key: cord-0808652-il1g75n8
authors: Kilgour, Heather M.; Galica, Jacqueline; Oliffe, John L.; Haase, Kristen R.
title: The needs of older adult cancer survivors during COVID-19: Implications for oncology nursing
date: 2021-10-11
journal: Semin Oncol Nurs
DOI: 10.1016/j.soncn.2021.151229
sha: 875483b32946cc0417f82eaf806d959441188836
doc_id: 808652
cord_uid: il1g75n8

OBJECTIVES: Older adults living with cancer have been described as more susceptible to COVID-19 and in need of special attention during the COVID-19 pandemic. For cancer survivors, the first-year post-treatment is a critical time as many individuals transition back to their primary care provider and adjust to physical/psychosocial changes which occurred during their cancer treatment. In this longitudinal qualitative study, we followed a cohort of older adult cancer survivors through the first three waves of the pandemic to describe their experiences as a means for providing recommendations for how oncology nurses can tailor supports to this unique population. DATA SOURCES: We conducted individual, semi-structured qualitative interviews with 24 older adults at three time points during the pandemic. Data were analyzed drawing from interpretive descriptive methodologies. CONCLUSION: Older adult cancer survivors’ needs shifted during the pandemic from feeling confident and self-assured during the early days of COVID-19, to growing uncertainty and unease about their health and wellbeing. The main survivorship concerns included a preference for in-person appointments (as opposed to virtual), barriers to caregiver attendance at appointments, and diminished access to healthcare services. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses play a critical role providing care to older adult cancer survivors and are most familiar with unique patient needs and the gaps in services they face. We provide recommendations for oncology nursing practice which consider the shifting needs of older adult cancer survivors during COVID-19 and beyond.

The COVID-19 pandemic has had a profound and sustained impact on healthcare systems globally. Older adult cancer survivors are at increased risk of COVID-19 due to their immunocompromised status and advanced age. [1] [2] [3] [4] [5] Emerging evidence has demonstrated an increase in negative outcomes of COVID-19 for older adults with cancer, including hospitalization, intubation, and ICU admission, 1, 3, 4 and increased mortality. 1, 2 As older adults with cancer transition to survivorship, they face a number of challenges including physical, emotional, practical and health-related changes. 6 Numerous unmet needs have been identified, including the need for ongoing dialog with healthcare providers, access to survivorship services, and assistance with managing long-term cancer treatment side effects. 7 This period of transition has been further complicated by COVID-19 and its impact on healthcare systems and services. As cancer survivors navigate their post-treatment changes, they are concurrently facing adjustments to survivorship plans, the health risks of the pandemic, and the accompanying lockdowns and social distancing practices. 8 As the pandemic continues, disruptions in oncology care have emerged, including a shift to virtual appointments, delays in tests and surveillance scans and the postponement of treatments and/or surgeries. 3, 9 Previously identified survivorship concerns have been amplified during the pandemic, including fear of recurrence, anxiety, depression and loneliness. 8, 10 The impact of COVID-19 on mental health-related survivorship concerns warrants further exploration, particularly given the diminished access to mental health resources and geriatric assessment amid the COVID-19 pandemic. 11 As the pandemic persists, it is important to understand the emerging needs of older adults as they transition to the post-treatment phase of cancer survivorship and to explore the nursing role in supporting older adults during the pandemic.

Nurses have played, and continue to play a critical role in the COVID-19 pandemic. 12 The ubiquity of nursing roles across healthcare settings makes us ideally placed to provide information and care regarding virus containment, mitigation strategies, and treatments.

Oncology nurses provide a critical and adaptive role in the pandemic supporting patients with cancer through evolving uncertainties. 13 Indeed, nurses deliver essential symptom assessment, psychological support, patient education, and patient advocacy. 14-17 A recent collaborative position statement from international oncology nursing groups 18 highlights the unique needs of older adults with cancer, emphasizing the importance of specialized oncology nursing care for this patient population. The position statement 18 recognizes the role of oncology nurses in advocating for the specific needs of older adults with cancer, providing patient and familymember education, recognizing age-related issues and supporting older adults during and after their cancer treatments. 18 Oncology nurses are well-positioned to utilize these skills to address the needs of older adult cancer survivors as they transition to a post-treatment life during the pandemic. In this article, we explore the unmet needs of older adult cancer survivors and discuss implications for oncology nursing practice.

In this longitudinal qualitative study, we followed a cohort of older (>60 years) adult cancer survivors through three waves of the pandemic (July/August 2020, January/February 2021 and March 2021). In this article, we describe the shifting needs of older adult cancer survivors across the pandemic and provide recommendations for how oncology nurses can tailor nursing care and support to this unique population.

We conducted an interpretive descriptive 19 longitudinal qualitative study with a Canadian sample of older adult cancer survivors. An interpretive descriptive approach is congruent with the approach of our research team, which brings together oncology research experience grounded in clinical nursing and is practically oriented to the needs of older adult cancer survivors and the implications for nursing care. Through the present analysis, we sought to understand the needs and experiences of older adult cancer survivors across COVID-19 and ground these findings in oncology nursing practice, consistent with an interpretive descriptive approach. 19 Sample, setting, and procedures.

Following ethics approval (H20-03822), we recruited individuals recently discharged from the Cancer Centre of Southeastern Ontario in Kingston, Ontario, Canada through a research database, a process described elsewhere. 20 In Southeastern Ontario, a lockdown occurred in March, 2020, during which in-person healthcare appointments ceased and public health safety measures were implemented. Three authors (JG, HK, KH) completed telephone interviews with participants at three time points during the pandemic. Interviews lasted approximately 45 minutes, were audio recorded and transcribed verbatim by a professional transcription agency. The first round of interviews took place in July and August 2020 or wave one of the pandemic. The second round of interviews took place during January and February of 2021, and the final set of interviews took place during March 2021. During the third interview, we used an infographic of the preliminary study findings created with the assistance of a plain language editor. We used the infographic to discuss our interpretation of results from the first two data collection time points and elicit further perspectives. Interview questions touched on a range of topics including cancer-related concerns, coping, health challenges, and changes to healthcare appointment delivery. In this article, we focus on the cancer and health service delivery-related data and findings (see Table 1 for example questions across the three interviews).

We used an interpretive thematic analysis approach, looking for patterns and meanings in the data. 19, 21 Data was organized using NVivo 1.3 software. Two authors (HK, KH) engaged in the data analysis process working together on analysis by first reading and re-reading the transcripts and then inductively deriving a coding structure. Once we agreed on the overall structure and labels of the codes, we collectively coded the remaining transcripts using this coding structure. We discussed the emerging coding structure with the team and, leading up to the third set of interviews, met as a team to discuss the preliminary themes to date and define additional areas to probe in the final interviews. The analyses continued across the three data collection time points with the goal of distilling what prevailed as participant experiences, and accounting for variations on those predominant perspectives. We presented our study findings at virtual supportive care rounds at a local cancer centre to get feedback and consult stakeholders (oncologists, oncology nurses, patients, etc.) regarding the interpretation and clinical relevance. This final step is congruent with an interpretive descriptive approach by ensuring that findings are practical and have clinical relevance. 19

We used several strategies to ensure our study was conducted rigorously and aligned with an interpretive descriptive approach. 19 We sought epistemological integrity and analytic logic through coherence in the research questions, methods, and analyses. We involved team members at multiple points in the analysis and shared our preliminary findings with participants and stakeholders to achieve interpretive authority. Finally, we limited our claims and interpretations to the data we collected and noted the strengths and limitations of such methods in the limitations section.

Older adult cancer survivors participated in this study at three time points during the pandemic: during wave one (n=24), wave two (n=18), and prior to vaccination/wave three (n=18). Six participants were lost to follow-up after wave one. Information within this paragraph describes the demographic and clinical information of participants who completed the first interview. Ages ranged from 63 to 83 years old (M=71.5; SD=5.7) and slightly more female (n=14, 58.3%) participants. All participants had been discharged from cancer care within the last 12 months and had been diagnosed with breast (n=12, 50%) or colorectal cancer (n=12, 50%). All participants had received their last treatment 1-41 months prior to interview one, with a mean time since last treatment of 19.4 months (SD=10.1). Most participants had received chemotherapy (n=23, 95.8%), and some received radiation (n=13, 54.1%) and/or other cancer treatments (n=6, 25%) such as targeted therapy, immunotherapy or surgery. Further demographic and clinical information are provided in Table 2 .

Across the pandemic, older adult cancer survivor's needs evolved from remaining positive and connected, to increasing distress related to the persistence of the pandemic.

Colder weather, shorter days and increased restrictions contributed to feelings of isolation, impacting older adult's wellbeing. Throughout the interviews, we noted survivorship concerns related to virtual appointments, caregiver support, and a pressure to stay healthy given the restraints on healthcare services. We organized these concerns into the following themes: (1) Concerns about virtual versus in-person appointments; (2) Barriers to caregiver attendance at appointments; and (3) Impediments to accessing healthcare services.

Throughout the pandemic, there was a shift from in-person to virtual or telephone appointments. In the region where this study took place, in-person appointments ceased during the initial lockdown in March of 2020, as noted in the methods section. Although older adults described understanding why this transition occurred (i.e., reduce risk of COVID-19 exposure), many expressed a preference for in-person appointments. Participants described in-person appointments as more comforting when compared to virtual appointments. One participant explained: "it's just reassuring to see them in person, to see their face, to watch their nonverbal. You know what I mean? It's just nicer". Beyond the non-verbal cues of their physician or nurses, older adults described the importance of their healthcare team being able to examine them and note any physical changes. One participant shared a story describing how prior to the pandemic her oncologist was able to see her in person, identify that she was unwell through visualizing physical changes and send her for follow-up tests. This participant worried her complication may have gone undiagnosed if the appointment was virtual, explaining, "there

[was] something wrong and she [oncologist] knew right away that there was a problem. But had that been a phone-call, I don't think she'd have ever diagnosed it."

Older adults described barriers to virtual appointments, including difficulty hearing over the phone, appointments feeling more abrupt or rushed, and feeling less connected to their healthcare team. One participant explained that their virtual appointments tended to be with residents or medical students, stating, "I've had three appointments in the pandemic, and I haven't spoken to my actual staff person yet." There was concern that telephone appointments (which were the predominant method of virtual consult) did not allow the clinician to fully see the patient.

Older adult cancer survivors noted some benefits to virtual appointments, describing less time spent in waiting rooms and time saved by not having to travel. Despite this, most participants described their continued preference for in-person appointments. For example, one participant shared, "well, all my appointments were across the phone… I don't think they're as good as the in-person ones. I guess it saved us a lot of trips because… well, if I go to appointments, half a day is shot by the time we drive there and back…, but I would sooner have the in-person appointments when you're only having them every six months or so anyways." As the pandemic wore on, we noted that in subsequent interviews with participants during the second and third interviews, there was growing reluctance about virtual care. Many participants had put off appointments hoping they would be able to attend in-person; however, with the continued lockdowns they were still unable to see their clinician in person.

As strict visitation restrictions remained throughout the pandemic, many participants expressed concern that family members or friends were not able to attend appointments. This concern was multi-faceted, affecting not only the nature of their appointments, but also creating worry for their family members waiting outside the cancer center. One participant described how their spouse had to wait three and a half hours in a cold car during one of their appointments (in the middle of a Canadian winter). Another discussed how they worried about their partner not having access to a restroom while they were waiting outside the cancer center. When discussing the main change to healthcare during the COVID-19 pandemic, this same participant shared, "well, the main difference, the main problem is the fact that she can't come in with me", explaining, "we do everything together".

Participants discussed how attending appointments alone resulted in them having less access to information about their treatment plan. This was in part due to having only one set of ears listening to information shared during the appointment, and in part due to not having as many people to ask questions of clinicians. As the pandemic persisted and the accompanying visitation restrictions remained, strategies to overcome attending appointments alone were explored. One participant described how they had initially attempted to record their appointments with their oncologist, however, noted this was challenging and that they "haven't been doing that lately." One participant found a successful strategy, explaining "what I started to do was I made a list of questions myself. So, when I went in… I didn't forget any questions I would jot down the answers. So, when I couldn't take anybody that was fine."

Older adult cancer survivors expressed concern over access to health services during the COVID-19 pandemic. This included both cancer services and other health-related services. One participant described how they had hired a caregiver to come into their home prior to the pandemic; however, the caregiver resigned due to fear of contracting COVID-19. When asked about their biggest concern moving forward, this participant described how they worried that the persistence of the pandemic was going to make getting home help more difficult. Another older adult worried about services closing and asked her physician if their office would be closing upon hearing that the local hospital was admitting COVID-19 patients.

Many participants described delays to their cancer care follow-up visits, including deferred appointments and scans. One participant explained, "it's a little disappointing because the COVID-19 has really backed up any type of appointment you can get. And you know it's gone from a couple weeks to three or four months for things." This created confusion for some participants regarding their survivorship care plan. After sharing that their appointments have "been put on hold since the pandemic," one participant explained "they want you to do these

Older adults expressed a desire to 'stay healthy' so as not to place additional pressure on the healthcare system. One participant felt this was their moral duty, expressing "with the systems and the pressure on the system right now, I want to do everything I can to stay as healthy as I can. Mentally and physically." They went on to say, "the whole social structure is under pressure, so the less you have to rely on other people or other services the better off you'll be, I think." Some participants described avoiding accessing services throughout the pandemic.

minor compared to what they're really dealing with." A second participant described that because healthcare providers "don't want you in there", they had been spending more time searching the Internet and 'googling' health concerns and attempting not to call. Another participant shared they have been putting off discussing a medication concern with their oncologist throughout the pandemic so as not to be bothersome. 

In this article, we explored older adult cancer survivor's cancer-related needs across three time points during the COVID-19 pandemic. Our key findings relate to the impact of virtual appointments, barriers to caregiver attendance at appointments, and impediments to accessing healthcare services across the pandemic. Although research preceding the pandemic describes the concerns of older adults related to virtual care 22, 23 and access to health services, [24] [25] [26] our findings highlight these amplified concerns during the pandemic.

Within our study, older adults described that the majority of survivorship appointments have been conducted virtually during the pandemic. This trend has been documented globally, 27, 28 with a recent Canadian study reporting an increase in virtual appointments from 1.6% pre-pandemic to 70.6% during the pandemic. 29 This study further describes that older adults increased their virtual care use at similar rates as other age groups (e.g., young adults). 29 Despite the frequency of virtual appointments, participants in the current study expressed a strong preference for in-person appointments. Indeed, participants shared what they perceived as barriers to virtual appointments including difficulty hearing, appointments feeling rushed and less reassuring, and concerns over healthcare providers not physically seeing and examining them. As the rapid transition to telehealth occurred, little attention was paid to supporting older adults in this abrupt transition, despite their distinct 'double vulnerability'. A recent study exploring technology use in older adults during the pandemic described barriers such as lack of access to technology, lack of interest, and physical barriers caused by chronic disease or illness. 30 As recommendations to maintain virtual healthcare post-pandemic emerge, and older adults are forced to embrace technology, considerations to support older adults transition must be thoughtfully considered. Our study findings lend important information to older adult challenges for virtual appointments and highlight opportunities to optimize the experiences of older adults using telehealth services beyond the pandemic to ensure that they are not 'left behind' in the move to virtual care. Moreover, given the preference for in-person consultations amongst participants in the current study cautions emerge to ensure budget efficiencies and convenience don't drive virtual appointments to entirely erode in-person options.

Across the pandemic, participants described concerns related to caregivers being unable to attend in-person appointments. The main concerns included less access to information during appointments without a support person present to both listen to the healthcare team, and to ask questions. Furthermore, some participants referenced difficulty with memory, hearing, and cognition when describing the importance of having caregivers in attendance. This may have important implications, as older adults may not have access to the same information as when their caregiver was in attendance. Caregivers play an important role in providing emotional support to patients, assisting with activities of daily living, and advocating on behalf of their loved ones. 31, 32 If caregivers are unable to attend appointments, this important role may be diminished, preventing patient advocacy and access to information. As our findings suggest, consideration must be made to involve caregivers in cancer survivor follow-up appointments whether virtual or in-person. In particular, patients should be encouraged to include a partner/friend in virtual consults to reduce these barriers to care.

Participants described a pressure to 'stay healthy' during the pandemic, so as not to burden the healthcare system. Older adults discussed how they were putting off discussing healthcare concerns with their oncologist and were attempting to manage concerns independently through means such as 'googling' healthcare concerns. This has important implications for cancer care moving forward as there may be sub-optimal outcomes for cancer survivors, due to delaying or concealing concerns during the pandemic. Delays in cancer screening, oncology visits, treatments and surgeries have already been reported in the pandemic literature across the cancer continuum. 33, 34 Ensuring cancer survivors have adequate opportunities to bring survivorship concerns forward must be a priority of healthcare providers.

Furthermore, nurses must support effective self-management strategies through a collaborative care model to avoid older adults self-triaging out of the supports they need.

Within our study, participants described an amplified fear of recurrence during the COVID-19 pandemic. Older adults described concern that cancer care would not be prioritized, and worried that services would be unavailable during the pandemic. This fear of recurrence is consistent with other COVID-19 related research in cancer survivors. 8, 10 This is particularly concerning given the lack of access to healthcare-related resources during the pandemic, particularly mental health services. 11 Oncology nurses are ideally positioned to address these increased fears and provide support to older adults during this challenging time. In particular, self-management skills and mindfulness should be taught routinely to reduce patient anxiety and promote self-health.

There are several limitations to this study alongside notable strengths. First, mostly Caucasian and well-educated older adults participated in this study which limits the diversity of perspectives represented in our findings. Second, interviews were conducted via telephone, and therefore we were unable to capture visual cues, facial expressions and body language. An important strength of our study is the repeated engagement with participants which allowed us to develop rapport with participants, enabling older adults to share their experiences openly, and for us to understand what prevailed as their experiences and challenges over time.

Oncology nurses play a critical role in caring for older adults with cancer, highlighted by a recent position statement on the need to optimize oncology nursing to address barriers to care. 35 Understanding the cancer-related needs of older adult cancer survivors is an important step to providing tailored nursing care in the COVID-19 pandemic context and beyond.

Throughout the pandemic, many healthcare services have shifted towards a virtual format. Older adult cancer survivors have been clear: they have a preference for in-person appointments. Going forward, oncology nurses should consider patient preference and discuss with patients what would work best for them while ensuring public health guidelines are followed. Should virtual medicine grow exponentially post pandemic, oncology nurses can support older adults during this transition towards virtual healthcare. As is described in a recent position statement on care of older adults with cancer 18 nurses can assess the unique patient challenges to engaging with technology and act as a resource to support patients through this challenging transition. Additionally, nursing informatics may take a lead in this transition, ensuring the useability and acceptability of these virtual formats.

Older adults also noted a number of challenges to attending appointments alone including having less access to information, and diminished support to ask questions during appointments. Nurses can emphasize caregiver and family involvement during appointments, should this be the patient's wish. Strategies to overcome these barriers may include phoning family members during in-person appointments, providing family members with written information, and/or encouraging family members to write a list of questions for the patient to bring. These strategies could become a regular part of appointments given that caregivers of older adults may also be older and experience similar barriers.

The purpose of this article was to explore older adult cancer survivor's healthcarerelated concerns throughout the COVID-19 pandemic. Older adult cancer survivors discussed their experiences with virtual appointments and expressed a preference for in-person appointments. Participants understood why caregivers could not attend appointments; however, they also discussed the resultant barriers such as accessing information. Older adults described a pressure to 'stay healthy' throughout the pandemic and disclosed avoiding seeing their healthcare provider so as not to burden the healthcare system. Our findings provide important insight to the unmet needs of older adult cancer survivors during the pandemic.

Knowledge of these unmet needs can guide oncology nurses as they provide support to this patient population. Future research should explore specific strategies for nurses to support older adults in the transition to virtual healthcare. Older adults were provided with key findings from interviews 1 & 2:

Older adults told us they were concerned that (a) their caregivers could not go with them to in-person appointments, (b) they had less support managing survivorship concerns, and (c) that their cancer might recur.

They had mixed opinions about virtual appointments. Some liked not having to travel to in-person appointments in winter.

We then asked reflective questions:

What do you think of these findings?

What doesn't make sense/resonate with you?

Which of these findings resonates most with you? 

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We would like to thank the older adult cancer survivors for engaging in such meaningful dialogue with us and for sharing their thoughts and experiences across the COVID-19 pandemic.

This work has been supported by a Queen's University SARS CoV-2/COVID-19 grant, and the University of British Columbia Hampton New Faculty Fund. JO is supported by a Tier I Canada Research Chair in men's health promotion.

The authors disclose that they have no known competing financial interests or personal relationships that could have influenced the work reported in this article.