| Understanding the caring capacity of informal networks of frail seniors: A case for care networksPopulation ageing and constraints on public sector spending for older people with long-term health problems have led policy makers to turn to the social networks of older people, or the ‘informal sector’, as a source of long-term care. An important question arising from this policy shift is whether these social networks have the resources to sustain the high levels of care that can be required by older people with chronic health problems. In the face of both dire warnings about the imminent demise of the informal sector, and concurrent expectations that it will be the pillar of community long-term care, it is timely to undertake a critical analysis of the caring capacity of older people's social networks. In this paper we argue that the best way to understand the caring capacity of informal networks of frail older people is to establish their membership and caring capacity. It is useful to make conceptual distinctions between ‘social’, ‘support’, and ‘care-giving’ networks. We argue that transitions of networks from social through support to care roles are likely to show systematic patterns, and that at each transition the networks tend to contract as the more narrowly defined functions prevail. A focus on ‘care networks’, rather than the more usual ‘care dyads’, will move forward our understanding of the caring capacity of the informal sector, and also our ability to forge sound social and health policies to support those who provide care. University of Alberta | Scientific Excellence - Advancing Knowledge | 2003-01-01 | |
| Services provided by informal and formal caregivers to seniors in residential continuing care University of Alberta | Scientific Excellence - Advancing Knowledge | 2001-01-01 | |
| The hidden costs of informal elder careDemographic, socio-economic, and political trends throughout the developed world have contrived to make elder care an issue of utmost policy importance. They also have led to sharp reductions in health and social program expenditures. Policymakers are looking to communities to help meet growing care needs because community care is believed to be better and cheaper than institutional care. However, these beliefs become untenable when costs beyond public sector costs are considered. In fact, informal care carries a number of hidden costs that seldom are considered in health and social policy discussions. This article introduces a taxonomy of the costs of informal elder care, which can be categorized as out-of-pocket expenditures, foregone employment opportunities, unpaid labor, and emotional, physical and social well-being costs. Then, an illustration is provided regarding how the taxonomy can be applied to understanding the incidence, magnitude, and distribution of these costs among stakeholder groups. This taxonomy can help inform ongoing debate about health and social policy reform. University of Alberta | Scientific Excellence - Advancing Knowledge | 1999-09-01 | |
| A taxonomy of the economic costs of family care to adultsA systematic scoping review was conducted to evaluate the current state of knowledge of the economic costs incurred by family caregivers to adults with long-term health problems or disabilities. A narrative synthesis of 126 articles published since 1999 was undertaken to develop a taxonomy of the economic costs experienced by these caregivers. Three broad domains of sources of economic costs for caregivers were identified: employment consequences, out-of-pocket expenses and caregiving labor, with sub-categories within each domain. Economic outcomes were identified for each cost domain. Generation of new knowledge across the three cost domains has been uneven, with disproportionate interest in employment consequences. There are knowledge and methods gaps around all of the domains of care arising from failure to measure, or measure consistently, the costs; failure to account for contexts within which care is delivered; and lack of consistency in specifying care thresholds influencing labor force exit and employment consequences. An expanded research agenda on costs of family care should address cumulative and cross-domain care costs. Links between economic and social and health costs are fertile ground for a comprehensive understanding of the full costs of family care.2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2014-10-15 | |
| Economics of family caregiving to persons with dementiaInvited presentation to the Provincial/Territorial pre-conference symposium on Dementia, Calgary, AB.2.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2015-10-23 | |
| Social consequences of family care to adults: A scoping reviewThe power of social connections is a contemporary focus of research across world regions. Yet evidence of challenges to carers' social relationships remains fragmented and underexplored. We conducted a scoping review of 66 articles to create a state of knowledge review of social consequences of caring. Findings indicate evidence of consequences to relationships with care receivers, with other family members and to broader social networks. Knowledge gaps include changes in relationships across time and in understanding diversity in types and extent of consequences. Evidence challenges assumptions related to caregiving families and to the sustainability of family care.2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2017-06-01 | |
| Norah Keating receives 2017 IAGG Presidential AwardNorah Keating, and AGE-WELL Network Investigator, received an International Association on Gerontology and Geriatrics (IAGG) Presidential Award on July 23, 2017 at the World Congress in San Francisco. The award recognizes Dr. Keating's international research and capacity building activities on the global social issues of ageing.2.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2017-07-25 | |
| Client-centred, community-based care for frail seniorsCompared with nursing home care, community care, which is often viewed in Canada as care at home, is assumed to be best for older adults with chronic disease or disabilities since it is seen as client-focused and less costly. As the number of frail seniors living in the community increases, governments in Canada seek to provide alternate models of nursing home care. As part of a larger initiative meant to increase the scope of community programmes, a demonstration project was conducted in western Canada to evaluate the implementation of client-centred, community-based residential care with individuals requiring nursing-home-level care. The present authors explore two main implementation challenges: whether care that is responsive to individual preferences can be provided to people who cannot assume active decision-making roles; and whether care can be centred in the community if people are living in residential care settings rather than in their own homes. Focus groups were conducted with two key stakeholder groups with varying informal (family members) and formal (programme staff) relationships with residents living in three new programmes. From content analysis, the programmes appeared successful in conveying the importance of recognising residents as individuals and of keeping them connected to the community, but fell short of implementation expectations. Three themes illustrate the challenges: (1) engaging with others in a care partnership; (2) responding to residents' preferences and care needs with limited resources; and (3) maintaining residents' connections with the community. To improve the feasibility of these programmes, some changes could be pursued within existing financial resources. However moderating the funding to bring it somewhat closer to nursing home levels could support the sustainability of community-situated programmes for frail seniors.2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2003-01-01 | |
| Cheaper for whom? Costs experienced by formal caregivers in adult family living programsA current emphasis in Canadian public policy is on community care for frail seniors. Such care is viewed as attractive in part because public costs are lower than for traditional nursing home care. Adult Family Living (AFL) is seen as an exemplar of this community focus. Data from a multi-model evaluation of residential continuing care in western Canada are used to show that while AFL programs have lower public costs than nursing homes, AFL caregivers incur high levels of economic and non-economic costs. We address the question of the sustainability of this approach to community-based residential care in light of the apparent transfer of public costs to AFL caregivers. University of Alberta | Scientific Excellence - Advancing Knowledge | 2005-01-01 | |
| Final commentary for CJA supplemental issue: the hidden costs of care2 page viewpoint, no abstract2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2008-01-01 | |
| Editorial: Families and Aging: From Private Troubles to a Global AgendaEditorial, no abstract University of Alberta | Scientific Excellence - Advancing Knowledge | 2015-01-01 | |
| Social capital and the care networks of frail seniorsSocial capital has been a key framework in conceptualizing the place of social ties in quality of life. Families have not been among groups of interest in social capital research. Yet within the context of research and public policy on aging, the contemporary discourse on families and care is congruent with social capital assumptions. In this paper, we draw on social capital literature to frame our understanding of the social capital inherent in families of frail older adults, and hypothesize their abilities to benefit family members. Data are drawn from Statistics Canada 2002 General Social Survey on Aging and Social Support. University of Alberta | Scientific Excellence - Advancing Knowledge | 2009-01-01 | |
| Social consequences of family care of adults: a scoping reviewThe power of social connections is a contemporary focus of research across world regions. Yet, evidence of challenges to carers' social relationships remains fragmented and underexplored. We conducted a scoping review of 66 articles to create a state-of-knowledge review of the social consequences of caring. Findings indicate evidence of consequences for relationships with care receivers, with other family members and with broader social networks. Knowledge gaps include changes in relationships across time and in understanding diversity in the types and extent of consequences. Evidence challenges assumptions related to caregiving families and to the sustainability of family care.2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2017-01-01 | |
| Aging in rural Canada: a retrospective and reviewResearch on rural aging has developed considerably since publication of the book Aging in Rural Canada (Butterworths, 1991). The purpose of this article is twofold: to provide a retrospective on issues in rural aging from this book, and to review Canadian literature on rural aging since its publication. The review highlights new directions in conceptual definitions of rural, and in issues of social engagement, independence, family and social networks, and rural services and health. Two main research lenses are evident. The marginalization lens focuses on rural seniors with health problems, but has not included those marginalized by poverty or gender. The aging-well lens focuses on contributions and engagement, but has omitted research on social relationships and quality of family interaction. The report includes a call for interrogation about interaction between people and place, and for understanding issues of rural diversity and processes of rural aging. University of Alberta | Scientific Excellence - Advancing Knowledge | 2011-01-01 | |
| Equity matters: doing fairness in the context of family caregivingAlthough family scholars conceptualize caregiving in terms of networks of carers, little attention has been given to equity within these groups. Siblings comprise a prevalent caregiving network of members who feel responsible for parent care, expect to share these responsibilities with each other, and look to each other to evaluate the fairness of their sharing. In this paper, a multidisciplinary approach is used to examine sibling views of equity in relation to disputes over giving parent care and receiving parent assets. A literary perspective is offered through analysis of stepsibling tensions depicted in the novel Family Matters. Real life disputes among biological siblings that have been pursued through the courts are also examined. Issues arising from these examples are then analysed through the lens of legal doctrines of equity. Siblings evaluating fairness undertake careful comparisons of their respective relationships with parents in terms of biological links to parents and type and extent of influence in interactions with parents. University of Alberta | Scientific Excellence - Advancing Knowledge | 2007-01-01 | |
| The Interplay of Risk Factors Associated with Negative Outcomes among Family Caregivers: A Synthesis of the LiteratureThe purpose of this project was to summarize existing knowledge on the risk factors associated with negative outcomes for family and friend caregivers, and to identify knowledge gaps and policy-relevant research questions. The literature reviewed includes Canadian and international research based on large national surveys and in-depth studies of specific samples of caregivers and their experiences. The emphasis is on material published since 2000.
Different risk factors are more salient for different outcomes and populations of caregivers/care recipients. Moreover, it is important to consider the longer-term consequences of caregiving, as well as those that are more immediate to a particular experience or particular care recipient at one point in time. Given both the complexity of the issues and significant knowledge gaps stemming from the lack of data that includes the caregiving context and impacts over time, we have focused on clearly identifying the potential costs (outcomes) that caregivers may experience and the risk factors that are evident in the literature. The review includes examples of the interplay among these risk factors for several different situations including care for seniors with and without cognitive impairment, care for children with disabilities, care for a family member with a mental illness, and (to a lesser extent) care for non-senior adults.
Multiple factors, operating together, affect the nature and intensity of caregiving, and the degree to which caregiving demands become stressors or stressful for caregivers. High caregiving costs result when caregiving demands exceed caregivers’ resources. Exacerbating factors include lack of support from family, friends and formal/professional caregivers, limited personal or family financial resources, high financial costs, stigma, and caregiving of long duration and/or with an uncertain or unpredictable trajectory. Employment-related costs that result in exclusion from or only a marginal attachment to the labour force are most evident for caregivers (notably women) with significant long-term care responsibilities that begin in the early stages of their earning career.
Resources are low for certain caregivers and caregiving situations. These include caregivers with health problems, limited income and savings, and compromised capacities for sustaining fulltime employment. High caregiving demands also increase risk. Especially relevant are increasingly complex care demands for individuals with health conditions or medical problems that require intensive involvement on the part of caregivers; care for individuals with dementia, serious mental illness, deteriorating functional capabilities and problematic behaviours; and long-term, intense caregiving. The gendered impacts of caregiving are also highly visible in the research, and should not be ignored. University of Guelph, University of Alberta | Scientific Excellence - Advancing Knowledge | 2007-01-01 | |
| Characteristics of Family/Friend Care Networks of Frail SeniorsThis paper tests assumptions often made by policy makers and practitioners that networks of family, friends, and neighbours are able to provide sustained care to frail elderly Canadians. Using national survey data, we examined characteristics of the care networks of 1,104 seniors living with a long-term health problem. Care networks were found to vary considerably in size, relationship composition, gender composition, age composition, and proximity, and these network characteristics were found to help explain variations in the types and amounts of care received. As a result, network characteristics that might place seniors at risk of receiving inadequate care (including small size and higher proportions of non-kin, male, and geographically distant members) were identified. These risk factors appear to be poorly reflected in most existing policy. University of Alberta | Scientific Excellence - Advancing Knowledge | 2004-03-01 | |
| Life course trajectories of family careMore than 30 years ago, Elder (1985) theorized multiple life course trajectories in domains such as family and work, punctuated by transitions that create the structure and rhythm of individual lives. We argue that in the context of population ageing, family care should be added as a life course domain. We conceptualise life courses of family care with core elements of ‘care as doing’ and ‘care as being in relationship’, creating hypothetical family care trajectories to illustrate diversity of life course patterns of care. The framework provides a basis for considering influences of care on cumulative advantage/disadvantage for family carers.
As of February 25, 2020 the article has had nearly 2500 abstract views and 400 full text downloads. It was picked up by 5 news outlets and tweeted by 28.
The article was also named one of the top 5 articles published in 2019 in the International Journal of Care and Caring!2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2019-04-13 | |
| IJCC Editors Choice ArticleThe article we wrote, 'Life course trajectories and family care', has been selected as one of the International Journal of Care and Caring's new Editors’ Choice articles, and is featured on their website. https://policy.bristoluniversitypress.co.uk/journals/international-journal-of-care-and-caring/editors-choice 2.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2019-09-05 | |
| Trajectories of family care over the life course: evidence from CanadaAbstract: In the midst of a ‘care crisis’, attention has turned again to families who are viewed both as untapped care resources and as disappearing ones. Within this apparent policy/demographic impasse, we test empirically theorised trajectories of family care, creating evidence of diverse patterns of care across the life course. The study sample, drawn from a Statistics Canadian national survey of family care, comprised all Canadians aged 65 and older who had ever provided care (N=3299). Latent profile analysis
yielded five distinct care trajectories: Compressed Generational; Broad Generational; Intensive Parent Care; Career Care; and Serial Care. They differed in age of first care experience, number of care episodes, total years of care, and amount of overlap among episodes. Trajectories generally corresponded to previously hypothesised patterns but with additional characteristics that added to our understanding of diversity in life course patterns of care. The five trajectories identified provide the basis for further understanding how time and events unfold in various ways across life courses of care. A gap remains in understanding how relationships with family and social network members evolve in the context of care. A challenge is presented to policy makers to temper a ‘families by stealth’ policy approach with one that supports family carers who are integral to health and social care systems.2.4 ATforCC University of Alberta | Scientific Excellence - Advancing Knowledge | 2020-01-08 | |
| Research recap: Beyond "snapshots" to "lifetimes" of family careCo-created in partnership with Nathan Battams at the Vanier Institute of the Family, the research recap highlights the five empirically-derived care trajectories across the life course based on our analysis of the 2012 General Social Survey.
The article is accessible on the Vanier Institute of the Family web site: https://vanierinstitute.ca/resources/research-recaps/
As of February 25, 2020, the article has been accessed 460 times, 267 page views of blog version, and 193 PDF downloads. On Twitter it reached 1,122 and on Facebook it had 27 engagements (likes and retweets).2.4 ATforCC University of Alberta | KTEE - Knowledge Mobilization | 2019-06-25 | |
| International Journal of Care and Caring top 5 most read articles in 2019Our article was among the top five most read in the 2019 volume of International Journal of Care and Caring
Life course trajectories of family care [Open Access]
Authors: Norah Keating, Jacquie Eales, Laura Funk, Janet Fast and Joohong Min
https://doi.org/10.1332/239788219X154730793193092.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2020-02-04 | |
| Norah Keating conferred as Fellow of the UK Academy of Social SciencesBy order of Council, the Award of Fellow of the UK Academy of Social Sciences (FAcSS) was conferred on Dr. Norah Keating for her contribution to social science. Dr. Keating was among 51 new Fellows to the Academy who are so highly accomplished in their fields. Dr. Keating was nominated by the British Society on Gerontology and selected following a robust peer review. As a Fellow, she is one of some 1400 leading professionals in the social sciences, recognized for the excellence of their work and its applications in academia, business and the public sector. 2.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2020-03-26 | |
| Board Director, Vanier Institute of the Family (2020-2023)Dr. Norah Keating was appointed to the Board of Directors and Program Chair, Vanier Institute of the Family (2020-2023).2.4 ATforCC University of Alberta | Scientific Excellence - Leadership | 2020-01-01 | |
| Sustainable Care: Theorising the wellbeing of caregivers to older personsThe term ‘care crisis’ is invoked to denote chronic system failures and bad outcomes for the people involved. We present a comprehensive wellbeing framework and illustrate its practicality with evidence of negative outcomes for those who provide care. We find evidence of substantial material and relational wellbeing failures for family carers and for care workers, while there has been little interest in carers’ views of their ability to live the life that they most value. Understanding and improving wellbeing outcomes for carers is an essential component of sustainable care, which requires the wellbeing of the different actors in care arrangements.2.4 ATforCC University of Alberta, University of Sheffield | Scientific Excellence - Advancing Knowledge | 2021-11-01 | |
| Value of Family Caregiving in CanadaBased on analysis of the 2018 General Social Survey on Caregiving and Care Receiving (the most recent national survey available), we created a two-page infographic that highlights the proportion and number of caregivers in Canada, the aggregate amount of time they spend providing care (5.7 billion hours), the economic value of family care work ($97.1 billion or 2.8 million FTE workers), and the magnitude of caregivers' contributions to the Care Economy. Caregivers' aggregate time and value by province were also included.
Release of this infographic was coordinated with an article in The Conversation Canada, and shared in advance with our industry, community and government partners so they could use the findings and promote it across their respective networks and social media channels (including AGE-WELL, CanAge, Canadian Home Care Association, Caregivers Alberta, Family Carers Alberta, MatchWork, Vanier Institute of the Family, University of Manitoba and Sustainable Care in the UK).
Partners have commented on how valuable this resource is, and how often they reference it in their advocacy work. In the first month, the infographic had 293 hits from Canada, France, the USA and seven other countries. Organizations and individuals who retweeted the post during the first week included: Canadian Centre for Caregiving Excellence, National Institute on Ageing, and other influencers. The infographic continues to garner lots of attention, having 83 hits so far in April.
The infographic is available on the University of Alberta RAPP website (rapp.ualberta.ca/snapshot-of-aging) here: bit.ly/3133yLV
AWCRP-2020-16 University of Alberta | KTEE - Knowledge Mobilization | 2022-02-21 | |
| Disability, Family Care, and Inclusive WorkplacesWork Family Research Network Conference in New York City, June 23-25, 2022
Discussion roundtable organized by Lisa Maureen Stewart, California State University, Monterey Bay; Claudia Sellmaier, University of Washington; Eileen M Brennan, Portland State University.
Recent research has examined the complex situation of workers affected by their disabilities, by providing care for family members having disabilities or health problems, and by seeking full inclusion in their workplaces. As we learn more about both the challenges and opportunities faced by these diverse workers, care responsibilities that affect their engagement in the workplace, and organizational practices that promote full inclusion, new questions arise that are crucial to discuss. Members of WFRN’s Networking Community on Disability, Work, and Family have identified compelling and current questions that need to be considered to better improve about those workers with disabilities or with exceptional care responsibilities, and the response of the organizations that employ them. We are proposing to conduct a roundtable discussion that will consider major questions being explored in current research studies which address the key areas of disability, family care, and workplace inclusion. Each member of our team of 10 discussants from Canada, Croatia, United Kingdom, and United States will identify questions based on their recent research findings. Our roundtable discussion also aims to influence future investigations, shape their emerging questions, and reveal policy issues that flow from current studies and need to be informed by new research. Areas to be discussed include: • What are the criteria for disclosure at work of information regarding the worker’s disability or a family member’s need for disability or special health care? • What community resources and adjustments are effective in assisting workers with disabilities or exceptional care responsibilities to maintain employment and their well-being? • How have COVID-19 and the associated shut-downs affected families with exceptional care responsibilities? • How can immigrant workers with disability concerns be supported as they simultaneously deal with work demands and family responsibilities? • Are there generational differences in the experiences of caregivers who have provided disability care to family members? • What cultural and identity differences affect the full inclusion of workers with disabilities, or who provide disability care, within their communities and workplaces? • What are the sources of inequity in the allocation of care work by gender, income, living arrangements, and generational cohort? • As employees strive for full inclusion within their workplaces, how can organizations better develop policies and practices that make it possible for those with disabilities or exceptional care responsibilities to reach full inclusion and more positive work-family spillover? • Which policy levers can be used to more fully integrate people with disabilities and/or exceptional care responsibilities into the workforce and deal with equity issues for those providing unpaid care? • What are the most pressing research issues needing further exploration to help workers with disabilities or exceptional care responsibilities achieve the work and family outcomes they most value? AWCRP-2020-16 University of Alberta | Scientific Excellence - Advancing Knowledge | 2022-06-23 | |
| Valuing Family Caregivers' Contributions to the Care EconomyAWCRP-2020-16 University of Alberta | Scientific Excellence - Advancing Knowledge | 2023-07-04 | |
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