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Collecting Information on Caregivers’ Financial Well-Being: A Document Review of Federal Surveys in Canada

Collecting Information on Caregivers’ Financial Well-Being: A Document Review of Federal Surveys... Population-based surveys conducted by governments inform strategies concerning emergent areas of policy interest. One such area is unpaid caregiving in the context of an aging population. In the Canadian and global contexts, research suggests a need for public financial support to mitigate financial risks of caregiving. In this document analysis, we reviewed 17 federal surveys since 2005 to understand how caregiving-related information is captured. We found that caregiving-related questions were largely derived from two surveys, the General Social Survey and the Canadian Community Health Survey. However, gaps exist concerning questions related to estimates of private care expenditure, and the impacts of older adult caregiving across domains of financial risk (income, productivity, and healthcare utilization). Addressing these gaps, either through revising existing surveys or a new national survey on unpaid caregiving, may improve meaningful assessments about risks and impacts of caregiving, which may better inform public strategies that offset these risks. Keywords caregiving, policy, decision-making, social security, financial risk, document review, Canada What this paper adds � Population data collected by public (government) surveys informs public policy on emerging areas of policy interest � As the global population ages, there is growing policy interest in ways to support unpaid caregivers; yet, in Canada specifically, the challenges of unpaid caregiving, particularly financial challenges, are poorly captured on existing public surveys Applications of study findings � Governments (in Canada and internationally) should consider including questions concerning financial challenges associated with unpaid caregiving on national surveys � A fulsome understanding of financial risks of caregiving (e.g., out-of-pocket care–related expenditure and impacts on income and employment status) may better inform public policies to offset these risks � Methods undertaken to review public documents (government surveys) are innovative and may inform similar studies concerning gaps in public data collection in different contexts (e.g., government, non-governmental organizations, and academia) Introduction Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada In 2020, expenditure on research and development represented North American Observatory on Health Systems and Policies, University of 1.69% of gross domestic spending in Canada (OECD, 2022). Toronto, Toronto, ON, Canada Although Canada falls behind other OECD members, including Corresponding Author: the United States (U.S.) (3.07%) and the United Kingdom Husayn Marani, Institute of Health Policy, Management and Evaluation, Dalla (U.K.) (1.76%), the federal government of Canada maintains a Lana School of Public Health, University of Toronto, 155 College Street, 4th strong commitment to research, particularly public (govern- Floor, Toronto, ON M5T 3M6, Canada. ment) data collection. In 2020, over half a billion dollars was Email: husayn.marani@mail.utoronto.ca 2034 Journal of Applied Gerontology 41(9) spent on public data collection, an expenditure that is projected particularly in certain geographies such as rural areas (Kitchen to increase by 16% next year (Statistics Canada, 2020a). et al., 2011). Other risks include caregivers exiting the formal, or In Canada, collecting and disseminating public data is a paid, labor market, or modifying work hours and taking leaves federal responsibility, legislated by the Statistics Act (1985). of absence from work to provide unpaid care (Jacobs et al., Public data is collected nationally through a comprehensive 2013; Lilly et al., 2010; Stanfors et al., 2019), which is com- network of surveys conducted by Statistics Canada, a federal monly experienced by caregivers in the context of “intensive agency. Although data from non-governmental organizations caregiving”,such asend-of-lifecare(Williams et al., 2014). and academic research may inform public policy, public data Caregivers may also experience a reduction in overall leisure collected directly by governments has an important role in and self-rated health (Stanfors et al., 2019). shaping public policy decision-making, including raising Despite these analyses, important gaps remain concerning awareness of issues, identifying target groups for specific policy the financial risks of caregiving. For example, increasingly, interventions, informing the development of new policies, and local and international scholarship is demonstrating that unpaid justifying ongoing policy intervention across different public caregivers are incurring costly care-related expenses out-of sectors (Hastak et al., 2001; Laws et al., 2013). In the Canadian their own pocket, including expenses for prescription medi- context, information collected by Statistics Canada informs cation, supplies, housing, and transportation (Han et al., 2012; federal, provincial and territorial policy and programming, Shooshtari et al. 2017; You & Kobayashi, 2011). However, monitoring and surveillance, agenda setting, and financial little is known about how these expenses manifest as financial benchmarks concerning employment and income, and is also risk based on analyses of government datasets. We know from used by researchers, analysts, and planners in both public and empirical scholarship that cost-prohibitive expenses may be private settings (Statistics Canada, 2009). forcing key trade-offs between other important expenses such Surveys conducted by Statistics Canada are conducted on a as food (Law et al., 2018). There is also a concern that stressors cyclical basis (e.g., annually or every 5 years) to capture data on associated with paying for care-related expenses may con- emerging topics of national research and policy interest. In recent tribute mental and physical health issues thereby increasing years, unpaid caregiving has become one such area. Unpaid caregivers’ utilization of cost-prohibitive health services caregiving refers to provision of medical, emotional, and/or (Chambers et al., 2016). We also know how caregiving may psychological support over any duration of time for someone interfere with gainful employment, thereby compromising (e.g., family member, friend, or neighbor) living with a health income-generating potential and the ability to pay for im- condition or limitations in activities of daily living (“ADLs”), portant care-related expenses (Longacre et al., 2016). including bathing, toileting, dressing, eating, transferring (e.g., The literature described above points to the importance of from chair to bed), and mobility (Arriagada, 2020). Across providing supports to caregivers; however, gaps in the lit- Canada, there were 7.8 million unpaid caregivers in 2018, rep- erature call into question the conclusions we can draw from resenting 25% of the population over 15 (Arriagada, 2020). government surveys about the financial risks of unpaid Alongside similar patterns observed in the UK, Belgium, and caregiving. In the context of this paper, we refer specifically Austria, this represents one of the highest rates across OECD to public (government) support. Although some public countries (OECD, 2021). The number of unpaid caregivers in caregiving benefits exist, including income-tested tax ex- Canada and worldwide is expected to rise, in part, due to an aging emptions under the Disability Tax Credit (Government of population and a growing desire to age independently at home Canada, 2021a), and Family Caregivers Benefits for em- rather than facility–based long-term care (Huber, 2021; March of ployed individuals who take time off work (between 15 and Dimes Canada, 2021). These sentiments have been further 26 weeks) to provide care (Government of Canada, 2021b), stimulated by the COVID-19 pandemic (National Institute on these may not be wholly inclusive of all caregivers, especially Ageing, 2020a), the first wave of which saw 80% of deaths due to those who are not employed and those providing care beyond COVID-19 occurring in long-term care facilities (Webster, 2021). the maximum eligibility period. Similar deficits in financial Several analyses of unpaid caregiving using datasets support (e.g., cash allowances and tax credits) in contexts such from government surveys consisting of short supplements as the UK and US have been observed (Pattyn et al., 2021). on unpaid caregiving (namely, the Canadian Community Accordingly, there is an increasingneedto improve the supports Health Survey [CCHS] and the General Social Survey available to unpaid caregivers to offset the financial risks of [GSS]) have been conducted in the past decade. Findings caregiving and the impact of these risks on caregivers beyond expose a range of risks associated with unpaid care provi- the departure from formal (paid) labor force to provide care sion, particularly financial risks. We interpret financial risk (National Institute on Ageing, 2020b). Indeed, supporting un- to include both the magnitude of private expenditure on care paid caregivers has important health system implications, as it (care expenses paid out-of-pocket), and the impacts of these keeps care recipients out of costly acute care and residential expenses across various domains of financial risk, including long-term care facilities, which is more cost-effective. productivity, income earning potential, and healthcare utilization Hence, information obtained through government-administered (Hacker, 2004). Basedonthese analyses, financial risks may be surveys could help to inform caregiver groups who may need help rooted in deficits in publicly subsidized home care provision mitigating financial risks, and therefore, better improve the design Marani and Allin 2035 of policies to support unpaid caregivers and mitigate the financial subject areas were reviewed for eligibility: “Families and House- risks of caregiving. Thus, in this paper, we explore the extent to holds” (n = 6 surveys); “Health” (n =64); “Income, pensions, which federally administered surveys capture information on spending, and wealth” (n =27); “Labor” (n =74); “Seniors and unpaid caregiving across Canada. Specifically,weseektoun- aging” (n = 5); and “Society and community” (n =15). derstand whether questions and response options on existing Akin to processes in collecting literature using databases survey instruments consider the full range of financial risks of for traditional literature reviews (Arksey & O’Malley, 2005), unpaid caregiving (including care-related expenses) and their we determined eligibility of surveys to be extracted by in- impact among unpaid caregivers. dependently conducting then comparing results from a manual search within each survey instrument for questions containing standard care- or caregiver-related keywords, Methods including “care,”“caregiver,”“care provider,”“family,” To address our research aim, we conducted a document review of “family member”, “family worker,”“assistance,”“unpaid,” population-based, federal survey instruments—and the survey “voluntary,” or “informal”. These keywords have been used questions therein—conducted by the Canadian federal government in seminal literature reviews in this topic area (Queluz et al., since 2005. We did not analyze completed survey datasets. 2020) and reflect best practices in inclusive language in Document analyses give voice and meaning around an assessment caregiving-related research (Stall et al., 2019). If any of these topic (Bowen, 2009). Documents reviewed may include public keywords appeared in any question, the survey instrument records (e.g., policy manuals or strategic plans), personal docu- was included in this review. ments (e.g., e-mails, social media posts, first-person accounts), and physical evidence within study settings (e.g., flyers or handbooks) Extraction of Survey Questions and Analysis (O’Leary, 2014). In this document analysis, we apply approaches to reviewing documents to publicly administered surveys. To do this, The extraction of survey questions from included survey we draw on O’Leary’s (2014) considerations for reviewing doc- instruments was completed by HM and validated by SA and uments and conducting textual analysis where possible. consisted of two elements. First, we extracted details con- We focussed specifically on federal surveys as population- cerning the survey instrument itself, for example, its purpose based data collection is a federal responsibility and provinces and target audience. These details were derived from the and territories routinely use federally collected data to inform detailed description of the survey instrument on the Statistics local decision-making. While some Canadian provinces and Canada website, which we adapted for brevity. Then, we territories also routinely collect data from their residents in extracted specific survey questions by reviewing all questions surveys, the focus of our study was on federal government in each included survey instrument and coding relevant surveys given their capacity to shape policy across the country questions deductively based on an a priori conceptual un- (Hastak et al., 2001; Laws et al., 2013) and to narrow the scope derstanding of the financial risks of caregiving. Questions of this paper, but we recognize other potential sources of na- were coded across three broad categories: (1) the [financial] tional data exist, including from non-governmental organiza- risks of caregiving, including sub-categories such as (a) tions and academic research. estimates of direct private (out-of-pocket) care expenditure, (b) sources of financial support, and (c) general spending behaviors); (2) consequences of unpaid care provision across Eligibility and Inclusion specific domains of financial risk, including (a) income, (b) O’Leary (2014) suggests developing a list of texts to explore employment and productivity, and (c) health and health care; and considering how to access these texts. For the purpose of and (3) the determinants, or predictors, of these risks as this analysis, this meant deciding which survey instruments described in relevant literature, including (a) dwelling, or the we should extract questions from, and from where to locate living arrangement of caregiver and care recipient, (b) care these survey instruments. All survey instruments are housed provision, or the type and extent of care provided and to on the “Surveys and statistical programs” page on the Sta- whom, (c) employment status of survey respondent, and (d) tistics Canada website (statscan.gc.ca) under “Results and personal income and income sources (Dosman & Keating, documentation of surveys and statistical programs.” In this 2005; Guerriere et al., 2008; Leong et al., 2007). We excluded analysis, questions from the most recently circulated survey baseline demographic questions consistently asked across all within the past 15 years were extracted. Recently inactive household surveys (e.g., gender, ethnicity, age, and rela- surveys from the same time period were still included in this tionship status with care recipient), but recognize these, too, review, if salient, in the event that the types of questions asked may inform patterns of financial risk. differ from any active surveys. Statistics Canada surveys cover 31 subject areas. Subject areas Results are not mutually exclusive as surveys may fall under multiple subject areas. Based on our overarching interest in unpaid care This document analysis was conducted in December 2020. across the domains of financial risk, surveys from the following At this time, Statistics Canada had a collection of 412 2036 Journal of Applied Gerontology 41(9) Table 1. Summary of Included Survey Instruments. Survey Name Status (Active or Inactive) Last Circulated Subject Areas Reference Survey of household Active (Annual) Jan 2, 2019–Feb Expenditures; dwelling characteristics; Statistics spending (SHS) 14, 2020 household equipment; income Canada, 2021b General social survey Active (every 5 Years) Apr 3–Dec 28, Care and social support; disability; health and Statistics (GSS)—caregiving and 2018 (cycle 32) well-being; society and community Canada, care receiving 2018a GSS—family Active (every 5 Years) Feb 1, 2017–Nov Aboriginal peoples; education, training and Statistics 30, 2017 learning; ethnic diversity and immigration; Canada, families, households and housing; health 2019 GSS—volunteering and Active (every 5 Years) Sept 4, 2018–Dec Labor; society and community; unpaid work; Statistics participating (GVP) 28, 2018 (cycle volunteering and donating Canada, 33) 2015 Canadian community Active (every 2 years) Jan 2–Dec 24, Disease and health conditions; health; health Statistics health survey (CCHS) 2020 care services; lifestyle and social conditions; Canada, mental health and well-being 2016 CCHS—Healthy aging Inactive (occasional Dec 1, 2008–Nov Health; health and disability among seniors; Statistics supplement 30, 2009 lifestyle and social conditions; population Canada, aging; population and demography; seniors 2008 Canadian health survey on Active (occasional) Jan 2–Dec 24, Diseases and health condition; health; health Statistics seniors (CHSS) 2020 care services; lifestyle and social conditions; Canada, mental health and well-being 2020d Participation and activity Inactive (replaced by Oct 30, 2006–Feb Disability; equity and inclusion; health; society Statistics limitation survey— Canadian survey on 28, 2007 and community Canada, adults, 15 and over disability) 2007 (PALS) Canadian survey on Active (every 5 years) Mar 1, 2017–Aug Disability; equity and inclusion; health; society Statistics disability (CSD) 31, 2017 and community; work, income and spending Canada, 2018b National household survey Inactive (one-time) May 10, 2011–Aug Aboriginal peoples; education, training and Statistics (NHS) 24, 2011 learning; ethnic diversity and immigration; Canada, families, households and housing; income, 2011a pensions, spending and wealth; labor; languages; population and demography; society and community Survey on living with Inactive (one-time) Sept 9, 2011–Mar Diseases and health conditions; health Statistics neurological conditions 21, 2012 Canada, in Canada (SLNCC) 2011b Employment insurance Active (annual, 4 5-week Apr 17, 2018–Feb Employment insurance, social assistance and Statistics coverage survey (EICS) collection cycles) 15, 2019 other transfers; labor; non-wage benefits Canada, 2020c Survey of older workers Inactive (one-time) Oct 19, 2008–Dec Labor; work, transitions and life stages Statistics 1, 2008 Canada, Labour force survey (LFS) Active (monthly) Apr 2020 Employment and underemployment; hours of Statistics work and work arrangements; industries; Canada, labor; occupations; unionization and industrial 2021a relations; wages, salaries and other earnings Canadian survey of Inactive (one-time) Aug 18, 2013– Household, family and personal income; income, Statistics economic well-being Oct 7, 2013 pensions, spending and wealth; low income Canada, (CSEW) and inequality 2013a Survey of labour and Inactive (formerly annual. Jan 1, 2011–mid- Families, households and housing; household, Statistics income dynamics (SLID) Since merged with Mar (over 6- family and personal income; income, pensions, Canada, Canadian income year period) spending and wealth; labor; low income and 2013b survey) inequality Survey of financial security Active (occasional) Sept 8, 2016–Dec Household assets, debts and wealth; income, Statistics (SFS) 8, 2016 pensions, spending and wealth Canada, 2020b Marani and Allin 2037 active and 384 inactive (no longer in circulation) surveys. Based on the description of these surveys, it appears that With the exception of the long-form census, all active and one of the 17 surveys—the GSS on Caregiving and Care inactive subject-specific surveys from 2005 onward were Receiving—is used to develop policy and programming for considered for this review to capture the most recent unpaid caregivers, but this description does not explicitly versions of all possible survey instruments currently in identify how survey results from previous cycles have in- circulation or now inactive. Following screening for eli- formed policy and program development. gibility and the removal of outdated survey versions, 17 survey instruments were included in this analysis, sum- Description of Survey Questions marized and referenced in Table 1, and further described in Supplemental Appendix A. We then analyzed the questions within these 17 survey in- struments to understand how survey instruments explored the financial risks of unpaid caregiving. Supplemental Appendix Description of Survey Instruments B synthesizes relevant questions across all survey instru- All included surveys were cross-sectional in nature (no panel ments, which we summarized and adapted for brevity. surveys were included in our search). Six survey instruments Questions may directly or indirectly concern the provision of are inactive because they were circulated only one-time, or unpaid care for someone with a health conditions or limi- amalgamated with, or replaced by, another instrument. One tations in ADLs. Questions may also target unpaid caregivers survey instrument, the GSS, is conducted annually but re- or otherwise. Questions were organized (coded) across the flects a different theme every year, which is conducted on a 5- categories described in our Methods. In some cases, the year cyclical basis. For this reason, three versions of the GSS relevance to unpaid caregiving is not obvious in the question are included in this review, representing three thematic itself, but in response options. In such cases, relevant re- areas—“Caregiving and Care Receiving,”“Family,” and sponse options are italicized in Supplemental Appendix B.As “Volunteering and Participating.” we were broadly interested in the types of questions asked Statistics Canada defines a dwelling as distinct physical across all survey instruments, and there is duplication in living quarters with a private entrance outside, and a household questions across federal surveys, we did not aim to identify is any person or group of persons living within a dwelling from what survey instruments each question was derived. (Statistics Canada, 2020e). For the most part, all surveys are Table 2 presents a tally of survey instruments that consist targeted toward all households. Some surveys specifically of at least one question corresponding to a category described target respondents of other household surveys. For example, in our Methods. Across all categories, there were 13 instances participants of the Labour Force Survey (LFS) are sub-sampled across two survey instruments where at least one question is to participate in a variety of related surveys, including the asked of an unpaid caregiver respondent about the provision Survey of Older Workers and the Survey of Financial Security. of unpaid care for someone living with a long-term health Although the GSS on Caregiving and Care Receiving the condition or limitations in ADLs (■). Most such questions Healthy Aging Supplement of CCHS include short modules were asked in the GSS survey on Caregiving and Care Re- targeting unpaid caregivers, no survey solely targets unpaid ceiving, introduced for the first time in 2018, and another, caregivers. Thus, survey respondents may either be care re- now inactive, one-time Healthy Aging supplement of CCHS. cipients, or caregivers responding on their own behalf or as a Among these questions, there is interest in the type and proxy for a care recipient living within the same household. duration of care provided by unpaid caregivers, the broad cost Surveys span a number of subject areas including income, implications (e.g., total out-of-pocket costs of care across all social support, education, labor, and workforce participation, care provided), and employment implications. health, and family and living arrangement. Participation in all We also included questions that may be relevant to surveys is voluntary with the exception of the LFS which is caregiving (as a predictor of financial risk) but do not ex- mandatory under the Statistics Act (Statistics Canada, 2021a). pressly target unpaid caregivers. Across all categories, there Based on the data extracted concerning stated objectives of were 15 instances across eight survey instruments of at least surveys, survey data may be used for a variety of purposes, one question (or response option) concerning the provision of including adjusting payments by or benefits from various social unpaid care (□). In these cases, the question was framed in the programs, calculating financial benchmarks (e.g., Consumer context of care received and were largely targeted toward Price Index and Gross Domestic Product), calculating spending respondents who are recipients of care or assistance for a behaviors at the individual and household level, identifying health condition. For example, several surveys (CCHS, needs across specific groups (e.g., older adults and low-income CHSS, CSD, and SLNCC) ask care recipients about the type communities), for general monitoring, surveillance and evalu- of care they receive (personal care, transportation, schedul- ation, and to assist in future decision-making concerning policy ing, etc.), which may be provided by an unpaid caregiver. initiatives (e.g., concerning employment rate). This information helps to understand the prevalence of 2038 Journal of Applied Gerontology 41(9) Table 2. Tally of Questions Captured Across all Included Survey Instruments. Predictors [Financial] Risks of Caregiving Consequences of Caregiving Estimates of Personal General Financial monetary costs income and spending support (direct, private) of Employment/ Health and Care Employment/ income behaviors available for caregiving/care Income-related productivity quality of life Survey Name Dwelling provision activity status sources (care-related) caregiving receiving consequences consequences consequences Survey of householdCC C C C spending (SHS) ■■ ■ ■ ■ ■ ■ General social survey (GSS)— caregiving and care receiving GSS—family CC s C ss C GSS—volunteering CC C C CC and participating (GVP) Canadian community C □ CC C □ C health survey (CCHS) ■■ ■■ ■ ■ CCHS—Healthy □□ aging supplement Canadian health C □ C survey on seniors (CHSS) Participation and □□ □ CC C C activity limitation survey—adults, 15 and over (PALS) Canadian survey on □ CC disability (CSD) National household C s survey Survey on living with C □□ CC C □ neurological conditions in Canada (SLNCC) Employment s CC C ss s insurance coverage survey (EICS) (continued) Marani and Allin 2039 Table 2. (continued) Predictors [Financial] Risks of Caregiving Consequences of Caregiving Estimates of Personal General Financial monetary costs income and spending support (direct, private) of Employment/ Health and Care Employment/ income behaviors available for caregiving/care Income-related productivity quality of life Survey Name Dwelling provision activity status sources (care-related) caregiving receiving consequences consequences consequences Survey of older □ C C □ workers Labour force survey □ (LFS) Canadian survey of C C economic well- being (CSEW) Survey of labour andCC C C C s CC income dynamics (SLID) Survey of financial CC s C security (SFS) Notes:(■) denotes at least one question that concerns the provision of unpaid care for someone living with a long-term health condition or limitations in activities of daily living that is asked specifically of a respondent who may be an unpaid caregiver (i.e., survey has a caregiving module). (□) denotes at least one question (and/or response option) that concerns the provision of unpaid care for someone living with a long-term health condition or limitations in activities of daily living, but the question does not explicitly target an unpaid caregiver (e.g., targeted at a care recipient where question is framed in the context of care received). (C) denotes at least one general question (unrelated to caregiving and not asked of an unpaid caregiver or care recipient), but may be relevant to caregiving in that question could apply to, or be adaptable to an unpaid caregiving context. (s) denotes at least one question that concerns the provision of childcare only (survey respondent is a parent/guardian). 2040 Journal of Applied Gerontology 41(9) unpaid care, the characteristics of the care being provided, programs such as the Family Caregivers Benefit(Government and the carer. of Canada, 2021b)—are informed by the most up-to-date data. Also included on this tally are general questions that are Relatedly, although some surveys ask respondents whether or agnostic to caregiving, but, based on an a priori under- not they use public financial support, questions concerning the standing of the caregiving experience, may be relevant in specific type of support and extent and magnitude of support are analyses of these datasets (C). Across all categories, there missing, limiting our understanding of whether support pro- were 50 such instances across 14 survey instruments. grams like the Family Caregivers Benefit are effective at off- Questions largely concerned predictors of the caregiving setting financial hardships of caregiving. experience; for example, employment status, personal in- Furthermore, private expenditure data, largely derived from come, and spending behaviors. These questions are not SHS, is used to inform Canada’s National Health Expenditure specific to the caregiving experience, but have been noted Framework, but, as it stands, it is impossible to know the extent here because they may be adapted to fit a caregiving context. to which caregivers themselves incur private health expendi- For example, questions concerning outstanding spending ture in the provision of unpaid care as SHS does not explicitly behaviors (bills and debts, current mortgages on assets, target unpaid caregivers. Again, this limits our understanding general reliance on credit cards to meet regular expenses, etc.) of the financial impacts associated with unpaid caregiving, and are noteworthy if caregiving contributes to such debts, or if may limit policy decisions concerning financial risk protection, such debts compromise funds available to pay for care. including compensation schemes and grants. Lastly, we included 10 questions across five survey in- In terms of income, and employment and productivity, struments concerning the provision of childcare where the LFS asks one question about the main activity of respondents survey respondent is a parent or guardian (Ο). Such questions who report not being in the formal labor force. In this could be adapted for unpaid caregiving of someone living question, all responses are informal (unpaid) activities, in- with a health condition or limitations in ADLs. cluding childcare, older adult care, household work, and unpaid internship. Generally speaking, however, surveys related to labor and employment (see Table 1) do not include Discussion questions on informal work, and questions concerning The purpose of this analysis is to broadly understand what is earnings and earning potential are about formal labor par- being asked about the provision of unpaid care on ticipation; other than time spent across all activities, the government-administered survey instruments in Canada with monetary value of informal, or unpaid, labor is not measured. a focus on national surveys administered by Statistics Can- Echoed in relevant scholarship from the U.K. (Aldridge & ada. Our review found 17 survey instruments that related, in Hughes, 2016), this raises a broader question of how Canada some way, to unpaid caregiving. Of these, 10 asked questions conceptualizes the informal labor workforce, and the extent to specifically about the experiences and risks of caregiving which informal labor should be captured in labor-specific irrespective of target audience. And of these, only two in- instruments of data collection. This is important because struments expressly targeted unpaid caregivers—the GSS on unpaid caregivers represent an increasingly growing segment Caregiving and Care Receiving and the CCHS Healthy Aging of the informal workforce worldwide (Broese van Groenou & Supplement, neither of which are currently active or in cir- De Boer, 2016), and unpaid caregivers of those living with culation. The majority of survey instruments, while not ex- complex health conditions like dementia—the rate of which plicitly targeting respondents who are unpaid caregivers, is growing in Canada—are seeing themselves departing the present questions that are useful in understanding predictors formal workforce to accept unpaid care responsibilities of financial risk if any respondents are unpaid caregivers, and without the workplace and government benefits afforded to could be adapted to fit the caregiving experience. parent caregivers (Black et al., 2010; Longacre et al., 2016). Across surveys, there are notable gaps in questions con- On this note, surveys appear to present a bias toward leaving cerning financial risks of unpaid caregiving. For example, while formal employment to care for infants and young children. PALS is specifically concerned with non–reimbursed out-of- Few surveys are concerned specifically with productivity and pocket care expenses, it is no longer active and its successor, income implications of caring for those living with health CSD, does not ask questions concerning out-of-pocket ex- conditions or limitations in ADLs, a highly heterogenous penditure. While surveys such as the GSS on Caregiving and population characterized by very diverse caregiving activities Care Receiving ask unpaid caregivers to estimate total out-of- and support needs (Young et al., 2020). pocket care-related expenditure, little is known about what Lastly, while we know income is a determinant of health, constitutes total expenses, limiting targeted public approaches this connection is not reflected in any health- or quality of life- to minimize specific expenses that may be most cost- related questions targeting unpaid caregivers specifically— prohibitive. This calls into question whether current policy for example, the extent to which care-related losses in income and programming on unpaid care—for example, tax exemp- (departing the formal labor force) may have compromised the tions under the Disability Tax Credit (Government of Canada, ability to pay for personal health expenditure, which has been 2021a), and generosity of coverage in financial risk protection observed elsewhere (Broese van Groenou & De Boer, 2016). Marani and Allin 2041 While literature is scant in both the Canadian and inter- From a methodological perspective, the adaptation of national contexts concerning how government surveys ask document review methods to analyze federal government about caregiving, previous scholarship has observed that survey instruments is innovative and could inform similar persons receiving long-term care and their caregivers are not studies in other settings across different orders of government. well-represented in national surveys administered by Sta- Indeed, unpaid caregiving is a globally ubiquitous topic area tistics Canada (Hirdes et al., 2018). Outside Canada, research and insights from this study could give rise to similar studies in from the U.K. suggests that, while the U.K. Census and other contexts. A variety of trends across Canada and abroad Family Resources Survey do include questions on caregiving, suggest a greater need for governments to publicly collect the monetary value of caring is poorly captured because information that elucidates the experiences of unpaid care- caregiving is a personal activity that generally takes place in givers and the relevant impacts, particularly the financial the home, whereas government surveys are concerned with impacts. One important trend is the shift from institutional to measuring economic activity in specific markets and public community-based or home care through “Aging-at-Home” or sectors, such as the labor market (Aldridge & Hughes, 2016). “Aging-in-Place” strategies, occurring in jurisdictions across Similar findings are echoed in the U.S., where there is no several countries with national health insurance systems such uniform approach in national surveys to ascertain the number as Canada, Australia, and the U.K. (Australian Government of unpaid caregivers, their attributes and services provided, Department of Health, 2021; Government of Ontario, 2010; thereby compromising public policy regarding unpaid Sixsmith & Sixsmith, 2008). These strategies were developed caregiving for older adults (Giovannetti & Wolff, 2010). to shift the economic burden of the aging population away from publicly funded acute and long-term care systems. In- advertently, however, this shift may be imposing greater care Implications and financial responsibilities on unpaid caregivers, which is Accordingly, this study has important implications on re- inconsistent with perspectives on social welfare distribution in search, policy and practice both in Canada and internation- welfare states that otherwise accept the responsibility to pro- ally. Beyond the way results from government surveys have vide (publicly pay for) health and social care. Hence, from a been shown to shape best practices in protecting caregiver policy and practice perspective, collecting precise information employers (AARP, 2016), we know that government surveys on the implications of this shift on caregivers is important in may inform the policy-making process, including agenda determining whether the state should intervene in better pro- setting (Hastak et al., 2001; Laws et al., 2013). For example, tecting caregivers from any financial risks of caregiving. findings from social surveys administered by the federal government inform debates in public policy about important Limitations policy topics such as pension reform, which can translate directly into new or revised policies (McDonald, 1997). In the We focussed on government data collection on the financial risks of caregiving, but note that academia, industry and non- context of aging and caregiving, demographic trends in governmental organizations have vested interests in this topic chronic disease prevalence captured by CCHS revealed over area. Future lines of inquiry could review how data is col- 700,000 Canadians living with Alzheimer’s Disease or re- lected in these sectors and how it is used to develop policies lated dementia, a statistic that spurred the passing of Bill and best practices that offset the financial risks of caregiving. C-233—An Act respecting a national strategy for Alzheimer’s We also excluded baseline demographic questions common disease and other dementias, in 2017. across all surveys, but recognize that demographic questions With the federal government budgeting $41.3 million over such as relationship between caregiver and care recipient, 6 years for Statistics Canada to improve data infrastructure living arrangement, age, and household income are important and data collection on health care, chiefly supportive care, predictors of financial risk. primary care and pharmaceuticals (Department of Finance Canada, 2021)), there may be value in orienting future re- search and/or policy action on developing a specific survey Conclusion on unpaid caregiving, or a regularly occurring, enhanced version of GSS on Caregiving and Care Receiving, that fills We found that the federal government of Canada is asking many gaps identified in this study. In particular, we recommend of the right questions concerning unpaid caregiving. However, due addressing gaps concerning out-of-pocket care expenditure, to the increased role of unpaid caregivers, and to inform policies including assistive devices and formal (paid) home care and programs, the Canadian government should consider more support, how caregiving has impacted income-generating focused and frequent surveys that assess the financial risks and potential, the extent to which public supports may have impacts of caregiving on unpaid caregivers and their households. offset risks to gainful employment, and financial risk has In a post–COVID-19 world where we may see a rapidly in- manifested during COVID-19, which exacerbated the creasing role of unpaid caregivers, results of this study may be stressors of caregiving, including maintaining full-time em- useful not only in Canada but elsewhere where unpaid caregivers ployment (Seedat & Rondon, 2021). will represent a large segment of the informal workforce. 2042 Journal of Applied Gerontology 41(9) Giovannetti, E. R., & Wolff, J. L. (2010). Cross-survey differences in Declaration of Conflicting Interests national estimates of numbers of caregivers of disabled older The author(s) declared no potential conflicts of interest with respect adults. Millbank Quarterly, 88(3), 310–349. https://doi.org/10. to the research, authorship, and/or publication of this article. 1111/j.1468-0009.2010.00602.x Government of Canada. (2021a). Disability tax credit. https://www. Funding canada.ca/en/revenue-agency/services/tax/individuals/segments/ The author(s) received no financial support for the research, au- tax-credits-deductions-persons-disabilities/disability-tax-credit. thorship, and/or publication of this article. html Government of Canada. (2021b). EI caregiving benefits and leave: ORCID iD What caregiving benefits offer. https://www.canada.ca/en/ Husayn Marani https://orcid.org/0000-0002-9146-661X services/benefits/ei/caregiving.html Government of Ontario. (2010). Aging at home strategy. https://news. 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The Gerontologist, 60(1), S16–S28. https://doi. acts/s-19/fulltext.html org/10.1093/geront/gnz14 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Applied Gerontology SAGE

Collecting Information on Caregivers’ Financial Well-Being: A Document Review of Federal Surveys in Canada

Marani, Husayn; Allin, Sara
Journal of Applied Gerontology , Volume 41 (9): 12 – Sep 1, 2022
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© The Author(s) 2022
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0733-4648
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10.1177/07334648221099279
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Abstract

Population-based surveys conducted by governments inform strategies concerning emergent areas of policy interest. One such area is unpaid caregiving in the context of an aging population. In the Canadian and global contexts, research suggests a need for public financial support to mitigate financial risks of caregiving. In this document analysis, we reviewed 17 federal surveys since 2005 to understand how caregiving-related information is captured. We found that caregiving-related questions were largely derived from two surveys, the General Social Survey and the Canadian Community Health Survey. However, gaps exist concerning questions related to estimates of private care expenditure, and the impacts of older adult caregiving across domains of financial risk (income, productivity, and healthcare utilization). Addressing these gaps, either through revising existing surveys or a new national survey on unpaid caregiving, may improve meaningful assessments about risks and impacts of caregiving, which may better inform public strategies that offset these risks. Keywords caregiving, policy, decision-making, social security, financial risk, document review, Canada What this paper adds � Population data collected by public (government) surveys informs public policy on emerging areas of policy interest � As the global population ages, there is growing policy interest in ways to support unpaid caregivers; yet, in Canada specifically, the challenges of unpaid caregiving, particularly financial challenges, are poorly captured on existing public surveys Applications of study findings � Governments (in Canada and internationally) should consider including questions concerning financial challenges associated with unpaid caregiving on national surveys � A fulsome understanding of financial risks of caregiving (e.g., out-of-pocket care–related expenditure and impacts on income and employment status) may better inform public policies to offset these risks � Methods undertaken to review public documents (government surveys) are innovative and may inform similar studies concerning gaps in public data collection in different contexts (e.g., government, non-governmental organizations, and academia) Introduction Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada In 2020, expenditure on research and development represented North American Observatory on Health Systems and Policies, University of 1.69% of gross domestic spending in Canada (OECD, 2022). Toronto, Toronto, ON, Canada Although Canada falls behind other OECD members, including Corresponding Author: the United States (U.S.) (3.07%) and the United Kingdom Husayn Marani, Institute of Health Policy, Management and Evaluation, Dalla (U.K.) (1.76%), the federal government of Canada maintains a Lana School of Public Health, University of Toronto, 155 College Street, 4th strong commitment to research, particularly public (govern- Floor, Toronto, ON M5T 3M6, Canada. ment) data collection. In 2020, over half a billion dollars was Email: husayn.marani@mail.utoronto.ca 2034 Journal of Applied Gerontology 41(9) spent on public data collection, an expenditure that is projected particularly in certain geographies such as rural areas (Kitchen to increase by 16% next year (Statistics Canada, 2020a). et al., 2011). Other risks include caregivers exiting the formal, or In Canada, collecting and disseminating public data is a paid, labor market, or modifying work hours and taking leaves federal responsibility, legislated by the Statistics Act (1985). of absence from work to provide unpaid care (Jacobs et al., Public data is collected nationally through a comprehensive 2013; Lilly et al., 2010; Stanfors et al., 2019), which is com- network of surveys conducted by Statistics Canada, a federal monly experienced by caregivers in the context of “intensive agency. Although data from non-governmental organizations caregiving”,such asend-of-lifecare(Williams et al., 2014). and academic research may inform public policy, public data Caregivers may also experience a reduction in overall leisure collected directly by governments has an important role in and self-rated health (Stanfors et al., 2019). shaping public policy decision-making, including raising Despite these analyses, important gaps remain concerning awareness of issues, identifying target groups for specific policy the financial risks of caregiving. For example, increasingly, interventions, informing the development of new policies, and local and international scholarship is demonstrating that unpaid justifying ongoing policy intervention across different public caregivers are incurring costly care-related expenses out-of sectors (Hastak et al., 2001; Laws et al., 2013). In the Canadian their own pocket, including expenses for prescription medi- context, information collected by Statistics Canada informs cation, supplies, housing, and transportation (Han et al., 2012; federal, provincial and territorial policy and programming, Shooshtari et al. 2017; You & Kobayashi, 2011). However, monitoring and surveillance, agenda setting, and financial little is known about how these expenses manifest as financial benchmarks concerning employment and income, and is also risk based on analyses of government datasets. We know from used by researchers, analysts, and planners in both public and empirical scholarship that cost-prohibitive expenses may be private settings (Statistics Canada, 2009). forcing key trade-offs between other important expenses such Surveys conducted by Statistics Canada are conducted on a as food (Law et al., 2018). There is also a concern that stressors cyclical basis (e.g., annually or every 5 years) to capture data on associated with paying for care-related expenses may con- emerging topics of national research and policy interest. In recent tribute mental and physical health issues thereby increasing years, unpaid caregiving has become one such area. Unpaid caregivers’ utilization of cost-prohibitive health services caregiving refers to provision of medical, emotional, and/or (Chambers et al., 2016). We also know how caregiving may psychological support over any duration of time for someone interfere with gainful employment, thereby compromising (e.g., family member, friend, or neighbor) living with a health income-generating potential and the ability to pay for im- condition or limitations in activities of daily living (“ADLs”), portant care-related expenses (Longacre et al., 2016). including bathing, toileting, dressing, eating, transferring (e.g., The literature described above points to the importance of from chair to bed), and mobility (Arriagada, 2020). Across providing supports to caregivers; however, gaps in the lit- Canada, there were 7.8 million unpaid caregivers in 2018, rep- erature call into question the conclusions we can draw from resenting 25% of the population over 15 (Arriagada, 2020). government surveys about the financial risks of unpaid Alongside similar patterns observed in the UK, Belgium, and caregiving. In the context of this paper, we refer specifically Austria, this represents one of the highest rates across OECD to public (government) support. Although some public countries (OECD, 2021). The number of unpaid caregivers in caregiving benefits exist, including income-tested tax ex- Canada and worldwide is expected to rise, in part, due to an aging emptions under the Disability Tax Credit (Government of population and a growing desire to age independently at home Canada, 2021a), and Family Caregivers Benefits for em- rather than facility–based long-term care (Huber, 2021; March of ployed individuals who take time off work (between 15 and Dimes Canada, 2021). These sentiments have been further 26 weeks) to provide care (Government of Canada, 2021b), stimulated by the COVID-19 pandemic (National Institute on these may not be wholly inclusive of all caregivers, especially Ageing, 2020a), the first wave of which saw 80% of deaths due to those who are not employed and those providing care beyond COVID-19 occurring in long-term care facilities (Webster, 2021). the maximum eligibility period. Similar deficits in financial Several analyses of unpaid caregiving using datasets support (e.g., cash allowances and tax credits) in contexts such from government surveys consisting of short supplements as the UK and US have been observed (Pattyn et al., 2021). on unpaid caregiving (namely, the Canadian Community Accordingly, there is an increasingneedto improve the supports Health Survey [CCHS] and the General Social Survey available to unpaid caregivers to offset the financial risks of [GSS]) have been conducted in the past decade. Findings caregiving and the impact of these risks on caregivers beyond expose a range of risks associated with unpaid care provi- the departure from formal (paid) labor force to provide care sion, particularly financial risks. We interpret financial risk (National Institute on Ageing, 2020b). Indeed, supporting un- to include both the magnitude of private expenditure on care paid caregivers has important health system implications, as it (care expenses paid out-of-pocket), and the impacts of these keeps care recipients out of costly acute care and residential expenses across various domains of financial risk, including long-term care facilities, which is more cost-effective. productivity, income earning potential, and healthcare utilization Hence, information obtained through government-administered (Hacker, 2004). Basedonthese analyses, financial risks may be surveys could help to inform caregiver groups who may need help rooted in deficits in publicly subsidized home care provision mitigating financial risks, and therefore, better improve the design Marani and Allin 2035 of policies to support unpaid caregivers and mitigate the financial subject areas were reviewed for eligibility: “Families and House- risks of caregiving. Thus, in this paper, we explore the extent to holds” (n = 6 surveys); “Health” (n =64); “Income, pensions, which federally administered surveys capture information on spending, and wealth” (n =27); “Labor” (n =74); “Seniors and unpaid caregiving across Canada. Specifically,weseektoun- aging” (n = 5); and “Society and community” (n =15). derstand whether questions and response options on existing Akin to processes in collecting literature using databases survey instruments consider the full range of financial risks of for traditional literature reviews (Arksey & O’Malley, 2005), unpaid caregiving (including care-related expenses) and their we determined eligibility of surveys to be extracted by in- impact among unpaid caregivers. dependently conducting then comparing results from a manual search within each survey instrument for questions containing standard care- or caregiver-related keywords, Methods including “care,”“caregiver,”“care provider,”“family,” To address our research aim, we conducted a document review of “family member”, “family worker,”“assistance,”“unpaid,” population-based, federal survey instruments—and the survey “voluntary,” or “informal”. These keywords have been used questions therein—conducted by the Canadian federal government in seminal literature reviews in this topic area (Queluz et al., since 2005. We did not analyze completed survey datasets. 2020) and reflect best practices in inclusive language in Document analyses give voice and meaning around an assessment caregiving-related research (Stall et al., 2019). If any of these topic (Bowen, 2009). Documents reviewed may include public keywords appeared in any question, the survey instrument records (e.g., policy manuals or strategic plans), personal docu- was included in this review. ments (e.g., e-mails, social media posts, first-person accounts), and physical evidence within study settings (e.g., flyers or handbooks) Extraction of Survey Questions and Analysis (O’Leary, 2014). In this document analysis, we apply approaches to reviewing documents to publicly administered surveys. To do this, The extraction of survey questions from included survey we draw on O’Leary’s (2014) considerations for reviewing doc- instruments was completed by HM and validated by SA and uments and conducting textual analysis where possible. consisted of two elements. First, we extracted details con- We focussed specifically on federal surveys as population- cerning the survey instrument itself, for example, its purpose based data collection is a federal responsibility and provinces and target audience. These details were derived from the and territories routinely use federally collected data to inform detailed description of the survey instrument on the Statistics local decision-making. While some Canadian provinces and Canada website, which we adapted for brevity. Then, we territories also routinely collect data from their residents in extracted specific survey questions by reviewing all questions surveys, the focus of our study was on federal government in each included survey instrument and coding relevant surveys given their capacity to shape policy across the country questions deductively based on an a priori conceptual un- (Hastak et al., 2001; Laws et al., 2013) and to narrow the scope derstanding of the financial risks of caregiving. Questions of this paper, but we recognize other potential sources of na- were coded across three broad categories: (1) the [financial] tional data exist, including from non-governmental organiza- risks of caregiving, including sub-categories such as (a) tions and academic research. estimates of direct private (out-of-pocket) care expenditure, (b) sources of financial support, and (c) general spending behaviors); (2) consequences of unpaid care provision across Eligibility and Inclusion specific domains of financial risk, including (a) income, (b) O’Leary (2014) suggests developing a list of texts to explore employment and productivity, and (c) health and health care; and considering how to access these texts. For the purpose of and (3) the determinants, or predictors, of these risks as this analysis, this meant deciding which survey instruments described in relevant literature, including (a) dwelling, or the we should extract questions from, and from where to locate living arrangement of caregiver and care recipient, (b) care these survey instruments. All survey instruments are housed provision, or the type and extent of care provided and to on the “Surveys and statistical programs” page on the Sta- whom, (c) employment status of survey respondent, and (d) tistics Canada website (statscan.gc.ca) under “Results and personal income and income sources (Dosman & Keating, documentation of surveys and statistical programs.” In this 2005; Guerriere et al., 2008; Leong et al., 2007). We excluded analysis, questions from the most recently circulated survey baseline demographic questions consistently asked across all within the past 15 years were extracted. Recently inactive household surveys (e.g., gender, ethnicity, age, and rela- surveys from the same time period were still included in this tionship status with care recipient), but recognize these, too, review, if salient, in the event that the types of questions asked may inform patterns of financial risk. differ from any active surveys. Statistics Canada surveys cover 31 subject areas. Subject areas Results are not mutually exclusive as surveys may fall under multiple subject areas. Based on our overarching interest in unpaid care This document analysis was conducted in December 2020. across the domains of financial risk, surveys from the following At this time, Statistics Canada had a collection of 412 2036 Journal of Applied Gerontology 41(9) Table 1. Summary of Included Survey Instruments. Survey Name Status (Active or Inactive) Last Circulated Subject Areas Reference Survey of household Active (Annual) Jan 2, 2019–Feb Expenditures; dwelling characteristics; Statistics spending (SHS) 14, 2020 household equipment; income Canada, 2021b General social survey Active (every 5 Years) Apr 3–Dec 28, Care and social support; disability; health and Statistics (GSS)—caregiving and 2018 (cycle 32) well-being; society and community Canada, care receiving 2018a GSS—family Active (every 5 Years) Feb 1, 2017–Nov Aboriginal peoples; education, training and Statistics 30, 2017 learning; ethnic diversity and immigration; Canada, families, households and housing; health 2019 GSS—volunteering and Active (every 5 Years) Sept 4, 2018–Dec Labor; society and community; unpaid work; Statistics participating (GVP) 28, 2018 (cycle volunteering and donating Canada, 33) 2015 Canadian community Active (every 2 years) Jan 2–Dec 24, Disease and health conditions; health; health Statistics health survey (CCHS) 2020 care services; lifestyle and social conditions; Canada, mental health and well-being 2016 CCHS—Healthy aging Inactive (occasional Dec 1, 2008–Nov Health; health and disability among seniors; Statistics supplement 30, 2009 lifestyle and social conditions; population Canada, aging; population and demography; seniors 2008 Canadian health survey on Active (occasional) Jan 2–Dec 24, Diseases and health condition; health; health Statistics seniors (CHSS) 2020 care services; lifestyle and social conditions; Canada, mental health and well-being 2020d Participation and activity Inactive (replaced by Oct 30, 2006–Feb Disability; equity and inclusion; health; society Statistics limitation survey— Canadian survey on 28, 2007 and community Canada, adults, 15 and over disability) 2007 (PALS) Canadian survey on Active (every 5 years) Mar 1, 2017–Aug Disability; equity and inclusion; health; society Statistics disability (CSD) 31, 2017 and community; work, income and spending Canada, 2018b National household survey Inactive (one-time) May 10, 2011–Aug Aboriginal peoples; education, training and Statistics (NHS) 24, 2011 learning; ethnic diversity and immigration; Canada, families, households and housing; income, 2011a pensions, spending and wealth; labor; languages; population and demography; society and community Survey on living with Inactive (one-time) Sept 9, 2011–Mar Diseases and health conditions; health Statistics neurological conditions 21, 2012 Canada, in Canada (SLNCC) 2011b Employment insurance Active (annual, 4 5-week Apr 17, 2018–Feb Employment insurance, social assistance and Statistics coverage survey (EICS) collection cycles) 15, 2019 other transfers; labor; non-wage benefits Canada, 2020c Survey of older workers Inactive (one-time) Oct 19, 2008–Dec Labor; work, transitions and life stages Statistics 1, 2008 Canada, Labour force survey (LFS) Active (monthly) Apr 2020 Employment and underemployment; hours of Statistics work and work arrangements; industries; Canada, labor; occupations; unionization and industrial 2021a relations; wages, salaries and other earnings Canadian survey of Inactive (one-time) Aug 18, 2013– Household, family and personal income; income, Statistics economic well-being Oct 7, 2013 pensions, spending and wealth; low income Canada, (CSEW) and inequality 2013a Survey of labour and Inactive (formerly annual. Jan 1, 2011–mid- Families, households and housing; household, Statistics income dynamics (SLID) Since merged with Mar (over 6- family and personal income; income, pensions, Canada, Canadian income year period) spending and wealth; labor; low income and 2013b survey) inequality Survey of financial security Active (occasional) Sept 8, 2016–Dec Household assets, debts and wealth; income, Statistics (SFS) 8, 2016 pensions, spending and wealth Canada, 2020b Marani and Allin 2037 active and 384 inactive (no longer in circulation) surveys. Based on the description of these surveys, it appears that With the exception of the long-form census, all active and one of the 17 surveys—the GSS on Caregiving and Care inactive subject-specific surveys from 2005 onward were Receiving—is used to develop policy and programming for considered for this review to capture the most recent unpaid caregivers, but this description does not explicitly versions of all possible survey instruments currently in identify how survey results from previous cycles have in- circulation or now inactive. Following screening for eli- formed policy and program development. gibility and the removal of outdated survey versions, 17 survey instruments were included in this analysis, sum- Description of Survey Questions marized and referenced in Table 1, and further described in Supplemental Appendix A. We then analyzed the questions within these 17 survey in- struments to understand how survey instruments explored the financial risks of unpaid caregiving. Supplemental Appendix Description of Survey Instruments B synthesizes relevant questions across all survey instru- All included surveys were cross-sectional in nature (no panel ments, which we summarized and adapted for brevity. surveys were included in our search). Six survey instruments Questions may directly or indirectly concern the provision of are inactive because they were circulated only one-time, or unpaid care for someone with a health conditions or limi- amalgamated with, or replaced by, another instrument. One tations in ADLs. Questions may also target unpaid caregivers survey instrument, the GSS, is conducted annually but re- or otherwise. Questions were organized (coded) across the flects a different theme every year, which is conducted on a 5- categories described in our Methods. In some cases, the year cyclical basis. For this reason, three versions of the GSS relevance to unpaid caregiving is not obvious in the question are included in this review, representing three thematic itself, but in response options. In such cases, relevant re- areas—“Caregiving and Care Receiving,”“Family,” and sponse options are italicized in Supplemental Appendix B.As “Volunteering and Participating.” we were broadly interested in the types of questions asked Statistics Canada defines a dwelling as distinct physical across all survey instruments, and there is duplication in living quarters with a private entrance outside, and a household questions across federal surveys, we did not aim to identify is any person or group of persons living within a dwelling from what survey instruments each question was derived. (Statistics Canada, 2020e). For the most part, all surveys are Table 2 presents a tally of survey instruments that consist targeted toward all households. Some surveys specifically of at least one question corresponding to a category described target respondents of other household surveys. For example, in our Methods. Across all categories, there were 13 instances participants of the Labour Force Survey (LFS) are sub-sampled across two survey instruments where at least one question is to participate in a variety of related surveys, including the asked of an unpaid caregiver respondent about the provision Survey of Older Workers and the Survey of Financial Security. of unpaid care for someone living with a long-term health Although the GSS on Caregiving and Care Receiving the condition or limitations in ADLs (■). Most such questions Healthy Aging Supplement of CCHS include short modules were asked in the GSS survey on Caregiving and Care Re- targeting unpaid caregivers, no survey solely targets unpaid ceiving, introduced for the first time in 2018, and another, caregivers. Thus, survey respondents may either be care re- now inactive, one-time Healthy Aging supplement of CCHS. cipients, or caregivers responding on their own behalf or as a Among these questions, there is interest in the type and proxy for a care recipient living within the same household. duration of care provided by unpaid caregivers, the broad cost Surveys span a number of subject areas including income, implications (e.g., total out-of-pocket costs of care across all social support, education, labor, and workforce participation, care provided), and employment implications. health, and family and living arrangement. Participation in all We also included questions that may be relevant to surveys is voluntary with the exception of the LFS which is caregiving (as a predictor of financial risk) but do not ex- mandatory under the Statistics Act (Statistics Canada, 2021a). pressly target unpaid caregivers. Across all categories, there Based on the data extracted concerning stated objectives of were 15 instances across eight survey instruments of at least surveys, survey data may be used for a variety of purposes, one question (or response option) concerning the provision of including adjusting payments by or benefits from various social unpaid care (□). In these cases, the question was framed in the programs, calculating financial benchmarks (e.g., Consumer context of care received and were largely targeted toward Price Index and Gross Domestic Product), calculating spending respondents who are recipients of care or assistance for a behaviors at the individual and household level, identifying health condition. For example, several surveys (CCHS, needs across specific groups (e.g., older adults and low-income CHSS, CSD, and SLNCC) ask care recipients about the type communities), for general monitoring, surveillance and evalu- of care they receive (personal care, transportation, schedul- ation, and to assist in future decision-making concerning policy ing, etc.), which may be provided by an unpaid caregiver. initiatives (e.g., concerning employment rate). This information helps to understand the prevalence of 2038 Journal of Applied Gerontology 41(9) Table 2. Tally of Questions Captured Across all Included Survey Instruments. Predictors [Financial] Risks of Caregiving Consequences of Caregiving Estimates of Personal General Financial monetary costs income and spending support (direct, private) of Employment/ Health and Care Employment/ income behaviors available for caregiving/care Income-related productivity quality of life Survey Name Dwelling provision activity status sources (care-related) caregiving receiving consequences consequences consequences Survey of householdCC C C C spending (SHS) ■■ ■ ■ ■ ■ ■ General social survey (GSS)— caregiving and care receiving GSS—family CC s C ss C GSS—volunteering CC C C CC and participating (GVP) Canadian community C □ CC C □ C health survey (CCHS) ■■ ■■ ■ ■ CCHS—Healthy □□ aging supplement Canadian health C □ C survey on seniors (CHSS) Participation and □□ □ CC C C activity limitation survey—adults, 15 and over (PALS) Canadian survey on □ CC disability (CSD) National household C s survey Survey on living with C □□ CC C □ neurological conditions in Canada (SLNCC) Employment s CC C ss s insurance coverage survey (EICS) (continued) Marani and Allin 2039 Table 2. (continued) Predictors [Financial] Risks of Caregiving Consequences of Caregiving Estimates of Personal General Financial monetary costs income and spending support (direct, private) of Employment/ Health and Care Employment/ income behaviors available for caregiving/care Income-related productivity quality of life Survey Name Dwelling provision activity status sources (care-related) caregiving receiving consequences consequences consequences Survey of older □ C C □ workers Labour force survey □ (LFS) Canadian survey of C C economic well- being (CSEW) Survey of labour andCC C C C s CC income dynamics (SLID) Survey of financial CC s C security (SFS) Notes:(■) denotes at least one question that concerns the provision of unpaid care for someone living with a long-term health condition or limitations in activities of daily living that is asked specifically of a respondent who may be an unpaid caregiver (i.e., survey has a caregiving module). (□) denotes at least one question (and/or response option) that concerns the provision of unpaid care for someone living with a long-term health condition or limitations in activities of daily living, but the question does not explicitly target an unpaid caregiver (e.g., targeted at a care recipient where question is framed in the context of care received). (C) denotes at least one general question (unrelated to caregiving and not asked of an unpaid caregiver or care recipient), but may be relevant to caregiving in that question could apply to, or be adaptable to an unpaid caregiving context. (s) denotes at least one question that concerns the provision of childcare only (survey respondent is a parent/guardian). 2040 Journal of Applied Gerontology 41(9) unpaid care, the characteristics of the care being provided, programs such as the Family Caregivers Benefit(Government and the carer. of Canada, 2021b)—are informed by the most up-to-date data. Also included on this tally are general questions that are Relatedly, although some surveys ask respondents whether or agnostic to caregiving, but, based on an a priori under- not they use public financial support, questions concerning the standing of the caregiving experience, may be relevant in specific type of support and extent and magnitude of support are analyses of these datasets (C). Across all categories, there missing, limiting our understanding of whether support pro- were 50 such instances across 14 survey instruments. grams like the Family Caregivers Benefit are effective at off- Questions largely concerned predictors of the caregiving setting financial hardships of caregiving. experience; for example, employment status, personal in- Furthermore, private expenditure data, largely derived from come, and spending behaviors. These questions are not SHS, is used to inform Canada’s National Health Expenditure specific to the caregiving experience, but have been noted Framework, but, as it stands, it is impossible to know the extent here because they may be adapted to fit a caregiving context. to which caregivers themselves incur private health expendi- For example, questions concerning outstanding spending ture in the provision of unpaid care as SHS does not explicitly behaviors (bills and debts, current mortgages on assets, target unpaid caregivers. Again, this limits our understanding general reliance on credit cards to meet regular expenses, etc.) of the financial impacts associated with unpaid caregiving, and are noteworthy if caregiving contributes to such debts, or if may limit policy decisions concerning financial risk protection, such debts compromise funds available to pay for care. including compensation schemes and grants. Lastly, we included 10 questions across five survey in- In terms of income, and employment and productivity, struments concerning the provision of childcare where the LFS asks one question about the main activity of respondents survey respondent is a parent or guardian (Ο). Such questions who report not being in the formal labor force. In this could be adapted for unpaid caregiving of someone living question, all responses are informal (unpaid) activities, in- with a health condition or limitations in ADLs. cluding childcare, older adult care, household work, and unpaid internship. Generally speaking, however, surveys related to labor and employment (see Table 1) do not include Discussion questions on informal work, and questions concerning The purpose of this analysis is to broadly understand what is earnings and earning potential are about formal labor par- being asked about the provision of unpaid care on ticipation; other than time spent across all activities, the government-administered survey instruments in Canada with monetary value of informal, or unpaid, labor is not measured. a focus on national surveys administered by Statistics Can- Echoed in relevant scholarship from the U.K. (Aldridge & ada. Our review found 17 survey instruments that related, in Hughes, 2016), this raises a broader question of how Canada some way, to unpaid caregiving. Of these, 10 asked questions conceptualizes the informal labor workforce, and the extent to specifically about the experiences and risks of caregiving which informal labor should be captured in labor-specific irrespective of target audience. And of these, only two in- instruments of data collection. This is important because struments expressly targeted unpaid caregivers—the GSS on unpaid caregivers represent an increasingly growing segment Caregiving and Care Receiving and the CCHS Healthy Aging of the informal workforce worldwide (Broese van Groenou & Supplement, neither of which are currently active or in cir- De Boer, 2016), and unpaid caregivers of those living with culation. The majority of survey instruments, while not ex- complex health conditions like dementia—the rate of which plicitly targeting respondents who are unpaid caregivers, is growing in Canada—are seeing themselves departing the present questions that are useful in understanding predictors formal workforce to accept unpaid care responsibilities of financial risk if any respondents are unpaid caregivers, and without the workplace and government benefits afforded to could be adapted to fit the caregiving experience. parent caregivers (Black et al., 2010; Longacre et al., 2016). Across surveys, there are notable gaps in questions con- On this note, surveys appear to present a bias toward leaving cerning financial risks of unpaid caregiving. For example, while formal employment to care for infants and young children. PALS is specifically concerned with non–reimbursed out-of- Few surveys are concerned specifically with productivity and pocket care expenses, it is no longer active and its successor, income implications of caring for those living with health CSD, does not ask questions concerning out-of-pocket ex- conditions or limitations in ADLs, a highly heterogenous penditure. While surveys such as the GSS on Caregiving and population characterized by very diverse caregiving activities Care Receiving ask unpaid caregivers to estimate total out-of- and support needs (Young et al., 2020). pocket care-related expenditure, little is known about what Lastly, while we know income is a determinant of health, constitutes total expenses, limiting targeted public approaches this connection is not reflected in any health- or quality of life- to minimize specific expenses that may be most cost- related questions targeting unpaid caregivers specifically— prohibitive. This calls into question whether current policy for example, the extent to which care-related losses in income and programming on unpaid care—for example, tax exemp- (departing the formal labor force) may have compromised the tions under the Disability Tax Credit (Government of Canada, ability to pay for personal health expenditure, which has been 2021a), and generosity of coverage in financial risk protection observed elsewhere (Broese van Groenou & De Boer, 2016). Marani and Allin 2041 While literature is scant in both the Canadian and inter- From a methodological perspective, the adaptation of national contexts concerning how government surveys ask document review methods to analyze federal government about caregiving, previous scholarship has observed that survey instruments is innovative and could inform similar persons receiving long-term care and their caregivers are not studies in other settings across different orders of government. well-represented in national surveys administered by Sta- Indeed, unpaid caregiving is a globally ubiquitous topic area tistics Canada (Hirdes et al., 2018). Outside Canada, research and insights from this study could give rise to similar studies in from the U.K. suggests that, while the U.K. Census and other contexts. A variety of trends across Canada and abroad Family Resources Survey do include questions on caregiving, suggest a greater need for governments to publicly collect the monetary value of caring is poorly captured because information that elucidates the experiences of unpaid care- caregiving is a personal activity that generally takes place in givers and the relevant impacts, particularly the financial the home, whereas government surveys are concerned with impacts. One important trend is the shift from institutional to measuring economic activity in specific markets and public community-based or home care through “Aging-at-Home” or sectors, such as the labor market (Aldridge & Hughes, 2016). “Aging-in-Place” strategies, occurring in jurisdictions across Similar findings are echoed in the U.S., where there is no several countries with national health insurance systems such uniform approach in national surveys to ascertain the number as Canada, Australia, and the U.K. (Australian Government of unpaid caregivers, their attributes and services provided, Department of Health, 2021; Government of Ontario, 2010; thereby compromising public policy regarding unpaid Sixsmith & Sixsmith, 2008). These strategies were developed caregiving for older adults (Giovannetti & Wolff, 2010). to shift the economic burden of the aging population away from publicly funded acute and long-term care systems. In- advertently, however, this shift may be imposing greater care Implications and financial responsibilities on unpaid caregivers, which is Accordingly, this study has important implications on re- inconsistent with perspectives on social welfare distribution in search, policy and practice both in Canada and internation- welfare states that otherwise accept the responsibility to pro- ally. Beyond the way results from government surveys have vide (publicly pay for) health and social care. Hence, from a been shown to shape best practices in protecting caregiver policy and practice perspective, collecting precise information employers (AARP, 2016), we know that government surveys on the implications of this shift on caregivers is important in may inform the policy-making process, including agenda determining whether the state should intervene in better pro- setting (Hastak et al., 2001; Laws et al., 2013). For example, tecting caregivers from any financial risks of caregiving. findings from social surveys administered by the federal government inform debates in public policy about important Limitations policy topics such as pension reform, which can translate directly into new or revised policies (McDonald, 1997). In the We focussed on government data collection on the financial risks of caregiving, but note that academia, industry and non- context of aging and caregiving, demographic trends in governmental organizations have vested interests in this topic chronic disease prevalence captured by CCHS revealed over area. Future lines of inquiry could review how data is col- 700,000 Canadians living with Alzheimer’s Disease or re- lected in these sectors and how it is used to develop policies lated dementia, a statistic that spurred the passing of Bill and best practices that offset the financial risks of caregiving. C-233—An Act respecting a national strategy for Alzheimer’s We also excluded baseline demographic questions common disease and other dementias, in 2017. across all surveys, but recognize that demographic questions With the federal government budgeting $41.3 million over such as relationship between caregiver and care recipient, 6 years for Statistics Canada to improve data infrastructure living arrangement, age, and household income are important and data collection on health care, chiefly supportive care, predictors of financial risk. primary care and pharmaceuticals (Department of Finance Canada, 2021)), there may be value in orienting future re- search and/or policy action on developing a specific survey Conclusion on unpaid caregiving, or a regularly occurring, enhanced version of GSS on Caregiving and Care Receiving, that fills We found that the federal government of Canada is asking many gaps identified in this study. In particular, we recommend of the right questions concerning unpaid caregiving. However, due addressing gaps concerning out-of-pocket care expenditure, to the increased role of unpaid caregivers, and to inform policies including assistive devices and formal (paid) home care and programs, the Canadian government should consider more support, how caregiving has impacted income-generating focused and frequent surveys that assess the financial risks and potential, the extent to which public supports may have impacts of caregiving on unpaid caregivers and their households. offset risks to gainful employment, and financial risk has In a post–COVID-19 world where we may see a rapidly in- manifested during COVID-19, which exacerbated the creasing role of unpaid caregivers, results of this study may be stressors of caregiving, including maintaining full-time em- useful not only in Canada but elsewhere where unpaid caregivers ployment (Seedat & Rondon, 2021). will represent a large segment of the informal workforce. 2042 Journal of Applied Gerontology 41(9) Giovannetti, E. 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Journal

Journal of Applied Gerontology – SAGE

Published: Sep 1, 2022

Keywords: caregiving; policy; decision-making; social security; financial risk; document review; Canada

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