Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

You Pray for Him a Bit More”: Young Adults’ Positive Aspects of Caregiving (PAC) Towards Parental Cancer

Young adult caregivers are growing in number, yet there is a paucity of literature on their role in informal family caregiving. The Positive Aspects of Caregiving (PAC) framework has been developed within Dementia carers to indicate positive outcomes of the caring experience. The current study specifically explored the narratives of four young adult carers’ lived experience of caring towards their parents with cancer, using Interpretative Phenomenological Analysis (IPA) through the lens of PAC. Main themes developed from this study were unfolding the child-parent dyad, character building and affirmation of value systems, time reframed, and sustaining caregiving continuity with subthemes surrounding responsibility, appreciation beyond the role reversal, acceptance and sources of comfort. This small-scaled study contributes towards a new understanding of the young adult population, their perception of caregiving and briefly informs the PAC beyond a dementia population.

The impact of the COVID-19 pandemic on children with medical complexity

BackgroundDescriptions of the COVID-19 pandemic’s indirect consequences on children are emerging. We aimed to describe the impacts of the pandemic on children with medical complexity (CMC) and their families.MethodsA one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021.ResultsA total of 784 paediatricians responded to the survey, with 70% (n=540) providing care to CMC. Sixty-seven (12.4%) reported an adverse health outcome due to a COVID-19 pandemic-related disruption in healthcare delivery. Disruption of the supply of medication and equipment was reported by 11.9% of respondents (n=64). Respondents reported an interruption in family caregiving (47.5%, n=252) and homecare delivery (40.8%, n=218). Almost 47% of respondents (n=253) observed a benefit to CMC due to COVID-19 related changes in healthcare delivery, including increased availability of virtual care and reduction in respiratory illness. Some (14.4%) reported that CMC were excluded from in-person learning when their peers without medical complexity were not.ConclusionCanadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.“What This Study Adds”Children with medical complexity experienced adverse health outcomes related to the direct and indirect effects of the COVID-19 pandemic.The COVID-19 pandemic has interrupted family caregiving, homecare support, access to education, and key supports for CMC and their families.Canadian paediatricians observed benefits associated with structural changes relating to the COVID-19 pandemic, including the expansion of virtual care and the reduced incidence of respiratory illness

The Paid and Unpaid Working Life Expectancy at 50 in Europe

Objectives Amid growing concerns about the economic implications of population aging and the sustainability of older adults’ working life, unpaid family care work receives less attention despite its direct relevance to population aging. This paper systematically compares the paid and unpaid working life expectancy at age 50 to understand the overlap and trade-off between paid and unpaid work among older European adults. Method Using data from the Survey of Health and Retirement in Europe (SHARE) with the Sullivan method, the paper presents gender differences across 17 countries in life expectancy at age 50 at various paid (employment) and unpaid (caregiving) role configurations. Results When work is defined to include unpaid family caregiving, women and men have similar working life expectancies at age 50, in contrast to prior research. However, its paid and unpaid components are gendered. The results also show that at age 50, women are expected to spend similar number of years providing grandchild care and ADL/IADL care and that most of these years take place after retirement. Discussion The results highlight that the gendered tension between paid and unpaid work persists into older adulthood and needs to be accounted for in working life expectancy measures. The results also underscore the gendered implications of population aging and unpaid work in older adulthood for retirement age policies and strategies for promoting gender equality in later life.

Developing Behavioral Coding to Understand Family Communication Breakdown in Dementia Care

Communication breakdown is a challenge for family caregivers of persons living with dementia. We adapted established theory and scales for computer-assisted behavioral coding to characterize caregiver communication for a secondary analysis. We developed verbal, nonverbal, and breakdown coding schemes and established reliability (κ > .85). Within the 221 family caregiving videos analyzed, 55% of exchanges were interactive, 30% were silence, 4% consisted of talking to self or others, and 8% included a breakdown. An average of 2.4 ( SD = 1.9) breakdowns occurred per observation and were successfully resolved 85% of the time, with 31% being resolved most successfully following only one flag and repair strategy. Caregivers were the primary speakers (67%); their communication preceded most breakdown (65%), and they primarily initiated the repairs after a breakdown (70%). Common repair strategies included clarifications (31%), asking questions (24%), and repeating information (24%). Associations between communication strategies and repair success will provide evidence for caregiver training.