A new study by The University of Sydney and Duke University in the United States has found that people living with cancer suffered considerable stress during the pandemic due to strict rules preventing a family member, support person or ‘informal caregiver’ from attending appointments and treatments.
Experts now say we need to ensure all patients have access to a carer or support person.
“We need to plan for the next pandemic and make sure that informal carers are not left out in the cold by infection prevention measures,” says Professor Alex Broom of the Sydney Centre for Healthy Societies.
“Rather than arguing about whether telehealth or in-person appointments are better, it is important to consider how we can use technology to include a support person in an appointment even if they are not able to be in the same room. And we need to talk to patients about what kinds of appointment they would prefer to be able to do remotely. We can learn from these difficult pandemic experiences and make cancer care better for patients and their support networks today and in any future global health emergency.
"We need to plan for the next pandemic and make sure that informal carers are not left out in the cold by infection prevention measures."
Professor Broom also noted that the support provided by friends and family is often undervalued in our health system, whether in COVID times or not. And, as healthcare providers continue to restrict access to in-person appointments for patients or carers who are COVID positive, clinicians need to consider how carers can continue to be included even when they cannot be present at appointments.
Comprehensive support from family and friends makes the difference between coping and not coping for many cancer patients, and this was clear from our study, concludes Professor Broom.
Published in Clinical Cancer Research, a journal of the American Association for Cancer Research, the study was undertaken by Professor Alex Broom and Dr Katherine Kenny of the Sydney Centre for Healthy Societies in the Faculty of Arts and Sciences at The University of Sydney in collaboration with Professor Mustafa Khasraw from Duke University, who is also an honorary professor at The University of Sydney.
The research team interviewed 65 cancer patients and 28 of their informal caregivers (family and friends) in Australia and the US.
“We expected there to be problems, but many were unexpected,” said Professor Broom.
“We expected the swift shift to telemedicine to create clinical communication challenges, but a surprising problem was not how it unsettled doctor-patient interaction, but how it reduced involvement of family, friends and carers in cancer care.
“This – combined with lockdowns and reduced mobility – erased critical social networks and supports. Such networks are not merely peripheral but critical to survival.”
“Added to this, there was a sense of the cultural disappearance of cancer – that it had fallen off the agenda compared to COVID, which continued to draw societal attention.”
While participants valued the use of telehealth for routine appointments, many found that their healthcare providers struggled with the technology, leading to unsatisfactory appointments with a “disembodied voice” trying to deliver important news, and they felt they had a reduced chance to ask questions or receive reassurance.
For cancer patients, many appointments and treatments were still delivered face-to-face, despite pandemic restrictions. But for patients who were unable to take a support person with them (due to hospital policies around visitors during the pandemic), these in-person appointments could be distressing.
One woman with ovarian cancer in the US described it as “a lonely journey”, a sentiment echoed by an Australian woman with lung cancer, who described going to her appointments as “horrible”:
“You couldn’t take a support person with you… and to sit there and get that news, that it had doubled in size in the six months since my brain scan before, and I walked out of there and there were so many questions that I asked, but I don’t remember the answer. Like, “When should I have my follow-up scan?” and things like that. Because normally, if you have somebody with you you’ve got two [sets of] ears listening, so when you walk out you kind of go, “Okay, well I need to book this in and do this and do that.” But because it was myself and I was a bit overwhelmed, it’s not very often I go by myself, and so it just reinforced the importance of having someone there. And the consequences of that have been quite dramatic.”
"Because it was myself and I was a bit overwhelmed, it’s not very often I go by myself, and so it just reinforced the importance of having someone there. And the consequences of that have been quite dramatic.”
A key recommendation of the paper is for healthcare providers to facilitate remote participation of a support person where they are prevented from attending in person (e.g. set up a separate room with a video connection). As a US-based patient with breast cancer noted:
“Not in a public waiting area. Not outside the building. Not in your car. Not in a restaurant down the road. A physician should not also be assuming that, well her spouse is going to be sitting at home, looking at the computer at home. The support person/spouse can’t be driving the patient to their appointment and get back home in time to sit at the computer at home.”
Professor Mustafa Khasraw from Duke University said: “We believe that the greatest challenges centred around increased social isolation, diminished social supports, and the experience of societal distraction, which compounded the difficulties of cancer survivorship.”
“Looking to the future, we should learn from these experiences and make sure that plans are put in place to offset interrupted social networks and diminished support. We need to make better use of technological innovations to combine the safety of distance while maintaining vital connectedness with formal and informal care providers.”
Declaration: This research was funded by the Australian Research Council (ARC Discovery Project DP190100745) and a National Cancer Institute Cancer Center Support Grant (NCI CCSG grant number P30CA014236).
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