Abstract
Background/Objective:
Patients with cancer and multiple chronic conditions (“complex cancer survivors”) are among those most vulnerable to the negative impacts of COVID-19. Their experiences and coping strategies during the pandemic are largely unknown.
Methods:
Participants (n =97) were from a larger cohort of complex cancer survivors from a pragmatic trial in a safety-net health system. A mixed-methods design assessed coping, religiosity/spirituality, and protective responses to minimize COVID-19 infections.
Findings:
Participants had high adherence to protective recommendations and risk assessments were appraised based on comorbidities, not cancer status. The majority did not experience significant disruptions in cancer-related (67%) or primary health care (69%) but experienced pandemic-related emotional stressors. Participants managed impact and psychological distress of the pandemic through (1) reliance on their spirituality; (2) support from social networks; and (3) applying coping lessons from their cancer experience.
Implications for Nursing:
Spirituality, family connections, and previous illness coping strategies were crucial to buffer and navigate the negative impacts of the pandemic. Care can be improved by assessing the presence of factors that bolster coping approaches. Interventions that draw on the cancer experience, spirituality, and social networks can augment coping during emotional stressors like the pandemic.
Keywords: COVID-19, complex cancer survivors, coping, spirituality, resilience
Introduction
Racial/ethnic and low-income individuals have a higher risk of contracting COVID-19 and worse outcomes due to comorbidities (Dorn et al., 2020; Wang & Tang, 2020; Yancy, 2020). For medically marginalized and historically underserved groups, the impact of COVID-19 has been devastating (Agyemang et al., 2021; Boserup et al., 2020; Khanijahani et al., 2021; Louis-Jean et al., 2020). Data on over 18 million cancer survivors (Society, 2022) are emerging. Survivors are at greater risk of COVID-19 infection and complications due to immunosuppression and comorbidities(Desai et al., 2021; Kuderer et al., 2020; Ozer et al., 2021). Literature on pandemic effects on patients out of active treatment and cancer-free is sparse (Nekhlyudov et al., 2020).
This study explored the impact of the COVID-19 pandemic on cancer survivors with high clinical risk exacerbated by multiple chronic conditions, who are predominantly racial/ethnic minorities, uninsured, and served by a safety-net health system. We aimed to understand patient experiences, factors influencing health and wellbeing, support needs, and coping strategies to highlight opportunities for care support.
Methods
Sample.
Our sample of complex survivors from cancer defined as those with at least one chronic condition, low-income, under- or un-insured, and served by a county safety-net health system was derived from Project CONNECT(Lee et al., 2018), a pragmatic trial to improve care coordination for breast and colorectal cancer patients (stages I-III) with underlying chronic conditions receiving care at Parkland Health (Parkland) – the integrated safety-net health system in Dallas, Texas. Parkland cares for a disproportionate share of residents who are racial/ethnic minority and low-income cancer patients, of whom 72% are racial/ethnic minorities, 70% are under- or uninsured, and more than 60% have three or more chronic conditions requiring coordinated care.
Design.
Our mixed-methods approach included a cross-sectional survey and qualitative interview via telephone offered in English and Spanish focused on: (1) depression, perceived benefits, functional social support, and pandemic-related stress; (2) faith-based or religious practice and access during the pandemic; (3) pandemic protective actions (Appendix A). The parent study provided demographic characteristics for our sample. Institutional Review Board approval was received from UT Southwestern Medical Center and Parkland.
Data Collection.
Complex survivors participating in Project CONNECT were mailed invitation letters then a phone call soliciting informed consent to participate. Gift cards were provided for survey ($20) and interview ($40) completion. Recorded interviews (25 −50 mins) from February 2021-August 2021 were conducted in English and Spanish by trained staff.
Analyses.
Professionally transcribed and de-identified interview transcripts were analyzed by two team members in Nvivo 12.0 (QSR International, AUS) using thematic analysis(Braun and Clark, 2006). Spanish interviews were transcribed into English. The team independently and iteratively reviewed each transcript coding, resolved any discrepancies by consensus, and modified the codebook based on emergent themes(Crabtree BF, 1999). Analysts discussed themes with a third member and determined “saturation” (Morse, 1995). Survey data were analyzed using RStudio version 4.2.2. Descriptive summary statistics, including frequencies, means, and standard deviations were calculated to describe demographic characteristics of survey and interview participants. Survey and interview data were collected in parallel, analyzed separately, then merged to augment the interpretation of the findings (Creswell et al, 2018).
Results
Sample Characteristics
The sample included 97 patients (85 completed a survey and 32 completed an interview). Table 1 presents demographic characteristics.
Table 1.
Sample Demographics
| Demographics, N (%) | Total Unique Participants1 (N=97) | Survey Participants (N=85) | Interview Participants (N=32) |
|---|---|---|---|
|
| |||
| Age (years), mean (sd, range) | N/A | 57.5 (8.3, 41–83) | 60.8 (9.2, 41–83) |
|
| |||
| Sex | |||
| Male | 16 (16.5) | 14 (16.5) | 8 (25.0) |
| Female | 81 (83.5) | 71 (83.5) | 24 (75.0) |
|
| |||
| Cancer Type | |||
| Breast | 72 (74.2) | 63 (74.1) | 21 (65.6) |
| Colorectal | 25 (25.8) | 22 (25.9) | 11 (34.4) |
|
| |||
| Race | |||
| Black | 30 (30.9) | 24 (28.2) | 15 (46.9) |
| White | 65 (67.0) | 60 (70.6) | 16 (50.0) |
| Asian | 1 (1.0) | 0 (0.0) | 1 (3.1) |
| Unknown | 1 (1.0) | 1 (1.2) | 0 (0.0) |
|
| |||
| Ethnicity | |||
| Non-Hispanic | 52 (53.6) | 37 (43.5) | 18 (56.3) |
| Hispanic | 44 (45.4) | 47 (55.3) | 14 (43.8) |
| Unknown | 1 (1.0) | 1 (1.2) | 0 (0.0) |
Patients were invited to participate in an interview, survey, or both. Unique Participants represents the unique number of patients participating in any data collection. 20 participants completed both a survey and interview.
Pandemic Response.
Participants adhered to protective recommendations (Table 2). Because of their comorbidities, it was imperative to avoid getting COVID-19. All wore masks; many had family and friends deliver groceries, purposefully isolated, and got vaccinated. Reasons for social distancing included: perceived risk of getting and spreading COVID-19, compliance with protective policies, and recommendations from pastors and healthcare providers. When restrictions eased, prioritizing food shopping and medical appointments continued.
Table 2.
Protective Measures Taken and Health Care Impact During COVID-19 Pandemic (N=85)
| Behavior | N (%) |
|---|---|
|
| |
| Avoiding public or crowded places | 79 (92.9) |
| Avoiding or canceling travel outside of Texas | 65 (76.5) |
| Avoiding or canceling local travel | 64 (75.3) |
| Avoiding some or all restaurants | 66 (77.6) |
| Avoiding places of worship | 70 (82.4) |
| Canceling or postponing social, religious, or recreational activities | 70 (82.4) |
| Canceling outside housekeepers or caregivers | 19 (22.4) |
| Canceling or postponing school activities | 34 (40.0) |
| Canceling or postponing work activities | 39 (45.9) |
| More cleaning in your home than usual | 75 (88.2) |
| Disinfecting or wiping down groceries or packages entering your home | 63 (74.1) |
| Disinfecting or wiping down mail or packages | 47 (55.3) |
| More disinfecting surfaces in your household than usual | 76 (89.4) |
| Keeping six feet distance from those outside of your household | 83 (97.6) |
| Stocking up on food and supplies | 54 (63.5) |
| More use of hand sanitizer than usual | 78 (91.8) |
| More handwashing than usual | 76 (89.4) |
| Provided homeschooling due to the coronavirus | 30 (35.3) |
| Wearing a mask when out in public | 85 (100) |
| Staying home because you felt unwell | 52 (61.2) |
| Studying at home | 21 (24.7) |
| ordering take out from restaurants | 34 (40.0) |
| Working from home | 15 (17.6) |
| Avoiding contact with high-risk people | 77 (90.6) |
| Health Care Impact of COVID-19 | |
| Cancer care or follow-up interrupted or delayed | 28 (32.9) |
| Received enough information on prevention, protection or care for the coronavirus from cancer care team | 70 (82.4) |
| Cancer care team has taken the needed measures to address the coronavirus | 76 (89.4) |
| Primary care/family doctor interrupted or delayed | 31 (36.5) |
| Received enough information on prevention, protection or care for the coronavirus from PCP/family doctor | 65 (76.5) |
Health Care Management.
Care delivery was generally uninterrupted. Only 33% and 37% of survey participants had interruptions/delays in cancer care or primary care, respectively (Table 2). Few participants missed appointments due to “anxiety” or discomfort regarding potential exposure at a medical visit.
Religion/spirituality
Engagement in religious activities.
Isolation from and disruption of social networks – particularly faith communities was widespread. Most participants adjusted to virtual worship. Many survey participants (82%) avoided places of worship, 21% continued in-person services, 26% switched to online services/prayer groups or drive-in services, and 35% did not participate. Those who dropped attendance preferred in-person to online worship.
Faith, fear, and psychological distress.
Participants’ faith helped them deal with fears, pandemic unknowns, and manage anxiety. Isolation, social distancing, financial, and other pandemic concerns created and exacerbated existing anxiety and depression. Participants relied on God and prayer instead of seeking professional help.
Faith as meaning making.
Participants faith helped them make sense of unknowns and accept pandemic hardships/losses. Belief in God being “in charge” buffered pessimism when others proclaimed worse case scenarios. Recalling the importance of faith during cancer helped participants frame the pandemic as God’s will.
Social networks.
Isolation from social networks was difficult. Survey participants were concerned about infecting others (52%) or worried about family/friends getting infected or dying (73%) (Table 3). Interview participants gained a greater appreciation for family and friends. Connecting virtually with social networks was essential for mental health, with increased frequency in some cases. For some, financial support from family relieved financial shortfalls.
Table 3.
Feelings during the COVID-19 Pandemic
| Feeling, N (%) | Strongly Disagree/Disagree | Neither Agree or Disagree | Strongly Agree/Agree |
|---|---|---|---|
| I fear how the coronavirus will impact my cancer care or recovery. | 31 (36.5) | 6 (7.1) | 48 (56.5) |
| I am concerned that cancer puts me at greater risk for being infected or dying from the coronavirus. | 30 (35.3) | 3 (3.5) | 52 (61.2) |
| I have had trouble concentrating. | 51 (60) | 2 (2.4) | 32 (37.6) |
| I feel I have no control over how the coronavirus will impact my life. | 31 (36.5) | 1 (1.2) | 53 (62.4) |
| I worry about the possibility of dying from the coronavirus. | 36 (42.4) | 3 (3.5) | 46 (54.1) |
| I have had changes in my eating. | 47 (55.3) | 1 (1.2) | 37 (43.5) |
| I am concerned about a family member or close friend getting or dying from the coronavirus. | 23 (27.1) | 0 (0.0) | 62 (72.9) |
| I feel negative and/or anxious about the future. | 58 (68.2) | 3 (3.5) | 24 (28.2) |
| I feel anxious about getting the coronavirus or about becoming ill. | 38 (44.7) | 1 (1.2) | 46 (54.1) |
| I worry about possibly infecting others. | 40 (47.1) | 1 (1.2) | 44 (51.8) |
| I have had feelings of social isolation or loneliness. | 52 (61.2) | 2 (2.4) | 31 (36.5) |
| I have had feelings of sadness or depression. | 47 (55.3) | 2 (2.4) | 36 (42.4) |
| I have had changes in my sleep. | 47 (55.3) | 1 (1.2) | 37 (43.5) |
Coping and mental health.
Survey participants (42%) felt sad or depressed at pandemic onset. Interview participants discussed symptoms of loneliness, sleeplessness, migraines, panic attacks, elevated blood pressure, worrying, stress, and low energy. Reasons included isolation from social networks, fear of contracting COVID-19, mask wearing, and pre-existing mental health issues. As complex survivors, COVID-19 compounded ongoing anxieties. Although participants recalled mental health symptoms, many avoided mental health labels or downplayed the severity. Those who acknowledged issues rarely sought professional help. Many coped through trust in God, prayer, and self-help methods including exercise, positive thinking, meditation, or restarted smoking.
Cancer history informs coping.
Most participants were two or more years post-treatment and did not consider themselves actively dealing with cancer beyond routine surveillance. Thus, cancer history was not foremost. Instead, personal resiliency and lessons learned from surviving cancer were attributed to their capacity to cope. Lessons included appreciating life during crisis, taking each day as it comes, and dealing with loss.
Discussion
We found participants less familiar with survivorship as an ongoing medical concern requiring surveillance and monitoring for late effects. Rather, having completed a period of active cancer management, participants perceived their capacity to contend with COVID-19 in terms of individual resilience, both instrumental and psychosocial. Few who considered themselves immunocompromised deemed themselves at greater risk for COVID-19. This is consistent with others (Papautsky & Hamlish, 2021), who found survivors in active cancer treatments more worried about their cancer, general health, and getting COVID-19. Similarly, perceived general vulnerability rather than cancer survivor-specific vulnerability to COVID-19 predicted greater adherence to COVID prevention behaviors (Slivjak et al., 2021). This may be due to survivors’ uncertainty about their objective risk from COVID-19 because of their cancer history(Slivjak et al., 2021). A cancer diagnosis is thought of as a “teachable moment”(Demark-Wahnefried et al., 2005) pivotal to steering survivors to make health improvements. However, our findings suggest greater awareness about post-treatment cancer survivorship (e.g., treatment late effects) may be needed. Our participants understood cancer as an acute condition because they were no longer in active treatment, in contrast to their chronic conditions that continued to be monitored and treated.
Resilience factors(Kalisch et al., 2017) when facing stress or adversity include spirituality and social support that mitigate challenges(Hamilton, 2021). Spirituality (Reed, 1992), is critical to psychological wellbeing and resilience in minority cancer patients (Holt et al., 2009) and a vital coping strategy. Like others (Hamilton et al., 2022), our participants discussed relying on faith to endure/buffer pandemic stress and social isolation. Religious actions influence health-seeking behaviors through cognitive reframing (Grossoehme et al., 2012). Such findings have informed recommendations that healthcare practitioners assess spirituality as potential means of coping among survivors (Grossoehme et al., 2012).
Social support is critical for coping with stressors. The pandemic fractured social connections which affected participants’ mental health. Studies showed cancer survivors faced increased loneliness and worsened depression, anxiety, and stress during the pandemic compared to family and general population (Han et al., 2021; Schellekens & van der Lee, 2020; Swainston et al., 2020).
Nursing Implications
Our data supports an assets-based approach that leverages coping and resilience strategies during crises (Hamilton et al., 2015; Hill, 1997) while recognizing and attending to needs/deficits. Spirituality and social support are integral to understanding cancer care delivery to address social determinants of health (Hamilton, 2021). Our findings underscore the significance of spirituality and social support in shaping approaches to surveillance and survivorship care.
Limitation
For most of our participants, transition to surveillance could account for the absence of provider-initiated discussions of elevated risk. However, we did not collect providers’ perspectives to confirm the nature of their communications about COVID-19.
Conclusion
Safety-net patients may not recognize implications of their cancer history on subsequent healthcare or future risk of illness. Interventions should be nuanced in how “cancer survivorship” messages are framed. Leveraging asset-based approaches may be more salient to communities in safety-net systems.
Supplementary Material
Table 4.
Qualitative themes and example quotes
| Themes | Sub-theme | Example Quote (s) |
|---|---|---|
| Response to the pandemic | Protective measures | |
| Compliance |
I try to stay at home and … hey they tell you on the news to stay away from people and that’s what I do. [62-year-old, Black, non-Hispanic, female, breast cancer] I pretty much just stay in the house. I don’t go anywhere besides to the store and back, you know. [59- year-old; Black, Hispanic, female, breast cancer] …Because I got my shot, because of the vaccine, now I feel better being around my family.When I do get outside, I still wear my mask and all that… [58-year-old, Black, Non-Hispanic Female, colorectal cancer] |
|
| Complications of comorbidities |
Well, I tell you, I’m scared to get it [COVID-19], because I know if I get it, I’m not going to make it, because I have high blood pressure, and I’ve got heart disease, Parkinson’s, and now a diabetic, and then with the medication. So, it’s pretty hard for me. [62-year-old, White Hispanic male, colorectal cancer]
I’m not trying to get sick because my immune system is weak. And, like I said, I don’t know if a person has been vaccinated or not, you know? So, I don’t want to take that chance. That’s why I keep my distance. Social distancing. I don’t like crowds at all so, I’m pretty much just practicing to be safe. [59-year-old, Non-Hispanic Black female, breast cancer] I wear my mask everywhere I go because I am a breast cancer survivor and I’m not taking any chances on trying to get sick. [58-year-old, Non-Hispanic Black female, breast cancer] |
|
| Health Care Management | Access | |
| Health care system-level | The doctors have called and changed some things, but it wasn’t on my account. It was because the pandemic was running rampant last year, so they changed a few of my appointments for later in the year and so, other than that, that’s it. This year it’s been back on point, so everything is going well right now. [65-year-old, Black, non-Hispanic female, breast cancer] | |
| Individual-level | I just didn’t feel comfortable going in. I don’t know, that’s probably irrational; I’m not sure. But I didn’t feel safe going in, even though it’s a doctor’s office. [62-year-old, Non-Hispanic Black female, breast cancer] | |
| Religion and Spirituality | Coping Strategies | |
| Religious engagement | I don’t have to go out and put myself at risk. So, the positive thing about it is I’m able to go to church, you know, online instead of in person because there are some other church members that contracted the coronavirus, and so the positive thing is I’m still able to attend church, but I can do it virtually. [62-year-old, Black, Non-Hispanic female with breast cancer]. | |
| …basically, for me… it brought [me] closer, you know, my faith in God… that’s one of the things that helped- my family here helped us through this. There’s not much I could do about circumstances, but there’s a lot I can do about myself, and so I draw closer to God, and my faith helped me and my family. Of course, you tend to appreciate the things that are of value during these things of crisis in your life. It’s like you refocus on what’s- what really matters and stuff in life, so my experience with God matters and my relationship with my family…[62-year-old, White, Hispanic male, colorectal cancer] | ||
| Distress and fear management |
I’ve got great faith in a great God, and therefore, I don’t really have the worries. Life has been a journey and a lesson that I learn every time something bad or good comes along, so I just take it as it is. [62-year-old, White, Non-Hispanic female, breast cancer]
I didn’t talk to no doctor for it [her depression]. I just got on my knees and started praying to God…you know, Lord help me through this. [58-year-old, Black, Non-Hispanic female, breast cancer] …We’ve been locked up for a long time, and in order not to be stressed, sometimes I go to mass so that I can continue better and forget this pandemic a little bit. [62-year-old, White, Non-Hispanic female, breast cancer] |
|
| Meaning making |
When they get negative, I say, “I’m sorry, but this is the way it is. I know it’s hard and everything else, but we just have to put our faith in God. That’s all. [62-year-old, White, Hispanic female, breast cancer] Just like when I got diagnosed with cancer, I pretty much gave it to God, and I let him just handle my battles, you know? Because it’s His will be done anyway, and he has the last say. So, I don’t really worry about that. [59-year-old, Black, Non-Hispanic female, breast cancer] I’ve only known one person, who was a really close friend, who died because of the COVID that he got. And I was surprised that it took him because he’s a very strong and active person also but, you know, God’s ways are not our ways, but God’s. [62-year-old, White, Non-Hispanic female, breast cancer] |
|
| Social networks |
Of course, you tend to appreciate the things that are of value during these things of crisis in your life. It’s like you refocus on what’s- what really matters and stuff in life, so my experience with God matters and my relationship with my family. [62-year-old, White, Hispanic male, colorectal cancer] Yes, so my other family members and my sister didn’t always check in with me, but she does now….[67-year-old, Black, Non-Hispanic female with breast cancer] |
|
| Mental Health Issues | Additive effect of the pandemic | |
|
A lot of my anxiety was, you know, due to other things anyway, it just didn’t help anything as far as the COVID pandemic. So it [COVID] just kinda compounded it even worse. [62-year-old, Black, Non-Hispanic female, breast cancer]
…and the blood pressure before cancer and now all the three combinations [blood pressure, cancer, and COVID-19], you know, It is really worrisome. You know, it’s like I really don’t- every night when I go to sleep, I just wonder if I’m gonna wake up the next day, you know. [64-year-old, White, Non-Hispanic male, colorectal cancer] |
||
| Coping strategies | Well, like I said, you have to try to control yourself, think positively that everything will be okay. We shouldn’t think negatively, because if we think negatively, we start feeling anxious or that things cannot be solved, but there’s a solution to everything [62-year-old, White Hispanic female, breast cancer] | |
| Lessons from cancer history inform coping | Strategies | |
|
It’s just, you know, after going through it [cancer] and not knowing if you’re going to come out on the other side of it, again it made me reflect on when I was in chemo, and you just have a different appreciation for life. So even if you’re stressed, even if your money is a little tight or whatever, you still look at the fact of – Well, it should, I’m sorry, it should change your perspective to where you’re just grateful to wake up every day. [62-year-old, Non-Hispanic Black female, breast cancer]]
It [death of a loved one] was something that I could handle. It was something normal that anyone feels when a loved one is sick or passes away. I think that because I had had cancer and had undergone treatment and surgery, it helped me a lot to be a very strong woman. So, I knew how it was living in a very painful way. And there are things, that almost most of the things that happen may seem small compared to what I experienced. [46-year-old, Hispanic female, breast cancer] |
Acknowledgments:
Authors would like to thank Yves Garza, Marianne Olaniran, Maryanne Sapon, Brenda Santillan, Ingrid Simons, Itzel Ruiz, Jennifer Rodriguez, and Luis Pena for their contributions to data collection.
Funding:
This work was supported by the National Institutes of Health award # 3R01CA203856-05S2.
Footnotes
Ethics Approval: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by Institutional Review Board at UT Southwestern Medical Center (STU 102015-090), 8/21/2020.
Consent to Participate: Informed consent was obtained from all individual participants included in this study.
Consent for Publication: Not applicable
Statements and Declarations
Competing Interests: The authors have no relevant financial or non-financial interests to disclose.
Data Availability:
Not applicable
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