Introduction
Methods
Conceptual design
Sampling
Procedure
Data analysis
Results
Category | N = 496 | %N |
---|---|---|
Age range | ||
0–19 | 2 | 0% |
20–29 | 13 | 3% |
30–39 | 39 | 8% |
40–49 | 87 | 18% |
50–59 | 94 | 19% |
60–69 | 101 | 21% |
70–79 | 52 | 11% |
80+ | 25 | 5% |
Unknown | 71 | 15% |
Gender | ||
Female | 397 | 80% |
Male | 98 | 20% |
Type of caller | ||
Family/friends | 176 | 35% |
General public | 33 | 7% |
Someone with cancer | 287 | 58% |
Stage of cancer | ||
First diagnosis (localised) | 191 | 39% |
Second primary | 3 | 1% |
Metastasis/widespread/advanced | 126 | 25% |
Terminal stage | 18 | 4% |
Reoccurrence | 10 | 2% |
Stable disease | 30 | 6% |
Stage unknown/not applicable | 114 | 23% |
Service demand
Distress levels
Qualitative analysis
131120 | CCOC | |||
---|---|---|---|---|
Theme | Frequency of main themes (% of N) | Sub-themes | Illustrative quotes* | |
Psychological distress and fear over virus susceptibility | 53% | 33% | Anxiety about perceived susceptibility | “I would be lying if I said I wasn't worried about my heightened risk.” “I finished my breast cancer treatment a few months ago, after almost a year of chemo and radiotherapy. I'm really worried about whether I am immune-supressed and my risk of getting COVID.” |
Psychological distress | “I have a really good support system. COVID makes it hard though. Lately, the anxiety is eating me, I feel no one understands me and I just vent at my husband. Logically, I'm grateful to everyone but there's this side of me that is negative, isolated and just trying to get through the day.” “I had found ways to cope with cancer but I'm really struggling with everything now with the extra worry of COVID19. I don't feel like anyone understands what the fear is like” | |||
Feelings of isolation | “I feel totally alone. I could cope with the cancer or COVID19, but not both together. It's too much.” “I feel so alone even though [I] have support. The COVID pandemic has left me feeling even more alone because every time I see a good mate we can't hug and keep our distance. I understand it totally, but I really need a hug. I'm trying to be brave.” “I'm feeling really isolated at the moment as I have advanced cancer and haven't been able to leave the house. All the usual social activities and support that I get have gone due to the COVID restrictions.” | |||
Practical issues | 33% | 9% | Employment issues | I'm really worried about going back to work at this end of this month because of COVID-19. I finished my cancer treatment recently and I'm not technically in remission. I’ve been told that I am immune supressed so I think going back to work might put me at risk so I don’t know what to do? “I'm worried about COVID-19 at the moment. I had cancer a few years ago and received treatment that has affected by immune system. I work as a teacher so I'm really worried about being exposed to the virus. It makes me feel constantly on edge.” |
Financial concerns | “I’ve had some complications following my recent cancer surgery and need to have another scan. My surgeon is insisting that I need it but I can’t afford it at the moment as my partner’s business is really struggling because of COVID-19.” “I have cancer and young children so things have been really difficult for me at the moment. My husband recently lost his job due to COVID19 and it’s made me really worried and upset about my ability to provide for them.” | |||
Access to essential items | “I have recently finished my chemotherapy and don't have anyone to do my shopping for me. I went to the supermarket this morning and couldn't get any of the things I needed because all the shelves were empty. I'm so stressed that I'm having to put myself at risk of COVID-19 by going out in public and I can't even buy toilet paper.” | |||
Transportation | “...I have to travel 40 minutes away for a biopsy. I have no reliable transportation at this time, and with the coronavirus, It won't be scheduled for quite some time. I live in a very rural area... on a fixed income and can't afford to pay someone to take me. I also have no family. I called social services too but had no luck...” “I need to get to the hospital every few weeks for my chemotherapy but I'm worried about taking public transport due to COVID-19. My doctor has also told me to avoid public transport too but I don't drive so I'm not sure what to do. I have been taking taxi's recently but it's really expensive and I won't be able to keep doing this.” | |||
Disruptions to cancer treatment and services | 11% | 26% | Delay or cancellation of appointments or treatment | “I was diagnosed with cancer a few weeks ago but got told yesterday that due to COVID risk my surgery has been delayed. I feel really isolated and worried about the delays and what this means for the cancer.” “My GP recently referred me for a mammogram as I found a lump but all BreastScreen services have been cancelled because of COVID19. I'm really worried it might be cancer” |
Self-elected cancellations | “I've noticed some changes to my skin recently that I probably need to see GP about but I'm putting it off as I'm really worried about going there because of COVID-19.” “I want to cancel my hospital appointment as don’t think it’s worth the risk at the moment with COVID-19” | |||
Transition to telehealth services | “I have just had a phone call from the outpatient clinic, the doctors have cancelled all appointments tomorrow, they don’t want people coming in, I will receive a text setting up a phone consult with my Surgeon.” “I’ve been referred to a psychologist at the hospital as I've been struggling with things lately due to my cancer diagnosis. I've managed to get a telephone appointment now but I'm really disappointed not to be able to see someone face to face.” | |||
Concerns of cancer growth and long-term prognosis | “I am currently off my chemo...I can already feel pain & growth in some places where I've had [metastatic disease] before. Hopefully, I'll be able to go back on it sooner rather than later. Life goes on, we must suck it up as best we can” | |||
Information needs | 7% | 44% | Lack of clear and consistent information about virus susceptibility | “I would really appreciate it if someone could inform those of us who are currently undergoing or have recently completed chemotherapy how compromised our immune systems are in relation to Covid-19. There seems to be no information on the web - except a general comment that those with cancer are at greater risk. That's a massive umbrella statement which gives no useful information.” |
Uncertainty around recommended safeguarding measures | “There isn’t any information, from what I have seen, on what people with chronic disease and low immune systems do to navigate transport, hospitals, medical clinics or even supermarkets safely.” | |||
Absence of consistent information about the use of personal protective equipment | “I'm just wondering about masks. There's a lot of conflicting information about wearing masks. Globally, 50 doctors have died from the virus and I don't know how many nurses. That's really frightening. If professionals cannot protect themselves, I worry that we [won’t] be able to.” “What is our right [as patients]? Can we ask the doctors, nurses and other medical staff to wear facemasks? I am thinking of writing a letter to my specialists and the management of the hospital.” | |||
Carer-specific issues | 20% | 11% | Concerns around not being able to provide emotional & practical support | “I feel alone because family and friends can't help out and most support services are closed down.” |
Visitation issues | “I haven't been able to get in there to [visit] him [in hospital]. He doesn't want me to risk getting the virus. He is in a lot of pain though.” “My partner is dying in hospital and I'm so distressed that I might not be there when he passes away. COVID has meant that I can only visit him at certain times.” My mum is receiving palliative care and she's been deteriorating. She will probably be moved into hospital shortly and I'm devastated that I might not get the chance to see her before she dies because of COVID restrictions.” | |||
Burn out | “It[s] so tiring and stressful dealing with it all on top of coronavirus. I am doing everything for my parents as well as trying to look after myself... and as a single parent [with my own family] ... I’m trying to stay positive & happy but have my times when it’s all too much.” | |||
Concerns about being an exposure risk to others | “My wife was diagnosed via test as positive yesterday for COVID19…. so, chances are very high I also have it (no symptoms though). My wife is currently in quarantine.” “My husband has cancer and I'm concerned about bringing the virus home with me from school as I'm a teacher. I'm taking all the necessary precautions, but I am constantly worried.” |
Psychological distress and fear of virus susceptibility
I finished my breast cancer treatment a few months ago, after almost a year of chemo and radiotherapy. I'm really worried about whether I am immune-supressed and my risk of getting COVID.-131120 caller
I'm feeling really isolated at the moment as I have advanced cancer and haven't been able to leave the house. All the usual social activities and support that I get have gone due to the COVID restrictions.-131120 caller
Practical issues
I'm really worried about going back to work at this end of this month because of COVID-19. I finished my cancer treatment recently and I'm not technically in remission. I’ve been told that I am immune supressed so I think going back to work might put me at risk so I don’t know what to do?-131120 caller
I have recently finished my chemotherapy and don't have anyone to do my shopping for me. I went to the supermarket this morning and couldn't get any of the things I needed because all the shelves were empty. I'm so stressed that I'm having to put myself at risk of COVID-19 by going out in public and I can't even buy toilet paper.-131120 caller
I need to get to the hospital every few weeks for my chemotherapy but I'm worried about taking public transport due to COVID-19. My doctor has also told me to avoid public transport too but I don't drive so I'm not sure what to do. I have been taking taxi's recently but it's really expensive and I won't be able to keep doing this.-131120 caller
Disruptions to cancer treatment and services
I was diagnosed with cancer a few weeks ago but got told yesterday that due to COVID risk my surgery has been delayed. I feel really isolated and worried about the delays and what this means for the cancer. -131120 caller
I've noticed some changes to my skin recently that I probably need to see GP about but I'm putting it off as I'm really worried about going there because of COVID-19.-131120 caller
Information needs
I would really appreciate it if someone could inform those of us who are currently undergoing or have recently completed chemotherapy how compromised our immune systems are in relation to Covid-19. There seems to be no information on the web - except a general comment that those with cancer are at greater risk. That's a massive umbrella statement which gives no useful information.-CCOC online postTable 3Recommendations to guide needs-based interventions for Australian cancer care during COVID-19
Recommendation theme Recommendation Description Support Increased psychological support Greater focus is needed on developing targeted psychological support interventions that specifically meet the needs of people affected by cancer in the context of COVID-19. Interventions should address the distinct set of emotional challenges this pandemic poses for cancer patients, survivors, and their carers, noting that mental health interventions developed for the general population may be less well suited to the specific needs of vulnerable groups [28]. Effective communication regarding changes to cancer care plans Changes or modifications to cancer treatment plans should be discussed with patients and carers within the framework of shared decision making. They should be fully informed about the rationale behind unanticipated changes to their cancer care plan, in addition to the risks and benefits of such alterations. Clinicians and health workers involved in cancer services may require further support and training to deliver this information and support effectively. Access New models of telehealth-based supportive care In the absence of face-to-face contact and physical connection, alternative and novel supportive care options need to be developed that ensure safe contact. Where appropriate, secure digital platforms may provide opportunities to improve social connectivity and peer support where face-to-face interactions are not possible. Telehealth may have particular value in the context of cancer survivorship, where the focus is less on active cancer surveillance and more on the transition to normal life [29]. The important role of carers also needs to be considered in the context of telehealth to ensure they have opportunities to be part of care and treatment discussions. New digital models of care should be co-designed and tested with end-users alongside implementation to ensure its appropriateness and acceptability. Further, comprehensive training and support for healthcare professionals is needed to effectively manage transitions to new care modalities. Visitation flexibility on compassionate grounds Patients placed in isolation for clinical reasons may be at increased risk of experiencing depression, anxiety, anger, and loss of self-esteem; which has implications for patient safety [30]. Flexible protocols with respect to visitation for close relatives at cancer treatment centres and hospices should be explored, in consideration of the appropriate virus protection measures. This may have particular value in those circumstances which pose increased risk of high psychological distress for patients, carers and family members (e.g. end of life care, border restrictions, intensive treatment support). Information Timely information and guidance As COVID-19 evidence evolves, information resources and guidance should be continuously updated to ensure people affected by cancer are equipped with timely and reliable information. Information should attempt to address specific barriers and gaps in knowledge such as the impacts of certain cancer treatments and how to best minimise the risk of infection. Such information should be pitched in a way that is accessible for those with low literacy. Information repositories have recently emerged in Australia [31], containing evidence-based resources and guidance, however, these may require further promotion and regular updates accordingly. Targeted information resources also need to be considered specifically for underserved populations such as CALD and Aboriginal and Torres Strait Islander communities. Improved communication of virus control measures operationalised in healthcare settings Reassurance should be provided to both the general population and to cancer patients regarding safety measures and operational changes within Australian healthcare settings. This information may prevent fear-based decision making that could ultimately delay diagnosis and treatment. Targeted public health campaigns encouraging the public to attend regular cancer screening appointments may also be necessary to prevent the late detection of cancer and subsequent adverse clinical outcomes.
Carer-specific issues
My partner is dying in hospital and I'm so distressed that I might not be there when he passes away. COVID has meant that I can only visit him at certain times.- 131120 caller
My husband has cancer and I'm concerned about bringing the virus home with me from school as I'm a teacher. I'm taking all the necessary precautions, but I am constantly worried. - 131120 caller