Caregiving during the Time of COVID‐19: A Multi‐State Qualitative Study of Family Caregiver Experiences and Decision‐Making

Abstract

Research Objective COVID‐19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Study Design Using purposive sampling, family caregivers participated in open‐ended qualitive interviews (2019–2020), until thematic saturation was reached. Questions broadly examined caregivers' experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long‐term services and support expenditures. They include; Arkansas, Florida, Illinois, Minnesota, New York, North Carolina, and Oregon. All participants were actively involved in the care of someone with dementia or another cognitive impairment over the age of 60. Population Studied 63 family caregivers were interviewed across eight states. About 89% of participants were female, 78% white, 10% black, 5% Asian, 3% biracial, 2% Native American. 36% of respondents reported that those they care for receive Medicaid. Principal Findings This analysis focused on several COVID‐related caregiver decisions: changes in care, challenges with care utilization and access, and policies or changes in care that were helpful during the pandemic were of focus. Four key themes emerged. First, family caregivers experienced communication challenges with long term care facilities often due to COVID‐19 restriction policies. They reported an inability to asses care quality, participate in medical appointments, or communicate with their loved ones. Second, some families chose to cease the care supports they were receiving. Participants cited concern about the virus itself, and about indirect pandemic effects such as their loved ones experiencing confusion, loneliness, and poor care. Third, many respondents expressed the desire to avoid future nursing care, and expressed hesitancy towards seeking HCBS until the pandemic is curbed. Finally, many caregivers reported that telemedicine and other remote health care interventions improved their workload and service access. Conclusions We examined how the pandemic has impacted decision‐making among caregivers of older adults with cognitive impairments. Family caregivers experienced significant concern about COVID‐19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers have also shown flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care interventions such telemedicine, no‐contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Implications for Policy or Practice Given the persistent challenges posed by COVID‐19...

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

“…Our findings contribute to the sparse literature on caregivers of adults with epilepsy and literature on the impacts of COVID-19 on informal caregivers. Consistent with other caregiving research, we found COVID-19 increased caregiver distress and burden [13] , [18] , [19] , [20] and specifically for caregivers of adults with epilepsy. Because epilepsy can affect both adults with epilepsy and their informal caregivers [8] , it is crucial to understand how caring for individuals with epilepsy can influence caregivers, and how these influences differ compared to caregivers of children or adolescents with epilepsy.…”

“…While the relationship between caregiving and health is generally associated with stress [10] , it is crucial to understand other factors that contribute to the overall burden experienced by epilepsy caregivers and how their well-being is affected over the course of their caregiving role [10] , [11] . The ongoing COVID-19 pandemic [12] has posed, and continues to pose, unprecedented challenges to caregivers of all types of conditions [13] , including epilepsy. A deeper understanding of the current factors influencing the health, well-being, and QOL of epilepsy caregivers is necessary to provide valuable insights into these circumstances, and ultimately to address high levels of caregiver burden in both pandemic and non-pandemic settings.…”

“…Recent studies on how the COVID-19 pandemic has impacted caregivers have found that caregivers regularly reported significant concern about being infected or their care recipient becoming infected, routine medical appointments being canceled or postponed, and an increased fear of seeking medical attention due to exposure to the virus [13] , [18] . Additionally, communication and coordination difficulties with healthcare providers proved to be a common theme reported among caregivers during the pandemic [13] , [19] . In a German study of informal caregivers [20] , it was found that across indicators of care involvement, many reported that their care situation worsened during the COVID-19 pandemic.…”

‘Safety First’: Residents, Families, and Healthcare Staff Experiences of COVID-19 Restrictions at an Irish Residential Care Centre

“…However, concerns from family members arose with the level and focus of communications in respect of continuing restrictions and the slow reintroduction of visiting. In agreement with Sadler et al’s [ 16 ] findings, strengthening communication supports when residential care facilities are locked down may reduce confusion and feelings of isolation for residents. Furthermore, Staker and Sun Choi [ 17 ] concur that families feel peace of mind when there are multiple communication channels for them to contact the resident.…”

Dementia and COVID-19 among Older African American Adults: A Scoping Review of Healthcare Access and Resources

“…Although the authors did not specifically analyze Levesque’s framework, they nevertheless utilized terms similar or identical to those in the framework. Half of the studies reported the availability (or lack) of healthcare resources due to financial insecurities, a lack of healthcare insurance, education/knowledge gaps, transportation, Internet/phone or telemedicine, cognitive screening, ambulatory care, and so on ([ 26 , 36 , 37 , 38 , 39 ]) (See Table 4 ). These were grouped as materials, financial insecurities, and knowledge gaps.…”