| Literature DB >> 33807112 |
Zoe Rutherford1,2, Stephen Zwolinsky3, Nicky Kime4, Andy Pringle5.
Abstract
With increasing cancer survivorship has come an increased necessity to support people living with cancer (PLWC) to have a good quality of life including being physically active. Using mixed methods, the current study aimed to use the RE-AIM evaluation framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) to determine how the football community trust delivered CARE (Cancer and Rehabilitation Exercise) intervention was able to increase participants' physical activity in order to improve their quality of life and regain physiological and psychological function. Quantitative outcome data were collected at baseline, 3 and 6 months using the Cancer Physical Activity Standard Evaluation Framework questionnaire. Semi-structured focus groups (n = 5) captured participants' (n = 40) lived experience of the reach, effectiveness, adoption, implementation, and maintenance of CARE. Questionnaire data were analysed using repeated measures ANOVAs and qualitative data were thematically analysed. Following diagnosis, CARE was successful in providing participants with a unique and accessible opportunity to become or restart physically activity, by providing a local, socially supportive, and inclusive environment. This resulted in significant increases in physical activity (F(1.58, 23) = 5.98, p = 0.009), quality of life (QoL) (F(2,36) = 13.12, p = 0.000) and significant reductions in fatigue (F(1.57,31) = 11.19, p = 0.000) over 6 months. Participants also reported becoming more active, recovering physical function, regaining independence, and enhanced psychological well-being as a result of attending CARE. Key design features of CARE were also identified across RE-AIM. CARE, a football community trust delivered physical activity intervention was successful in significantly improving participants' QoL and in regaining the physical and psychological functioning of people living with cancer. Results suggest that maintaining engagement in CARE for 6 months and beyond can support people to maintain these changes. Engaging in robust evaluations such as this can help organizations to successfully secure future funding for their programs.Entities:
Keywords: RE-AIM; behaviour change; cancer; exercise; football in the community; intervention; physical activity; rehabilitation
Mesh:
Year: 2021 PMID: 33807112 PMCID: PMC8004656 DOI: 10.3390/ijerph18063327
Source DB: PubMed Journal: Int J Environ Res Public Health ISSN: 1660-4601 Impact factor: 3.390
Components of the RE-AIM framework in the context of Cancer and Rehabilitation Exercise (CARE).
| Construct | Definition as Applied in This Study | Data Source |
|---|---|---|
| Reach | The number, proportion, and representativeness of people living with cancer (PLWC) who participated in CARE. | Questionnaire data collected at baseline, 3, 6 and 12 months. |
| Effectiveness | The impact of CARE on physical activity, fatigue, health related quality of life, confidence in daily living. | Questionnaire data collected at baseline, 3, 6 and 12 months. |
| Adoption | The profile of the PLWC who engaged in CARE including their physical activity, health status and reported barriers and facilitators. | Questionnaire data collected at baseline, 3, 6 and 12 months. |
| Implementation | The key CARE intervention design and delivery characteristics that participants reported as being influential in facilitating their adoption. | Semi-structured focus groups with CARE participants. |
| Maintenance | The continued engagement of participants with CARE and the extent to which the intervention is sustained and can continue to be provided by Notts County Foundation. | Semi-structured focus groups with CARE participants. |
Figure 1Overview of the key components of the Macmillan Physical Activity Behaviour Change Care Pathway applied to CARE.
Summary of the of evaluation participants’ demographic profile at baseline.
| Variable | Total (%) |
|---|---|
|
| |
| Male | 48 (28%) |
| Female | 121 (72%) |
|
| |
| Married/with partner | 120 (71%) |
| Single/divorced/widow | 48 (23%) |
| Other | 10 (6%) |
|
| |
| None | 21 (13%) |
| General Certificate of Secondary Education or equivalent | 42 (25%) |
| A level of equivalent | 31 (19%) |
| Degree and above | 71 (43%) |
|
| |
| Paid work/Self-Employed | 111 (6%) |
| Voluntary work | 3 (2%) |
| At home/retired | 45 (27%) |
| Student | 1 (1%) |
| Other | 5 (3%) |
|
| |
| White | 152 (93%) |
| Black/African/Caribbean/Black Asian/Asian British | 9 (6%) |
| Other | 2 (1%) |
|
| |
| Yes | 47 (31%) |
| No | 109 (67%) |
| Prefer not to say | 3 (2%) |
The number (%) of participants by cancer type, cancer status and treatment status at baseline.
| Cancer Related Variables | Total (%) |
|---|---|
|
| |
| Prostate | 36 (22%) |
| Breast | 91 (55%) |
| Colorectal | 8 (5%) |
| Other | 29 (18%) |
|
| |
| Advanced or secondary metastatic | 10 (6%) |
| Recurrence | 3 (2%) |
| Stable | 31 (20%) |
| Remission or cancer free | 85 (55%) |
| Not known | 23 (15%) |
| Other | 4 (2%) |
|
| |
| Treatment has not yet started | 13 (8%) |
| I am currently in treatment | 37 (23%) |
| The treatment has been effective | 76 (48%) |
| Finished treatment but cancer still present | 5 (3%) |
| Treated again, not fully responded to treatment | 6 (4%) |
| Not in active treatment on ‘Watch and Wait’ | 17 (11%) |
| My cancer has not been treated | 1 (1%) |
| Don’t know | 4 (3%) |
Results of the paired samples t-test for the CaPASEF questionnaire components.
| Baseline | 3 Months | Difference | 95% CI | |||||
|---|---|---|---|---|---|---|---|---|
| Mean | ( | Mean | ( | Mean | ( | |||
| Physical Activity ( | 443.44 | (251.52) | 565.54 | (221.62) | 122.10 | (261.92) | 0.000 * | 58.70–185.50 |
| Fatigue ( | 17.83 | (11.30) | 15.22 | (13.31) | 2.61 | (10.71) | 0.024 * | 0.35–4.86 |
| Quality of Life ( | 62.48 | (19.03) | 73.86 | (16.84) | 11.39 | (14.50) | 0.001 * | 0.51–3.45 |
| General Self Efficacy ( | 27.10 | (4.50) | 28.29 | (4.35) | 1.19 | (3.27) | 0.000 * | 8.52–14.25 |
Note: * Denotes significant difference between baseline and 3 months.
The number (%) of CARE respondents reporting baseline and 3 EQ-5D domains.
| Dimension | Baseline | 3 Months |
|---|---|---|
|
| ||
| No problems walking | 17 (17%) | 27 (26%) |
| Slight/moderate problems walking | 34 (33%) | 20 (19%) |
| Severe problems/unable to walk | 52 (50%) | 56 (54%) |
|
| ||
| No problems washing or dressing self | 19 (18%) | 29 (28%) |
| Slight/moderate problems washing or dressing self | 11 (11%) | 8 (8%) |
| Severe problems/unable to wash or dress self | 73 (71%) | 66 (64%) |
|
| ||
| No problems doing usual activities | 14 (14%) | 21 (20%) |
| Slight/moderate problems doing usual activities | 48 (47%) | 38 (40%) |
| Severe problems/unable to do usual activities | 41 (40%) | 44 (20%) |
|
| ||
| No pain or discomfort | 14 (14%) | 14 (14%) |
| Slight/moderate pain or discomfort | 60 (58%) | 55 (53%) |
| Severe/extreme pain or discomfort | 29 (28%) | 34 (33%) |
|
| ||
| Not anxious or depressed | 14 (14%) | 22 (21%) |
| Slightly/moderately anxious or depressed | 45 (44%) | 31 (30%) |
| Severely/extremely anxious or depressed | 44 (43%) | 50 (49%) |
Overall Effectiveness themes, sub-themes and participant quotes related to their experience of CARE.
| Theme | Sub-Theme | Quote |
|---|---|---|
| Functional Improvements | Physical Function | “I’m still here 28 months later. My posture has improved, my quality of life is so much better. I still can’t drive very far, but I can drive. I can actually run now, never mind walk. It’s turned my life around, so it’s been amazing for me. And, as somebody has said earlier, they thought I was a ballerina because my posture was so good. When I started, it really wasn’t, but it’s amazing what exercise can do if you stick at it.” (Female) |
| Psychological Function | “I had an intense five weeks; I didn’t exercise whatsoever, so I had to start again from scratch. So that’s since January, coming once a week. And I’m finding I’m getting a lot fitter, a lot better, feeling energised and more myself, sort of thing. ” (Female) | |
| Improvements in Social Connectedness | “And I’ve started doing voluntary work myself, supporting people in a different environment. So it has begun to socialise me, I’ve begun to feel a bit more like I used to. ” (Female) | |
| Returning to “me” | Exercise | “I’m back running now at the gym. I’m running 5 or 6 miles. I did the Fever Challenge a couple of weeks ago, which was a run-walk. It was 15 miles. So, I’ve gone back to my running club, which has made me feel quite normal.” (Female). |
| Work | “I was completely off work; I was signed off work for a year and a half. It made a huge difference, and I’m now back at work. Only two days a week.” (Male). |
Overall Adoption themes, sub-themes and participant quotes related to their experience of CARE.
| Theme | Sub-Theme | Quote |
|---|---|---|
| Physical Activity Adoption | Previous Physical Activity Levels | “I was actually pretty fit before everything descended upon me. I was swimming about three mornings a week, doing a mile a time. So I think if I hadn’t been that fit I wouldn’t be here, because I’ve had cancer three times, and it does knock the stuffing out of you. I’m really a quite determined person, and I think I’ll just have to knuckle under.” (Male) |
| Mental Wellbeing | Pre-CARE Mental Health | “There’s one lady who started (CARE)—I can’t remember her name. She was in tears, wasn’t she? So worried about going to do anything. We chatted to her and she ended up really enjoying it, didn’t she?” (Female) |
| Barriers to Physical Activity | Fears and anxieties about being active | “For me, initially it was my surgery, I didn’t know […] Because I’d asked about getting into exercise and things, and they were saying ‘Oh, wait six weeks before you start any yoga or anything like that’. But I was just really concerned about what I could do and what I couldn’t do. I was reading all sorts of things online. Because I’d had a hysterectomy […] so women who had hysterectomies couldn’t get back into running […] Because I was quite into running as well, and that just put me off completely. I thought, ‘well, will I ever get back into it’?“ (Female) |
| Loss of fitness and loss of an “active” identity | “Because that’s a part of it-exercise. If you’re really into something, that is part of your identity, yeah. You’ve lost something else. That you can actually get your fitness back. That’s exactly how I felt. It was a big frustration for me.” (Female) | |
| Effects of cancer treatment | “One of the problems for me […] I had chemotherapy both before and after the cancer. They tell me it takes about a year to get over the chemotherapy. Which I’d no idea […] if they’d told me exactly what they were going to do to me a year ago, I might not have bothered. They started off by saying ‘you’ve only got a 19 per cent chance of living’, and it goes on from there, really. ‘By the way, we have to break some ribs to get in from the back.’ So obviously your body’s a bit wrecked afterwards.” (Male) | |
| Lack of social support | “I’d belonged to a gym, it’s very difficult to keep going to a gym when you’re going on your own, it’s very hard to motivate yourself. So, when this program was offered to me in 2015—that’s when I started, September 2015—I absolutely loved it. Also, because it got my mind off the treatments that I had. It was just a breath of fresh air, basically, to meet people who had suffered like myself or had the same kind of thing. It’s just nice to be able to meet this kind of people to talk about experiences.” (Female) | |
| Fears of engaging “mainstream” exercise provision | “You’re quite vulnerable, I think, especially when you first start on it […] until you get into doing the exercises. That’s why I didn’t want to go to a normal gym, because they all […] It is scary.” (Female) | |
| Motives for Adopting CARE (PA) | Returning to physical activity participation. | “The breast nurse told me about the CARE program, and I came back. In fact, I came too early, I came two weeks after my reconstruction and they said I was a bit too early, so they sent me back for two weeks. (Laughs) They said, ‘come back in two weeks’. So, I’ve been coming since August. But I’m back running now at the gym. I’m running 5 or 6 miles.” (Female) |
| Physical activity in a “safe” environment | “I just started to feel better, and I wanted to go to a gym. And the same problems that the ladies have said, like ‘I don’t want to be without my wig’. I mean, my hair’s grown back, but I still get cold and people look at you strange, don’t they? And I didn’t know whether I could actually do the exercise, if you know what I mean.” (Female) | |
| Getting fit for surgery | “Having access for Portland, I did used to try and come once during the week to one of their classes. And I did lose that weight and felt much fitter and healthier going into that third surgery, which was great. Then I had the surgery and came back in the summer and have tried to come regularly ever since then.” (Female) | |
| Managing health conditions | “It is sharing the experience with other people, people are on a journey and as you move along the journey, people are at different stage, people are interested.” (Female). | |
| Distraction from medical treatment | “It (CARE) got my mind off the treatments that I had. It was just a breath of fresh air, basically, to meet people who had suffered like myself or had the same kind of thing. It’s just nice to be able to meet this kind of people to talk about experiences.” (Female) | |
| Wanting on-going support and a positive approach | “So, by the end of the year you’re feeling pretty exhausted, although the treatment’s finished. But also, during that year I think you tend to be focused on your treatment and getting well. You’re going for loads and loads of hospital appointments, oncologists, radiotherapies, breast care nurses […] Then all of a sudden you get to the end of it, and it’s ‘Cheerio! We’re finished with you, off you go’!”. (Male Carer) |
Overall implementation themes, sub-themes and participant quotes related to their experience of CARE.
| Theme | Sub-Theme | Quote |
|---|---|---|
| Staffing | Staff skills, expertise and attributes | “The exercises are made fun and geared to all our needs. There’s no problem if you can’t do it the way it’s shown, the instructors find an alternative way for you. And we just laugh if we can’t manage it. They’re so encouraging and helpful.” (Female). |
| Participants trust the CARE staff | “They’re (the staff) very encouraging, all the staff. They’re just there and they’re helping you. You’ve got the exercises for each ability, so you know what you’re doing. And you can go up or down. And they’re there all the time, encouraging you—’oh, slow it down a little bit, you’re doing it a little…’ And you can trust them, you’re in their hands and you can trust them.” (Female) | |
| Responsive and enquiring staff | “I went to the “Moving On” course in January, that’s when CARE came along, and I said I was interested. And this kind of feeds into what you were saying about waiting lists […] because CARE staff phoned me almost immediately, I began to […] I came. If there had been a gap, I might have found plenty of reasons not to go.” (Female) | |
| Flexibility and Adaptability to Participant Needs | “I think that (the instructor), considering how many different types people he’s got, at different levels of fitness, what they can do and what they can’t do, I think he puts together a very structured program which has got something for everyone.” (Male) | |
| Providing a safe environment to exercise. | “I was quite sporty before, but I’ve not done anything in the past two years, so I was kind of quite nervous about going […] to know what to do and what I could do. And, as I say, I didn’t want to go to a gym. I’d lost my hair; I’d lost my confidence. Just having this group and knowing that everyone implicitly knows what you’re going through […] because we’ve got this whole thing that ties us together, it just made me so much more confident to go and exercise. So, I found that really, really beneficial.” (Female) | |
| Social Support | Providing a supportive social environment | “There is a social element to what is achieved here as well. I mean, we’re all sort of becoming friends, I guess. We did a sponsored walk last year; we went bowling just after Christmas. It gives people a chance to really forget that they’ve got this debilitating problem and actually put a smile on their face. Again, that’s something you can’t put a tick in a box for, but it’s there, it’s underlying, and I think it’s extremely important. I hope the program goes on for many years and grows, because they really need it.” (Male) |
| External social support from family members | “You know, my husband looks after our child on a Saturday morning so that I can come. It’s having that […] If I have that time, I’m better able to function, take care of the family, and go to work—because I’m fitter and healthier.” (Female) | |
| Reducing feelings of isolation | “Socially support environment also helps address the isolation that can be associated with the rehabilitation of long-term conditions. Because having cancer is, like you say, very isolating—your friends can be kind and all the rest, the same with partners, but nobody really experiences it as you do—so I stopped going out, I closed in. And this has started to bring me out. I now have an anchor to my week, a reason to come out. People in the group know what it is like to have cancer.” (Female) | |
| Group Setting | Building trust and admiration within the group | “I think it’s managing a situation that is actually a form of treatment, which from a medical point of view, they make a diagnosis of treatment, and then they forget the years that people have got to live with the side-effects of the treatment. It means you’re not on your own. I must say, I admire a lot of people on this program.” (Male) |
| Size of the group | “I particularly like it more now, because there are more people that are joining. And it’s great to get this new blood. In a way, I feel like I belong to a family. It’s become like my family.” (Female). | |
| Developing Empowerment and Positivity | “(CARE Staff are) really fantastic, they give you a power to lift up. That’s it. Like you’re coming back. Like a lot of things, after the cancer, you totally change your perspective on everything. Before this, you are really active, this and that. After, there’s a little bit of you lost.” (Female) | |
| Developing Self-Management Skills for Exercise | Setting and working towards goals for improvement | “At the start they give some sort of measure of your fitness. I do appreciate for certain people that are not really for them. I think you’ve got great diversity within the group, and some people may not like that. But personally, I find that if I was given a target three months ago and found that I’d improved on it.” (Male) |
| Monitoring skills and techniques | “I think the best thing that (the Instructor) probably brought in, that I used to overdo at one time, is going into the red zone, pushing myself too much too quickly. He taught me that. It’s not a good thing to be in the red zone. And it’s not, really, when you think about.” (Female) | |
| Establishing a routine for exercise | “I was completely off work; I was signed off work for a year and a half. It made a huge difference, and I’m now back at work. Only two days a week, still, but it made a huge difference to just have an arrangement where I had to be somewhere twice a week having a routine.” (Male) | |
| Learning the exercise skills | “We got different ideas and different bodies, whatever. But nobody actually said to me ‘while you’re doing that, you should be feeling a stretch there, or a stretch there.. And now (the instructor) says ‘when you stretch there, you’ll feel that…’ And now I understand what I’m stretching. Whereas before I was just stretching, thinking ‘well, I’m stretching, but…’ And then next time ‘Ooh, ah, that’s what it’s supposed to be doing.’” (Male) | |
| The location of the venue | “I think what has helped on the program […] the location for me is great, and I really admire people who travel so much further; because I’m not sure that I would have been committed to that.” (Female) |
Overall maintenance themes, sub-themes and participant quotes related to their experience of CARE.
| Theme | Sub-Theme | Quote |
|---|---|---|
| Areas for Improvement | Ability of all staff to understand participant limitations | “On a constructive criticism. I think sometimes, because all four of us in this room, to look at us we look fairly normal and we look well. And I think sometimes people (instructors) forget that we’re not well, and we do have problems, and I find occasionally people forget in class that you do have limitations. This is just a very minor point. I have to say ‘Hang on a minute, just remember I have got fatigue. Remember I can’t keep my arms up too long.’ People say, ‘Just hold your arms up and do it a bit more.’ No… no… And I think it’s great that we look really well, but I think sometimes people forget.” (Female) |
| Standardised communications from staff | “Yes. I find it tends to be the assistants, not so much the senior staff. And it’s probably more so when I first started, but of course over time things have improved, if you see what I mean. Because (a) they know us, and they’ve got used to us. But if you get somebody new come into the class who is helping out—say an assistant who’s not so experienced or used to us, they forget, you know. I think one member of staff said to me ‘no pain, no gain.’ I said; ’In this class, that certainly doesn’t apply.’ I was very polite about it, but I don’t think that’s appropriate.” (Female) | |
| Promoting the CARE program | “I have always said that the posters do need to be a bit clearer. The word ‘cancer’ is nowhere […] well; it’s in the bottom in quite small print. They are around in the hospital. They’ve been there a while; they’re at the bottom of the stairs as you come down from chemotherapy. Mainly it’s […] half the poster is (the instructors) face, now I know it’s (the instructor), but the word ‘cancer’ isn’t; it’s just ‘CARE’. And I know […] we know what CARE is now, but I think the publicity of it could be slightly better.” (Female) | |
| Concern for the future of CARE | Duration of the program | “If you are re-diagnosed or if you do have further treatments, when can you access that 12 weeks, and at what point would you take on the 12 weeks? Because I started it during the end of my chemotherapy, but obviously I would question whether that was the right time, because I wouldn’t want to start it […] because I’d rather have it at the end […] if I knew that’s what I was having.” (Female) |