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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol

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Complete List of Authors:

Khayatzadeh-Mahani, Akram; University of Calgary, School of Public Policy; Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran Leslie, Myles; Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada Health policy Health policy

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Keywords:

18-Aug-2017

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Secondary Subject Heading:

Protocol

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Primary Subject Heading:

bmjopen-2017-019220

Health policy < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Informal Care Policies, Canada

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Title Page Title: Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Authors’ name and affiliation: Akram Khayatzadeh-Mahani (PhD)1,2, Myles Leslie (PhD)1,3 1

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School of Public Policy, University of Calgary, Calgary, Alberta, Canada

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Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran

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Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

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Corresponding author: Myles Leslie

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Email address: [email protected]

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Address: School of Public Policy, University of Calgary, Downtown Campus, 906 8th Avenue S.W., 5th Floor, Calgary, Alberta T2P 1H9 Phone Number: +1 (403) 605 5475

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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Abstract Introduction: As the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in eldercare, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance not just to the elderly, but to fellow citizens with developmental disabilities or chronic diseases. This review aims to identify the diversity of Canadian national, provincial, and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the eldercare policy environment.

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Methods and Analysis: Given the vast and multi-disciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O’Malley that entails six stages including 1) identifying the research question(s), 2) searching for relevant studies, 3) selecting studies, 4) charting the data, 5) collating, summarizing, and reporting the results, 6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible.

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Dissemination: We will pursue an iterative integrated knowledge translation strategy engaging our knowledge users through all stages of the review, and ensuring they directly contribute to the project’s policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. We will also develop an online, free-access evidence repository that catalogues the full range of Canada’s informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies.

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Strengths and limitations of this study: Strengths: • The review adopts an iterative, integrative approach to knowledge translation by engaging diverse knowledge users in its design, analysis, and dissemination. • Identifying diverse informal care policies and potential barriers and facilitators to implementation of these policies will provide a guide to policy makers and

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practitioners in shaping future evidence-based policies for supporting eldercare in Canada and internationally. Limitations: • As French is an official language in a number of Canada’s fourteen major political jurisdictions, by limiting our search to English language documents we may miss some potentially important results. • As this is a scoping review, we do not assess the quality of evidence nor do we rank/grade evidence as is normally performed in a systematic review.

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Introduction As governments have reduced their involvement in providing institutional long-term elder care 1-3, leveraging informal care for this work has become a key strategy in maintaining healthcare system sustainability worldwide 4-8. As the population ages, and the senior cohort increases, policy attention has shifted to finding ways to support and empower informal groups of helpers and caregivers as part of a strategy to avoid, or delay the institutionalization of elders 6,8-11 and as part of a trend towards helping people stay in their own homes and communities as they age12. In Canada, for instance, only 2% of elders, age 65 and older, receiving publicly funded home care services are otherwise independent. The remaining 98% rely on informal caregivers to provide the help and care necessary for their well-being9. Despite being a key policy element, we know little about the strategies, tactics, and programs that have been successful in supporting not just informal care for the elderly, but in other contexts (e.g. developmental disability, chronic disease, childcare, drug abuse/addiction, teenage pregnancy, violence, and homelessness). The lessons learned in informal care policy generally may well be valuable in refining specific efforts to support and improve informal care for elders.

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Informal caregivers providing care for elders are a specific example of a general trend in the health and social policies of developed nations. We use ‘informal caregivers’ to refer to groups that arise organically out of their members’ interests and needs and that emphasize horizontal, or in-group communication. In contrast, formal caregiving groups are formed out of policy and institutional interests, and emphasize vertical command, control, and communications structures13. The concept of an informal care group emerges from the ‘convoy theory of social support’14 which posits concentric circles of close-by helpers and even closer caregivers 15 all of whom bring not just physical, but also social resources to delivering care 11. In the Canadian context, the reality of these convoys is that they are far more likely to be dyadic than multi-member groups 16,17, and, as elsewhere in the world, their work falls predominantly to women 18-20.

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Fifty years ago ‘informal care’ as either a phrase or concept was unheard of, and the activities of these close-knit groups as they cared for the young, elderly, physically or

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mentally disabled, or addicted were beyond the attention of policy makers. The phrase emerged in the 1970s as state interests in healthcare provision began to focus on providing care in the community rather than in institutions 21,22. It was then only a short step for policy makers to imagine care provision not just taking place in the community, but being delivered by the community. Through the 1980s and 1990s ‘informal care’ became a more widely recognized term, and these groups, oxymoronically, acquired a position in the health and social care policy agenda. Heaton 22 shows how, with the implementation of the Carers (Recognition and Services) Act 1995, informal caregivers became the specific object of formal policy efforts in the UK. This legislation defined, and then gave carers who provide a ‘considerable amount of care on a regular basis’ the right to request an assessment of their needs preparatory to receiving social assistance 23. As informal caregivers have become the object of policy attention and knowledge production, and as carers themselves have coalesced around this new identity, variations on, and cognates of the British example have appeared in the policies of different countries around the world 22,24-26. Thus, putatively ‘informal’ caregivers in many jurisdictions have come to be integrated into various ‘formal’ policy, administration or care delivery systems.

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Although informal caregivers may operate without direct official institutional support 27, they are perhaps best conceptualised as personal, caring interrelationships among family, friends, and relatives that are more or less connected to formal systems of policy-making and care delivery. Indeed, informal caregivers are widely recognized as contributing to the sustainability of formal care systems 28. In making these contributions, they extract a broad range of economic 29,30 and time 31 commitments from informal caregivers with the imputed economic contribution of these caregivers estimated, in Canada, at $25 Billion per year 32. UK estimates based on a replacement cost approach, peg the value of unpaid care provided by informal caregivers working in all contexts at £119 billon – a number that exceeds the annual cost of running the National Health Service (NHS) 24,33. In Canada, and in the specific context of eldercare provision, informal caregivers provide between 70 and 90 per cent of care for the elderly, with a decline in their activities projected to increase the costs incurred by the formal care system by between 5 and 35 per cent 9,28.

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While the unpaid, often invisible 34,35, work of these informal caregivers can be rewarding 36, it can also lead to caregiver anxiety 37,38 and burnout 39. A recent Ontario study shows that nearly a third of families who had been providing informal care for more than two years spent on average 20 hours a week 28,40. When intensive and sustained, this sort of commitment can limit caregivers’ social engagement and participation in the paid labour force, as well as increase the risk of physical and mental

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health problems 28,41. A range of studies indicate that the majority of informal caregivers participating in the labour force experience difficulty juggling work and caregiving responsibilities 20,42 with negative consequences for their peace of mind, ability to sleep, and productiveness and mood at work 43-45. Indeed, many caregivers drop, or are forced, out of the labour force as they attempt to balance their responsibilities 46. The critical need for policies supportive of informal caregivers as they make their significant contributions to society has been recognized 11. Policy makers in many developed countries have introduced a range of measures to support informal caregivers such as providing cash benefits, tax credits, or legal protections for workers who are also caregivers; and also by improving the integration of informal caregivers into formal system elements such as hospitals, primary care teams, long-term care providers, and professional associations 26,41,47. There has also been an increasing interest, at policy levels, in innovative uses of technology to support caregivers 48,49. The aim of these various policy supports is to improve informal caregivers’ competence in, and capacity to, care 50. Unfortunately, policy and practice development in the fields of law, regulation, finance, organizational reform, and technology has been organic rather than systematic, and so the existing literature provides only limited information on the diverse approaches to creating policy that supports informal caregivers and their integration into formal systems.

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In this review, we will search for Canadian literature from across disciplines to identify the broad range of policy instruments different provinces and territories have adopted in relation to informal caregivers. In elder care, for example, a range of organizations have come together to ask the federal government to design a “National Seniors Strategy,” with a particular emphasis on supporting caregivers taking the form of enhanced job protection measures, caregiver tax credits, and enhanced Canada Pension Plan contribution allowances 51. If these are some of the policy options the federal government is pursuing, it is important to understand that Canadian health and social policies are determined and administered across fourteen jurisdictions (one central/federal, ten provincial, and three territorial). Each jurisdiction has various levels of responsibility and interests, as well as its own political system. These variations have led to the design and implementation of diverse policies in support of informal caregivers. A striking example can be found in policies aimed at promoting and supporting ‘self-managed care’ (SMC). These have, since the 1970s, become increasingly popular in a range of Canadian jurisdictions. Generally, in an SMC, an earmarked budget is assigned to a recipient of care, who is free to choose services and vendors to meet his or her needs 52. Although SMC programs have been implemented across all ten provinces, only three provinces – British Columbia, Manitoba, and Nova Scotia – permit care recipients to use funds to compensate family caregivers for their labour53 . We aim to capture these sorts of cross-

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jurisdictional variation in what might otherwise appear to be consistent policies. Our aim here is not just to highlight and understand Canada’s variations but to establish a methodological and empirical foundation for a major international comparison. This is to say, the results of the present scoping review will support larger efforts in the future to perform a cross-national comparative review. The review’s first goal is to facilitate an analysis of the various legal, regulatory, finance, organizational reform, and technology approaches that policy makers have taken to supporting informal caregivers. The review’s second goal is to synthesize these findings into, on the one hand policy opportunities, and on the other, lessons learned. Our focus in this synthesis phase is on drawing out approaches, methods, and cautionary tales from informal care policy generally that can be applied to supporting and integrating informal caregivers in the delivery of eldercare specifically. This is a key step in avoiding mistakes and repetition in policy work.

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To increase the uptake of our review findings, we will engage diverse knowledge users including content experts, policy and decision makers, practitioners, and informal caregivers in the design, analysis, and dissemination of the review. In this review, we are going to address the following four objectives: 1) to analyze and synthesize existing Canadian evidence through a comprehensive review of grey and published literature on policy instruments to support and integrate informal caregivers across Canada, 2) to develop a conceptual framework that classifies diverse informal care policies, 3) to explore different policy objectives behind adopting/developing those policy instruments, 4) to explore potential barriers and facilitators to implementation of diverse policy instruments, and 5) to identify, in conjunction with our knowledge user partners, the approaches, methods, and lessons learned in the broader literature that are applicable to the specific challenges of informal caregivers delivering elder care.

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Methods And Analysis Given the limited nature of existing knowledge on different informal care policies in Canada we will use a scoping review methodology 54. In a scoping review, the available literature is comprehensively reviewed in order to map the key concepts within a research area and the main sources and types of evidence available 54-56. Given the vast and multidisciplinary nature of the literature on informal care (ranging from childcare, to drug abuse/addiction, to homelessness, to chronic disease, to neurodevelopmental disability, etc.), and thus far limited efforts to synthesize existing knowledge, a scoping review will allow us to: map existing knowledge and the main sources and types of evidence about different informal care policies in Canada, to develop a conceptual framework that classifies those policy instruments, to explore different policy objectives behind adopting/developing those policies, to investigate potential barriers and facilitators to

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implementation of diverse policy instruments, to explore the degree of success for those policies, to identify additional gaps in the literature, 54, and also draw out policy opportunities and lessons learned with our knowledge user partners. As a scoping review builds on systematic review methods 57, it can also assist in determining the value of undertaking a full systematic review on this topic. We will follow the framework developed by Arksey and O’Malley (2005) in our scoping review, as shown in Figure 1. This framework entails six stages including 1) identifying the research question/s, 2) searching for relevant studies, 3) selecting studies, 4) charting the data, 5) collating, summarizing, and reporting the results, 6) and conducting consultation exercises. We will treat these stages in an iterative way and will engage with each stage in a reflexive way and repeat steps, where necessary, to make sure that the literature is comprehensively covered 55.

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Stage 1

Identifying the research question/s

Identifying relevant studies through 5 activities: Stage 2 Electronic database search Web search Hand search of relevant journals Tracking citations of relevant papers Scanning the reference lists of relevant papers

Stage 3

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Relevance Testing Inclusion and exclusion criteria

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Stage 4

Charting the Data / Data Extraction

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Collating, Summarizing, and Reporting the Results

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Consultation

Figure 1: stages of scoping review

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Stage One: Identifying the Research Question/s

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As scoping reviews seek to summarize the breadth of evidence, the research questions should be broad 54. According to Levac et al. 56 selecting comprehensive areas of exploration facilitates direction and focus of the study. A well-defined research question helps later stages of the review including study selection and data extraction 56. The overarching question that guides our review is: “how do Pan-Canadian policies account informal care?” Our research team has initially generated a list of potential research questions based on their experience and initial engagement with the relevant literature. The knowledge users including content experts, policy makers, practitioners, and informal caregivers were then consulted to refine and finalize the research questions. This input from knowledge users will ensure the study’s relevance, rigour, and comprehensiveness. Specifically, this ongoing engagement aims to improve the uptake of the review results by a broad range of knowledge users 58. The following research

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questions will guide this review: 1. Which informal care policies are being addressed in the Canadian literature? 2. What are the policies in support of informal caregivers across Canadian provinces and terrotories? 3. What policy issues have been targeted by the informal care support policies? (e.g. childcare, labour force participation, exotic diseases, elder care, drug abuse/addiction, teenage pregnancy, violence, developmental disability, homelessness, chronic disease)

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4. Who are the target populations of the informal care support policies? 4.1. Children (e.g. exotic diseases, childcare) 4.2. Adults (e.g. violence, drugs, chronic diseases) 4.3. Seniors (e.g. aging population)

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5. How are policies aimed at supporting informal care operationalizing and/or evaluating their objective? As examples, how are wellbeing, satisfaction, burden, stress, efficiency, effectiveness, or other terms being used to give concrete meaning and measurability to the core policy mission of increasing the competence and capacity of informal caregivers?

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6. What are the barriers and facilitators of implementation for these informal care policies?

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7. Is there any evidence of policy success for implementation of those informal care support policies as given by the authors?

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Stage Two: Identifying Relevant Studies At this stage, we will identify relevant studies and will develop a search strategy, terms to use, sources to be searched, time span and language 54. In accordance with Arksey and O’Malley’s recommendation that “comprehensiveness is the whole point of scoping the field” 54, we will employ a very broad search strategy. We will use a search strategy worksheet 59 and our search terms will include keywords related to (1) relation between formal and informal care AND (2) policy objectives and instruments. We will adjust search terms based on nuances of each database. Our key concepts will include, but not be limited to (1) Canada, (2) federal/province/territory, (3) policies, and (4) informal care (see Appendix Table 1 for our detailed search strategy and terms). We will refine our search terms and undertake more sensitive searches of the literature throughout the

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review process, as necessary. As part of the broad search strategy, we will undertake the following five activities: electronic database search, web search, hand search of relevant journals, citations of relevant papers, and scanning the reference lists of relevant papers. To perform the electronic database search, we will employ an information scientist (or library scientist). As the research project is multidisciplinary in nature, we will be using diverse electronic databases including: Web of Science, PubMed, MEDLINE via Ovid; Sociological Abstracts; Social Science Citation Index (SSRN); Cumulative Index to Nursing and Allied Health Literature (CINAHL); PsycINFO; and EMBASE via Ovid [Excluding MEDLINE]. We will also search Google Scholar and Google for published and grey literature (see the full list of databases in Appendix Table 2). We conducted a preliminary search in two databases: MEDLINE and Web of Science. The MEDLINE search strategy produced 1508 records (12 August 2017) while the Web of Science search produced 4083 results (12 August 2017).

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For unpublished and grey literature we will search the following websites: Dissertations & Theses A&I via ProQuest; OpenGrey; ISI Proceedings; Conference Proceedings Citation Index–Social Science and Humanities; Joanna Briggs and ProQuest Dissertations and Theses; PAIS Index - Public Affairs Information Service; Google Scholar; and Google. For specific Canadian grey literature we will search the following databases: Canadian Research Index; Canadian Electronic Library; Canadian Public Policy Index; and LabourSource (formerly Labour Spectrum). Other websites will be identified by the research team and knowledge users.

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Upon completion of these electronic searches, we will conduct a hand search of key journals (e.g., Critical Public Health; Health Policy; Health Policy and Planning; Journal of Health Services Research and Policy; Health Services Research; Journal of Aging and Society; Health and Social Care in the Community; Social Policy and Administration; Journal of Aging Studies; The Gerontologist; Journal of Applied Gerontology; BMC Health Services Research; Journal of Aging and Social Policy; The International Journal of Integrated Care; Sociology of Health and Illness; Journal of Aging and Health; and key gerontological nursing journals) which will be identified by the research team and content experts. Citations of relevant papers will be also tracked. Finally, the reference lists of relevant papers will also be searched in order to find papers not identified in the initial search. All retrieved searches will be imported into Endnote in which the duplicate references will be identified and discarded. Since selected electronic databases to download citations and referencing are often inconsistent in their content and formatting,

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we anticipate a manual search for duplicates 58. Stage Three: Relevance Testing In order to increase the rigour of our review, we will adopt a team approach 56 to determine which studies/materials to include. At the beginning of the scoping review, the team will discuss and finalize the inclusion and exclusion criteria. The research team has initially decided to include any papers published since 1990 as informal caregivers became the specific object of formal policy efforts at this time 22. While our interest is in policies supporting informal care as they deliver eldercare, this is an exploratory study, and as such we will not limit our search strategy to eldercare. Rather, in an effort to achieve a breadth of understanding, and to facilitate comparative synthesis of opportunities and lessons learned we will target a broad range of informal care policy literature. We have also decided on the following inclusion criteria but these may be revised and refined following further engagement with our knowledge user partners.

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Initial Inclusion Criteria: • Academic and grey literature related to Canada only • Papers that discuss policies to support informal caregivers and policies to integrate these groups into formal systems of care (regardless of whether these arose from elderly care or other policy issues) • Published or unpublished primary studies (quantitative, qualitative or mixedmethods studies), theses/dissertations, conference papers, theoretical discussions and grey literature

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Initial Exclusion Criteria: • Papers published before 1990 • Papers not published in English • Book reviews • Commentary and editorial papers • Non-Canadian materials (academic and grey literature)

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As recommended by Levac et al 56 our reviewers will meet at the start, middle, and end of the abstract review process in order to discuss any challenges or ambiguities related to study selection and to refine, where necessary, the search strategy. We will develop, in consultation with our knowledge user partners, a screening tool, to determine the relevance of papers to informal care policies and also to code the type of data retrieved (e.g. reviews, empirical data, theoretical discussion, policy brief, government documents, web content, conference paper). We will recruit two graduate students (Master of Public Policy) who have received training in the scoping review process to screen the titles, abstracts/summaries or executive summaries that are returned by the search. These

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reviewers will classify records as “potentially relevant” or “exclude.” When the relevance of a publication is in doubt, the full text will be retrieved. To mitigate bias in the selection process, two members of the research team will independently review one percent of the abstracts/summaries and compare their results with the graduate students’ results. Our research questions may require some refinement at this stage to ensure the review’s feasibility and relevance. Next, the graduate student reviewers will independently retrieve and review all full texts coded as ‘potentially relevant’ as part of considering them for inclusion. In the case of disagreements between the two reviewers on inclusion, the other team members will be consulted to make the final decision. During this stage, the research team will organize monthly meetings/teleconferences to discuss progress, findings, challenges and uncertainties related to study selection.

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Stage Four: Charting the Data At this stage, we will extract data from the included studies, using a deductively generated coding tree and importing the data into NVivo 10 for data analysis. Our research team will collectively develop the data-charting form (or extraction form), using Microsoft Excel sheets, in order to decide on extract variables that best help answer our research questions. The extraction form will be derived from our research questions and also from the best relevant papers. We will treat charting as an iterative process in which we will constantly update the data-charting form as the analysis proceeds, similar to the process used in inductive coding in qualitative data analysis. The two graduate students with two members of the research team will independently extract data, using a datacharting form, from the first five studies and check if their data extraction approach is consistent with the research questions. The graduate students will then independently continue extracting data and the research lead will double check the extracted data to ensure accuracy and completeness.

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The data extracted will include: Canadian location: federal/province/territory, author/s or institution/s or organization/s, publication title, publication year, research question or study purpose or policy goal/s, type of policies (supportive, integration), target populations (children, adults, seniors), targeted policy issues (e.g. drug abuse, childcare, homelessness, chronic disease), barriers/facilitators to implementation of policies, and evidence of success, if available. This list of extracted data will be modified as the research team becomes more familiar with the literature.

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Stage Five: Collating, Summarizing, and Reporting the Results This stage is generally the most extensive phase of a scoping review. Once we gather/extract all data, we will establish a working group to meaningfully interpret the

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data. With the research questions in mind, the two graduate students will quantify the extracted data and produce a descriptive summary of the included materials (e.g. for journal articles we will extract overall number of studies included, types of study design, years of publication, study population, provinces/territories where studies were conducted, and type of policy issues addressed). As scoping reviews are not a short summary of journal articles and grey literature, the analytical synthesis of extracted data is critical. As such, we will conduct a constant comparative analysis using NVivo10 in order to organize our data into overarching categories. Using constant comparison analysis allows: comparisons to be made across concepts, similarities, differences, and gaps to be identified, and a conceptual framework to emerge. During the synthesis phase, we will systematically integrate the extracted data and will develop a taxonomy of informal care policies. We will develop a conceptual framework with the following key elements for classification which will also be the starting point for our coding nodes: the policy instruments (supportive or integrative); policy issues (e.g. drug abuse, childcare, homelessness, chronic disease); target populations (children, adults, seniors); policy objectives (e.g. wellbeing, satisfaction, efficiency, effectiveness); barriers and facilitators; and policy success. We will seek the views of our knowledge users at this phase via email, teleconference, or web-conference to allow their inputs in reviewing the findings, before providing policy recommendations 54 .

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Stage Six: Consultation Consultation enhances the methodological rigour of the review and should be a compulsory stage in scoping reviews 56. In our scoping review, we will involve knowledge users at all stages of the review. By doing so, we will move beyond knowledge translation towards an iterative integrated knowledge translation 60. We will seek knowledge users’ input to further refine the review questions; to add a higher level of meaning, content and expertise to our review preliminary findings; to tailor our review findings to the knowledge users’ needs (in terms of policy practice); and to make our review findings more applicable. We engage knowledge users in the first stages of the review via email and teleconference. We will hold a workshop with knowledge users to have their input for developing the comprehensive conceptual framework that classifies informal care policies.

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Ethics and Dissemination This scoping review aims to synthesize the existing Canadian evidence from a wide range of disciplines about informal care networ policies to enhance understanding about these policies and to extrapolate policy instruments that may be particularly relevant for elderly care. The main outputs of this knowledge synthesis will be 1) a conceptual framework

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that classifies policy instruments that support informal care or integrate them into formal systems of care, 2) potential barriers and facilitators for implementing those policies. We will disseminate the results of our review via diverse means. Upon completion of the review, we will present the findings at a national academic conference and publish a research report as well as one academic peer-reviewed article. We will also develop a conceptual framework that classifies informal care policies to be made available online for free as an evidence repository. We will further publish a series of policy briefs to be developed collaboratively with knowledge users about how to promote and better implement informal care policies through use of findings of this review. Other means of disseminating our review results include blogs that intersect academic and popular internet dissemination; a short (3-4 minute) YouTube (or series of YouTube videos) discussing policy implications of the findings; a webinar in collaboration with our knowledge users; and media interviews to disseminate findings and support the uptake of results. We will pursue an integrated knowledge translation strategy as our knowledge users are closely engaged throughout the entire research cycle, and directly contribute to the policy relevant publications of the project (see Appendix Table 3 for full list of dissemination tools for different target audiences).

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Conclusion As the population ages policy attention has shifted towards policies to support informal caregivers and integrate them into formal systems of care. Our knowledge of these policy approaches in Canada is, however, limited. This scoping review aims to address this gap in the literature by synthesizing diverse policy instruments adopted in Canada and across a wide range of disciplines (i.e. policy issues). The results of our review will assist policy makers to derive policy lessons and identify policy opportunities that can be applied to improving eldercare. One of the key findings of our review will be identification of successful informal care policies and potential barriers and facilitators to implementation of these policies which will provide a guide to policy makers and practitioners in shaping future evidence-based policies in eldercare in Canada and ultimately enhancing wellbeing of both elder population and their informal care givers.

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Contributors: AKM and ML together conceived the review approach. AKM wrote the first draft of the manuscript. ML critically reviewed and revised the manuscript. Both AKM and ML read and approved the final version of the manuscript. Funding: None Competing interests: None declared. Data sharing: As this is a scoping review protocol, no additional data is available.

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Aronson J, Neysmith SM. The Retreat of the State and Long-Term Care Provision: Implications for Frail Elderly People, Unpaid Family Carers and Paid Home Care Workers. Studies in Political Economy. 1997;53(1):37-66. Aronson J, Neysmith SM. Obscuring the costs of home care: restructuring at work. Work, employment and society. 2006;20(1):27-45. Daly T. Out of Place: Mediating Health and Social Care in Ontario's Long-Term Care Sector. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):63-75. Carstairs S, Keon W. Special Senate Committee on Aging: Final Report. Ottawa, ON: Government of Canada; 2009. Grunfeld E, Glossop R, McDowell I, Danbrook C. Caring for elderly people at home: the consequences to caregivers. CMAJ: Canadian Medical Association Journal. 1997;157(8):1101-1105. Criel B, Vanlerberghe V, De Koker B, Decraene B, Engels E, Waltens R. Informal home care for elderly in Belgium: a study on the features and challenges of informal care at local level. Community Ment Health J. 2014;50(7):848-853. Singer GHS, Biegel DE, Ethridge BL. Trends Impacting Public Policy Support for Caregiving Families. Journal of Family Social Work. 2010;13(3):191-207. Levine C, Halper D, Peist A, Gould DA. Bridging troubled waters: family caregivers, transitions, and long-term care. Health Affairs. 2010;29(1):116-124. Information CIfH. Supporting Informal Caregivers – The Heart of Home Care. Ottawa, ON: CIHI; 2010. Forum MH. Improving Support for Unpaid Caregivers in Ontario: Panel Summary. Hamilton, ON: McMaster University; 2014. Barrett P, Hale B, Butler M. Informal Care in Context: An Expression of Social Relationships. Family Care and Social Capital: Transitions in Informal Care: Springer; 2014:17-34. De Aguiar CH, Fateminasab R, Frazelle CG, et al. The networked, robotic home+ furniture suite: A distributed, assistive technology facilitating aging in place. Paper presented at: Automation Science and Engineering (CASE), 2016 IEEE International Conference on2016. Simon H. Administrative Behavior. How organizations can be understood in terms of decision processes. New York: Free Press; 1974. Antonucci TC, Ajrouch KJ, Birditt KS. The Convoy Model: Explaining Social Relations From a Multidisciplinary Perspective. The Gerontologist. 2013;54(1):8292. Sims-Gould J, Martin-Matthews A. Family Caregiving or Caregiving Alone: Who Helps the Helper? Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):27-45. Fast J. Caregiving for Older Adults with Disabilities. Montreal, QC: IRPP;2015.

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Fast J, Keating N, Otfinowski P, Derksen L. Characteristics of family/friend care networks of frail seniors. Canadian journal on aging = La revue canadienne du vieillissement. 2004;23(1):5-19. Fast J, Duncan K, Dunlop C, et al. Policy Brief No. 2 - Gender differences in family/friend caregiving in Canada. Ottawa, ON: Government of Canada;2011. Gallicchio L, Siddiqi N, Langenberg P, Baumgarten M. Gender differences in burden and depression among informal caregivers of demented elders in the community. International journal of geriatric psychiatry. 2002;17(2):154-163. Andersson S, Erlingsson C, Magnusson L, Hanson E. Information and communication technology-mediated support for working carers of older family members: an integrative literature review. International Journal of Care and Caring. 2017;1(2):247-273. Milne A, Larkin M. Knowledge generation about care‐giving in the UK: a critical review of research paradigms. Health Soc Care Community. 2015;23(1):4-13. Heaton J. The gaze and visibility of the carer: a Foucauldian analysis of the discourse of informal care. Sociology of Health & Illness. 1999;21(6):759-777. Pickard L, King D, Knapp M. The ‘visibility’of unpaid care in England. Journal of Social Work. 2016;16(3):263-282. Schneider U, Sundström G, Johannson L, Tortosa MA. Policies to support informal care. Long-term care reforms in OECD countries. 2015:219-246. Einolf CJ, Prouteau L, Nezhina T, Ibrayeva AR. Informal, Unorganized Volunteering. The Palgrave Handbook of Volunteering, Civic Participation, and Nonprofit Associations: Springer; 2016:223-241. Casanova G, Lamura G, Principi A. Valuing and Integrating Informal Care as a Core Component of Long-Term Care for Older People: A Comparison of Recent Developments in Italy and Spain. J Aging Soc Policy. 2016:1-17. Lum J. Informal Caregiving: In Focus Backgrounder. Toronto, ON: Canadian Research Network for Care in the Community; 2011. Peckham A, Williams AP, Neysmith S. Balancing formal and informal care for older persons: how case managers respond. Canadian Journal on Aging/La Revue canadienne du vieillissement. 2014;33(02):123-136. Keating NC, Fast JE, Lero DS, Lucas SJ, Eales J. A taxonomy of the economic costs of family care to adults. The Journal of the Economics of Ageing. 2014;3:11-20. Stadnyck R, Fletcher S, Eales J, Fast J, Keating N. Employed Family/Friend Caregivers to Adults with Disabilities: The Impact of Public Policies on Caregivers’ Costs. Department of Human Ecology: Universtiy of Alberta;2008. Wimo A, Winblad B, Jonsson L. An estimate of the total worldwide societal costs of dementia in 2005. Alzheimer's & dementia : the journal of the Alzheimer's Association. 2007;3(2):81-91. Hollander MJ, Liu G, Chappell NL. Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. Healthcare quarterly (Toronto, Ont). 2009;12(2):42-49.

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Buckner L, Yeandle S. Valuing Carers 2011 Calculating the value of carers’ support [Internet]. Leeds, UK; 2011. Available from: ht tp. circle leeds ac uk/files/2012/08/110512-circle-carers-uk-valuing-carers pdf Accessed. 2017;11. Ansello EF, Rosenthal C. Editorial: Hidden Costs and Invisible Contributions in Family Caregiving: An Introduction. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):1-6. Grant G. Invisible Contributions in Families with Children and Adults with Intellectual Disabilities. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):15-26. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. International journal of geriatric psychiatry. 2002;17(2):184-188. Lopez-Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. International journal of integrated care. 2012;12:e133. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2004;12(3):240-249. Fast J, Keating N, Yacshyn A. "I wish that I could just have a break”: Consequences of supporting adults with disabilities. Department of Human Ecology: University of Alberta;2008. Turcotte M. Family caregiving: What are the consequences? 2013. Keefe J, Guberman N, Fancey P, Barylak L. Policy Brief No. 19-Caregiver Assessment: An Essential Component of Continuing Care Policy. Population Change and Lifecourse Strategic Knowledge Cluster Research/Policy Brief. 2016;1(5):7. Reed C, Belger M, Dell'agnello G, et al. Caregiver Burden in Alzheimer's Disease: Differential Associations in Adult-Child and Spousal Caregivers in the GERAS Observational Study. Dementia and geriatric cognitive disorders extra. 2014;4(1):51-64. Jarrold K, Yeandle S. A weight off my mind: Exploring the impact and potential benefits of telecare for unpaid carers in Scotland. Glasgow, Scotland: Carers Scotland and the University of Leeds;2009. Mahoney DM, Mutschler PH, Tarlow B, Liss E. Real world implementation lessons and outcomes from the Worker Interactive Networking (WIN) project: workplace-based online caregiver support and remote monitoring of elders at home. Telemedicine journal and e-health : the official journal of the American Telemedicine Association. 2008;14(3):224-234. Reder S, Ambler G, Philipose M, Hedrick S. Technology and Long-term Care (TLC): A pilot evaluation of remote monitoring of elders. 2010. Lorig K, Thompson-Gallagher D, Traylor L, et al. Building Better Caregivers. Journal of Applied Gerontology. 2012;31(3):423-437.

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Rajnovich B, Keefe J. Supporting caregivers of dependent adults in the 21st century. 2005. AGE-WELL. Home Page. 2017; http://agewell-nce.ca/. Accessed 10AUG, 2017. Ageing ESoDIfAaH. Blueprint for a digital transformation of health and care in an ageing society. 2016. Stoltz P, Andersson EP, Willman A. Support in nursing--an evolutionary concept analysis. International journal of nursing studies. 2007;44(8):1478-1489. National Seniors Strategy. Ensuring that the family and friends of older Canadians who provide unpaid care for their loved ones are acknowledged and supported. 2017; http://nationalseniorsstrategy.ca/the-four-pillars/pillar-4/, 11 August 2017. Spalding K, Watkins JR, Williams AP. Self Managed Care Programs in Canada: A Report to Health Canada. 2006. British Columbia Law Institute. Care/Work: Law Reform to Support Family Caregivers to Balance Paid Work and Unpaid Caregiving. British Columbia Law Institute;2010. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International journal of social research methodology. 2005;8(1):19-32. Daudt HM, van Mossel C, Scott SJ. Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s framework. BMC medical research methodology. 2013;13(1):48. Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implementation Science. 2010;5(1):69. Langlois EV, Ranson MK, Bärnighausen T, et al. Advancing the field of health systems research synthesis. Systematic reviews. 2015;4(1):90. Valaitis R, Martin-Misener R, Wong ST, et al. Methods, strategies and technologies used to conduct a scoping literature review of collaboration between primary care and public health. Primary Health Care Research & Development. 2012;13(03):219-236. Riedling AM. Learning To Learn: A Guide to Becoming Information Literate. ERIC; 2002. Grimshaw J. A Knowledge Synthesis Chapter. Canadian Institutes of Health Research; 2015.

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Appendix

Table 1: Search Strategy and Terms Search Question Key Concepts Search Strategy for Medline [will be adapted for other databases]

Limit to:

1508

AND

Search Terms AND Concept 3 Policy Policies Strateg* Mechanism* Instrument* "Policy objective*" "Policy action*" "Policy area*" "Policy instrument*" "Policy issue*" "Policy domain*"

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Concept 2 Federal Government National Central Provinc* Territor* Region* Local Municipal*

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AND

Concept 4 "Informal Care*" Volunteer* Relative* Family Families Relative* Friend* Caregiver* "Care giver*" "Informal care*" Voluntar* Unpaid Spouse Child* Partner Neighbour

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OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR

Concept 1 Canada

Canada, Federal/Province/Territory, Policies, Informal Caregivers Canada. ti,ab,kw. AND (federal OR government OR national OR central OR provinc* OR territor* OR region* OR local OR municipal*).ti,ab,kw. AND (policy OR policies OR strateg* OR mechanism* OR instrument* OR "policy objective*" OR "policy action*" OR "policy area*" OR "policy instrument*" OR "policy issue*" OR "policy domain*"). ti,ab,kw. AND ("informal care*" OR volunteer* OR family* OR families OR relative* OR friend* OR caregiver* OR "care giver*" OR voluntar* OR unpaid OR spouse OR child* OR partner OR neighbour).ti,ab,kw. English language and full text and "review articles" and humans and yr="1990 -Current"

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Initial Search Results in Medline Ovid (search conducted on 12 August 2017)

Policies supporting informal caregivers across Canada

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Table 2: Search Sources Databases

Conference Abstracts Conference Proceedings Citation Index- Science (CPCI-S) via Web of Science Conference Proceedings Citation Index- Social Science & Humanities (CPCISSH) via Web of Science

Applied Social Sciences Index and Abstracts via ProQuest

EMBASE via Ovid SP [Excluding MEDLINE]

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International Bibliography of the Social Sciences via ProQuest

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McMaster Health Forum - Health System Evidence MEDLINE via Ovid

PubMed [Excluding MEDLINE]

Dissertations & Theses A&I via ProQuest

ISI Proceedings

Google Scholar OpenGrey

Social Science Citation Index (SSRN)

Canadian Research Index Canadian Electronic Library Canadian Public Policy Index LabourSource (formerly Labour Spectrum)

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Social Sciences Citation Index (SSCI) via Web of Science Social Services Abstracts via ProQuest

Canadian Public Policy Index PAIS Index - Public Affairs Information Service

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Scopus

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Science Citation Index Expanded (SCI-EXPANDED) via Web of Science

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PAIS International via ProQuest

Grey Literature

Joanna Briggs Institute EBP Database Google

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Sociological Abstracts via ProQuest Informit Health Collection International Bibliography of Social Sciences Cumulative Index to Nursing and Allied Health Literature (CINAHL)

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PsycINFO

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Table 3: Dissemination of Findings Intended Audience

Dissemination Tools/Means

Federal, provincial, and local/municipal governments Policy makers in other countries

Research report, policy brief, blog, YouTube videos, webinar Research report and policy briefs available online for free as an evidence repository, blogs, YouTube videos, webinar Peer-reviewed articles and conference presentations, blogs, YouTube videos, webinar Media engagement through press releases and conferences targeting publication in newspapers, magazine, radio, television

Research community

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General public

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Table 4: Research Project Timeline Research Activities

Prior to Project Start Date

Consultation with the knowledge users (KUs) on the research questions and research proposal Consulting KUs to refine the research questions Confirming search strategy with information scientist Conducting search in multiple search sources Identifying relevant studies Relevance testing by identifying inclusion and exclusion criteria Entry of Data into NVivo10 Cross-check exercise to ensure consistency of literature review by team members Extracting data from included studies (charting the data) Data analysis, synthesis, consultation with KUs through holding workshop with KUs Develop conceptual framework to classify informal network policies with input from KUs Drafting review findings report Drafting policy briefs Submission to peer-reviewed journals Presenting findings at relevant conferences

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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol

Journal: Manuscript ID

BMJ Open bmjopen-2017-019220.R1

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Article Type:

Date Submitted by the Author:

Protocol 09-Mar-2018

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Complete List of Authors:

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Khayatzadeh-Mahani, Akram; University of Calgary, School of Public Policy; Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran Leslie, Myles; Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada Health policy

Secondary Subject Heading:

Health policy

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Keywords:

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Primary Subject Heading:

Health policy < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Informal Care Policies, Canada

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Title Page Title: Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Authors’ name and affiliation: Akram Khayatzadeh-Mahani (PhD)1,2, Myles Leslie (PhD)1,3 1

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School of Public Policy, University of Calgary, Calgary, Alberta, Canada

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Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran

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Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

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Corresponding author: Myles Leslie

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Email address: [email protected]

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Address: School of Public Policy, University of Calgary, Downtown Campus, 906 8th Avenue S.W., 5th Floor, Calgary, Alberta T2P 1H9 Phone Number: +1 (403) 605 5475 Project Start Date: June 2018

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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Abstract Introduction: As the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in eldercare, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance not just to the elderly, but to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial, and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the eldercare policy environment.

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Methods and Analysis: Given the vast and multi-disciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O’Malley that entails six stages including 1) identifying the research question(s), 2) searching for relevant studies, 3) selecting studies, 4) charting the data, 5) collating, summarizing, and reporting the results, 6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible.

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Ethics and Dissemination: We will pursue an iterative integrated knowledge translation strategy engaging our knowledge users through all stages of the review, and ensuring they directly contribute to the project’s policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada’s Englishlanguage informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies.

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Strengths and limitations of this study: Strengths: • The review adopts an iterative, integrative approach to knowledge translation by engaging diverse knowledge users in its design, analysis, and dissemination. • Identifying diverse informal care policies and potential barriers and facilitators to implementation of these policies will provide a guide to policy makers and practitioners in shaping future evidence-based policies for supporting eldercare in

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Canada and internationally. Limitations: • As French is an official language in a number of Canada’s fourteen major political jurisdictions, by limiting our search to English language documents we will be excluding some potentially important unilingually French results. • As this is a scoping review, we do not assess the quality of evidence nor do we rank/grade evidence as is normally performed in a systematic review.

Introduction As governments have reduced their involvement in providing institutional long-term elder care,1-3 leveraging informal care for this work has become a key strategy in maintaining healthcare system sustainability worldwide.4-8 Informal care refers to the unpaid voluntary care or support provided by family members, friends, and neighbours.9,10 As the population ages, and the cohort aged 65 or over increases, policy attention has shifted to finding ways to support and empower informal groups of helpers and caregivers as part of a strategy to avoid, or delay the institutionalization of elders6,8,1113 and as part of a trend towards helping people stay in their own homes and communities as they age.14 In Canada, for instance, only 2% of elders, age 65 and over, receiving publicly funded home care services do not require any additional support from informal carers. The remaining 98% rely on informal caregivers to provide the help and care necessary for their well-being.11 Despite being a key policy element, we know little about the strategies, tactics, and programs that have been successful in supporting not just informal care for the elderly, but also in other contexts such as disability. The lessons learned in informal care policy generally may well be valuable in refining specific efforts to support and improve informal care for elders.

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Informal caregivers providing care for elders are a specific example of a general trend in the health and social policies of developed nations. We use ‘informal caregivers’ to refer to groups that arise organically out of their members’ interests and needs and that emphasize horizontal, or in-group communication. In contrast, formal caregiving groups are formed out of policy and institutional interests, and emphasize vertical command, control, and communications structures.15 The concept of an informal care group emerges from the ‘convoy theory of social support’16 which posits concentric circles of close-by helpers and even closer caregivers17 all of whom bring not just physical, but also social resources to delivering care.13 In the Canadian context, the reality of these convoys is that they are far more likely to be dyadic than multi-member groups,18,19 and, as elsewhere in the world, their work falls predominantly to women. 20-22

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Fifty years ago ‘informal care’ as either a phrase or concept was unheard of, and the activities of these close-knit groups as they cared for the elderly or persons with a physical or cognitive disability were beyond the attention of policy makers. This began to change as feminist activists and academics through the 1970s brought governmental and societal attention to the fact that women were providing unpaid labour in the majority of households.23 This consciousness raising was combined with state-level interests in providing healthcare in the community rather than in institutions.24,25 It was then only a short step for policy makers to imagine care provision not just taking place in the community, but being delivered by the community. Through the 1980s and 1990s ‘informal care’ became a more widely recognized term, and these groups, oxymoronically, acquired a position in the health and social care policy agenda.

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In the UK, the implementation of two laws – the Invalid Carers Act (ICA) of 1976, and the Carers Recognition and Services Act (Carers) of 1995 – saw informal caregivers become the specific object of formal policy efforts. The ICA was a means-tested support delivered as a cash benefit to single carers of both genders, and represented the first official recognition of informal caregivers in UK law.26 The Carers Act gave those who provide ‘a substantial amount of care on a regular basis’ the right to request an assessment of their needs. The assessment right did not apply to volunteers (paid or unpaid) from organizations providing care. There was, however, no legal duty on the local government to provide such carers with any services or support beyond the assessment of need. 25 As informal caregivers have become the object of policy attention and knowledge production, and as carers themselves have coalesced around this new identity, variations on, and cognates of the British examples have appeared in the policies of different countries around the world.25,27-29 Thus, putatively ‘informal’ caregivers in many jurisdictions have come to be integrated into various ‘formal’ policy, administration or care delivery systems.

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Although informal caregivers may operate without direct official institutional support,30 they are perhaps best conceptualised as personal, caring interrelationships among family, friends, and relatives that are more or less connected to formal systems of policy-making and care delivery. Indeed, informal caregivers are widely recognized as contributing to the sustainability of formal care systems.31 In making these contributions, they extract a broad range of economic32,33 and time34 commitments from informal caregivers with the imputed economic contribution of these caregivers estimated, in Canada, at $25 Billion per year.35 UK estimates based on a replacement cost approach, peg the value of unpaid care provided by informal caregivers working in all contexts at £119 billon – a number that exceeds the annual cost of running the National Health Service (NHS).27,36 In Canada, and in the specific context of eldercare provision, informal caregivers provide between 70 and 90 per cent of care for the elderly, with a decline in their activities

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projected to increase the costs incurred by the formal care system by between 5 and 35 per cent.11,31 While the unpaid, often invisible,37,38 work of these informal caregivers can be rewarding39, it can also lead to caregiver anxiety40,41 and burnout.42 A recent Ontario study shows that nearly a third of families who had been providing informal care for more than two years spent on average 20 hours a week.31,43 When intensive and sustained, this sort of commitment can limit caregivers’ social engagement and participation in the paid labour force, as well as increase the risk of physical and mental health problems.31,44 A range of studies indicate that the majority of informal caregivers participating in the labour force experience difficulty juggling work and caregiving responsibilities22,45 with negative consequences for their peace of mind, ability to sleep, and productiveness and mood at work.46-48 Indeed, many caregivers dropout or are forced out of the labour force as they attempt to balance their responsibilities.49

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The critical need for policies supportive of informal caregivers as they make their significant contributions to society has been recognized.13 Policy makers in many developed countries have introduced a range of measures to support informal caregivers such as providing cash benefits, tax credits, or legal protections for workers who are also caregivers; and also by improving the integration of informal caregivers into formal system elements such as hospitals, primary care teams, long-term care providers, and professional associations.29,44,50 There has also been an increasing interest, at policy levels, in innovative uses of technology to support caregivers.51,52 The aim of these various policy supports is to improve informal caregivers’ competence in, and capacity to, care.53 Unfortunately, policy and practice development in the fields of law, regulation, finance, organizational reform, and technology has been organic rather than systematic, and so the existing literature provides only limited information on the diverse approaches to creating policy that supports informal caregivers or their integration into formal systems.

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In this review, we will search for Canadian literature from across disciplines to identify the broad range of policy instruments different provinces and territories have adopted in relation to informal caregivers. In elder care, for example, a range of organizations have come together to ask the federal government to design a “National Seniors Strategy,” with a particular emphasis on supporting caregivers taking the form of enhanced job protection measures, caregiver tax credits, and enhanced Canada Pension Plan contribution allowances.54 If these are some of the policy options the federal government is pursuing, it is important to understand that Canadian health and social policies are determined and administered across fourteen jurisdictions (one central/federal, ten provincial, and three territorial). Each jurisdiction has various levels of responsibility and

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interests, as well as its own political system. These jurisdictional variations have led to the design and implementation of diverse policies in support of informal caregivers. A striking example can be found in policies aimed at promoting and supporting ‘selfmanaged care’ (SMC). These have, since the 1970s, become increasingly popular in a range of Canadian jurisdictions. Generally, in an SMC, an earmarked budget is assigned to a recipient of care, who is free to choose services and vendors to meet his or her needs.55 Although SMC programs have been implemented across all ten provinces, only three provinces – British Columbia, Manitoba, and Nova Scotia – permit care recipients to use funds to compensate family caregivers for their labour.56 We aim to capture these sorts of cross-jurisdictional variation in what might otherwise appear to be consistent policies. Our aim here is not just to highlight and understand Canada’s variations but to establish a methodological and empirical foundation for a major international comparison. This is to say, the results of the present scoping review will support larger efforts in the future to perform a cross-national comparative review.

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In this review, we are going to address the following five objectives: 1) to analyze and synthesize existing Canadian evidence through a comprehensive review of grey and academic literature on policy instruments to support and integrate informal caregivers across Canada, 2) to develop a conceptual framework that classifies diverse informal care policies, 3) to explore different policy objectives behind adopting/developing those policy instruments (e.g. wellbeing, satisfaction, efficiency, effectiveness), 4) to explore potential barriers and facilitators to implementation of diverse policy instruments, and 5) to identify, in conjunction with our knowledge user partners, the approaches, methods, and lessons learned in the broader literature that are applicable to the specific challenges of informal caregivers delivering elder care.

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Methods and Analysis Given the limited nature of existing knowledge on different informal care policies in Canada, the vast and multi-disciplinary nature of the literature on informal care (ranging from elder care to disability, etc.), and thus far limited efforts to synthesize existing knowledge, we will use a scoping review methodology.57 In a scoping review, the available literature is comprehensively reviewed in order to map the key concepts within a research area and the main sources and types of evidence available.57-59 As a scoping review can inform a systematic review, 60,61 it can also assist in determining the value of undertaking a full systematic review on this topic.

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The scoping review, with its synthetic approach, is the cornerstone of robust knowledge translation efforts as it transforms a great deal of scientific literature into a reliable form that is readable and relevant to knowledge users.62,63 The Canadian Institutes of Health Research (CIHR), a federal/national agency that funds health research across Canada,

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defines a knowledge user as “an individual who is likely to be able to use the knowledge generated through research to make informed decisions about health policies, programs and/or practices”64. To increase the uptake of our review findings, we will engage diverse knowledge users including content experts, policy and decision makers, practitioners, and informal caregivers in the design, analysis, and dissemination of the review. By engaging a wide range of knowledge users in all stages of our review, we hope to co-produce knowledge and evidence that is useful and relevant to those who make real-world decisions and helping them make informed decisions. By adopting this knowledge coproduction approach (also known as iKT or participatory research), our knowledge users function as active research partners in generating research from conceptualisation to implementation rather than passive recipients of research or research products. This will enhance our understanding of the knowledge users’ context and needs, thereby increasing the policy-relevance of our research and enhancing integration of our review findings into policy and practice. It also increases knowledge users’ understanding of the research process.65,66

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We will follow the framework developed by Arksey and O’Malley (2005), which entails six stages, in our scoping review, as shown in Figure 1. We will treat these stages in an iterative way and will engage with each stage in a reflexive way and repeat steps, where necessary, to make sure that the literature is comprehensively covered.58 Figure 1 here

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Stage One: Identifying the Research Question/s

As scoping reviews seek to summarize the breadth of evidence, the research questions should be broad.57 According to Levac et al.59 selecting comprehensive areas of exploration facilitates direction and focus of the study. The overarching question that guides our review is: “how is informal care being addressed in provincial, territorial, and federal Canadian policies?” Our research team initially generated a list of potential research questions based on our experience and initial engagement with the relevant literature. We then began consultations with knowledge users including content experts, policy makers, practitioners, and informal caregivers to finalize the research questions. This input from knowledge users will ensure the study’s relevance, rigour, and comprehensiveness. Specifically, this ongoing engagement aims to improve the uptake of the review results by a broad range of knowledge users.67 The following research questions will guide this review:

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1. Which informal care policies are being addressed in the Canadian academic and grey literature?

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2. What are the policy objectives behind adopting policies to support informal care (e.g. wellbeing, satisfaction, efficiency, effectiveness)? 3. What are the barriers and facilitators of implementation for those policies in support of informal care? 4. What are the policy opportunities and lessons learned in the broader literature that are applicable to the specific challenges of informal caregivers delivering elder care? Stage Two: Identifying Relevant Studies At this stage, our research team will identify relevant studies and will develop a search strategy, terms to use, sources to be searched, time span and language.57 In accordance with Arksey and O’Malley’s recommendation that “comprehensiveness is the whole point of scoping the field”,57 we will employ a very broad search strategy. We will use a search strategy worksheet68 (see sample in Appendix Table 1) and will adjust search terms (concepts) based on nuances of each database. Our key concepts will include, but not be limited to (1) Canada, (2) federal/province/territory, (3) policies, and (4) informal care (see Appendix Table 1 for our detailed search strategy and terms). We will refine our search terms and undertake more sensitive searches of the literature throughout the review process, as necessary.

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As part of the broad search strategy, we will undertake the following five activities: electronic database search, web search, hand search of relevant journals, citations of relevant papers, and scanning the reference lists of relevant papers.

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To perform the electronic database search, we will employ an information scientist (or library scientist). As the research project is multidisciplinary in nature, we will be using diverse electronic databases including: Web of Science, PubMed, MEDLINE via Ovid; Sociological Abstracts; Social Science Citation Index (SSRN); Cumulative Index to Nursing and Allied Health Literature (CINAHL); PsycINFO; and EMBASE via Ovid [Excluding MEDLINE] (see the full list of databases in Appendix Table 2). We conducted a preliminary sample search in two databases: MEDLINE and Web of Science. The MEDLINE search strategy produced 1508 records (12 August 2017) while the Web of Science search produced 4083 results (12 August 2017).

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Grey literature refers to both published and unpublished materials that are generally not peer-reviewed or indexed in bibliographic databases.69 These include government reports, newsletters and bulletins, technical papers, working papers, theses, datasets, and proceedings of the seminars and conferences. Due to the paucity of peer-reviewed

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academic research in the area of policies in support of informal caregivers, the inclusion of grey literature or non-academic is especially important and valuable. These will also increase the breath, relevance and value of our review findings. For the grey literature we will search the following websites: Dissertations & Theses A&I via ProQuest; OpenGrey; ISI Proceedings; Conference Proceedings Citation Index–Social Science and Humanities; Joanna Briggs and ProQuest Dissertations and Theses; PAIS Index - Public Affairs Information Service; Google Scholar; and Google. For specific Canadian grey literature we will search the following databases: Canadian Research Index; Canadian Electronic Library; Canadian Public Policy Index; and LabourSource (formerly Labour Spectrum). Other websites will be identified by the research team and knowledge users.

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Upon completion of these electronic searches, we will conduct a hand search of key journals (e.g., Critical Public Health; Health Policy; Health Policy and Planning; Journal of Health Services Research and Policy; Health Services Research; Journal of Aging and Society; Health and Social Care in the Community; Social Policy and Administration; Journal of Aging Studies; The Gerontologist; Journal of Applied Gerontology; BMC Health Services Research; Journal of Aging and Social Policy; The International Journal of Integrated Care; Sociology of Health and Illness; Journal of Aging and Health; and key gerontological nursing journals) which will be identified by the research team and content experts. Citations of relevant papers will be also tracked. Finally, the reference lists of relevant papers will also be searched in order to find papers not identified in the initial search. All retrieved searches will be imported into Endnote in which the duplicate references will be identified and discarded. Since selected electronic databases to download citations and referencing are often inconsistent in their content and formatting, we anticipate a manual search for duplicates.67

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Stage Three: Relevance Testing In order to increase the rigour of our review, we will adopt a team approach59 to determine which studies/materials to include. At the beginning of the scoping review, the team will discuss and finalize the inclusion and exclusion criteria. The research team has initially decided to include any papers published since 1970 as informal caregivers became the specific object of formal policy efforts at this time. While our interest is in policies supporting informal care as they deliver eldercare, this is an exploratory study, and as such we will not limit our search strategy to eldercare. Rather, in an effort to achieve a breadth of understanding, and to facilitate comparative synthesis of opportunities and lessons learned we will include disability to target a broader range of informal care policy literature. We have also decided on the following inclusion criteria but these may be revised and refined following further engagement with our knowledge user partners.

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Initial Inclusion Criteria: • Academic and grey literature related to Canada only • Papers or documents that discuss policies to support informal caregivers (in the areas of elder care and disability) • Published or unpublished primary studies (quantitative, qualitative or mixedmethods studies), theses/dissertations, conference papers, theoretical discussions and grey literature Initial Exclusion Criteria: • Papers or documents published before 1970 • Papers or documents not published in English • Book reviews • Commentary and editorial papers • Non-Canadian materials (academic and grey literature)

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As recommended by Levac et al59 our reviewers will meet at the start, middle, and end of the abstract review process in order to discuss any challenges or ambiguities related to study selection and to refine, where necessary, the search strategy. We will develop, in consultation with our knowledge user partners, a screening tool, to determine the relevance of papers to informal care policies and also to code the type of data retrieved (e.g. reviews, empirical data, theoretical discussion, policy brief, government documents, web content, conference paper). We will recruit two graduate students (Master of Public Policy) who have received training in the scoping review process to screen the titles, abstracts/summaries or executive summaries that are returned by the search. These reviewers will classify records as “potentially relevant” or “exclude.” When the relevance of a publication is in doubt, the full text will be retrieved. To mitigate bias in the selection process, two members of the research team will independently review one percent of the abstracts/summaries and compare their results with the graduate students’ results. Our research questions may require some refinement at this stage to ensure the review’s feasibility and relevance.

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Next, the graduate student reviewers will independently retrieve and review all full texts coded as ‘potentially relevant’ as part of considering them for inclusion. In the case of disagreements between the two reviewers on inclusion, the other team members will be consulted to make the final decision. During this stage, the research team will organize monthly meetings/teleconferences to discuss progress, findings, challenges and uncertainties related to study selection. Stage Four: Charting the Data At this stage, we will extract data from the included studies, using a deductively

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generated coding tree and importing the data into NVivo 10 for data analysis. Our research team will collectively develop the data-charting form (or extraction form), using Framework Matrix capability in Nvivo,70 in order to decide on extract variables that best help answer our research questions. The extraction form will be derived from our research questions and also from the best relevant papers. We will treat charting as an iterative process in which we will constantly update the data-charting form as the analysis proceeds, similar to the process used in inductive coding in qualitative data analysis. The two graduate students with two members of the research team will independently extract data, using a data-charting form, from the first five studies and check if their data extraction approach is consistent with the research questions. The graduate students will then independently continue extracting data and the research lead will double check the extracted data to ensure accuracy and completeness.

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Our potential data extracted will include: Canadian location: federal/province/territory, author/s or institution/s or organization/s, publication title, publication year, research question or study purpose, policy objectives (e.g. wellbeing, satisfaction, efficiency, effectiveness), and barriers/facilitators to implementation of policies. This list of extracted data will be modified as the research team becomes more familiar with the literature.

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Stage Five: Collating, Summarizing, and Reporting the Results This stage is generally the most extensive phase of a scoping review. Once we gather/extract all data, we will establish a working group to meaningfully interpret the data. With the research questions in mind, the two graduate students will quantify the extracted data and produce a descriptive summary of the included materials (e.g. for journal articles we will extract overall number of studies included, types of study design, years of publication, study population, and provinces/territories where studies were conducted).

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As scoping reviews are not a short summary of journal articles and grey literature, the analytical synthesis of extracted data is critical. As such, we will conduct a constant comparative analysis using NVivo10 in order to organize our data into overarching categories. Using constant comparison analysis allows: comparisons to be made across concepts, similarities, differences, and gaps to be identified, and a conceptual framework to emerge. During the synthesis phase, we will systematically integrate the extracted data and will develop a taxonomy of informal care policies. We will develop a conceptual framework with the following potential key elements for classification which will also be the starting point for our coding nodes: the policy instruments; policy objectives (e.g. wellbeing, satisfaction, efficiency, effectiveness); and barriers and facilitators. We will seek the views of our knowledge users at this phase via email, teleconference, or web-

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conference to allow their inputs in reviewing the findings, before providing policy recommendations.57 Stage Six: Consultation Consultation enhances the methodological rigour of the review and should be a compulsory stage in scoping reviews.59 In our scoping review, we will involve knowledge users at all stages of the review. By doing so, we will move beyond knowledge translation towards an iterative integrated knowledge translation (iKT).71 We will seek knowledge users’ input to further refine the review questions; to add a higher level of meaning, content and expertise to our review preliminary findings; to tailor our review findings to the knowledge users’ needs (in terms of policy practice); and to make our review findings more applicable. We will engage knowledge users in the first stages of the review via email and teleconference. We will hold a workshop/policy roundtable with knowledge users to have their input for developing the comprehensive conceptual framework that classifies informal care policies.

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Patient and Public Involvement Canadian Institutes for Health Research (CIHR) Strategy for Patient Outcome Research (SPOR) provides a broad definition of ‘patient’ that includes caregivers and family members. In our research we will recruit informal caregivers, from community organizations such as IMAGINE Citizens (an independent group of Alberta citizens who participate in patient-oriented research) as a proxy for the broad term of ‘patient’. In developing the scoping review protocol, our research team initially generated a list of potential research questions based on our experience and initial engagement with the relevant literature. We then began consultations with knowledge users including informal caregivers, via email and teleconference, to finalize the research questions. We will engage informal caregivers throughout the entire cycle of our research. We will seek their input for a number of reasons, among others, to further refine our review questions; to tailor our review findings to their needs; to add a higher level of meaning, content and expertise to our review preliminary findings; and to make our review findings more applicable. We will hold a workshop/policy roundtable with knowledge users, including informal caregivers, to have their input for developing the comprehensive conceptual framework that classifies informal care policies.

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As our study engages a wide range of knowledge users and stakeholders, including informal caregivers, we will disseminate the results of our review via diverse means. For the specific audience of informal caregivers our dissemination strategies include: blogs that intersect academic and popular internet dissemination; a short (3-4 minute) YouTube (or series of YouTube videos) discussing policy implications of the findings; a webinar in collaboration with our knowledge users; and media interviews to disseminate findings

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and support the uptake of results. Ethics and Dissemination This scoping review aims to synthesize the existing Canadian evidence about informal care policies to enhance understanding about these policies and to extrapolate policy instruments that may be particularly relevant for elderly care. The main outputs of this knowledge synthesis will be 1) a conceptual framework that classifies policy instruments that support informal care or integrate them into formal systems of care, 2) potential barriers and facilitators for implementing those policies. We will disseminate the results of our review via diverse means, publishing and presenting in academic fora. Our intention is to develop a conceptual framework that classifies informal care policies, and use this framework to organize an online, free-ofcharge, evidence repository. We will further publish a series of policy briefs to be developed collaboratively with knowledge users about how to promote and better implement informal care policies. Other means of disseminating our review results include blogs that intersect academic and popular internet dissemination; a short (3-4 minute) YouTube (or series of YouTube videos) discussing policy implications of the findings; a webinar in collaboration with our knowledge users; and media interviews to disseminate findings and support the uptake of results. We will pursue an integrated knowledge translation (iKT) strategy as our knowledge users are closely engaged throughout the entire research cycle, and directly contribute to the policy relevant publications of the project (see Appendix Table 3 for full list of dissemination tools for different target audiences).

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Conclusion As the population ages policy attention has shifted towards policies to support informal caregivers and integrate them into formal systems of care. Our knowledge of these policy approaches in Canada is, however, limited. This scoping review aims to address this gap in the literature by synthesizing diverse policy instruments adopted in Canada. The results of our review will assist policy makers to derive policy lessons and identify policy opportunities that can be applied to improving eldercare. One of the key findings of our review will be identification of potential barriers and facilitators to implementation of these policies which will provide a guide to policy makers and practitioners in shaping future evidence-based policies in eldercare in Canada and ultimately enhancing wellbeing of both the elder population and their informal caregivers.

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Contributors: AKM and ML together conceived the review approach. AKM wrote the first draft of the manuscript. ML critically reviewed and revised the manuscript. Both AKM and ML read and approved the final version of the manuscript.

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Funding: None Competing interests: None declared. Data sharing: As this is a scoping review protocol, no additional data is available. Figure Legend: Figure 1: Stages of scoping review References 1.

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Peckham A, Williams AP, Neysmith S. Balancing formal and informal care for older persons: how case managers respond. Canadian Journal on Aging/La Revue canadienne du vieillissement. 2014;33(02):123-136. Keating NC, Fast JE, Lero DS, Lucas SJ, Eales J. A taxonomy of the economic costs of family care to adults. The Journal of the Economics of Ageing. 2014;3:11-20. Stadnyck R, Fletcher S, Eales J, Fast J, Keating N. Employed Family/Friend Caregivers to Adults with Disabilities: The Impact of Public Policies on Caregivers’ Costs. Department of Human Ecology: Universtiy of Alberta;2008. Wimo A, Winblad B, Jonsson L. An estimate of the total worldwide societal costs of dementia in 2005. Alzheimer's & dementia : the journal of the Alzheimer's Association. 2007;3(2):81-91. Hollander MJ, Liu G, Chappell NL. Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly. Healthcare quarterly (Toronto, Ont). 2009;12(2):42-49. Buckner L, Yeandle S. Valuing Carers 2011 Calculating the value of carers’ support [Internet]. Leeds, UK; 2011. Available from: ht tp. circle leeds ac uk/files/2012/08/110512-circle-carers-uk-valuing-carers pdf Accessed. 2017;11. Ansello EF, Rosenthal C. Editorial: Hidden Costs and Invisible Contributions in Family Caregiving: An Introduction. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):1-6. Grant G. Invisible Contributions in Families with Children and Adults with Intellectual Disabilities. Canadian Journal on Aging / La Revue canadienne du vieillissement. 2007;26(S1):15-26. Cohen CA, Colantonio A, Vernich L. Positive aspects of caregiving: rounding out the caregiver experience. International journal of geriatric psychiatry. 2002;17(2):184-188. Lopez-Hartmann M, Wens J, Verhoeven V, Remmen R. The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. International journal of integrated care. 2012;12:e133. Schulz R, Martire LM. Family caregiving of persons with dementia: prevalence, health effects, and support strategies. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2004;12(3):240-249. Fast J, Keating N, Yacshyn A. "I wish that I could just have a break”: Consequences of supporting adults with disabilities. Department of Human Ecology: University of Alberta;2008. Turcotte M. Family caregiving: What are the consequences? 2013. Keefe J, Guberman N, Fancey P, Barylak L. Policy Brief No. 19-Caregiver Assessment: An Essential Component of Continuing Care Policy. Population Change and Lifecourse Strategic Knowledge Cluster Research/Policy Brief. 2016;1(5):7. Reed C, Belger M, Dell'agnello G, et al. Caregiver Burden in Alzheimer's Disease: Differential Associations in Adult-Child and Spousal Caregivers in the GERAS

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Observational Study. Dementia and geriatric cognitive disorders extra. 2014;4(1):51-64. Jarrold K, Yeandle S. A weight off my mind: Exploring the impact and potential benefits of telecare for unpaid carers in Scotland. Glasgow, Scotland: Carers Scotland and the University of Leeds;2009. Mahoney DM, Mutschler PH, Tarlow B, Liss E. Real world implementation lessons and outcomes from the Worker Interactive Networking (WIN) project: workplace-based online caregiver support and remote monitoring of elders at home. Telemedicine journal and e-health : the official journal of the American Telemedicine Association. 2008;14(3):224-234. Reder S, Ambler G, Philipose M, Hedrick S. Technology and Long-term Care (TLC): A pilot evaluation of remote monitoring of elders. 2010. Lorig K, Thompson-Gallagher D, Traylor L, et al. Building Better Caregivers. Journal of Applied Gerontology. 2012;31(3):423-437. Rajnovich B, Keefe J. Supporting caregivers of dependent adults in the 21st century. 2005. AGE-WELL. Home Page. 2017; http://agewell-nce.ca/. Accessed 10AUG, 2017. Ageing ESoDIfAaH. Blueprint for a digital transformation of health and care in an ageing society. In:2016. Stoltz P, Andersson EP, Willman A. Support in nursing--an evolutionary concept analysis. International journal of nursing studies. 2007;44(8):1478-1489. National Seniors Strategy. Ensuring that the family and friends of older Canadians who provide unpaid care for their loved ones are acknowledged and supported. 2017; http://nationalseniorsstrategy.ca/the-four-pillars/pillar-4/, 11 August 2017. Spalding K, Watkins JR, Williams AP. Self Managed Care Programs in Canada: A Report to Health Canada. 2006. British Columbia Law Institute. Care/Work: Law Reform to Support Family Caregivers to Balance Paid Work and Unpaid Caregiving. British Columbia Law Institute;2010. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005;8(1):19-32. Daudt HM, van Mossel C, Scott SJ. Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s framework. BMC medical research methodology. 2013;13(1):48. Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implementation Science. 2010;5(1):69. Langlois EV, Ranson MK, Bärnighausen T, et al. Advancing the field of health systems research synthesis. Systematic reviews. 2015;4(1):90. Armstrong R, Hall BJ, Doyle J, Waters E. ‘Scoping the scope’of a cochrane review. Journal of Public Health. 2011;33(1):147-150. Harvey G. The many meanings of evidence: implications for the translational science agenda in healthcare. International Journal of Health Policy and Management. 2013;1(3):187.

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Salbach NM. Knowledge translation, evidence-based practice, and you. Physiotherapy Canada. 2010;62(4):293. Canadian Institutes of Health Research. About knowledge translation. 2018; http://www.cihr-irsc.gc.ca/e/29418.html. Accessed February 28, 2018. Rycroft-Malone J, Burton CR, Bucknall T, Graham ID, Hutchinson AM, Stacey D. Collaboration and co-production of knowledge in healthcare: opportunities and challenges. International journal of health policy and management. 2016;5(4):221. Kothari A, McCutcheon C, Graham ID. Defining integrated knowledge translation and moving forward: a response to recent commentaries. International journal of health policy and management. 2017;6(5):299. Valaitis R, Martin-Misener R, Wong ST, et al. Methods, strategies and technologies used to conduct a scoping literature review of collaboration between primary care and public health. Primary Health Care Research & Development. 2012;13(03):219-236. Riedling AM. Learning To Learn: A Guide to Becoming Information Literate. ERIC; 2002. Tillett S, Newbold E. Grey literature at The British Library: revealing a hidden resource. Interlending & Document Supply. 2006;34(2):70-73. Sweet L. Using NVivo and EndNote For Literature Reviews. 2014; http://www.flinders.edu.au/staff-developmentfiles/computer/NVivo_Endnote_Lit_review.pdf. Accessed 20 February 2018. Grimshaw J. A Knowledge Synthesis Chapter. In: Canadian Institutes of Health Research; 2015.

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Appendix Manuscript Title: Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Manuscript Type: Scoping Review Protocol

Table 1: Search Strategy and Terms Search Question

Policies supporting informal caregivers across Canada

Key Concepts

Canada, Federal/Province/Territory, Policies, Informal Caregivers

Search Strategy for Medline [will be adapted for other databases]

Canada. ti,ab,kw. AND (federal OR government OR national OR central OR provinc* OR territor* OR region* OR local OR municipal*).ti,ab,kw. AND (policy OR policies OR strateg* OR mechanism* OR instrument* OR "policy objective*" OR "policy action*" OR "policy area*" OR "policy instrument*" OR "policy issue*" OR "policy domain*"). ti,ab,kw. AND ("informal care*" OR volunteer* OR family* OR families OR relative* OR friend* OR caregiver* OR "care giver*" OR voluntar* OR unpaid OR spouse OR child* OR partner OR neighbour).ti,ab,kw. English language and full text and "review articles" and humans and yr="1990 -Current"

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AND

Search Terms AND Concept 3 Policy Policies Strateg* Mechanism* Instrument* "Policy objective*" "Policy action*" "Policy area*" "Policy instrument*" "Policy issue*" "Policy domain*"

AND

Concept 4 "Informal Care*" Volunteer* Relative* Family Families Relative* Friend* Caregiver* "Care giver*" "Informal care*" Voluntar* Unpaid Spouse Child* Partner Neighbour

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Concept 2 Federal Government National Central Provinc* Territor* Region* Local Municipal*

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OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR

Concept 1 Canada

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Initial Search Results in Medline Ovid (search conducted on 12 August 2017)

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Limit to:

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Table 2: Search Sources Databases

Conference Abstracts Conference Proceedings Citation Index- Science (CPCI-S) via Web of Science Conference Proceedings Citation Index- Social Science & Humanities (CPCISSH) via Web of Science

Applied Social Sciences Index and Abstracts via ProQuest

EMBASE via Ovid SP [Excluding MEDLINE]

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McMaster Health Forum - Health System Evidence MEDLINE via Ovid

Social Science Citation Index (SSRN)

Canadian Research Index Canadian Electronic Library Canadian Public Policy Index LabourSource (formerly Labour Spectrum)

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Social Sciences Citation Index (SSCI) via Web of Science Social Services Abstracts via ProQuest

Canadian Public Policy Index PAIS Index - Public Affairs Information Service

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Scopus

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Science Citation Index Expanded (SCI-EXPANDED) via Web of Science

ISI Proceedings

OpenGrey

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PubMed [Excluding MEDLINE]

Dissertations & Theses A&I via ProQuest

Google Scholar

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PAIS International via ProQuest

Grey Literature

Joanna Briggs Institute EBP Database Google

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Sociological Abstracts via ProQuest Informit Health Collection International Bibliography of Social Sciences Cumulative Index to Nursing and Allied Health Literature (CINAHL) PsycINFO

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Table 3: Dissemination of Findings Intended Audience

Dissemination Tools/Means

Federal, provincial, and local/municipal governments Policy makers in other countries

Research report, policy brief, blog, YouTube videos, webinar Research report and policy briefs available online for free as an evidence repository, blogs, YouTube videos, webinar Peer-reviewed articles and conference presentations, blogs, YouTube videos, webinar Media engagement through press releases and conferences targeting publication in newspapers, magazine, radio, television

Research community

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General public

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PRISMA-P (Preferred Reporting Items for Systematic review and Meta-Analysis Protocols) 2015 checklist: recommended items to address in a systematic review protocol* Section and topic

Item No

Checklist item

ADMINISTRATIVE INFORMATION Title: Identification Update Registration Authors: Contact

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(Page No.#)

1a 1b 2

Identify the report as a protocol of a systematic review (scoping review) If the protocol is for an update of a previous systematic review, identify as such If registered, provide the name of the registry (such as PROSPERO) and registration number

1 -

3a

Provide name, institutional affiliation, e-mail address of all protocol authors; provide physical mailing address of corresponding author Describe contributions of protocol authors and identify the guarantor of the review If the protocol represents an amendment of a previously completed or published protocol, identify as such and list changes; otherwise, state plan for documenting important protocol amendments

1

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Contributions Amendments

3b 4

Support: Sources Sponsor Role of sponsor or funder

5a 5b 5c

Indicate sources of financial or other support for the review Provide name for the review funder and/or sponsor Describe roles of funder(s), sponsor(s), and/or institution(s), if any, in developing the protocol

6 7

Describe the rationale for the review in the context of what is already known Provide an explicit statement of the question(s) the review will address with reference to participants, interventions, comparators, and outcomes (PICO)

5-6 6

Eligibility criteria

8

11

Information sources

9

Search strategy

10

Specify the study characteristics (such as PICO, study design, setting, time frame) and report characteristics (such as years considered, language, publication status) to be used as criteria for eligibility for the review Describe all intended information sources (such as electronic databases, contact with study authors, trial registers or other grey literature sources) with planned dates of coverage Present draft of search strategy to be used for at least one electronic database, including planned limits, such that it could be repeated

INTRODUCTION Rationale Objectives

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METHODS

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9-10 9 and Appendix

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Table 1 Study records: Data management Selection process Data collection process Data items Outcomes and prioritization Risk of bias in individual studies Data synthesis

11a

Describe the mechanism(s) that will be used to manage records and data throughout the review

12

11b

State the process that will be used for selecting studies (such as two independent reviewers) through each phase of the review (that is, screening, eligibility and inclusion in meta-analysis) Describe planned method of extracting data from reports (such as piloting forms, done independently, in duplicate), any processes for obtaining and confirming data from investigators List and define all variables for which data will be sought (such as PICO items, funding sources), any pre-planned data assumptions and simplifications List and define all outcomes for which data will be sought, including prioritization of main and additional outcomes, with rationale Describe anticipated methods for assessing risk of bias of individual studies, including whether this will be done at the outcome or study level, or both; state how this information will be used in data synthesis Describe criteria under which study data will be quantitatively synthesised If data are appropriate for quantitative synthesis, describe planned summary measures, methods of handling data and methods of combining data from studies, including any planned exploration of consistency (such as I2, Kendall’s τ) Describe any proposed additional analyses (such as sensitivity or subgroup analyses, meta-regression) If quantitative synthesis is not appropriate, describe the type of summary planned Specify any planned assessment of meta-bias(es) (such as publication bias across studies, selective reporting within studies) Describe how the strength of the body of evidence will be assessed (such as GRADE)

11

11c 12 13 14 15a 15b 15c 15d 16 17

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Meta-bias(es) NA+ Confidence in NA+ cumulative evidence * It is strongly recommended that this checklist be read in conjunction with the PRISMA-P Explanation and Elaboration (cite when available) for important clarification on the items. Amendments to a review protocol should be tracked and dated. The copyright for PRISMA-P (including checklist) is held by the PRISMA-P Group and is distributed under a Creative Commons Attribution Licence 4.0.

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From: Shamseer L, Moher D, Clarke M, Ghersi D, Liberati A, Petticrew M, Shekelle P, Stewart L, PRISMA-P Group. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ. 2015 Jan 2;349(jan02 1):g7647. + Sections 13, 14, 16, and 17 (outcomes & prioritization/risk of bias…/meta-bias/confidence in…) do not apply to scoping reviews but for systematic reviews as scoping reviews do not assess quality of studies for inclusion. That is why we used NA (not applicable).

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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol

Journal: Manuscript ID

BMJ Open bmjopen-2017-019220.R2

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Article Type:

Date Submitted by the Author:

Protocol 02-May-2018

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Complete List of Authors:

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Khayatzadeh-Mahani, Akram; University of Calgary, School of Public Policy; Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran Leslie, Myles; Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada Health policy

Secondary Subject Heading:

Health policy

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Keywords:

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Primary Subject Heading:

Health policy < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Informal Care Policies, Canada

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Title Page Title: Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Authors’ name and affiliation: Akram Khayatzadeh-Mahani (PhD)1,2, Myles Leslie (PhD)1,3 1

2

School of Public Policy, University of Calgary, Calgary, Alberta, Canada

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Health Services Management Research Center, Institute for Futures Studies in Health, Kerman University of Medical Sciences, Kerman, Iran

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Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada

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Corresponding author: Myles Leslie

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Email address: [email protected]

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Address: School of Public Policy, University of Calgary, Downtown Campus, 906 8th Avenue S.W., 5th Floor, Calgary, Alberta T2P 1H9 Phone Number: +1 (403) 605 5475 Project Start Date: June 2018

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Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Abstract Introduction: As the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in eldercare, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance not just to the elderly, but to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial, and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the eldercare policy environment.

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Methods and Analysis: Given the vast and multi-disciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O’Malley that entails six stages including 1) identifying the research question(s), 2) searching for relevant studies, 3) selecting studies, 4) charting the data, 5) collating, summarizing, and reporting the results, 6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review.

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Ethics and Dissemination: By adopting an iKT strategy we will ensure our knowledge users directly contribute to the project’s policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada’s Englishlanguage informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

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Strengths and limitations of this study: Strengths: • The review adopts an iterative, integrative approach to knowledge translation by engaging diverse knowledge users in its design, analysis, and dissemination. • This scoping review will inform a full systematic review on the topic. • The search strategy is broad and includes both peer-reviewed literature (electronic

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bibliographic databases) and grey literature (both published and unpublished materials that are generally not peer-reviewed or indexed in bibliographic databases). Limitations: • As French is an official language in a number of Canada’s fourteen major political jurisdictions, by limiting our search to English language documents we will be excluding some potentially important unilingually French results. • As this is a scoping review, we do not assess the quality of evidence nor do we rank/grade evidence as is normally performed in a systematic review.

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Introduction As governments have reduced their involvement in providing institutional long-term elder care,1-3 leveraging informal care for this work has become a key strategy in maintaining healthcare system sustainability worldwide.4-8 Informal care refers to the unpaid voluntary care or support provided by family members, friends, and neighbours.9,10 As the population ages, and the cohort aged 65 or over increases, policy attention has shifted to finding ways to support and empower informal groups of helpers and caregivers as part of a strategy to avoid, or delay the institutionalization of elders6,8,1113 and as part of a trend towards helping people stay in their own homes and communities as they age.14 In Canada, for instance, only 2% of elders, age 65 and over, receiving publicly funded home care services do not require any additional support from informal carers. The remaining 98% rely on informal caregivers to provide the help and care necessary for their well-being.11 Despite being a key policy element, we know little about the strategies, tactics, and programs that have been successful in supporting not just informal care for the elderly, but also in other contexts such as disability. The lessons learned in informal care policy generally may well be valuable in refining specific efforts to support and improve informal care for elders.

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Informal caregivers providing care for elders are a specific example of a general trend in the health and social policies of developed nations. We use ‘informal caregivers’ to refer to groups that arise organically out of their members’ interests and needs and that emphasize horizontal, or in-group communication. In contrast, formal caregiving groups are formed out of policy and institutional interests, and emphasize vertical command, control, and communications structures.15 The concept of an informal care group emerges from the ‘convoy theory of social support’16 which posits concentric circles of close-by helpers and even closer caregivers17 all of whom bring not just physical, but also social resources to delivering care.13 In the Canadian context, the reality of these convoys is that they are far more likely to be dyadic than multi-member groups,18,19 and, as elsewhere in the world, their work falls predominantly to women. 20-22

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Fifty years ago ‘informal care’ as either a phrase or concept was unheard of, and the activities of these close-knit groups as they cared for the elderly or persons with a physical or cognitive disability were beyond the attention of policy makers. This began to change as feminist activists and academics through the 1970s brought governmental and societal attention to the fact that women were providing unpaid labour in the majority of households.23 This consciousness raising was combined with state-level interests in providing healthcare in the community rather than in institutions.24,25 It was then only a short step for policy makers to imagine care provision not just taking place in the community, but being delivered by the community. Through the 1980s and 1990s ‘informal care’ became a more widely recognized term, and these groups, oxymoronically, acquired a position in the health and social care policy agenda.

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In the UK, the implementation of the Social Security (Invalid Carers Allowance) Regulations of 1976, and the Carers Recognition and Services Act (also known as Carers) of 1995 saw informal caregivers become the specific object of formal policy efforts. The Invalid Carers Allowance, now known as Carer’s Allowance, was an income-tested support delivered as a cash benefit to single female carers (not married) and male carers (marital status not specified for them), and represented the first official recognition of informal caregivers in UK law.26 The Carers Act gave those who provide ‘a substantial amount of care on a regular basis’ the right to request an assessment of their needs. The assessment right did not apply to volunteers (paid or unpaid) from organizations providing care. There was, however, no legal duty on the local government to provide such carers with any services or support beyond the assessment of need. 25 As informal caregivers have become the object of policy attention and knowledge production, and as carers themselves have coalesced around this new identity, variations on, and cognates of the British examples have appeared in the policies of different countries around the world.25,27-29 Thus, putatively ‘informal’ caregivers in many jurisdictions have come to be integrated into various ‘formal’ policy, administration or care delivery systems.

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Although informal caregivers may operate without direct official institutional support,30 they are perhaps best conceptualised as personal, caring interrelationships among family, friends, and relatives that are more or less connected to formal systems of policy-making and care delivery. Indeed, informal caregivers are widely recognized as contributing to the sustainability of formal care systems.31 In making these contributions, they extract a broad range of economic32,33 and time34 commitments from informal caregivers with the imputed economic contribution of these caregivers estimated, in Canada, at $25 Billion per year.35 UK estimates based on a replacement cost approach, peg the value of unpaid care provided by informal caregivers working in all contexts at £119 billon – a number that exceeds the annual cost of running the National Health Service (NHS).27,36 In

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Canada, and in the specific context of eldercare provision, informal caregivers provide between 70 and 90 per cent of care for the elderly, with a decline in their activities projected to increase the costs incurred by the formal care system by between 5 and 35 per cent.11,31 While the unpaid, often invisible,37,38 work of these informal caregivers can be rewarding39, it can also lead to caregiver anxiety40,41 and burnout.42 A recent Ontario study shows that nearly a third of families who had been providing informal care for more than two years spent on average 20 hours a week.31,43 When intensive and sustained, this sort of commitment can limit caregivers’ social engagement and participation in the paid labour force, as well as increase the risk of physical and mental health problems.31,44 A range of studies indicate that the majority of informal caregivers participating in the labour force experience difficulty juggling work and caregiving responsibilities22,45 with negative consequences for their peace of mind, ability to sleep, and productiveness and mood at work.46-48 Indeed, many caregivers dropout or are forced out of the labour force as they attempt to balance their responsibilities.49

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The critical need for policies supportive of informal caregivers as they make their significant contributions to society has been recognized.13 Policy makers in many developed countries have introduced a range of measures to support informal caregivers such as providing cash benefits, tax credits, or legal protections for workers who are also caregivers; and also by improving the integration of informal caregivers into formal system elements such as hospitals, primary care teams, long-term care providers, and professional associations.29,44,50 There has also been an increasing interest, at policy levels, in innovative uses of technology to support caregivers.51,52 The aim of these various policy supports is to improve informal caregivers’ competence in, and capacity to, care.53 Unfortunately, policy and practice development in the fields of law, regulation, finance, organizational reform, and technology has been organic rather than systematic, and so the existing literature provides only limited information on the diverse approaches to creating policy that supports informal caregivers or their integration into formal systems.

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In this review, we will search for Canadian literature from across disciplines to identify the broad range of policy instruments different provinces and territories have adopted in relation to informal caregivers. In elder care, for example, a range of organizations have come together to ask the federal government to design a “National Seniors Strategy,” with a particular emphasis on supporting caregivers taking the form of enhanced job protection measures, caregiver tax credits, and enhanced Canada Pension Plan contribution allowances.54 If these are some of the policy options the federal government is pursuing, it is important to understand that Canadian health and social policies are

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determined and administered across fourteen jurisdictions (one central/federal, ten provincial, and three territorial). Each jurisdiction has various levels of responsibility and interests, as well as its own political system. These jurisdictional variations have led to the design and implementation of diverse policies in support of informal caregivers. A striking example can be found in policies aimed at promoting and supporting ‘selfmanaged care’ (SMC). These have, since the 1970s, become increasingly popular in a range of Canadian jurisdictions. Generally, in an SMC, an earmarked budget is assigned to a recipient of care, who is free to choose services and vendors to meet his or her needs.55 Although SMC programs have been implemented across all ten provinces, only three provinces – British Columbia, Manitoba, and Nova Scotia – permit care recipients to use funds to compensate family caregivers for their labour.56 We aim to capture these sorts of cross-jurisdictional variation in what might otherwise appear to be consistent policies. Our aim here is not just to highlight and understand Canada’s variations but to establish a methodological and empirical foundation for a major international comparison. This is to say, the results of the present scoping review will support larger efforts in the future to perform a cross-national comparative review.

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In this review, we are going to address the following five objectives: 1) to analyze and synthesize existing Canadian evidence through a comprehensive review of grey and academic literature on policy instruments to support and integrate informal caregivers across Canada, 2) to develop a conceptual framework that classifies diverse informal care policies, 3) to explore different policy objectives behind adopting/developing those policy instruments (e.g. wellbeing, satisfaction, efficiency, effectiveness), 4) to explore potential barriers and facilitators to implementation of diverse policy instruments, and 5) to identify, in conjunction with our knowledge user partners, the approaches, methods, and lessons learned in the broader literature that are applicable to the specific challenges of informal caregivers delivering elder care.

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Methods and Analysis Given the limited nature of existing knowledge on different informal care policies in Canada, the vast and multi-disciplinary nature of the literature on informal care (ranging from elder care to disability, etc.), and thus far limited efforts to synthesize existing knowledge, we will use a scoping review methodology.57 In a scoping review, the available literature is comprehensively reviewed in order to map the key concepts within a research area and the main sources and types of evidence available.57-59 As a scoping review can inform a systematic review, 60,61 it can also assist in determining the value of undertaking a full systematic review on this topic.

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The scoping review, with its synthetic approach, is the cornerstone of robust knowledge translation efforts as it transforms a great deal of scientific literature into a reliable form

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that is readable and relevant to knowledge users.62,63 The Canadian Institutes of Health Research (CIHR), a federal/national agency that funds health research across Canada, defines a knowledge user as “an individual who is likely to be able to use the knowledge generated through research to make informed decisions about health policies, programs and/or practices”64. To increase the uptake of our review findings, we will engage diverse knowledge users including content experts, policy and decision makers, practitioners, and informal caregivers in the design, analysis, and dissemination of the review. By engaging a wide range of knowledge users in all stages of our review, we hope to co-produce knowledge and evidence that is useful and relevant to those who make real-world decisions and helping them make informed decisions. By adopting this knowledge coproduction approach (also known as iKT or participatory research), our knowledge users function as active research partners in generating research from conceptualisation to implementation rather than passive recipients of research or research products. This will enhance our understanding of the knowledge users’ context and needs, thereby increasing the policy-relevance of our research and enhancing integration of our review findings into policy and practice. It also increases knowledge users’ understanding of the research process.65,66

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We will follow the framework developed by Arksey and O’Malley (2005), which entails six stages, in our scoping review, as shown in Figure 1. We will treat these stages in an iterative way and will engage with each stage in a reflexive way and repeat steps, where necessary, to make sure that the literature is comprehensively covered.58 Figure 1 here

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Stage One: Identifying the Research Question/s

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As scoping reviews seek to summarize the breadth of evidence, the research questions should be broad.57 According to Levac et al.59 selecting comprehensive areas of exploration facilitates direction and focus of the study. The overarching question that guides our review is: “how is informal care being addressed in provincial, territorial, and federal Canadian policies?” Our research team initially generated a list of potential research questions based on our experience and initial engagement with the relevant literature. We then began consultations with knowledge users including content experts, policy makers, practitioners, and informal caregivers to finalize the research questions. This input from knowledge users will ensure the study’s relevance, rigour, and comprehensiveness. Specifically, this ongoing engagement aims to improve the uptake of the review results by a broad range of knowledge users.67 The following research questions will guide this review:

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1. Which informal care policies are being addressed in the Canadian academic and

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grey literature? 2. What are the policy objectives behind adopting policies to support informal care (e.g. wellbeing, satisfaction, efficiency, effectiveness)? 3. What are the barriers and facilitators of implementation for those policies in support of informal care? 4. What are the policy opportunities and lessons learned in the broader literature that are applicable to the specific challenges of informal caregivers delivering elder care?

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Stage Two: Identifying Relevant Studies At this stage, our research team will identify relevant studies and will develop a search strategy, terms to use, sources to be searched, time span and language.57 In accordance with Arksey and O’Malley’s recommendation that “comprehensiveness is the whole point of scoping the field”,57 we will employ a very broad search strategy. We will use a search strategy worksheet68 (see sample in Appendix Table 1) and will adjust search terms (concepts) based on nuances of each database. Our key concepts will include, but not be limited to (1) Canada, (2) federal/province/territory, (3) policies, and (4) informal care (see Appendix Table 1 for our detailed search strategy and terms). We will refine our search terms and undertake more sensitive searches of the literature throughout the review process, as necessary.

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As part of the broad search strategy, we will undertake the following five activities: electronic database search, web search, hand search of relevant journals, citations of relevant papers, and scanning the reference lists of relevant papers.

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To perform the electronic database search, we will employ an information scientist (or library scientist). As the research project is multidisciplinary in nature, we will be using diverse electronic databases including: Web of Science, PubMed, MEDLINE via Ovid; Sociological Abstracts; Social Science Citation Index (SSRN); Cumulative Index to Nursing and Allied Health Literature (CINAHL); PsycINFO; and EMBASE via Ovid [Excluding MEDLINE] (see the full list of databases in Appendix Table 2). We conducted a preliminary sample search in two databases: MEDLINE and Web of Science. The MEDLINE search strategy produced 1508 records (12 August 2017) while the Web of Science search produced 4083 results (12 August 2017).

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Grey literature refers to both published and unpublished materials that are generally not peer-reviewed or indexed in bibliographic databases.69 These include government reports, newsletters and bulletins, technical papers, working papers, theses, datasets, and

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proceedings of the seminars and conferences. Due to the paucity of peer-reviewed academic research in the area of policies in support of informal caregivers, the inclusion of grey literature or non-academic is especially important and valuable. These will also increase the breath, relevance and value of our review findings. For the grey literature we will search the following websites: Dissertations & Theses A&I via ProQuest; OpenGrey; ISI Proceedings; Conference Proceedings Citation Index–Social Science and Humanities; Joanna Briggs and ProQuest Dissertations and Theses; PAIS Index - Public Affairs Information Service; Google Scholar; and Google. For specific Canadian grey literature we will search the following databases: Canadian Research Index; Canadian Electronic Library; Canadian Public Policy Index; and LabourSource (formerly Labour Spectrum). Other websites will be identified by the research team and knowledge users.

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Upon completion of these electronic searches, we will conduct a hand search of key journals (e.g., Critical Public Health; Health Policy; Health Policy and Planning; Journal of Health Services Research and Policy; Health Services Research; Journal of Aging and Society; Health and Social Care in the Community; Social Policy and Administration; Journal of Aging Studies; The Gerontologist; Journal of Applied Gerontology; BMC Health Services Research; Journal of Aging and Social Policy; The International Journal of Integrated Care; Sociology of Health and Illness; Journal of Aging and Health; and key gerontological nursing journals) which will be identified by the research team and content experts. Citations of relevant papers will be also tracked. Finally, the reference lists of relevant papers will also be searched in order to find papers not identified in the initial search. All retrieved searches will be imported into Endnote in which the duplicate references will be identified and discarded. Since selected electronic databases to download citations and referencing are often inconsistent in their content and formatting, we anticipate a manual search for duplicates.67

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Stage Three: Relevance Testing In order to increase the rigour of our review, we will adopt a team approach59 to determine which studies/materials to include. At the beginning of the scoping review, the team will discuss and finalize the inclusion and exclusion criteria. The research team has initially decided to include any papers published since 1970 as informal caregivers became the specific object of formal policy efforts at this time. While our interest is in policies supporting informal care as they deliver eldercare, this is an exploratory study, and as such we will not limit our search strategy to eldercare. Rather, in an effort to achieve a breadth of understanding, and to facilitate comparative synthesis of opportunities and lessons learned we will include disability to target a broader range of informal care policy literature. We have also decided on the following inclusion criteria but these may be revised and refined following further engagement with our knowledge user partners.

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Initial Inclusion Criteria: • Academic and grey literature related to Canada only • Papers or documents that discuss policies to support informal caregivers (in the areas of elder care and disability) • Published or unpublished primary studies (quantitative, qualitative or mixedmethods studies), theses/dissertations, conference papers, theoretical discussions and grey literature Initial Exclusion Criteria: • Papers or documents published before 1970 • Papers or documents not published in English • Book reviews • Commentary and editorial papers • Non-Canadian materials (academic and grey literature)

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As recommended by Levac et al59 our reviewers will meet at the start, middle, and end of the abstract review process in order to discuss any challenges or ambiguities related to study selection and to refine, where necessary, the search strategy. We will develop, in consultation with our knowledge user partners, a screening tool, to determine the relevance of papers to informal care policies and also to code the type of data retrieved (e.g. reviews, empirical data, theoretical discussion, policy brief, government documents, web content, conference paper). We will recruit two graduate students (Master of Public Policy) who have received training in the scoping review process to screen the titles, abstracts/summaries or executive summaries that are returned by the search. These reviewers will classify records as “potentially relevant” or “exclude.” When the relevance of a publication is in doubt, the full text will be retrieved. To mitigate bias in the selection process, two members of the research team will independently review one percent of the abstracts/summaries and compare their results with the graduate students’ results. Our research questions may require some refinement at this stage to ensure the review’s feasibility and relevance.

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Next, the graduate student reviewers will independently retrieve and review all full texts coded as ‘potentially relevant’ as part of considering them for inclusion. In the case of disagreements between the two reviewers on inclusion, the other team members will be consulted to make the final decision. During this stage, the research team will organize monthly meetings/teleconferences to discuss progress, findings, challenges and uncertainties related to study selection. Stage Four: Charting the Data

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At this stage, we will extract data from the included studies, using a deductively generated coding tree and importing the data into NVivo 10 for data analysis. Our research team will collectively develop the data-charting form (or extraction form), using Framework Matrix capability in Nvivo,70 in order to decide on extract variables that best help answer our research questions. The extraction form will be derived from our research questions and also from the best relevant papers. We will treat charting as an iterative process in which we will constantly update the data-charting form as the analysis proceeds, similar to the process used in inductive coding in qualitative data analysis. The two graduate students with two members of the research team will independently extract data, using a data-charting form, from the first five studies and check if their data extraction approach is consistent with the research questions. The graduate students will then independently continue extracting data and the research lead will double check the extracted data to ensure accuracy and completeness.

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Our potential data extracted will include: Canadian location: federal/province/territory, author/s or institution/s or organization/s, publication title, publication year, research question or study purpose, policy objectives (e.g. wellbeing, satisfaction, efficiency, effectiveness), and barriers/facilitators to implementation of policies. This list of extracted data will be modified as the research team becomes more familiar with the literature.

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Stage Five: Collating, Summarizing, and Reporting the Results This stage is generally the most extensive phase of a scoping review. Once we gather/extract all data, we will establish a working group to meaningfully interpret the data. With the research questions in mind, the two graduate students will quantify the extracted data and produce a descriptive summary of the included materials (e.g. for journal articles we will extract overall number of studies included, types of study design, years of publication, study population, and provinces/territories where studies were conducted).

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As scoping reviews are not a short summary of journal articles and grey literature, the analytical synthesis of extracted data is critical. As such, we will conduct a constant comparative analysis using NVivo10 in order to organize our data into overarching categories. Using constant comparison analysis allows: comparisons to be made across concepts, similarities, differences, and gaps to be identified, and a conceptual framework to emerge. During the synthesis phase, we will systematically integrate the extracted data and will develop a taxonomy of informal care policies. We will develop a conceptual framework with the following potential key elements for classification which will also be the starting point for our coding nodes: the policy instruments; policy objectives (e.g. wellbeing, satisfaction, efficiency, effectiveness); and barriers and facilitators. We will

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seek the views of our knowledge users at this phase via email, teleconference, or webconference to allow their inputs in reviewing the findings, before providing policy recommendations.57 Stage Six: Consultation Consultation enhances the methodological rigour of the review and should be a compulsory stage in scoping reviews.59 In our scoping review, we will involve knowledge users at all stages of the review. By doing so, we will move beyond knowledge translation towards an iterative integrated knowledge translation (iKT).71 We will seek knowledge users’ input to further refine the review questions; to add a higher level of meaning, content and expertise to our review preliminary findings; to tailor our review findings to the knowledge users’ needs (in terms of policy practice); and to make our review findings more applicable. We will engage knowledge users in the first stages of the review via email and teleconference. We will hold a workshop/policy roundtable with knowledge users to have their input for developing the comprehensive conceptual framework that classifies informal care policies.

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Patient and Public Involvement Canadian Institutes for Health Research (CIHR) Strategy for Patient Outcome Research (SPOR) provides a broad definition of ‘patient’ that includes caregivers and family members. In our research we will recruit informal caregivers, from community organizations such as IMAGINE Citizens (an independent group of Alberta citizens who participate in patient-oriented research) as a proxy for the broad term of ‘patient’. In developing the scoping review protocol, our research team initially generated a list of potential research questions based on our experience and initial engagement with the relevant literature. We then began consultations with knowledge users including informal caregivers, via email and teleconference, to finalize the research questions. We will engage informal caregivers throughout the entire cycle of our research. We will seek their input for a number of reasons, among others, to further refine our review questions; to tailor our review findings to their needs; to add a higher level of meaning, content and expertise to our review preliminary findings; and to make our review findings more applicable. We will hold a workshop/policy roundtable with knowledge users, including informal caregivers, to have their input for developing the comprehensive conceptual framework that classifies informal care policies.

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As our study engages a wide range of knowledge users and stakeholders, including informal caregivers, we will disseminate the results of our review via diverse means. For the specific audience of informal caregivers our dissemination strategies include: blogs that intersect academic and popular internet dissemination; a short (3-4 minute) YouTube (or series of YouTube videos) discussing policy implications of the findings; a webinar in

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collaboration with our knowledge users; and media interviews to disseminate findings and support the uptake of results. Ethics and Dissemination This scoping review aims to synthesize the existing Canadian evidence about informal care policies to enhance understanding about these policies and to extrapolate policy instruments that may be particularly relevant for elderly care. The main outputs of this knowledge synthesis will be 1) a conceptual framework that classifies policy instruments that support informal care or integrate them into formal systems of care, 2) potential barriers and facilitators for implementing those policies.

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We will disseminate the results of our review via diverse means, publishing and presenting in academic fora. Our intention is to develop a conceptual framework that classifies informal care policies, and use this framework to organize an online, free-ofcharge, evidence repository. We will further publish a series of policy briefs to be developed collaboratively with knowledge users about how to promote and better implement informal care policies. Other means of disseminating our review results include blogs that intersect academic and popular internet dissemination; a short (3-4 minute) YouTube (or series of YouTube videos) discussing policy implications of the findings; a webinar in collaboration with our knowledge users; and media interviews to disseminate findings and support the uptake of results. We will pursue an integrated knowledge translation (iKT) strategy as our knowledge users are closely engaged throughout the entire research cycle, and directly contribute to the policy relevant publications of the project (see Appendix Table 3 for full list of dissemination tools for different target audiences). Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

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Contributors: AKM and ML together conceived the review approach. AKM wrote the first draft of the manuscript. ML critically reviewed and revised the manuscript. Both AKM and ML read and approved the final version of the manuscript.

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Funding: None Competing interests: None declared. Data sharing: As this is a scoping review protocol, no additional data is available. Figure Legend: Figure 1: Stages of scoping review References

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home. Telemedicine journal and e-health : the official journal of the American Telemedicine Association. 2008;14(3):224-234. Reder S, Ambler G, Philipose M, Hedrick S. Technology and Long-term Care (TLC): A pilot evaluation of remote monitoring of elders. 2010. Lorig K, Thompson-Gallagher D, Traylor L, et al. Building Better Caregivers. Journal of Applied Gerontology. 2012;31(3):423-437. Rajnovich B, Keefe J. Supporting caregivers of dependent adults in the 21st century. 2005. AGE-WELL. Home Page. 2017; http://agewell-nce.ca/. Accessed 10AUG, 2017. Ageing ESoDIfAaH. Blueprint for a digital transformation of health and care in an ageing society. In:2016. Stoltz P, Andersson EP, Willman A. Support in nursing--an evolutionary concept analysis. International journal of nursing studies. 2007;44(8):1478-1489. National Seniors Strategy. Ensuring that the family and friends of older Canadians who provide unpaid care for their loved ones are acknowledged and supported. 2017; http://nationalseniorsstrategy.ca/the-four-pillars/pillar-4/, 11 August 2017. Spalding K, Watkins JR, Williams AP. Self Managed Care Programs in Canada: A Report to Health Canada. 2006. British Columbia Law Institute. Care/Work: Law Reform to Support Family Caregivers to Balance Paid Work and Unpaid Caregiving. British Columbia Law Institute;2010. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005;8(1):19-32. Daudt HM, van Mossel C, Scott SJ. Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s framework. BMC medical research methodology. 2013;13(1):48. Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implementation Science. 2010;5(1):69. Langlois EV, Ranson MK, Bärnighausen T, et al. Advancing the field of health systems research synthesis. Systematic reviews. 2015;4(1):90. Armstrong R, Hall BJ, Doyle J, Waters E. ‘Scoping the scope’of a cochrane review. Journal of Public Health. 2011;33(1):147-150. Harvey G. The many meanings of evidence: implications for the translational science agenda in healthcare. International Journal of Health Policy and Management. 2013;1(3):187. Salbach NM. Knowledge translation, evidence-based practice, and you. Physiotherapy Canada. 2010;62(4):293. Canadian Institutes of Health Research. About knowledge translation. 2018; http://www.cihr-irsc.gc.ca/e/29418.html. Accessed February 28, 2018. Rycroft-Malone J, Burton CR, Bucknall T, Graham ID, Hutchinson AM, Stacey D. Collaboration and co-production of knowledge in healthcare: opportunities and challenges. International journal of health policy and management. 2016;5(4):221.

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Kothari A, McCutcheon C, Graham ID. Defining integrated knowledge translation and moving forward: a response to recent commentaries. International journal of health policy and management. 2017;6(5):299. Valaitis R, Martin-Misener R, Wong ST, et al. Methods, strategies and technologies used to conduct a scoping literature review of collaboration between primary care and public health. Primary Health Care Research & Development. 2012;13(03):219-236. Riedling AM. Learning To Learn: A Guide to Becoming Information Literate. ERIC; 2002. Tillett S, Newbold E. Grey literature at The British Library: revealing a hidden resource. Interlending & Document Supply. 2006;34(2):70-73. Sweet L. Using NVivo and EndNote For Literature Reviews. 2014; http://www.flinders.edu.au/staff-developmentfiles/computer/NVivo_Endnote_Lit_review.pdf. Accessed 20 February 2018. Grimshaw J. A Knowledge Synthesis Chapter. In: Canadian Institutes of Health Research; 2015.

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Appendix Manuscript Title: Policies Supporting Informal Caregivers Across Canada: A Scoping Review Protocol Manuscript Type: Scoping Review Protocol

Table 1: Search Strategy and Terms Search Question

Policies supporting informal caregivers across Canada

Key Concepts

Canada, Federal/Province/Territory, Policies, Informal Caregivers

Search Strategy for Medline [will be adapted for other databases]

Canada. ti,ab,kw. AND (federal OR government OR national OR central OR provinc* OR territor* OR region* OR local OR municipal*).ti,ab,kw. AND (policy OR policies OR strateg* OR mechanism* OR instrument* OR "policy objective*" OR "policy action*" OR "policy area*" OR "policy instrument*" OR "policy issue*" OR "policy domain*"). ti,ab,kw. AND ("informal care*" OR volunteer* OR family* OR families OR relative* OR friend* OR caregiver* OR "care giver*" OR voluntar* OR unpaid OR spouse OR child* OR partner OR neighbour).ti,ab,kw. English language and full text and "review articles" and humans and yr="1990 -Current"

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AND

Search Terms AND Concept 3 Policy Policies Strateg* Mechanism* Instrument* "Policy objective*" "Policy action*" "Policy area*" "Policy instrument*" "Policy issue*" "Policy domain*"

AND

Concept 4 "Informal Care*" Volunteer* Relative* Family Families Relative* Friend* Caregiver* "Care giver*" "Informal care*" Voluntar* Unpaid Spouse Child* Partner Neighbour

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Concept 2 Federal Government National Central Provinc* Territor* Region* Local Municipal*

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OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR OR

Concept 1 Canada

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Initial Search Results in Medline Ovid (search conducted on 12 August 2017)

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Limit to:

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Table 2: Search Sources Databases

Conference Abstracts Conference Proceedings Citation Index- Science (CPCI-S) via Web of Science Conference Proceedings Citation Index- Social Science & Humanities (CPCISSH) via Web of Science

Applied Social Sciences Index and Abstracts via ProQuest

EMBASE via Ovid SP [Excluding MEDLINE]

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McMaster Health Forum - Health System Evidence MEDLINE via Ovid

Social Science Citation Index (SSRN)

Canadian Research Index Canadian Electronic Library Canadian Public Policy Index LabourSource (formerly Labour Spectrum)

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Social Sciences Citation Index (SSCI) via Web of Science Social Services Abstracts via ProQuest

Canadian Public Policy Index PAIS Index - Public Affairs Information Service

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Scopus

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Science Citation Index Expanded (SCI-EXPANDED) via Web of Science

ISI Proceedings

OpenGrey

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PubMed [Excluding MEDLINE]

Dissertations & Theses A&I via ProQuest

Google Scholar

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PAIS International via ProQuest

Grey Literature

Joanna Briggs Institute EBP Database Google

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Sociological Abstracts via ProQuest Informit Health Collection International Bibliography of Social Sciences Cumulative Index to Nursing and Allied Health Literature (CINAHL) PsycINFO

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Table 3: Dissemination of Findings Intended Audience

Dissemination Tools/Means

Federal, provincial, and local/municipal governments Policy makers in other countries

Research report, policy brief, blog, YouTube videos, webinar Research report and policy briefs available online for free as an evidence repository, blogs, YouTube videos, webinar Peer-reviewed articles and conference presentations, blogs, YouTube videos, webinar Media engagement through press releases and conferences targeting publication in newspapers, magazine, radio, television

Research community

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General public

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PRISMA-P (Preferred Reporting Items for Systematic review and Meta-Analysis Protocols) 2015 checklist: recommended items to address in a systematic review protocol* Section and topic

Item No

Checklist item

ADMINISTRATIVE INFORMATION Title: Identification Update Registration Authors: Contact

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(Page No.#)

1a 1b 2

Identify the report as a protocol of a systematic review (scoping review) If the protocol is for an update of a previous systematic review, identify as such If registered, provide the name of the registry (such as PROSPERO) and registration number

1 -

3a

Provide name, institutional affiliation, e-mail address of all protocol authors; provide physical mailing address of corresponding author Describe contributions of protocol authors and identify the guarantor of the review If the protocol represents an amendment of a previously completed or published protocol, identify as such and list changes; otherwise, state plan for documenting important protocol amendments

1

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Contributions Amendments

3b 4

Support: Sources Sponsor Role of sponsor or funder

5a 5b 5c

Indicate sources of financial or other support for the review Provide name for the review funder and/or sponsor Describe roles of funder(s), sponsor(s), and/or institution(s), if any, in developing the protocol

6 7

Describe the rationale for the review in the context of what is already known Provide an explicit statement of the question(s) the review will address with reference to participants, interventions, comparators, and outcomes (PICO)

5-6 6

Eligibility criteria

8

11

Information sources

9

Search strategy

10

Specify the study characteristics (such as PICO, study design, setting, time frame) and report characteristics (such as years considered, language, publication status) to be used as criteria for eligibility for the review Describe all intended information sources (such as electronic databases, contact with study authors, trial registers or other grey literature sources) with planned dates of coverage Present draft of search strategy to be used for at least one electronic database, including planned limits, such that it could be repeated

INTRODUCTION Rationale Objectives

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METHODS

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9-10 9 and Appendix

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Table 1 Study records: Data management Selection process Data collection process Data items Outcomes and prioritization Risk of bias in individual studies Data synthesis

11a

Describe the mechanism(s) that will be used to manage records and data throughout the review

12

11b

State the process that will be used for selecting studies (such as two independent reviewers) through each phase of the review (that is, screening, eligibility and inclusion in meta-analysis) Describe planned method of extracting data from reports (such as piloting forms, done independently, in duplicate), any processes for obtaining and confirming data from investigators List and define all variables for which data will be sought (such as PICO items, funding sources), any pre-planned data assumptions and simplifications List and define all outcomes for which data will be sought, including prioritization of main and additional outcomes, with rationale Describe anticipated methods for assessing risk of bias of individual studies, including whether this will be done at the outcome or study level, or both; state how this information will be used in data synthesis Describe criteria under which study data will be quantitatively synthesised If data are appropriate for quantitative synthesis, describe planned summary measures, methods of handling data and methods of combining data from studies, including any planned exploration of consistency (such as I2, Kendall’s τ) Describe any proposed additional analyses (such as sensitivity or subgroup analyses, meta-regression) If quantitative synthesis is not appropriate, describe the type of summary planned Specify any planned assessment of meta-bias(es) (such as publication bias across studies, selective reporting within studies) Describe how the strength of the body of evidence will be assessed (such as GRADE)

11

11c 12 13 14 15a 15b 15c 15d 16 17

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Meta-bias(es) NA+ Confidence in NA+ cumulative evidence * It is strongly recommended that this checklist be read in conjunction with the PRISMA-P Explanation and Elaboration (cite when available) for important clarification on the items. Amendments to a review protocol should be tracked and dated. The copyright for PRISMA-P (including checklist) is held by the PRISMA-P Group and is distributed under a Creative Commons Attribution Licence 4.0.

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From: Shamseer L, Moher D, Clarke M, Ghersi D, Liberati A, Petticrew M, Shekelle P, Stewart L, PRISMA-P Group. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015: elaboration and explanation. BMJ. 2015 Jan 2;349(jan02 1):g7647. + Sections 13, 14, 16, and 17 (outcomes & prioritization/risk of bias…/meta-bias/confidence in…) do not apply to scoping reviews but for systematic reviews as scoping reviews do not assess quality of studies for inclusion. That is why we used NA (not applicable).

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