Results of qualitative study.

Through our thematic analysis we developed two major themes relating to older adults and caregivers’ cancer treatment experiences during the COVID-19 pandemic: (1) alterations in the individual and dyadic cancer experience; and (2) navigating health and cancer systems in the midst of the pandemic.

Please see Fig 1 for a visualization of the main themes.

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Fig 1. Thematic visualization how the COVID-19 pandemic impacted cancer treatment plans and decision-making for older adults with cancer and their caregivers.

https://doi.org/10.1371/journal.pone.0291756.g001

We noted that there were regional differences in experiences in patients recruited in British Columbia versus those recruited in Ontario. In Ontario, due to provincial pandemic restrictions which led to the longest lockdowns in the world [52], caregivers reported not being able to come to appointments and experiencing a lot of difficulty trying to visit their loved ones during hospital admission. Most older adults and their caregivers recruited in British Columbia did not describe being unable to bring their support person to the appointment with them or having their support person able to visit them in hospital when they were admitted.

Below is a description of the themes and their subthemes.

Theme 1: Alterations in the individual and dyadic cancer experience.

Within this theme we identified two subthemes: 1) Impact on social and emotional support and daily life; and 2) Impact on relationships/ interactions with the health care team.

Subtheme 1: Impact on social and emotional support and daily life. Patients experienced isolation from family and friends due to provincial stay-at-home orders and restricted visitation policies enacted in health care settings including cancer centres and physician’s offices. This caused significant negative impacts on patients’ social support systems. Although some patients attempted to communicate with family and friends using virtual methods, such as Zoom or Facetime calls, the experience proved difficult and ineffective for many.

For study participants, the traditional stressors expected during cancer treatment were compounded by the COVID-19 pandemic. Older adults with cancer on active treatment were asked to self-isolate to reduce the risk of infection. Older adults who lived alone and/or who were self-isolating from their family members indicated missing the emotional support necessary to effectively cope with their recent cancer diagnosis or treatment side-effects. Several of the older adults with children indicated they only saw their children who lived in the same house, and that they were unable to see the children who lived elsewhere. Patients described missing the support and connection their children provided because of the restrictions of the pandemic. Additionally, participants identified that the burden of care often fell on the child they lived with.

Although many patients and caregivers reported being able to cope with the restrictions caused by the pandemic, some expressed negative psychological consequences accompanying restricted visitation policies and stay-at-home orders. Many older adults and caregivers understood the need for the restrictions and were coping well with the restrictions and adapted to visiting in a garden/park with family members and friends, etc. Particularly during admission to hospital for surgery or treatment, it was difficult for caregivers to be restricted from visiting their loved ones. Furthermore, many caregivers described feeling worried about the quality of care provided to their loved ones admitted to hospital because patients were isolated in their rooms, staffing shortages, and some noticing delirium in their loved ones. However, the pandemic lockdowns made it more convenient for caregivers to provide care for their loved ones due to the ability to work from home. Due to pandemic restrictions, caregivers were required to provide care on behalf of health care professionals, such as participating in exercises, daily vital monitoring, etc. In addition, other family members and friends were unable to assist in providing support to the older adult due to social distancing leading to all the burden falling on the primary caregiver. Please see below for exemplar quotes.

Caregiver 14 (daughter): “I’m all stressed. And my mum has zero emotional support and it’s and it’s all because of COVID. And it’s terrible. And it, yes, it does affect our relationship because then when it resolves, she says to me, ‘I wanted a daughter. I need a daughter. I needed someone to hold my hand. I needed someone to hug me. I needed someone to tell me I was going to be OK and you didn’t do that for me. Why didn’t you do that for me? Why weren’t you there for me?”

Patient 1 (male): “Because I live alone and because my immunity was so bad and this was going for a year for me, I hardly see anybody and if I do see anybody… I did not see anyone in my house for 6 months. So, it’s pretty hard.”

Caregiver 3 (husband): “Obviously, it’s never as good as being there. From my perspective, I can do fine with this, I just feel bad for [patient’s name] in particular, because as she’s going into an appointment, especially if it’s for the first time, at the cancer clinic for example, I can’t imagine how intimidating that’s got to be, when you go in there and you don’t have anybody to be a second pair of ears. Because you can’t have a phone with the consultation the whole way along, and you don’t want to be that—I don’t know—you don’t want to be overbearing, but I just feel bad because [patient’s name] is not able to have whatever support I might be able to be. Even when, she mentioned having surgery, and I couldn’t go into the hospital with her, I couldn’t check-in with her. So, I think that’s a pretty—we understand the rationale, we don’t begrudge that, it’s just that it’s a terrible time to be sick and as sick as my wife has been.”

Subtheme 2: Impact on relationships/ interactions with the health care team. Participants felt that virtual visits (including telephone and video appointments) limited health care providers’ ability to comprehensively assess a patient’s current health status. Those who had a relationship with the oncology team prior to the pandemic or previous cancer treatment experiences were less likely to express concern about the absence of face-to-face appointments and reported that the pandemic had not impacted the relationship with their cancer treatment team, and they were generally satisfied with their cancer care. Older adults who were recently diagnosed for the first time with cancer who had never been treated prior to the pandemic, noted a lack of rapport with their health care provider due to a lack of face-to-face interactions and preferred to meet in person to receive the diagnosis to be able to develop a relationship with their oncology team but many were generally still satisfied with their cancer care. For some, the lack of face-to-face appointments led to gaps in information regarding treatment and recovery plans. The importance of the ability to have clear and consistent communication with the health care team was highlighted as a major concern by patients and caregivers alike. No patient or caregiver had requested changes to the cancer treatment plan due to fear of COVID-19. Please see below for exemplar quotes:

Patient 13 (female): “Many times a phone call is fine, but there are times that I think that I know, or [caregiver’s name] knows that I need to see the doctor and If it’s your own family doctor, I think most times in the old days, you could say ‘I need to see the doctor’ and the secretary would find a way. Nowadays, if you need to see the doctor, God help you. The doctor doesn’t know you and doesn’t know what you need and, uhm, it’s very difficult to be so estranged from your own doctor, and this doctor is very important now because I do have cancer and because it is COVID.”

Patient 2 (male): “I actually don’t mind virtual as much as I do face-to-face. Often trying to understand someone who wears mask is difficult for me because [of] hearing loss and I also have tinnitus. It’s very difficult to listen to somebody through the mask. So, I found the virtual is better for someone like that.”

Caregiver 14 (daughter) and Patient 13 (female): “So my mom and I are at home. She had the biopsy and a couple days later, we’re in the laundry room and the phone rings and the oncologist says, ‘Will you consent to talking on the phone?’ and my mom said yes and then she says, ‘Well, you have cancer,’ and she starts kind of talking in language that we didn’t really understand that and then she said, ‘I’ve already put in orders for you to have chemo next week and I can’t do surgery because normally I do,’—I don’t know what she said, 18 or whatever a week- and now they’ve been cut down to two and you’re not the highest priority, so [oncologist’s name] can’t offer surgery even though [oncologist’s name] normally would and [patient’s name] having chemo next week. That was it.”

Theme 2: Navigating health and cancer systems in flux of the COVID-19 pandemic.

Within this theme we identified three subthemes: 1) Accessibility; 2) Impact on cancer diagnosis and treatment experienced; and 3) Implications of organizational changes in providing cancer care services.

Subtheme 1: Accessibility. As a result of the pandemic, many healthcare providers and specialists switched to virtual care, thereby limiting their ability to perform comprehensive physical assessments. Some of the patients interviewed stated difficulty navigating the technology, such as smart phones or tablets necessary for these virtual visits or required increased practical support from their caregiver. In addition, transportation to and from cancer treatments became challenging for caregivers due to ‘no-visitor’ policies implemented by health care facilities to reduce the spread of infection. As many of the caregivers interviewed expressed, older adults often have sensory impairments and lower levels of health literacy that effects their ability to understand their health situation, which then places the burden on caregivers to make sound treatment decisions on behalf of their loved ones. Some caregivers expressed frustration about not being able to join their loved one during the consultations and felt there should be exceptions for older adults to have their support person with them at their appointments. However, most older adults with cancer indicated that the consultations without their caregiver were manageable. None of the caregivers were invited to join by phone by the healthcare teams during the consultation appointment, but a few caregivers ensured they joined the telephone visits. Please see below for exemplar quotes.

Caregiver 4 (wife): “So, this is why I want to go down with my husband, especially the first couple of times, so that I could hear what is being said, because you don’t remember—I don’t remember. It does help. I know they don’t want really extra people in the hospital right now, and he’s going down on Tuesday and [oncologist’s name] had said I don’t really need to come with him so I said, ‘Well, that’s fine,’ I know he’s going for some bloodwork, he’s going for the CT thing, and he can drive himself so he’ll be fine. But when he starts his radiation, I would like to maybe go at least maybe the first time, just to make sure he’s okay when it’s finished. He will be, but I’d just like to be there.”

Patient 3 (female): “I would say for someone who is alone, and again, more elderly, or maybe doesn’t understand English that well, or whatever the reason, they should have maybe a person that can help them plot out the calendar like I did, and as far as what is expected of me on this day and this day. Maybe if they could have even some volunteers help them do that—of course now with the pandemic you can’t do that.”

Patient 13 (female): “And it isn’t only the older adults who sometimes can’t deal with computers and deal with, uh, arranging appointments through computers. It’s just there should be somewhere that if you have a choice, either you use the portal, or you can phone such and such a number and make it make an appointment. It [should] be like that.”

Subtheme 2: Impact on cancer diagnosis and treatment experiences. Although many of the patients and caregivers interviewed stated no significant impact on their or their loved one’s treatment and none indicated that the treatment was reduced/shortened or otherwise modified due to COVID-19. However, some participants received their cancer diagnosis over the phone which they did not feel was the right way to receive a diagnosis, stressing the importance of face-to-face interactions with the healthcare team when discussing emotionally charged topics. Many participants reported that most had not explicitly discussed any changes to the treatment proposed to them because of the pandemic, and no patient had requested changes to their treatment out of fear of COVID-19. See below for exemplar quotes:

Patient 12 (male): “It was mainly about the surgeries, you know that the surgeries were cancelled, heart surgeries were cancelled and obviously I connected it a little bit and I was concerned that [my surgery] would be delayed.”

Patient 13 (female): “It’s very difficult to be a patient during COVID, and as I said, the other day to my kids that that if it wasn’t for COVID, I could fight cancer. Cancer isn’t as hard as the combination is [it’s] incredible. It it’s just impossible to deal with all the rules of COVID with mixed in with cancer and you have to follow the COVID rules. Never mind cancer. Your body tells you what cancer does to you, but… it’s just impossible and people ignore the COVID rules. But I can’t ’cause I’m too much in the medical system I have to abide by them and it’s very, very difficult.”

Subtheme 3: Implications of organizational changes in providing cancer care services. Most patients expressed feeling safe whilst attending their hospital appointments in-person as they felt the hospital staff was very cautious and provided instructions on how to stay safe such as using physical distancing, masking, handwashing, etc. Most patients had a combination of telephone appointments and in-person appointments, while very few had video visits. Few indicated that public health guidelines such as masking, and distancing were not followed in the cancer centre leading to frustration. Some noted that there was a level of uncertainty regarding future treatment delays, specifically surgery postponements, which ultimately led to worry and stress related to long-term cancer treatment outcomes such as survival. Others described feeling fortunate that they received timely treatments due to their own advocacy in tandem with their oncologist’s support. See below for exemplar quotes.

Patient 1 (male): “It’s uh, it’s much easier sitting at home talking to yourself, and trying then for… getting downtown…getting in the hospital and then getting there and having to get back home again. That’s 4 hours of your day and it’s uh… it may not be a pain if you’re only seeing the doctor once a year, but it’s uh you have a [diagnosis] like I have and you are seeing doctors more often, uh virtual and phone is very effective.”

Patient 11 (male): “Oh do you know what I felt? I felt very safe. It’s yeah, you know, I went to a number of hospitals before [hospital name] said, ‘your hospital is very safe.’ I didn’t worry at all.”

The patients that engaged with the media surrounding the pandemic found that the misinformation and contradictory information related to COVID-19 death rates—as well as ageism—caused stress and impacted their ability to understand their own health situation in the context of their current need for treatment. Patients’ and caregivers’ who wanted to be vaccinated were frustrated by the delayed and differing provincial vaccination program rollouts and dose availability. Surprisingly, most study participants did not recall partaking in a discussion regarding the COVID-19 vaccine with their oncology team.

Few patients had recommendations regarding what needed to be improved in care during the ongoing pandemic. Some caregivers suggested that cancer centres ensure the support system of newly diagnosed cancer patients have adequate information on the possible impact of COVID-19 on their loved one’s health and treatment. Another recommendation from caregivers was to ensure that older adults always have permission for their support system to join them for in-person appointments without the need to apply for special permission.