The Ongoing Impact of COVID-19 on Caregivers of Patients With Chronic Lymphocytic Leukemia

A recent study investigated the impact of COVID-19 on caregivers of patients with chronic lymphocytic leukemia (CLL). The study also aimed to identify what resources these caregivers need to better support themselves and the patients in their care (J Clin Med. 2023;12(4):1648. doi:10.3390/jcm12041648.)

The stressors for caregivers of patients with CLL were exacerbated by the COVID-19 pandemic because patients with CLL are at an increased risk of getting sick or dying from the virus. A previous study by Diliara Bagautdinova, PhD, University of Florida, Gainesville, FL, and colleagues found that during the early phase (or wave one) and prior to the vaccine period of the pandemic, CLL caregivers faced several challenges, including distress (e, fear and uncertainty), increased isolation from loved ones, and reduced access to in-person care opportunities. In their latest study, the researchers sought to identify how the COVID-19 pandemic continues to affect caregivers of patients with CLL during the post-vaccine phase and what kind of resources are still needed during the ongoing pandemic.  

Bagautdinova and colleagues drew from a larger mixed-methods study that consisted of two phases: an online survey and a semi-structured interview. The survey asked CLL caregivers about their experiences during the post-vaccine phase and included demographic items, validated scales to capture their psychosocial experiences and needs, as well as open-ended questions. During the in-depth, semi-structured interviews, which lasted an average of 76 minutes, a subset of spousal caregivers who responded to the survey were asked about their psychosocial experiences relating to CLL in general, and the impact of COVID-19 came up organically in the conversations. Additionally, probing questions were asked to further explore the continuing impact of the pandemic on the caregivers’ lives. The survey was disseminated between February 2022 and March 2022, and the interviews were conducted between April 2022 and May 2022.

The researchers partnered with The Leukemia & Lymphoma Society and CLL Society, using their existing databases to send survey invitation emails to approximately 15,000 caregivers. To participate in the study, the candidates had to be a caregiver of a loved one living with CLL, 18 years or older, and currently residing in the US. For the interview, participants were required to be a spousal caregiver. A deductive and thematic analysis was conducted on both the survey open-ended responses and the interview transcripts using a constant comparative method approach.

A total of 575 caregivers in the age range from 18 to 63 (M = 47.66; SD = 10.32) responded to the survey. Of the respondents, 377 were women (65%) and 88% were in a married/domestic partnership. A majority of the participants identified as White (91%), had at least one child (79%), and were caring for a spouse (82%). The patients being cared for by the respondents had the following treatment experiences: 50% were currently in treatment, 24% had not yet started treatment, 20% had completed treatment and were in remission, 5% were about to start treatment, and 1% had elected to stop treatment but were not in remission.

For the open-ended survey responses, a total of 473 caregivers responded to the item that asked what “would have been helpful” to them during the pandemic, with 52% (n = 246) stating they needed information and access to resources in four categories: COVID-19 risk, vaccination, safety/precautionary measures, and monoclonal infusions.

Overall, the study found that the challenges experienced by CLL caregivers at the beginning of the COVID-19 pandemic have continued into the post-vaccine phase. In addition, the caregivers indicated new stressors, including having to cope with their loved one’s insufficient antibody response to the COVID-19 vaccine due to CLL, feeling “cautiously hopeful” about monoclonal antibody fusions, and dealing with unsupportive or skeptical individuals regarding the patient’s vulnerability to COVID-19. 

“Frontline family blood cancer caregivers in both the survey and interview studies described a ‘living hell’ in that they were overwhelmed with emotional distress characterized as living in chronic ‘fear’, ‘paranoia’, and ‘anxiety’ that their loved one with CLL would contract COVID-19,” wrote the authors.

The researchers acknowledged that the study had two main limitations. First, the majority of the participants identified as White and non-Hispanic. Although these demographics reflect statistics that CLL is more common among men and people who are White, they do not reflect the wider cultural diversity of the US and internationally. Second, most of the individuals in the interview portion of the study did not have children, which could have also impacted their experiences and perceptions.

Ultimately in the study, CLL caregivers expressed the need for ongoing, reliable information from COVID-19 experts about the vulnerability of patients with CLL to be widely disseminated to promote awareness on a societal level. Doing so would arm the caregivers with resources to help them with challenging conversations or confrontations with unsupportive family, friends, and other skeptical individuals, which can help them maintain social ties and support.