Intersecting challenges: Cancer caregivers’ experiences during COVID-19

Abstract

Background:

The COVID-19 pandemic introduced a landscape that contributed to many unknowns and unmet needs among cancer family caregivers and their care recipients.

Aim:

This secondary analysis qualitative study aimed to explore cancer family caregiver narratives for the societal and institutional contexts of caring for a person with advanced cancer during the early years of COVID-19.

Design:

Narrative inquiry was used in the parent study to co-create caregiver narratives.

Methods:

Narrative thematic analysis was used to identify themes of COVID-19 from five cancer caregiver narratives.

Results:

Thematic threads of COVID-19 were identified as short stories of tension woven throughout the caregiver narratives: advocacy for quality healthcare, the need to protect their person from the virus and medical/institutional disregard, financial strain, lack of social support, and the long goodbye. The findings further illustrate how COVID-19 and cancer intersect to influence a caregiver’s healthcare experience and well-being.

Conclusion:

Family-centered care strategies and policy changes are needed to better meet the complex needs of cancer caregivers during a pandemic and beyond.

Introduction

The COVID-19 pandemic hit in early spring of 2020, prompting a global response to mitigate the risk of virus transmission and contagion. With little advanced warning, this mitigation plan often included national lockdown mandates to stay at home and stay-in-place within social and institutional spheres. While indicated to curb the COVID-19 crisis, the mandatory lockdowns contributed to many changes to the daily activities of cancer patients and their family caregivers (FCGs).

A growing body of international studies indicates that cancer FCGs experienced negative consequences to their emotional and spiritual well-being as well as an increase in socioeconomic burden and physical-somatic symptoms because of the pandemic and the restrictions.^{1 –8} A major consequence of the pandemic on cancer FCGs well-being was uncertainty about the virus and how it would affect the person with cancer’s illness trajectory alongside the lack of access to adequate and uninterrupted cancer medical care.^2,5 These factors contribute to an increase in cancer caregiver stress, anxiety, fear of the unknowns, loneliness, unmet informational and functional needs, and a lack of sufficient social support.^1,2,4,6,7

In this study, we aimed to explore cancer FCG narratives situated in the United States for the societal and institutional contexts of caring for a person with advanced cancer during the early years of the COVID-19 pandemic.

Methods

Study design

Narrative inquiry, a methodological approach to qualitative research, ⁹ was used to co-create cancer caregiver narratives between the narrator and the researcher. Narrative inquiry is a flexible form of case-centered inquiry used to construct narratives and tell stories about stories while turning toward particularities and away from generalities. ⁹ The situational context of caregiver narratives also includes historical, societal, institutional, and cultural spaces from wherein caregiving experiences are constructed. A secondary analysis of the parent narrative data set was completed using narrative thematic analysis to report on the identified themes of COVID-19. ¹⁰ The reporting of this study conforms to the Standards for Reporting Qualitative Research (SRQR) statement ¹¹ (see Supplemental File). Refer to the published parent study for additional details regarding the methods used. ¹⁰

Study participants

We used a strategy of purposeful, intentional sampling of self-identified cancer FCGs. ¹² Participants were eligible if they were actively providing care for a person with advanced cancer (stage III or IV) for a minimum of 3 months before study enrollment, aged 18 or older, able to understand and speak the English language, and able to participate in an hour-long interview in person or virtually. Participants were recruited through a recruitment flyer displayed in a regional cancer center in Southeastern North Carolina, public and digital spaces, and on Research Match. ¹³ All participants were provided verbal informed consent prior to enrollment in the study.

Data collection

One trained interviewer (C.W., a doctoral student and oncology palliative care Nurse Practitioner who had no previous relationships with the participants) conducted semi-structured interviews with the participants using an open-ended question with prompts. The caregiver narratives were co-created through a relational and caring dialogue. We understood that research interviews are narrative occasions that generate detailed accounts in the form of storytelling by which two people (the interviewer and the interviewee) jointly construct the meaning of events and experiences. ⁹ Interviews were completed either in person at a private location of the participant’s choice or via Zoom. The interviews were 45–90 min long (median 60 min), digitally recorded, manually transcribed, and stored on a secure University server. The narrative text was then cleaned up of grammatical errors and de-identified.

Data analysis

Riessman’s^9,14 method of narrative thematic analysis was used to attend to the thematic threads related to COVID-19 within the caregiver narratives. During this interpretive analysis, we turned toward the broader commentary of diverse, caring stories situated with a backdrop influenced by the COVID-19 pandemic. We kept the stories intact as bounded analytical units and inquired “what” was said rather than “how” it was told. ⁹ Thematic connections were identified between the sequences of small stories within the whole and then across the individual narratives.

Results

Five FCGs were eligible, enrolled, and completed the study. These participants (identified by pseudonyms similar to their given names) included: two male spouses of females (Mitchell and Ron), a female spouse of a male (Susan), a female cousin of a male (Kanika), and a female daughter who cared for her mother (Jane). The median age was 54.6 (range 58–63), and the length of relationship with their cancer care recipient averaged 39 years (range 20–50). The participants described their care recipients’ cancer diagnosis as serious and non-curable, with an average length of disease of 14 months (range 4–24 months). Cancer types included lymphoma, breast, colon, and renal. Four of the participants were white, non-Hispanic, and one was African-American, non-Hispanic.

Thematic threads of COVID-19 were identified as short stories of tension woven throughout the cancer caregiver narratives. Tensions emerge during transitional life experiences of illness, often contributing to deconstructing and reconstructing of the caregivers’ role. We present these themes through narratively derived exemplar short stories lifted from the whole. ¹⁰

A story of advocacy of quality healthcare

“Susan” relentlessly advocated for her spouse’s health in a complex medical-institutional milieu. She advocated by demanding that medical specialists attend to her husband and requested additional testing to secure a diagnosis that would account for his rapid decline and increase in symptoms. Because Susan’s husband’s initial symptoms were sinus-related (i.e., runny nose, headache, head congestion, and fatigue) and could be attributed to COVID-19, she ran into multiple barriers. Medical guidelines issued by the Centers for Disease Control and Intervention and the local health department propagated an inherent fear of COVID-19 transmission among healthcare providers. These guidelines contributed to the lack of healthcare providers willing to evaluate her husband in person, face-to-face, resulting in a delay of the cancer diagnosis and subsequent treatment.

It started off as what we thought was a sinus infection, back in May 2022. He was having a lot of sinus symptoms. We went to the doctor, and I think they gave him antibiotics and sent him home. This was Memorial Day weekend. . .we were on the way to the mountains, and he was just holding his head. . .he was miserable with any kind of stimulation at that point and time. It was just too much for him. And that was when I thought: this is more than a sinus infection. We turned around, we got maybe an hour from home. . .turned around, tried to call his doctor. His doctor’s office still because of COVID was not seeing patients with any kind of COVID symptoms at all, face to face, so I said, “Let’s just go back to urgent care,” to the doctor that had seen him a week prior. So, we went there, the doctor came out, “The doctor thinks I have this syndrome and he wants me to either go to my doctor’s or go to the ED.” And I said, “Let’s go to the ED,” because we didn’t feel supported by his doctor at all.

A story of protection of person with cancer from virus

“Susan” worked in healthcare within an acute care institutional setting, a setting considered high risk for COVID-19 transmission. She knew that her husband had newly diagnosed cancer and was on treatment which could affect his immune response and increase his risk of developing significant life-threatening complications related to an active COVID-19 infection. She was scared to work for fear of being an asymptomatic carrier of COVID-19 and transmitting the virus to her immune-compromised spouse.

I was scared to death about going back to work, and I didn’t work for a couple weeks after he was diagnosed because of COVID and the thought of bringing sickness home was very, very overwhelming. . .In the beginning it was really hard. I went back to like taking my shoes off before I walked into the house, and stripping down in the laundry room and running to the shower.

A story of protection of person with cancer from medical/institutional disregard

“Michell’s” wife was hospitalized multiple times during the peak of the COVID-19 crisis. After his wife experienced an unfortunate event in the hospital, Mitchell felt responsible to stay beside her and ensure the hospital staff met her healthcare needs. He had witnessed medical disregard and felt it was his responsibility to protect her, despite his need to take time to care for himself.

About 10:30 at night we got her into a room. They set up an IV cause she was supposed to be on heavy fluids all day, and hadn’t been able to do that. . .no one had checked on her the whole time she was in that room. And the IV that they set up was never turned on properly, so she never got any fluid at all.

A story of financial strain

“Susan” and her spouse experienced significant financial strain. This strain was secondary to his lack of ability to work, her need to accompany and care for him during cancer treatment, and her concerns about working in an acute care healthcare setting and being exposed to COVID-19.

I had a lot of anxiety. . .when I wasn’t working for I don’t know how long. I didn’t work two weeks or more. All at the same time our homeowner’s insurance was due; taxes were due. Like all these big bills were coming in and no money was coming. He hadn’t worked since mid-May. Thankfully, we have money saved up. But when money doesn’t last long, when no money is coming in and you get these big bills and I’m like, “Oh my gosh.”

A story of lack of social support

The COVID-19 lockdown resulted in “Mitchell’s” job transfer from in-person customer service to remote work from home. His wife was laid off from her job as a theatre restaurant cook as the theatre doors were closed.

When COVID hit she got limited. Isolation. I had to go remote on my job, so it’s pretty much the two of us in isolation. Like so many other places.

“Ron” shared multiple stories of social isolation and lack of support related to COVID-19 institutional restrictions and regulations. Ron’s wife who had metastatic cancer experienced complications that required urgent care and he was unable to be with her in the hospital.

. . . She did not have a heart attack, but she had the same; it was the widow maker; we both had the widow maker. Mine was 100%, hers maybe was like 80% apparently. I took a job with the census, and so she called me one day when I was working and told me that she wasn’t feeling well. I didn’t realize how bad it was. Then the daughter called and had 911 come and pick her up and brought her over there. It was during COVID, so I couldn’t come to the hospital . . . well other than my daughter, we don’t have any family here. So, it’s tough

Although desired and needed, “Ron” did not receive emotional or spiritual support from the members of either of the local churches his family attended.

I feel like she’s gotten good support. I don’t know how much support I’ve gotten from the church. Nobody just calls me up. . .I would hope that there will be more than lip service . . . she has somebody that visits her at least once a week. Nobody has even been there one time in two years to see me.

A story of a long goodbye

“Jane” attended to her mother when she was hospitalized for sepsis secondary to a fungating breast mass. Surprisingly to “Jane”, her mother survived the hospitalization, yet she was not stable enough to go home. “Jane” consented to her mother’s transfer to a nursing care facility, which was in lockdown. The doctors predicted that her mother would die at the facility within months secondary to complications of cancer. When “Jane” pulled down her mask and kissed her mother goodbye, she assumed she was saying goodbye for the last time.

. . . They made it so clear to me that she was not coming home. I just embraced that reality. . .and I assumed that she would die in the rehab center, right? They didn’t call it rehab. You know at the time they just called it “nursing care, nursing facility” and we started hospice. I assumed that she would die there. But I couldn’t even enter. I couldn’t go into the facility because it was COVID and they wouldn’t let me in. And so when I kissed her goodbye at the hospital when they came to take her there, I thought that could be the last time I saw her because I knew I wasn’t going to be allowed to enter into the nursing facility because of COVID.

Discussion

These cancer caregiver narratives were rooted in the COVID-19 pandemic, contributing to unique stories of double tension related to the social and institutional contexts in which these stories of caring were situated. We use the language of double tension to illustrate the complexities that FCGs experience by living alongside someone with advanced cancer while concomitantly caring during a pandemic. These themes complement the literature on caregiver experiences during COVID-19 and add contextual layers of understanding.^1,2,4,6,7 The findings further support the need for innovative, forward-thinking strategies that facilitate quality healthcare and meaningful connections between care recipients, their FCGs, and their healthcare providers during a pandemic.

The thematic thread of advocacy was salient among these narratives. The caregivers shared stories of their need to advocate for quality healthcare and symptom management, healthcare access and continuity, and information on how to care for and protect their person despite caring within an isolating and uncertain landscape. The stories of cancer caregivers are unique because their care recipients are often immunocompromised due to the disease and cancer treatment, heightening their need to assume responsibility and duty toward their loved ones ⁴ while maintaining hypervigilant about the perceived threats to their loved ones’ vulnerable and immunocompromised state. Similar to other studies,^{2 –4} these caregivers interwove the dual threat of COVID-19 and the cancer illness to personal worry, fear, and anxiety about their loved ones. A recent scoping review of digital technology applications in palliative care ¹⁵ found that digital tools, such as virtual reality and wearable devices, have positively impacted patient pain and symptom management, symptom distress, and quality of life. While the studies examined had limitations, such as small sample sizes, the findings demonstrate potential for the use of digital technologies to assist FCGs in maintaining healthcare access and continuity of care across diverse care settings and environmental contexts. ¹⁵

The small and purposeful acts of advocacy and protection helped counterbalance the threat of the virus in the setting of advanced cancer. Creative strategies to minimize the care recipients’ exposure to an infectious disease, early detection of signs and symptoms of a potential infection and facilitating the FCGs’ knowledge include using information-technology tools that integrate a broad range of strategies. Technology-mediated interventions could include educational and skill training videos (e.g., stress and anxiety management), daily precaution reminders (e.g., hand-washing, crowd avoidance), and remote temperature and symptom monitoring features that access an oncology registered nurse 24 h/day.^16,17

These caregiver narratives include stories of social isolation and lack of adequate emotional and spiritual support. Consistent with the findings of Opsomer et al., ¹⁸ some of the FCGs transitioned to working remotely from home, which further exacerbated social isolation as they were no longer situated in socially supportive work environments. Additionally, they lacked meaningful and tangible support from friends and church clergy. The small stories ¹⁹ within this study’s caregiver narratives further support the crucial role that support systems provide and the need for palliative care clinicians and researchers to develop interventions that counter caregiver isolation. Amaniera et al. ⁶ study included 32 cancer caregivers surveyed during COVID-19 and reported that 76% of them felt more socially isolated. Social isolation correlated with a negative impact on mental health. Future studies could explore technology-mediated interventions via curated apps or social media (e.g., cancer palliative care support groups hosted by community palliative care medical group) and artificial intelligence tools to facilitate caregivers’ and their care recipients’ emotional and spiritual well-being. ¹⁶ As an intradisciplinary model, palliative care is uniquely positioned to offer holistic care and foster communication through various media and technology options. ²⁰ Other strategies include chaplain-spiritual care and social worker team-led tele or digital health, assessing and addressing patients’ and caregivers’ emotional and spiritual needs. These stories highlight the need for oncology palliative care teams to develop and implement alternative and unique support-based strategies appropriate to cancer patients who are socially isolated due to their immunocompromised state and challenges introduced by a pandemic.

The indirect effect of a pandemic increases financial stress and can contribute to general distress, caregiver burden, and a negative impact on FCG mental health.^3,6 These caregivers shared stories of working outside of the home before the pandemic. Employment was necessary for them to provide for their personal, care recipients’, and families’ financial needs. The pandemic contributed to a loss of work; workdays were missed secondary to the fear of viral contagion and transmission to their cancer care recipients. National family-centric caregiver policies are indicated to recognize the value of unpaid caregiving on the socioeconomic conditions and promote FCG flourishing by generating opportunities for financial and material support and security. ²¹ While the financial stress of caregiving is not unique to cancer caregivers, they would benefit from flexible workplace policies that support remote work options that enhance and sustain income security. ⁸ Flexible work options would allow FCGs to continue caring for their immunocompromised care recipient at home while maintaining self-wellness.

Multiple FCGs shared stories about being physically separated from their care recipients due to institutional restrictions on visiting practices. Similar to other studies’ findings,^22,23 our caregivers found visitor restriction policies challenging, frustrating, and isolating. The lack of physical connectedness has been shown to contribute to psychological consequences of helplessness, anxiety,^22,24 and unmet social and emotional needs. ²³ While communication through mobile phones and virtual video communication platforms, such as Skype and Zoom, was often implemented in hospital settings, these modalities were wrought with barriers and failed to facilitate the physical and emotional presence that caregivers need to maintain their supportive role with autonomy.^22,23

A paradigm shift evolving from patient-centered to family-centered and relationship-based care is required to protect the patient–caregiver–family connection regardless of the patient’s disease while also adhering to public health measures. Future research could explore novel connection strategies that maintain social distancing mandates including holograms, 3D video calls, and other forms of augmented reality. Innovative transdisciplinary research incorporating careful bioethical considerations is required to create revolutionary technology ²⁵ for nurses and healthcare providers to meet the needs of family systems, maintain meaningful intrapersonal connections, and improve the healthcare experience. While we advocate for advances in technology to enhance palliative care and human health, we caution that the use of technology can further increase the gap in interpersonal relationships between healthcare providers and the patient, and the patient and their FCGs. Holistic nursing theories, such as Locsin’s Technological Competency as Caring in Nursing, ²⁶ can assist palliative care nurses and other palliative care team members in developing and using technology and caring as a coordinated interaction in the healthcare environment. Technology and technology competency can be used to foster being with, doing for, and knowing persons as caring during a pandemic and beyond. ²⁷ As palliative care clinicians and researchers, we encourage palliative care clinical team members to embrace opportunities to extend technology and caring theory by partnering with researchers to design and develop technological innovations that will holistically contribute to sustaining high-quality healthcare and support systems for the patients and families we serve.

Limitations

Using narrative inquiry, ⁹ this study explored particularities and context-dependent knowledge situated within a specific time and space to understand the cancer FCGs’ experience of caring during COVID-19. Through the detailed attention to the small stories contained within the caregiver narratives, we gained critical insights into the contextual and complex experiences inherent in caring in family-centered relationships. While we did not probe specifically for stories of COVID-19, the phenomenon was an essential contextual component. Yet, one of the FCGs, Kanika, did not directly address COVID-19. Instead, she shared normalizing stories of her professional work, travel, and family gatherings. We postulate that Kanika may have utilized cultural habits, adaptive coping, and resilience strategies, such as maintaining normalcy, ⁴ managing and mastering the situation, ¹⁸ and accepting the pandemic without perceptively allowing it to contribute to additional hardships and threats in caregiving. Additionally, while we did not interview caregivers of patients with other diseases cared for by palliative care clinicians (such as heart failure, renal failure, and respiratory failure), we postulate that many of the experiences described by these cancer caregivers may not be unique to this population.

Relevance of clinical practice

The exemplar stories derived from cancer caregiver narratives further illustrate the unique and crucial role that palliative care clinicians and researchers have in developing and integrating innovative interventions and institutional policies that counter patient–caregiver isolation, protect and foster the patient–caregiver–family connection, provide holistic care that incorporates emotional and spiritual support, and relieve financial stress.

Conclusion

Understanding the unique contextual experiences of FCGs during the COVID-19 pandemic is critical to designing and supporting family-centric resources that can be used by palliative care clinicians in acute and community care settings. The narratively derived findings illuminate additional burdens FCGs faced during the COVID-19 pandemic and contribute to the body of work on a socially valued population. This knowledge can help guide oncology nurses, palliative care clinicians, and researchers to develop and implement innovative relationship-based, humanizing strategies, and advance policy to better meet the complex and holistic needs of cancer FCGs, during a pandemic and beyond.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524251346226 – Supplemental material for Intersecting challenges: Cancer caregivers’ experiences during COVID-19

Supplemental material, sj-docx-1-pcr-10.1177_26323524251346226 for Intersecting challenges: Cancer caregivers’ experiences during COVID-19 by Charlotte R. Weiss, Rachel Johnson-Koenke and Karen B. Hirschman in Palliative Care and Social Practice