Blood cancer caregiving during COVID-19: understanding caregivers’ needs

Abstract

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers’ uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers’ experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers’ needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.

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).…”

“…Despite their greater mental health needs, carers of those with intellectual disabilities received less social support (Willner et al., 2020). As a result of the reduced support measures, carers reported feeling socially isolated and lonely (Amaniera et al., 2021; Azevedo et al., 2021; Carbone et al., 2021; Fisher et al., 2021; Makaroun et al., 2021; Tam et al., 2021; West et al., 2021).…”

“…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) 40% of carers believed their own health was more endangered compared to the period before the pandemic. More specifically, carers reported worries about contracting the virus or being quarantined (Vaitheswaran et al, 2020;Yasuma et al, 2021), while increased sedentary behaviour and screen time was documented by Greaney et al (2021).…”

Distress in a Pandemic: Association of the Coronavirus Disease-2019 Pandemic with Distress and Quality of Life in Hematopoietic Stem Cell Transplantation

“…Our findings suggest that although the COVID-19 pandemic has altered many aspects and logistics of HSCT and recovery, 9 , 12 it has not worsened pre-HSCT distress, fatigue, or QOL compared to before the pandemic. Indeed, well established factors such as patients’ illness experience, treatment burden, uncertainty regarding future health and potential HSCT complications are still likely the driving force behind distress, fatigue, and QOL challenges in this population.…”

“… 11 Hence, pandemic restrictions on lifestyle and travel may have negatively impacted the size and effectiveness of social support networks for HSCT recipients, intensifying their distress. 12 …”