Abstract
BackgroundAs global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC’s unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs’ care-related work goals, and describes how those goals do, or do not, link to technology.MethodsWe employed a sequential mixed-method approach using focus groups followed by an online survey about FCs’ goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants’ responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis.ResultsWe identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients’ changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization.ConclusionsWe conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of ‘burden’ towards a more ‘resilient’ and ‘sustainable’ model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers.
Highlights
As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems
Building on the discussion so far and drawing on other caregiving studies and in-depth findings from our case study, we suggest that a paradigm shift is needed to reframe caregiving from a current deficit frame towards a more empowering frame
The fact that FCs are seeking strategies to enhance and safeguard their care capacities means they are approaching their unpaid work from the perspective of sustainability
Summary
Governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Canada’s population is aging, with a recent estimate predicting that 21% of residents will be over the age of 65 by 2040 [1] As elsewhere, this demographic trend has brought with it both an increase in the prevalence of chronic diseases and disabilities, and a shift on the part of health care systems from acute to community-based care delivery. The Family Caregiver Alliance defines a FC as “any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance to an older person or an adult with a chronic or disabling condition.”. The monetary value of FC’s unremunerated work is estimated at $66.5 billion annually [13]
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