Family Caregivers’ Experiences and Changes in Caregiving Tasks During the COVID-19 Pandemic

Abstract

The purpose of this descriptive study was to describe family caregivers’ experiences and changes in caregiving tasks and approaches during the COVID-19 pandemic. Using web-based strategies, 69 family caregivers of adults with chronic or disabling conditions were recruited and completed an online survey about positive and negative caregiving experiences, and ways in which caregiving has changed. Data were analyzed using descriptive statistics (structured questions) and conventional content analysis (open-ended responses). Participants reported concerns about their loved one’s physical and mental health, the limited access to other caregiving sources, and the limited opportunities to maintain personal well-being. Caregiving tasks completed more than usual included providing emotional support, shopping for groceries and essentials, and contacting healthcare providers. Participants modified their caregiving approach by assuming added responsibilities, leveraging technology, and managing a new caregiving routine. Findings indicate that family caregivers experienced additional caregiving challenges and changed caregiving tasks considering the limited resources available.

Limitations in representative sampling of unpaid caregivers from minority ethnocultural backgrounds in a population-based survey

“…Looking at ethnic background specifically, these results are not wholly representative of the proportion of visible minorities across Ontario. This underrepresentation is consistent with other population-based caregiver research utilizing survey methods conducted during the pandemic, in which, despite being conducted in ethnically diverse settings (Canada and United States), less than 30% of respondents are non-white [4,[13][14][15].…”

“…For example, though lay in language, recruitment material and the survey itself were in English as translation services were not financially feasible. Further, budget constraints prevented us from compensating participants for their time, which has been noted to improve response rate among ethnocultural minorities in electronic surveys during the pandemic [4]. However, participants were invited to enter a raffle to win monetary prizes.…”

“…Ruppel (2020) notes that requesting participants to take part in social research during a pandemic is challenging, especially if those participants are directly experiencing the effects of the pandemic [26]. With adult day programs closed and paid support paused, opportunities for respite dwindled [9], and unpaid caregivers in Canada and elsewhere found themselves taking on more responsibilities during the pandemic than before [4,27].…”

“…One research population this may implicate is unpaid caregivers, who have recently garnered research and policy attention, largely in high-income Western settings, due to an increase in responsibilities caused by pandemic lockdowns and restrictions in the health system [4]. Unpaid caregivers provide medical, emotional, and/ or psychological support for a family member, friend or neighbour living with a health condition or limitations in activities of daily living [5].…”

Health-related quality of life in caregivers of community-dwelling individuals with disabilities or chronic conditions. A gender-differentiated analysis in a cross-sectional study

“…A study performed in Serbia to explore the quality of life of informal caregivers showed a subjective decrease compared to the pre-pandemic experience, associated with an increased burden and complexity of care, concern for their own health and that of the person they are caring for [ 28 ]. These concerns are described in other studies, along with limited opportunities to maintain their personal well-being and the need to modify the caregiving approach by assuming new responsibilities and managing a new caregiving routine [ 25 ]. In general, caregivers report an increase in depressive symptoms, stress, anxiety and burden [ 22 , 23 , 26 , 27 , 29 , 30 ].…”