Plain english summary
Introduction
Methods
Study design
Participant selection
Study procedure
Question | Prompts |
---|---|
Introduce self and explain the purpose of the interview, recording and consent process | |
How do you feel you have been affected by the corona virus and the current situation? | What aspects of your life have been affected? How have aspects of your social life been affected? For example, hobby and leisure activities, relationships with family and friends How have these changes affected you emotionally or psychologically? Do you have any worries or concerns? e.g. financial concerns In relation to the corona virus or COVID-19, do you understand what the term shielding means? Do you understand the importance of shielding? |
When you compare yourself with others from your age, would you say that health-wise you are doing as well, better or worse than them? | Do you consider yourself overall fit for your age? Do you think your daily life activities have been particularly more affected during this pandemic because you may be less fit and independent than perhaps others? What exactly do you think was particularly challenging for you to manage on your daily life? |
How has your clinical care been affected? | What aspects of your clinical care have changed? Has your treatment been affected? Have you had fewer appointments? Have you been able to speak to the same health professionals you would do normally? |
Do you think the level of communication with the hospital team (doctors and nurses) about your care has changed during this period? | Can you explain how the level of communication has changed? Did you find any new challenges or benefits with this communication? |
Can you explain your experience of a telephone consultation? | Are there any positives or negatives of a telephone consultation compared to face to face? Have you experienced any problems with telephone consultations i.e. missing the call, communication or technology difficulties |
How have the changes to clinical practice impacted on the quality of the care you have received? | Do you have any concerns about the care you have received? Can you describe these concerns? Do you feel you are getting the same level of care as you were before the COVID pandemic? |
Thinking about your daily life, are there any areas where you feel you need additional support? | What kind of support would be helpful? Are you satisfied with the contact and support from the clinical team at The Christie? How could this support be improved? |
End of interview Thank participant for their contribution |
Data analysis
Results
Sex | |
Male | 15(50) |
Female | 15(50) |
Age | |
Mean | 70 |
Range | 50–85 |
Treatment status | |
Active treatment | 17(57) |
Active surveillance/follow up | 13(43) |
Cancer stage* | |
1 | 3(10) |
2 | 2(7) |
3 | 11(37) |
4 | 14(46) |
ECOG Performance Status** | |
0 | 10(33) |
1 | 11(37) |
2 | 7(23) |
3 | 2(7) |
Date of diagnosis | |
Pre first COVID-19 lockdown | 20(67) |
Post first COVID-19 lockdown | 10(33) |
Adapting to new modes of communication
Patient preferences for face-to-face or telephone consultations were mixed. There were no differences in preferences for mode of consultation delivery if patients were on active treatment or follow-up. Some patients preferred face-to-face consultations as they preferred to make eye contact. For some, their preference for face-to-face was linked to the information they were recieving in the consultation, patients felt it would be better to receive results, particularly if it was bad news, face-to-face. If a face-to-face consultation wasn’t an option, some patients would prefer video call to telephone as it would allow them to see facial expressions.‘No. We can’t do anything like that, we only can do things like that when my grandson’s here, you know? I don’t know technology like that.’ (LP6, FU, PS4)
Some patients preferred telephone consultations rather than face-to-face and a wide range of advantages and disadvantages were discussed by patients on active treatment and those on follow-up (Table 3). Some patients had no preference for either telephone or face-to-face consultations and were happy to be led by the clinical team as to the most appropriate option.‘Maybe you should do a Zoom call, so you can at least see the consultant. Because facial expression passes out a lot of messages in my view, and that's missed on a telephone call.’ (LP22, Active, PS2)
Advantages of telephone consultations | |
Improved communication | ‘I can’t see their facial reaction or anything, I’m more confident in saying, well, what does this mean and why can’t I do that, why can’t I take this vitamin.’ (LP17,FU, PS2) ‘When the member of the team phones me, they’ve only got me to concentrate on.’ (LP1, Active, PS1) ‘The level of communication has probably got better because we are only able to communicate via telephone at this moment in time.’ (LP5, Active, PS1) |
Psychological benefits | ‘I’m actually sat at home, I’m pottering around, I’m doing my own thing, so it distracts me a little bit and I’m not as anxious as I would have been sat in the waiting room in [the cancer centre]. So, from a mental health point of view, it’s better for me.’ (LP17, FU, PS2) ‘I suppose the positive is not having to come into hospital. Part of me gets depressed when I come into the hospital because it’s a reminder’ (LP15, Active, PS1) ‘When I’m on the phone I can manage to keep it together for the telephone conversation and then I’ve time to sit and think about what’s been said because I’m usually making notes while they are talking to me and it’s easier to digest then, for me.’ (LP17, FU, PS2) |
Practical benefits | Well, obviously it minimises travel, it minimises travel to [the cancer centre]and all that entails.’ (LP18, FU, PS2) ‘Well, they are usually within half an hour of the booked time. So it's not too bad.’ (LP20, FU, PS2) ‘I’m sure they must feel the pressure down at [the cancer centre] when they look at the waiting room and they see how many people they’ve got to get through.’ (LP1, Active, PS1) |
COVID-19 implications | ‘You are not at risk in coming in contact with anybody who has got COVID.’ (LP25, FU, PS4) ‘Why have a load of people going in and spreading this thing about. It's been bad enough, hasn't it.’ (LP29, FU, PS3) |
Disadvantages of telephone consultations | |
Missing key elements you get from face to face | ‘No, the negative is that which I said, I prefer to look in the person’s eye, than not know who you’re talking to.…when you’re discussing something like stage three lung cancer and what the prognosis is.’ (LP30, FU, PS2) ‘Face to face is okay, I don’t think we should lose that, but think it’s important for you to see your consultants and know who your team are, but positives, I would say, you can actually see your scan results there and then, you know, if you wanted to, you could be shown those.’(LP17, FU, PS2) ‘They can…to me, actually hearing it face to face, I can take it in a bit more. I don’t know. I just feel better once I’ve seen the doctor.’ (LP23, Active, PS4) |
Informal and rushed | ‘Well like I say, they're varied. Some seem a little cold, as if oh I've got ten questions to ask you, I'll ask you them.’ (LP22, Active, PS2) ‘Well, it’s just a telephone conversation, isn’t it? I mean, the info’s there, it’s just the personal touch isn’t there. Needs must in this time.’(LP4, FU, PS4) |
Situational issues related to taking the call at home | ‘There’s no-one there to support you. Yes, face to face, you’re there but you’re on the phone and you’re getting this information, there’s no-one there to help you.’ (LP19, FU, PS4) ‘Well, I suppose human contact. I mean, in an ideal world, in the initial consultations my wife was with me, it helps to have someone else there to ask the questions that you forget to ask yourself.’(LP15, Active, PS1) ‘It's very awkward because I live with my daughter who has got an autistic; I have got an autistic grandson, so he’s jumping about all the time, so it is very hard.’ (LP25, FU, PS4) |
‘The specialist nurses are there if you need to speak to them but I can ring them up anyway and they will ring me back’(LP14, Active, PS3)
Patients on follow-up stressed the importance of being able to speak to the same health professional at every appointment. This continuity helped them to build a rapport and have the confidence to ask questions. Patients found communication difficult if they did not have continuity of care.‘I don’t have any support from the clinical team… I just have that phone call once a month.’ (LP23, Active, PS4)
Patients on both active treatment and follow-up felt the appointment system could be improved as there were often problems with communication channels.‘Seeing the same doctor each time, they get to know you, but that just doesn’t seem to happen’ (LP20, FU, PS0)
‘It just said telephone consultation Monday, and I didn't know whether it was am, pm, or anywhere near the sort of time’ (LP16, FU, PS4)
Experiences of care delivery during the pandemic
A few patients discussed practical changes that had been put into place at the cancer centre due to COVID-19 such as reduced footfall, no visitors, changes to hospital entrances and screening for COVID-19. The impacts of these restrictions on patients were both positive and negative.‘The fact that I haven’t seen a doctor whatsoever since I was diagnosed with terminal cancer.’ (LP23, Active, PS4)
‘There’s not as many queues now because they’ve reduced footfall.’ (LP17, FU, PS2)
‘I suppose it’s impacted my wife a little bit, having to wait outside in the car park.’ (LP24, Active, PS3)
Patients on active treatment talked about the impact COVID-19 had on additional support. Patients did not feel they had the same access to support as they would have pre-pandemic. Restrictions and changes to clinical care delivery made it more difficult to meet people in similar situations and share experiences.‘But the queues outside there were horrendous, and on the days when it was just lashing down with rain, that wasn't a very pleasant experience.’(LP16, FU, PS4)
‘If you’re sat in a clinic for gynaecological cancers then you’re going to meet other women that have got the same condition so you get talking to somebody so I guess that is the only difference.’ (LP5, Active, PS1)
Most comments about homecare were from patients on active treatment and their experiences were mixed. Some patients felt very satisfied with their care despite changes to the way the service was delivered.‘I cannot access facilities, say go to the hospice for complementary therapies, I cannot access various things that I would be able to have done if COVID was not around.’ (LP5, Active, PS1)
‘I’ve had the home care team and they’re a hundred per cent can’t fault them.’ (LP1, Active, PS1)
Patient experience was mixed in terms of the care they had received at other sites. Very few patients on either active treatment or follow-up spoke positively about their experience with primary care during the pandemic. Patients had problems contacting primary care providers and felt generally neglected and let down by the service. Patients had drastically changed their opinions of their General Practitioners (GPs) and felt they did not have the same relationships with their GPs anymore and could not rely on them to provide the same level of care they had received previously. Patients were also much less supportive of telephone consultations in the context of primary care.‘They only say between 9:00 and 3:00 because they don’t know…someone might show COVID symptoms, so they won’t be seen that day, you know what I mean? Whereas prior to COVID…they give you maybe a bit of a narrower timeslot.’ (LP1, Active, PS1)
The majority of patients said there were no changes to the level of communication and clinical care provided by secondary care facilities. This included positive experiences with the clinical team and support groups.‘You can’t see the doctor face to face. You go to the hospital, you’ll get seen face to face but you go to your GP, they don’t want to know. You get a phone call. It’s not the same.’ (LP19, FU, PS4)
‘They’ve been amazing and so have…because I had the radiotherapy at [local hospital] and they were absolutely fantastic.’ (LP21, FU, PS3)
‘A, sort of, self-help group run by the one of the nurses there…And over this last…12 months, we've had two Office Team briefings, so we're still in contact with people, and we can see people.’ (LP22, Active, PS2).
Impact of the COVID-19 pandemic on quality of life
‘I’m really frightened of catching anything.’ (LP2, Active, PS2)
Some patients were less affected than others and had tried to maintain a positive attitude throughout the pandemic. In some cases, patients felt there had been no impact on their social interactions and relationships either because their social contacts were limited anyway or because they had found other ways to interact and did not perceive the lack of physical contact to be a problem. Patients highlighted the importance of support from family and friends and the majority found the lack of social and physical contact very difficult. Follow-up patients seemed to focus more on the lack of contact with family whereas patients in active treatment described missing social interaction more broadly.‘I’d like for COVID not to exist then I could perhaps get out for lunch and things like that and sometimes I feel a bit angry about it…I’ve not got over long left and I would prefer if COVID wasn’t around I can come and go as I please while I feel fit.’ (LP14, Active, PS3).
‘The worst one is we can’t really see our grandchild.’ (LP12, FU, PS3)
Participants felt let down and angry by the behaviour of others who did not seem to follow government guidelines.‘The fact we've got technology helps, but it…you do miss, you know, the cuddle, if you like, when you meet people.’ (LP22, Active, PS2)
‘So angry at people. Because you do see them, and even if you go out with a mask on, or not a mask on, it depends, people still barge through you, so you can social distance, but then other people don't.’ (LP22, Active, PS2).
In some instances, participants felt confused over shielding guidance as they received conflicting information from different sources.‘It’s other people that you see on TV and the ones out partying, you know. It’s quite upsetting.’ (LP3, FU, PS2)
‘It was confusing, yeah, because I was saying to my wife, well, they must think I can go out. And she said, don’t be silly, you’ve got lung cancer.’ (LP3, FU, PS0)
It was not just the changes to the patients’ personal lives that caused social and psychological consequences. For many patients, the changes to the way their clinical care was delivered also affected them. Not being able to have a relative there for support during appointments or inpatient stays was difficult for many patients. The move away from face-to-face contact also caused a significant psychological impact for some patients and often left them feeling ‘sad’ or ‘neglected’.‘But there was no communication as far as I can see with the GP, so the GP hasn’t got me down as someone who’s been shielding.’ (LP15, Active, PS1)
‘That’s a big one, yes, having the support there. I think that’s a real one, not having your family and especially my wife.’ (LP19, FU, PS4)
‘I wasn’t able to have visitors in hospital because of COVID and that impacted on me greatly, psychologically.’ (LP5, Active, PS1)
Some patients commented on how well the changes had been dealt with and how every effort was made by staff to support patients. One patient felt having to go to appointments alone actually had a positive impact on her family.‘I suppose the biggest thing is not being able to talk to your consultant face to face, I have telephone conversations….it is a bit frustrating.’ (LP22, Active, PS2)
‘When I started to go to [the cancer centre], it was great, I had my daughter with me… and then it stopped then when no one was allowed in, I was a bit worried, but it was marvellous after because they were so good to me, you know? So I’d no issues after that…the way everything was set up was marvellous.’ (LP11, FU, PS3).
Several patients found COVID-19 impacted their lifestyle as they were unable to do normal activities. Patients were going out much less frequently than they used to and were relying on family and friends. The working lives, hobbies and activities of patients were impacted by COVID-19 with many saying holiday plans were affected. For some though, the changes brought about by COVID-19 meant they did not feel as though they were missing out due to their cancer.‘So, I think, for me, it’s all to do with my mental wellbeing and my family. It’s less impact on them as well, you know, they can, sort of, carry on with their lives.’ (LP17, FU, PS2)
‘I work in a supermarket, you know, on checkouts and self-scan. So, I’m rubbing shoulders with people, that’s why I can’t go back.’ (LP4, FU, PS4)
Generally, patients on active treatment and follow-up did not feel they were impacted financially during the pandemic, one patient commented that they felt they were probably ‘better off’. Some patients however did feel they had suffered a financial impact either directly or they had concerns about the financial impact on their family.‘The thought of not going abroad for holidays was upsetting at first because that’s what we used to love doing but when everyone went into lockdown, everyone’s in the same boat as me.’(LP14, Active, PS3).
‘I did have because I wasn’t getting any money from anybody.’ (LP4, FU, PS4)
‘I’ll be leaving my wife behind, who is dependent on quite a bit of help.’ (LP9, Active, PS2)
‘I have worries about my children not being able to earn enough money. My son’s just been laid off.’ (LP3, FU, PS2)