Background
Materials and methods
Setting and sample
Interview guide
1. Can you please tell me a little about your health, and why you are being remotely monitored by the cancer ward? | |
2. Can you please describe the remote monitoring solution you use? Follow up: Do this require any extra equipment? | |
3. Is there any equipment you are more or less comfortable with? Follow up: Can you please elaborate on that? | |
4. Did you get any information or training before starting with the remote monitoring solution? Follow up: Can you please describe this further? | |
5. Can you describe a day which includes remote monitoring? | |
What is important to you when meeting the cancer ward personnel? | |
6. Can you describe your need for contact with a nurse? Follow ups: What do you need? Why do you need this? Is your need covered? | |
8. Can you describe your need for contact with a physician? Follow ups: What do you need? Why do you need this? Is your need covered? | |
9. Did something change in your health service after the presentation of COVID-19? Please elaborate. | |
10. Do you feel you have an impact on the services you receive? | |
11. Is there something especially positive about remote monitoring? | |
12. Is there something especially negative about remote monitoring? | |
13. Is there something you want to tell me about regarding your services during COVID-19 that I have not asked you about? |
Data collection
Analysis
Transcript | Codes (step 1) | Sub-theme (step 2-3) | Theme (step 4) |
---|---|---|---|
P 4: … when I read it, I thought that it may be a bad solution and not enough for what I wished for … want to be examined …. But, after I had spoken to her, I think we spoke for 45 min, had good time, then I felt more safe, and got an overview of future consultations. Now, I have been under treament for over one year, and you get used to thing … But, sometimes, you need the re-assurance that things will work out fine, you get the services you need … But, we are kind of more alone in this … . | Bad solution Not enough Want to be examined Had good time Got an overview Get used to Need re-assurance Get what you need More alone | Ambivalent perspectives | Remote monitoring can not replace human contact |
Results
The pandemic-an extra burden
Views of physical hospital visits
Others perceived that the hospital was safer than other public areas due to the heavy limitations. This indicates that participants were aware of the risk for catching illness when in public, and that this was something they reflected about. Participant 1 described that the situation regarding risk of catching the virus due to contact with other people had decreased due to everybody using face masks. Participant 11 stated:«If we try to avoid this (the virus) … the hospital isn’t the right place to be. I wasn’t very interested in going to the hospital, staying in the corridors there»
About half of the participants mentioned that they felt that the hospital was «the safest place to be» due to strict legislations, and since the frequent physical visits were necessary they appreciated this. Participant 9 quoted:«Early during corona, it was no control at all, I think. But, afterwards this has become our safety, because the initiatives have led to the hospital feeling safer»
Changed services
Some of the participants emphasized feeling that the remote services had limited their services too much. E.g. participant 5 reported:«If I don’t want the remote monitoring it’s no problem. I often get a choice … But, I think that if it wasn’t for the corona, remote monitoring wouldn’t have been an issue … No questions about that before the pandemic … But, I think that remote monitoring has been positive»
This was supported by e.g. participant 4, who experienced lacking services that were offered in «non-pandemic» times, which she had read about in information brochures:« … getting treatment trough physical meetings versus always feeling alone is the worst...and all the follow-ups in-between chemo were cancelled … So, I feel that this has been tougher … ”
Due to the cancer diagnosis, several of the participants reported being vulnerable, and needing lots of information about the progress of their illness, about the treatment and about adverse-effects of the treatment. In this situation, many of the participants emphasized the importance of including relatives in both remote and physical consultations. Participant 4 had experienced that relatives were not allowed in the hospital, even when receiving information about the diagnosis the first time:« … the negative is that you feel … that the examination should have been physical, and was not … The conversation is okay, but she (the physician) said that she was meant to examine my breasts, and I got a remote monitoring appointment»
Regarding relatives attending the hospital visits, this varied between participants. Participant 5 prompted:« … one could wish, and it is also recommended in hospital, as she (the physician) told me at my first control after I got the cancer diagnosis, that I should bring along a relative because four ears hear better than two … But, they (the relatives) were stopped at the entrance … »
Hence, there was no agreement across participants on whether the remote monitoring solution represented equal health service as “traditional health services” to cancer patients- or if the “change” was to the better or to the worse. It seemed like participants who had experienced missing information or missing out on services they expected to receive, were the most negative to remote monitoring replacing physical consultations.«..you don’t always catch what’s been said.. It depends on your own mental condition. And they often recommend to bring a person. I took my husband to the consultations, and he heard other things than I did, because I was black, but he also heard the positive feed-back»
Remote monitoring cannot replace human contact
Ambivalent perspectives
Moreover, several of the participants felt that remote monitoring represented a kind of distance between them and the physician or nurse. Participant 5 stated:«When you have a severe illness, there’s something about meeting a person because you are uncertain about so many things … When sitting like we do now (video interview), after having hung-up, because you are anxious about results and you forget to ask, even if you have written it down … The focus on the screen takes over, I catch what she (the physician) says, but then I forget. For my next appointment I have asked to come to the hospital»
Still, all of the participants, except one, reported that remote monitoring filled its’ mission allowing for follow-ups in-between physical visits to hospital due to needing treatment or physical examinations. However, several of the participants described that remote monitoring had to be initiated after having met the physicians and nurses in person. Participant 11 described it like this:«The limit for talking about things gets higher during video consultations. You think that the time is limited, and then you try to just say what’s absolutely needed … Body language is absent, and short anecdotes or comments as well, gets somewhat more formal … The little details that gives a lot of information are gone»
Participants who initially felt uncertain about remote monitoring reported that this changed after having used this some time. Participant 4 explained:«It’s human-to-human meetings in physical presence, sitting on a chair beside the physicians’ desk … You get another sort of contact, eye, body, everything … I think this takes longer time through remote monitoring … I think the first meetings should be face-to-face … »
The participants appreciated that physicians indicated having much time available during the remote monitoring session, in contrast to feeling «in-line» at the hospital. Moreover, remote monitoring easily allowed for participants to get in touch with healthcare personnel when needed. Participant 1 prompted:«When I read about it, I thought it might be a bad solution, not good enough … But, after we talked for about 45 minutes, I felt more safe … »
Participants were on one hand satisfied with avoiding the long travel distance to hospital, but on the other hand they were critical to remote monitoring totally replacing physical consultations. In addition, participants’ reports underline the importance of proper information and support when being offered remote monitoring.«I know I can call if there’s something I have forgotten … Not as easy if you’ve been to a physician, overloaded with information and walks out the door. Then you’re finished … It’s easier to be followed-up, and after a phone call it’s just for me to call back if needed.»
Technological challenges
Participant 5 also stated that the remote monitoring solution required updated equipment at home. She elaborated;«It’s quite bad..lagging, and she talks and I hear it afterwards … Last time the net fell out..»
Participant 11 told about being without internet coverage, having to wait in bad weather, and having to update or re-install applications. He stated:«If the connection is bad, and the systems are lagging so that we cannot talk as we want, it gets very negative. In the beginning, it went black, lagged … I had to improve my system at home, and I think the hospital did some adjustments as well. It requires a proper internet, and fast equipment»
These findings underline the importance of patient education when using remote monitoring, and to ensure that patients have proper equipment for such services at home.«It has to be user-adjusted. It requires that you understand the user interface, dare to download the app, make updates and so on … »
Saves time and energy
This was supported by most of the participants. Participant 1 also emphasized other positive effects of remote monitoring:«You can do it at home, doesn’t take more than half an hour … Otherwise, you have to go back and forth, take blood-samples, then a long time before the treatment, and then I get two days at least feeling exhausted … »
In addition, several of the participants felt like remote monitoring allowed them to «live like normal», not having to adjust their lives to «being sick». Participant 5 stated:«Even if the physician or nurse is delayed, it doesn’t matter. Everything takes less time. Just have to be ready for a call in two minutes, I have it with me (the cell phone), it’s the same whether it is now or in ten minutes»
Participant 8 also elaborated:«With remote monitoring I can be at work. Just plan for a meeting, like any other meeting … And from home-office as well, just log-off and log-on»
Hence, remote monitoring did not just save energy and time, but also allowed participants to use their energy in «good periods» on meaningful activities. Cancer patients are critically ill, as were the participants in this study. The findings in this study indicate that it is important for them to choose for themselves what they spend their valuable (and sometimes limited) time on.« … and I don’t even have to be at home. I can sit in my caravan in the mountains and make the appointment there»