In total 11 in-depth, individual interviews were conducted in the period March to May 2021. Six of the participants were female, five were male, their mean age was 56 years (range 45-83). Four of the participants received remote monitoring through telephone calls only, while five participants had used video-conference through Skype or Zoom. Only two of the participants had used a digital solution which included answering questions about their condition on a daily basis, which were submitted on-line, allowing for healthcare personnel to assess the response and respond if needed.
Through analysis we identified two main themes with related subthemes; 1) The pandemic-an extra burden, with subthemes a) views of physical hospital visits, and b) changed services, and 2) Remote monitoring cannot replace human contact, with subthemes a) ambivalent perspectives, b) technological challenges, and c) saves time and energy. Results are supported by illustrative quotes, marked with participant number (participant = P) in parenthesis.
The pandemic-an extra burden
All of the participants were conscious about being vulnerable to infections due to having cancer and receiving cancer treatment. Hence, the pandemic to them represented an extra burden. Their views on physical visits to the hospital differed. Moreover, most of the participants experienced that their healthcare services had changed due to the pandemic, but there was no consensus on how the services had changed.
Views of physical hospital visits
All of the participants stated that even if they had received remote monitoring services during the pandemic, they still needed frequent physical hospital visits for medical treatment such as chemotherapy. Their views on attending the hospital was two-folded: some perceived that physical visits to the hospital were an increased risk for getting COVID-19 or any other infection. For example, participant 6 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»
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:
«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»
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:
«I’m not so stressed, I do not get near other people anyway … Life is too short to worry, I rather feel taken care of … so, I’m not afraid to go to the hospital”.
Hence, the participants’ perspectives on whether it was safe or not in hospital for them as being sick to cancer and with an increased risk of getting the COVID-19 virus varied. This did not seem to relate to whether the participant was in a terminal phase of the disease or not.
Changed services
All of the participants experienced that the healthcare services had changed due to COVID-19. But, the way the services had changed varied, according the participants. All of the participants experienced that physical meetings were replaced by remote monitoring. Still, some also stated that they experienced having a choice regarding remote monitoring. For example, participant 7 prompted:
«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»
Some of the participants emphasized feeling that the remote services had limited their services too much. E.g. participant 5 reported:
« … 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 … ”
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:
« … 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»
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:
« … 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 … »
Regarding relatives attending the hospital visits, this varied between participants. Participant 5 prompted:
«..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»
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.
Remote monitoring cannot replace human contact
All of the participants presented remote monitoring as something «new», and their views on this solution varied. Whether they received remote monitoring by telephone, video consultations or more advanced solutions with the possibility to complete a questionnaire or fill in measurements, did not seem to impact their views. However, all agreed that remote monitoring could never totally replace physical consultations in hospital. Participants’ views seemed to grow more positive over time, but still they emphasized both positive and negative aspects of remote monitoring solutions in cancer care.
Ambivalent perspectives
Most of the participants reported initially feeling uncertain about remote monitoring. This was often due to participants not feeling familiar with video consultations. Participant 9 elaborated:
«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»
Moreover, several of the participants felt that remote monitoring represented a kind of distance between them and the physician or nurse. Participant 5 stated:
«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»
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:
«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 … »
Participants who initially felt uncertain about remote monitoring reported that this changed after having used this some time. Participant 4 explained:
«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 … »
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:
«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.»
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.
Technological challenges
Several of the participants reported to be familiar with technology and digital meetings before the pandemic, even if not in relation to their illness. They perceived that having this competence in front was an advantage, and some reflected about how remote monitoring could feel like for patients without such competence. Regardless of this, all of the participants emphasized the importance of avoiding technological challenges, which several of them had experienced. Participant 9 quoted:
«It’s quite bad..lagging, and she talks and I hear it afterwards … Last time the net fell out..»
Participant 5 also stated that the remote monitoring solution required updated equipment at home. She elaborated;
«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»
Participant 11 told about being without internet coverage, having to wait in bad weather, and having to update or re-install applications. He stated:
«It has to be user-adjusted. It requires that you understand the user interface, dare to download the app, make updates and so on … »
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.
Saves time and energy
Most of the participants appreciated that remote monitoring was effective, and saved time. Several of the participants reported of periods with feeling exhausted due to deterioration or treatment side-effects. Then, not having to go to the hospital, waiting in line in a crowded waiting-room, and spending two-three hours in hospital felt like a relief. Participant 3 said:
«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 … »
This was supported by most of the participants. Participant 1 also emphasized other positive effects of remote monitoring:
«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»
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:
«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»
Participant 8 also elaborated:
« … and I don’t even have to be at home. I can sit in my caravan in the mountains and make the appointment there»
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.