Racial and ethnic variations in caregiving-related physical, emotional, and financial strain during COVID-19 among those caring for adult cancer patients

Abstract

Purpose Cancer caregiving is shown to be a burdensome experience in typical times. The purpose of this study was to describe cancer caregivers' emotional, physical, and financial strain during the COVID-19 pandemic and compared to preCOVID-19, and explore racial and ethnic variations in caregiver strain. Methods We conducted a cross-sectional online survey using Lucid, LLC, incorporating quotas for race, ethnicity, gender and age. Caregivers had to be adults living in the USA and currently providing unpaid care to an adult cancer patient (i.e., during COVID-19) and prior to the pandemic. We assessed the caregivers' emotional, physical, and financial strain and asked them to compare to preCOVID-19 caregiving. Analyses included descriptive and linear regression adjusting for sociodemographic and caregiving-related variables. Results A total of 285 caregivers met eligibility, and most were nonHispanic white (72.3%) and female (59.6%). Based on a scale of "1: Much lower" to "5: Much higher", the financial, physical and emotional strain/stress experienced by caregivers compared to preCOVID-19 was, on average, 3.52 (SD: 0.82; range: 1-5) for financial strain, 3.61 (SD: 0.86; range: 1-5) for physical strain, and 3.88 (SD: 0.89; range: 1-5) for emotional stress. NonHispanic black caregivers were significantly more likely than nonHispanic white caregivers to indicate that caregiving-related financial strain was higher than preCOVID-19. Moreover, Hispanic caregivers compared to nonHispanic white caregivers reported caregiving-related emotional stress was higher than preCOVID-19. Conclusion These findings suggest a need to be attentive to racial and ethnic variations in emotional and financial strain and provide targeted support in clinical care and via public policy during a public health crisis.

Impact of the COVID‐19 pandemic on family carers in the community: A scoping review

“…Study findings indicated that carers’ psychological wellbeing deteriorated during the pandemic. Frequently cited psychological concerns included fear (Carballo et al., 2021; Cohen et al., 2020; D’herde et al., 2021; Fisher et al., 2021; Ng et al., 2020; Simblett et al., 2021; West et al., 2021), depression (Altieri & Santangelo, 2020; Giebel et al., 2021; Li et al., 2021; Pongan et al., 2021; Rainero et al., 2021), anxiety (Borelli et al., 2021; Carcavilla et al., 2021; Consonni et al., 2021; Giebel et al., 2021; Hwang et al., 2021; Li et al., 2021; Ng et al., 2020; Pongan et al., 2021; Rainero et al., 2021; Salari et al., 2020; West et al., 2021; Zucca et al., 2021), stress/distress (Alexopoulos et al., 2021; Carballo et al., 2021; Cohen et al., 2020; Dhavale et al., 2020; Fisher et al., 2021; Longacre et al., 2021; Rainero et al., 2021; Rusowicz et al., 2021; Tam et al., 2021; Zucca et al., 2021), sleep disturbances (Azevedo et al., 2021; Carcavilla et al., 2021; Li et al., 2021) and dietary issues (Borelli et al., 2021; Carcavilla et al., 2021; Li et al., 2021; Makaroun et al., 2021; West et al., 2021). Increased psychological burdens were often linked to a reduction in support (Budnick et al., 2021; Lee et al., 2021; Macchi et al., 2021; Tsapanou et al., 2021), or a deterioration in the care recipient's health (Borelli et al., 2021; Yasuma et al., 2021).…”

“…Carers in Prasad's (2020) study reported a significant increase (6% vs. 18%, p = 0.01) in problems faced due to COVID‐19 restrictions, with the inability to access a healthcare facility and difficulty procuring medication as the main inconveniences. Other concerns across the studies included fear of spreading disease (Cohen et al., 2020; Hwang et al., 2021; Vaitheswaran et al., 2020), COVID‐19 related risk management (Tuijt et al., 2021; Vaitheswaran et al., 2020), struggling to access basic necessities (Giebel et al., 2021), treatment disruptions and delays in seeking help (Chia et al., 2021; Werner et al., 2021), exclusion from remote meetings regarding the care recipient (Liberati et al., 2021), family members dying alone (Ng et al., 2020), dealing with changes to routine, managing daily household chores and supplies (Vaitheswaran et al., 2020) and disruption of work and financial concerns (Amaniera et al., 2021; Giebel et al., 2021; Longacre et al., 2021; Makaroun et al., 2021; Vaitheswaran et al., 2020), more so due to the pandemic.…”

The Difficulties the Caregivers of Cancer Patients Experience in the Covid-19 Pandemic

“…Caregivers reported that they lost their jobs, their income decreased, and they had di culty in meeting the treatment fees [22]. Also, three out of ten caregivers experienced economic di culties during the Covid-19 pandemic period and economic di culties were the main di culties experienced by caregivers of cancer patients [10]. During the pandemic, some caregivers lost their jobs as a result of the global economic recession [5].…”

“…Social distance, quarantine and isolation have also negatively affected the support received by caregivers during the pandemic, further increasing the burden on them [5,7]. There have been reports in the literature that being in social isolation increases the feeling of loneliness [8]; that the mental health of those who care for their patients during the Covid-19 period was adversely affected, and that they experienced emotional stress, distress and depressive symptoms [9,10]. Caregivers are hesitant to seek help from outsiders because of the fear of the virus spreading, and they experience economic di culties due to out-of-pocket medical expenses [8].…”

Caregiving for People With Dementia or Cognitive Impairment During the COVID-19 Pandemic: A Review

“…Caregivers aged 18 to 24 and those of Hispanic or Latino ethnicity in the U.S. were more likely to experience anxiety or depression compared to White caregivers, with suicidal ideation being more prevalent among Black than White caregivers (Czeisler et al, 2021). In another study, Black caregivers were more likely than White caregivers to report higher caregiving-related financial strain, and Hispanic caregivers reported greater emotional stress than White caregivers (Longacre et al, 2021).…”