lifts your endorphins. (CARE 6)
3.6.2. Social Support from the CARE Staff
- There’s lots of positives. First and foremost were the guys who arrange it, they’re great all of them, they really make you feel welcome, they really help you, it’s worth going along just to see them, plus obviously the exercise benefit. It’s a support. At the end of the sessions they’re [the staff] are always free at times for asking if anyone has any questions or need help or need to know anything. (CARE 9)
- I mean, we’ve been getting weekly emails from the instructors with all the details of all the sessions and everything on. But it’s the fact that they have kept in touch, and they do so before in a way as wellbecause they would always make sure we knew what was happening when we went to the sessions and keeping that contact, I think, has been very important. (CARE 1)
- They [the staff] complement one another very well. I mean on Monday, they’re very gentle but firm with the instructions to make sure that you’re doing it properly and not going to injure yourself. But also encouragement and encouraging. (CARE 6)
- The instructors didn’t just do the exercise programme, they did other things as well. If you didn’t want to do that, there were quizzes. There were various things they’d put on. They were sending out exercise programmes you could look at and follow if you didn’t want to actually do the Zoom programme. So, there were lots of options. So, nobody was left out for whatever reason which is great. A lot of places wouldn’t go to that much trouble. (CARE 2).
3.6.3. Social Support from the CARE Participants
- I mean that’s one of the good things about CARE is that, you know, you can talk about it because other people are going through, not the same, I mean I haven’t had anyone with the same cancer. But it’s very similar experiences. (CARE 8)
- Attending CARE in person gave me someone to speak to who are in a similar situation to myself, I got into to it really, but I stopped going [when] the pandemic started. (CARE 5)
- But it was just the contact and seeing the faces. That was great. You know, being able to speak to somebody and share, you know, how people were feeling during lockdown as well because it’s not just about the exercise. It’s also the camaraderie and catching up. (CARE 2)
- What works for me is that I was seeing people who I’d seen before we went into lockdown. So, you know, you sort of make friends with people and you form this little community and we’re such a mishmash of people which is lovely. (CARE 4)
3.6.4. Adapting the CARE Sessions to Meet Participant Needs
- Doing session when you’re in your own home, it did remind you how you can use household props and you can adapt what are sort of routine things into your homes. (CARE 8)
- The CARE sessions are adapted to meet your needs. (CARE 5)
3.6.5. Accessibility of the Online CARE Sessions
- I can’t drive now and had to sell my car. And so, it meant I didn’t have to involve my husband usually and lifts and or catch public transport, which is obviously a big boost because I didn’t feel inclined to do that during COVID restrictions. I don’t say this last year has been more difficult, in some ways it’s been easier for me because it’s on Zoom, I don’t have to get out of the house, in some ways that’s better. (CARE 8)
- You’re not having to travel all the way through the traffic to get to the Portland you can just do it last minute or whatever, so it doesn’t matter if it’s absolutely pouring with rain or whatever. And you can fit it in very easily because it’s just that hour. Whereas when you’re going face to face, you’ve got to allow for travel time so then that will take you all morning to actually get there. Sometimes it’s really busy. So, it’s more convenient [online]. (CARE 4)
3.6.6. Establishing a Routine and Focus
- I do need the encouragement to get out because with the depression and anxiety, I don’t really get out much so that’s the reason I like to go to the sessions because it gave me an excuse to get out of the house and do something but saying that it is a lot easier to do it on Zoom. (CARE 9)
- I think, just to keep some sort of focus because I was retired at that time, my life had not come to an end, but it had stopped really. My husband was at work. Nothing had really changed for him. So, going to gym three times a week, it was just that routine. It was keeping in contact with people, having a bit of a laugh and also, helping my physical health as well. (CARE 4)
- I think the fact that I feel I’m participating in a proper piece of exercise like you might at a gym. Because, you know, you have the warmup with them first of all. Then you do the activities and then you have a cool down which are things that I know you would do if you were doing proper gym work. (CARE 1)
3.6.7. Costs of Engaging CARE Sessions in Person
- It’s helped me financially because as I said before I found it difficult after six months when you have to start paying because not only was it £5.00 per session, I had to get to Nottingham which costs me another £5.00 to £10.00 as well depending on whether I’m on a train or car, and so in some respects it’s been easier for me this last year. (CARE 9)
3.6.8. Technology Hacks
- The PC screen acted as a mirror, where if you’re in a studio you, or a gym, you usually have a mirror. Having yourself in front of you on the screen you could adjust your movements, you know. You could get your arms level…, stand up straighter, look ahead. And I found that was the surprising thing. (CARE 8)
3.6.9. Mental Health/Confidence
- It clears your head. Gets rid of headaches. Just makes you feel more with it. More alive. And it stops- I go through bouts of being very restless and fidgeting and that sort of thing and it gets you focused on something. So, yes. And walking helps me switch off from things. (CARE 3).
- I think if I hadn’t of had that interaction with CARE three times a week for more or less the last year or whatever, I’m not sure whether I would have had the confidence to have gone back. (CARE 4)
3.7. Feelings about the Future Participation in CARE Sessions
- I need to do some PA, I am itching to get back to CARE to get back my mobility and flexibility, it will be tough, but there is no pressure, if you want to push yourself you can. (CARE 5)
- I’d be happy to go in inside now but they’re saying today they’re not going inside for various reasons for a few weeks yet but, yes, I have no qualms about any of that anyway, I’d be happy to all the time. (CARE 9)
- I’m looking forward to getting back to being inside. I’m looking forward to that. That will be good, to use all the different equipment and I know that’s going to take time or whatever. (CARE 4)
- It does make you more cautious. And it does make you worry about stuff that you didn’t used to worry about, like going into a café, which is a crazy thing to worry about, but you know. So I would like to go back inside and go back to it. And fit it in around work. But now I, you know, I will continue going to the outdoor sessions because they’re great. (CARE 7)
- I’ve had my two jabs, I mean I know most- Well I know other people have in the group. And I’m not anxious. But I’m slightly apprehensive, that’s all. So, but I will go back. I mean if moves totally inside then I will go back to it. (CARE 8)
4. Discussion
4.1. Physical Activity Participation
4.2. CARE Sessions Delivered Outdoors in Green Spaces
4.3. CARE Online
4.4. CARE in the Future
4.5. Limitations and Strengths of This Research
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Participant | Gender | Age Group (Years) | Cancer | CARE Mode | Self-Organised PA |
---|---|---|---|---|---|
1 | F | 55–64 | Bowel cancer | No CARE | √ |
2 | F | 55–64 | Hodgkin’s lymphoma | CARE Online | √ |
3 | F | 55–64 | Breast cancer | CARE Exercise Videos/Online | ⨯ |
4 | F | 55–64 | Breast cancer | CARE Online | √ |
5 | F | 55–64 | Bowl cancer | No CARE | ⨯ |
6 | M | 65–74 | Myeloma | CARE Online/Outdoors | √ |
7 | F | 45–54 | Breast cancer | CARE Exercise Sheet/Online | √ |
8 | F | 55–64 | Soft tissue sarcoma | CARE Online/Outdoors | √ |
9 | M | 55–64 | Prostate cancer | CARE Online | √ |
Staff | Gender | Age Group (years) | |||
1 | M | 25–34 | |||
2 | M | 25–34 |
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Pringle, A.; Kime, N.; Zwolinsky, S.; Rutherford, Z.; Roscoe, C.M.P. An Investigation into the Physical Activity Experiences of People Living with and beyond Cancer during the COVID-19 Pandemic. Int. J. Environ. Res. Public Health 2022, 19, 2945. https://doi.org/10.3390/ijerph19052945
Pringle A, Kime N, Zwolinsky S, Rutherford Z, Roscoe CMP. An Investigation into the Physical Activity Experiences of People Living with and beyond Cancer during the COVID-19 Pandemic. International Journal of Environmental Research and Public Health. 2022; 19(5):2945. https://doi.org/10.3390/ijerph19052945
Chicago/Turabian StylePringle, Andy, Nicky Kime, Stephen Zwolinsky, Zoe Rutherford, and Clare M. P. Roscoe. 2022. "An Investigation into the Physical Activity Experiences of People Living with and beyond Cancer during the COVID-19 Pandemic" International Journal of Environmental Research and Public Health 19, no. 5: 2945. https://doi.org/10.3390/ijerph19052945
APA StylePringle, A., Kime, N., Zwolinsky, S., Rutherford, Z., & Roscoe, C. M. P. (2022). An Investigation into the Physical Activity Experiences of People Living with and beyond Cancer during the COVID-19 Pandemic. International Journal of Environmental Research and Public Health, 19(5), 2945. https://doi.org/10.3390/ijerph19052945