Participant views on feasibility and acceptability of the CaRE-4-alloBMT program
| Category . | Theme and analytical note . | Example quotation . |
|---|---|---|
| Themes on feasibility of the study methods | ||
| Satisfaction | Program flexibility: the flexibility of the program design was able to meet their needs of adapting to a lighter load during periods of hospitalization and rehospitalization after the transplant. This made participation a lot more manageable. Participants also appreciated the one-on-one design that allowed exercise prescriptions and intervention components to be tailored to their specific needs. | “I was heading into something really challenging, and the I was hospitalized with graft-versus-host disease and then we had to amend the program again, so [RKin] was very open to changing the program to suit my needs and where I was at physically and mentally, and even emotionally.” – Female leukemia survivor, age 59 |
| “Yeah, there are times where I’d say to [RKin], ‘we need to increase my walking,’ I think [RKin] had me down for 20 minutes, twice a day and I’m like, I can do half an hour to an hour. So [RKin] goes, ‘okay, let’s increase your program.’ And then I said, you know, I don't like the elastic band – the… whatever that is – the tensor band? So I said, ‘can we change to weights?’ and [RKin] said, ‘Sure. What kind of weights do you have?’ So [RKin] was totally open to personal adjustments to what I wanted and what I could commit to” – Female leukemia survivor, age 70 | ||
| Program organization, understanding, and accessibility: participants felt the program was well run and easy to understand. The longitudinal design allowed them to track their progress throughout; which they found helpful. The appointments were accessible and easy to attend. | “I thought the program was excellent. I thought it was well run, well monitored. I don't know how you could make it any easier to participate. It certainly made me track all my progress, and just knowing that is helpful, you know? It wasn't difficult to get in to do the [fitness assessments] since they were always scheduled when I was in the hospital anyway.” – Male leukemia survivor, age 70 | |
| Areas for improvement | Extend length of the program: participants would have liked if the program was longer in the post-discharge period. Because of the complete loss in physical functioning following the transplant, participants were disappointed to realize their strength had not returned to the level they had expected at the 3-month time point. A longer post-transplant follow-up period would have allowed them to continue to work with the RKin to improve their strength. | “I'm a little disappointed in my performance. I thought I'd be a lot stronger after the stem cell, but having said that, maybe that's normal and maybe it's individual, but I've been weak and tired and really haven't participated as much as I thought I would in terms of the exercise program...You might extend it, you know, see how I am or other patients are 8 months down the road or, you know, a year down the road hopefully” – Male leukemia survivor, age 70 |
| “I honestly thought it could have gone a little bit longer because of the issues I had, I went up and down from the treatment. But by that time [T3] you’re supposed to get better, you know, physically and all that stuff, but I just wasn’t.” – Male leukemia survivor, age 54 | ||
| Improve questionnaire tailoring: participants felt that some of the questionnaires were not relevant to where they were at in the transplant process. This was especially apparent during the T2 time point when participants had been hospitalized for many weeks and were unable to answer questions regarding social interactions and connectedness. Participants suggested that tailoring the questionnaires to the specific stages of the transplant process would have helped with questionnaire relevance and completion. | “I think the questionnaires have got to be geared for where in the transplant cycle the patient is. In other words, you're lying in the hospital, you're in the middle of COVID, they’re allowing you 2 visitors but not together, one at a time, and you got 2 pages of questions which are totally irrelevant. If you get a questionnaire and you're ignoring this and you're ignoring that, you'll end up ignoring everything because it's just, you know. You’re in the hospital feeling really lousy, and then you get a question to ask you if you went to a party, have you been drinking any alcohol, and those kinds of things, and you scratch your head.” – Male leukemia survivor, age 68 | |
| Themes on acceptability of the CaRE-4-alloBMT program | ||
| Satisfaction | Program support: participants found that the program offered much-needed support during the challenging transplant journey.The program made them feel like someone was there helping them, which had a positive mental effect during the recovery period. | “I know that [kinesiologist] may not be beside me, but I know she's watching me so that to me is somebody by your side. You really need that when you're going through something this challenging.” – Female leukemia survivor, age 34 |
| Intervention components | Fitbit and health coaching appointments: the Fitbit and health coaching appointments were well received by all interviewed participants. Self-monitoring through the Fitbit device, notably the step count tracker, motivated participants to get up and move even when they felt fatigued. Knowing they had scheduled check-ins every week promoted accountability and gave them a chance to reflect on their progress and modify their exercises as needed. | “But this has pushed me, having the Fitbit is a big part of it. You need to make sure everybody gets it because that has pushed for me personally that I would watch my steps and see that it's not good enough. I need to get in another 1000 or whatever, right each day. So for me it was important to watch that Fitbit” – Female lymphoma survivor, age 69 |
| “It really made me commit. Like I knew [RKin] was calling, so I better do the work, [RKin] is going to want a report. And then it made me reflect on, ‘OK, which ones are working for me? What aren't?’, and it was also a time to upgrade, or, you know, change some of the goals. So that weekly meeting was very important to whatever the plan was.” – Female leukemia survivor, age 59 | ||
| e-Learning modules: participants’ views on the e-learning modules were split. Some participants found that although the e-learning modules were a burden to complete, certain modules were helpful and relevant to their recovery. Other participants commented that the information presented in the modules was too general and, consequently, did not complete all the modules. | “I wasn't happy to have to go through all of them, but as I was going through them, I realized wait, this is very helpful. I feel it was a launching pad into just taking a moment in the park, taking a moment for music, taking a moment to look at the clouds. So I was able to watch it and then build. They were a building block for me, the mindfulness one really called out to me.” – Female leukemia survivor, age 50 | |
| “It really didn't do anything for me, I found the information to be very, the information was very basic. It was probably geared toward somebody that had absolutely no knowledge of wellness or fitness or diet. The information that was presented to me was probably for somebody that had never looked at that stuff before.” – Male leukemia survivor, age 58 | ||
| Barriers | Lack of time: participants struggled to find the time and concentration to complete the e-learning modules on top of the classes given by the transplant team. Participants reported feeling overwhelmed in the weeks leading up to the transplant with the many hospital appointments and transplant preparations | “Yeah, I watched a few of them, but it's not something I could finish. There was just so much going on all the time with the appointments, and the handouts, and all these things you need to sort out before the transplant.” – Female myelodysplastic syndrome survivor, age 65 |
| Symptom barrier: the biggest barrier experienced by all participants was the symptom burden following transplant. The complete decline of physical functioning and extreme fatigue made it difficult to complete the exercises and fitness assessments. | “The only barrier is how you're feeling. I mean, I was just so tired. I never really got into it as much as I thought I would. I'm a bit of a gym rat, I used to go 4 times a week and work out, run marathons and stuff like that. So I thought I would really get into it, but I was just too tired. And I'm still wobbling, you know, on my feet.” – Male leukemia survivor, age 70 | |
| Unpredictable recovery: participants noted that the unpredictable recovery process made it difficult to stay motivated and commit to the process. Participants found that recovery was not linear, significantly fluctuating day to day. This had a negative impact on their mental state. Many participants noted feeling very demoralized as a result. | “Yeah, because the transplant I think is the easy part. It's once they send you home, and everything changes, you know? I mean, you go like a rollercoaster up and down all the time. You know, one minute you're good, and one minute you’re just down at the bottom. You get complications, you know, it's very hard because you get tired too, and then it gets so hard to exercise and do all the things you're supposed to. You’re looking for when it’s going to end but you're in the dark.” – Male leukemia survivor, age 55 | |
| Category . | Theme and analytical note . | Example quotation . |
|---|---|---|
| Themes on feasibility of the study methods | ||
| Satisfaction | Program flexibility: the flexibility of the program design was able to meet their needs of adapting to a lighter load during periods of hospitalization and rehospitalization after the transplant. This made participation a lot more manageable. Participants also appreciated the one-on-one design that allowed exercise prescriptions and intervention components to be tailored to their specific needs. | “I was heading into something really challenging, and the I was hospitalized with graft-versus-host disease and then we had to amend the program again, so [RKin] was very open to changing the program to suit my needs and where I was at physically and mentally, and even emotionally.” – Female leukemia survivor, age 59 |
| “Yeah, there are times where I’d say to [RKin], ‘we need to increase my walking,’ I think [RKin] had me down for 20 minutes, twice a day and I’m like, I can do half an hour to an hour. So [RKin] goes, ‘okay, let’s increase your program.’ And then I said, you know, I don't like the elastic band – the… whatever that is – the tensor band? So I said, ‘can we change to weights?’ and [RKin] said, ‘Sure. What kind of weights do you have?’ So [RKin] was totally open to personal adjustments to what I wanted and what I could commit to” – Female leukemia survivor, age 70 | ||
| Program organization, understanding, and accessibility: participants felt the program was well run and easy to understand. The longitudinal design allowed them to track their progress throughout; which they found helpful. The appointments were accessible and easy to attend. | “I thought the program was excellent. I thought it was well run, well monitored. I don't know how you could make it any easier to participate. It certainly made me track all my progress, and just knowing that is helpful, you know? It wasn't difficult to get in to do the [fitness assessments] since they were always scheduled when I was in the hospital anyway.” – Male leukemia survivor, age 70 | |
| Areas for improvement | Extend length of the program: participants would have liked if the program was longer in the post-discharge period. Because of the complete loss in physical functioning following the transplant, participants were disappointed to realize their strength had not returned to the level they had expected at the 3-month time point. A longer post-transplant follow-up period would have allowed them to continue to work with the RKin to improve their strength. | “I'm a little disappointed in my performance. I thought I'd be a lot stronger after the stem cell, but having said that, maybe that's normal and maybe it's individual, but I've been weak and tired and really haven't participated as much as I thought I would in terms of the exercise program...You might extend it, you know, see how I am or other patients are 8 months down the road or, you know, a year down the road hopefully” – Male leukemia survivor, age 70 |
| “I honestly thought it could have gone a little bit longer because of the issues I had, I went up and down from the treatment. But by that time [T3] you’re supposed to get better, you know, physically and all that stuff, but I just wasn’t.” – Male leukemia survivor, age 54 | ||
| Improve questionnaire tailoring: participants felt that some of the questionnaires were not relevant to where they were at in the transplant process. This was especially apparent during the T2 time point when participants had been hospitalized for many weeks and were unable to answer questions regarding social interactions and connectedness. Participants suggested that tailoring the questionnaires to the specific stages of the transplant process would have helped with questionnaire relevance and completion. | “I think the questionnaires have got to be geared for where in the transplant cycle the patient is. In other words, you're lying in the hospital, you're in the middle of COVID, they’re allowing you 2 visitors but not together, one at a time, and you got 2 pages of questions which are totally irrelevant. If you get a questionnaire and you're ignoring this and you're ignoring that, you'll end up ignoring everything because it's just, you know. You’re in the hospital feeling really lousy, and then you get a question to ask you if you went to a party, have you been drinking any alcohol, and those kinds of things, and you scratch your head.” – Male leukemia survivor, age 68 | |
| Themes on acceptability of the CaRE-4-alloBMT program | ||
| Satisfaction | Program support: participants found that the program offered much-needed support during the challenging transplant journey.The program made them feel like someone was there helping them, which had a positive mental effect during the recovery period. | “I know that [kinesiologist] may not be beside me, but I know she's watching me so that to me is somebody by your side. You really need that when you're going through something this challenging.” – Female leukemia survivor, age 34 |
| Intervention components | Fitbit and health coaching appointments: the Fitbit and health coaching appointments were well received by all interviewed participants. Self-monitoring through the Fitbit device, notably the step count tracker, motivated participants to get up and move even when they felt fatigued. Knowing they had scheduled check-ins every week promoted accountability and gave them a chance to reflect on their progress and modify their exercises as needed. | “But this has pushed me, having the Fitbit is a big part of it. You need to make sure everybody gets it because that has pushed for me personally that I would watch my steps and see that it's not good enough. I need to get in another 1000 or whatever, right each day. So for me it was important to watch that Fitbit” – Female lymphoma survivor, age 69 |
| “It really made me commit. Like I knew [RKin] was calling, so I better do the work, [RKin] is going to want a report. And then it made me reflect on, ‘OK, which ones are working for me? What aren't?’, and it was also a time to upgrade, or, you know, change some of the goals. So that weekly meeting was very important to whatever the plan was.” – Female leukemia survivor, age 59 | ||
| e-Learning modules: participants’ views on the e-learning modules were split. Some participants found that although the e-learning modules were a burden to complete, certain modules were helpful and relevant to their recovery. Other participants commented that the information presented in the modules was too general and, consequently, did not complete all the modules. | “I wasn't happy to have to go through all of them, but as I was going through them, I realized wait, this is very helpful. I feel it was a launching pad into just taking a moment in the park, taking a moment for music, taking a moment to look at the clouds. So I was able to watch it and then build. They were a building block for me, the mindfulness one really called out to me.” – Female leukemia survivor, age 50 | |
| “It really didn't do anything for me, I found the information to be very, the information was very basic. It was probably geared toward somebody that had absolutely no knowledge of wellness or fitness or diet. The information that was presented to me was probably for somebody that had never looked at that stuff before.” – Male leukemia survivor, age 58 | ||
| Barriers | Lack of time: participants struggled to find the time and concentration to complete the e-learning modules on top of the classes given by the transplant team. Participants reported feeling overwhelmed in the weeks leading up to the transplant with the many hospital appointments and transplant preparations | “Yeah, I watched a few of them, but it's not something I could finish. There was just so much going on all the time with the appointments, and the handouts, and all these things you need to sort out before the transplant.” – Female myelodysplastic syndrome survivor, age 65 |
| Symptom barrier: the biggest barrier experienced by all participants was the symptom burden following transplant. The complete decline of physical functioning and extreme fatigue made it difficult to complete the exercises and fitness assessments. | “The only barrier is how you're feeling. I mean, I was just so tired. I never really got into it as much as I thought I would. I'm a bit of a gym rat, I used to go 4 times a week and work out, run marathons and stuff like that. So I thought I would really get into it, but I was just too tired. And I'm still wobbling, you know, on my feet.” – Male leukemia survivor, age 70 | |
| Unpredictable recovery: participants noted that the unpredictable recovery process made it difficult to stay motivated and commit to the process. Participants found that recovery was not linear, significantly fluctuating day to day. This had a negative impact on their mental state. Many participants noted feeling very demoralized as a result. | “Yeah, because the transplant I think is the easy part. It's once they send you home, and everything changes, you know? I mean, you go like a rollercoaster up and down all the time. You know, one minute you're good, and one minute you’re just down at the bottom. You get complications, you know, it's very hard because you get tired too, and then it gets so hard to exercise and do all the things you're supposed to. You’re looking for when it’s going to end but you're in the dark.” – Male leukemia survivor, age 55 | |