UBC Faculty Research and Publications

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults… Holroyd-Leduc, Jayna; Resin, Joyce; Ashley, Lisa; Barwich, Doris; Elliott, Jacobi; Huras, Paul; Légaré, France; Mahoney, Megan; Maybee, Alies; McNeil, Heather; Pullman, Daryl; Sawatzky, Richard; Stolee, Paul; Muscedere, John Jun 17, 2016

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REVIEW ARTICLE Open AccessGiving voice to older adults living withfrailty and their family caregivers:engagement of older adults living withfrailty in research, health care decisionmaking, and in health policyJayna Holroyd-Leduc1, Joyce Resin2, Lisa Ashley3, Doris Barwich4, Jacobi Elliott5, Paul Huras6, France Légaré7,Megan Mahoney8, Alies Maybee9, Heather McNeil5, Daryl Pullman10, Richard Sawatzky11,12, Paul Stolee5and John Muscedere13** Correspondence:muscedej@kgh.kari.netJayna Holroyd-Leduc and JoyceResin are co-first authors.13Department of Critical CareMedicine, Queen’s University,Kingston, ON, CanadaFull list of author information isavailable at the end of the articlePlain English summaryThe paper discusses engaging older adults living with frailty and their familycaregivers. Frailty is a state that puts an individual at a higher risk for poor healthoutcomes and death. Understanding whether a person is frail is important becausetreatment and health care choices for someone living with frailty may be differentfrom someone who is not (i.e., who is fit). In this review, we discuss strategies andhurdles for engaging older adults living with frailty across three settings: research,health and social care, and policy. We developed this review using published literature,expert opinion, and stakeholder input (including citizens). Engaging frail olderindividuals will be challenging because of their vulnerable health state - butit can be done. Points of consideration specific to engaging this vulnerablepopulation include: In any setting, family caregivers (defined to include family, friends, andother social support systems) play an important role in engaging andempowering older adults living with frailty Engagement opportunities need to be flexible (e.g., location, time, type) Incentivizing engagement for researchers and citizens (financial andotherwise) may be necessary The education and training of citizens, health and social care providers,and researchers on engagement practices Patient-centered care approaches should consider the specific needs ofindividuals living with frailty including end-of-life care and advanced careplanning Influencing policy can occur in many ways including participating atinstitutional, regional, provincial or national committees that relate tohealth and social care.(Continued on next page)© 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 InternationalLicense (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium,provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, andindicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 DOI 10.1186/s40900-016-0038-7(Continued from previous page)AbstractOlder adults are the fastest growing segment of Canada’s population resulting inan increased number of individuals living with frailty. Although aging and frailtyare not synonymous the proportion of those who are frail increases with age.Frailty is not defined by a single condition, but rather a health state characterized byan increased risk of physical, mental, or social decline, deterioration of health status,and death. Recognizing frailty is important because earlier detection allows forprogram implementation focused on prevention and management to reducefuture hospitalization, improve outcomes, and enhance vitality and quality of life.Even though older adults living with frailty are significant users of health careresources, their input is under-represented in research, health care decision making,and health policy formulation. As such, engaging older adults living with frailty andtheir family caregivers is not only an ethical imperative, but their input is particularlyimportant as health and social care systems evolve from single-illness focused to thosethat account for the complex and chronic needs that accompany frailty. In this review,we summarize existing literature on engaging older adults living with frailty and theirfamily caregivers across three settings: research, health and social care, and policy.We discuss strategies and barriers to engagement, and ethical and cultural factors andimplications. Although this review is mainly focused on Canada it is likely to be broadlyapplicable to many of the health systems in the developed world where aging andfrailty pose important challenges.Keywords: Empowerment, Engagement, Family caregivers, Frail health care seniors,Partnerships, Policy, Research, Social careBackgroundOlder adults are the fastest growing segment of Canada’s population, and the most vul-nerable in terms of susceptibility to frailty [1–3]. Frailty is a state of increased vulner-ability predictive of increased rates of adverse health outcomes and mortality; althoughfrailty increases with age they are not synonymous. The growing number of olderadults living with frailty is concerning given that current health care systems weremainly designed to address one medical issue at a time, many of which are consideredreversible illnesses. The present system is ill-equipped to meet the specific, and oftencomplex chronic needs of older adults living with frailty. Indeed, older adults livingwith frailty are extensive users of health and social care services and are greatly im-pacted by procedural and policy decisions across all settings of care. Barriers resultingfrom illness and frailty often prevent the elderly from becoming fully engaged in re-search surrounding their health, in setting priorities for health care decision making, orin policy decisions that inform their care. All of these factors influence health outcomesincluding the quantity and quality of life, so it is crucial that those directly affected havea voice in any decisions made.Citizen engagement is an ethical imperative that embraces the principles of inclusiv-ity, mutual respect and co-design [4]. Furthermore, citizens are the experts in theirown lives and provide a unique perspective on the values and priorities of the commu-nities in which they live. Evidence from Canada, the United Kingdom (UK), and theUnited States (US) shows that engaging citizens in health care decision makingimproves the patient experience, improves health care, and contributes to more appro-priate funding and administrative decisions [5–8].Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 2 of 19Framing frailtyFrailty can be conceptualized as a state marked by an accumulation of physiologicaldeficits over time [9]. These accumulated deficits increase an individual’s vulnerabilityto poor health outcomes including physical, mental or social decline, and death. For anindividual living with frailty, even fairly minor health events can trigger major changesin an individual’s health status. Frailty can occur as the result of a range of diseases andmedical conditions, and is manifested by alterations in function including reducedwalking speed, weight and muscle loss including decreased grip strength, chronic fa-tigue, loss of physical activity, and memory loss [1]. It is important to note that frailtyis not an inevitable part of aging, and that care decisions for older adults living withfrailty may be different from those who are fit or those who are younger or fit [10].Indeed, the progression of illness in an individual with frailty is distinct from someonewho experiences an acute illness [11]. When individuals are recognized as being frail,interventions and treatment plans can be tailored to their specific needs. By recognizingfrailty, health and social care providers can implement programs focused on early de-tection, prevention, and management to reduce future hospitalization, improve out-comes, and enhance vitality and quality of life.Defining citizen engagement and the family caregiverWhile there are many definitions of citizen (public) engagement, we have chosen toadopt, with revisions, the definition first articulated by the Canadian Institutes ofHealth Research (CIHR) [12]:Citizen engagement is the meaningful, timely, and appropriate involvement ofindividuals and potential support systems in policy development, program planningand implementation, research development, and health care decision making. In thecontext of health and social care, engagement can occur in the research setting,health and social care setting, and policy setting.“Citizen” refers to all people who formally or informally use health care services. Forbrevity, “family caregiver” refers to family, friends, neighbours, and other social supportsystems of older adults living with frailty. A summary of some of the definitions usedin this paper is included in Appendix 1.This definition of citizen engagement underscores the essence of engagement as adynamic and meaningful process that goes beyond passive consultation. It seeks to ac-tively and continuously engage, empower, and partner with citizens in the research,health care decision making, and policy development that will impact them. Theoriesof citizen engagement generally ascribe a spectrum of engagement with increasinglevels: communication (information is communicated to citizens or caregivers); consult-ation (information is collected from citizens); or participation (citizens are partners inan exchange of information and deliberation with others through collaborative efforts)[13, 14]. Successful citizen engagement requires careful planning and strategic ap-proaches. Strategies may be diverse at different points in time. To be successful, citizenengagement needs to adapt to the condition, state, capability, and background of theindividuals being engaged, but also to the ultimate goals of the engagement process(e.g., Carman et al. [6]).Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 3 of 19Several Canadian and international organizations have formal plans and strategies forpatient engagement in research and health care. Examples include Health Canada andCIHR’s Strategies for Patient-Oriented Research (SPOR) in Canada, Patient-CenteredOutcomes Research Institute (PCORI) in the US, the National Institute for HealthResearch’s INVOLVE in the UK, and the international James Lind Alliance [15–19].While these extensive strategies offer an excellent starting point, engaging older adultsliving with frailty and family caregivers has specific barriers and challenges that requirespecial consideration as we engage and partner with this particularly vulnerable group.Further, extra efforts will be needed to engage at risk individuals based on socio- andgeo-demographics including first nations, immigrants, low education, low economicstatus, and individuals living in rural settings.Content overview and conceptual frameworkA family-centric model of care emphasizing the role of family caregivers is particu-larly relevant to engaging and empowering older adults living with frailty. Giventhat evidence surrounding best practices for engaging this population is sparse, thisreview comprises relevant strategies for engaging adults and senior populations.Barriers and gaps in our understanding of engaging older adults living with frailtyand their family caregivers, along with ethical considerations, are also discussed.For the purpose of this review, we use “health care” to refer to services providedacross different settings (e.g., institutional and community), and by different pro-viders (e.g., doctors, nurses, social workers, and occupational and physical thera-pists) that addresses the full spectrum and diversity of the needs of older adultsliving with frailty.Engaging older adults living with frailty and family caregivers requires considerationof the following settings:1. research designed to inform the care of older adults living with frailty; both in itsconduct and in priority setting;2. health care decision-making and individualized care planning across all settings ofcare; and3. planning and policy of health care systems.For the sake of clarity and conceptualization, these engagement settings have beenseparated in the present review. Meaningful engagement of older adults living withfrailty and family caregivers will require a shared responsibility where citizens, researchteams, health care providers, and policy decision makers are responsive to each other[20, 21]. Although this review is mainly focused on Canada it is likely to be broadly ap-plicable to many of the health systems in the developed world where aging and frailtypose important challenges.ReviewMethodsThe work presented in this paper was informed by recent realist syntheses on patientengagement by co-authors (Stolee et al., 2015; Elliott et al., 2016; McNeil et al., 2016)Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 4 of 19and supplemented by selected literature for topics not covered in the realist synthesis.As such, the design of this paper was not intended to be a formal systematic review,but one that was informed by the most relevant literature including systematic reviews,expert opinion, and stakeholder input, and could be described as a mixed methodsreview, or a literature review with a narrative synthesis. This type of review is withinthe typology of review types described by Grant and Booth [22]. The mixed methodsreview style was selected to create a broader, more applied description of engagingolder adults living with frailty in decision making. It goes further than a traditionalreview in that it integrates the results of a participatory consultative process, whichincluded patient representatives. The stakeholder input was gained via a CanadianFrailty Network (CFN)-sponsored participatory meeting and an online discussionboard, as described below.The Participatory meeting, Giving Voice to Frail Elderly Canadians, was coordinatedwith assistance from CFN’s Citizen Engagement Committee, and took place on September27, 2015 in Toronto, ON, Canada. In preparation for the meeting, a draft version of thispaper was prepared and distributed to all invitees of the meeting. The intent ofthe meeting was to have a collaborative discussion about engaging older Canadianadults living with frailty in research efforts, alongside expert opinions from acrossthe healthcare continuum, including: older adults, caregivers, citizen advocacy rep-resentatives, researchers, health care professionals, policy makers, and industrypartners. The distribution of participants at the meeting by the group they identi-fied with was as follows: 6.8 % advocacy group representatives, 18.2 % citizen orvolunteer caregivers, 18.2 % health care providers or administrators, 6.8 % policypersons, 40.9 % researchers, and 9.1 % other.Briefly, the multidisciplinary group of approximately 60 participants actively dis-cussed strategies to, and barriers of, engaging this vulnerable population using thepaper as a guide. The voices of patients were represented through patient presenta-tions which were given at the participatory meeting, and by older adults and familycaregivers who participated in World café discussions used to develop key themesand statements for this paper. This involved providing participants and patient rep-resentatives with the opportunity to discuss the key themes and statements andrate them by indicating their level of agreement with statements generated duringthe discussions using electronic clickers. The statements generated during themeeting are included in Appendix 2. The discussions and statements with whichthere was agreement from the majority of the group were used to inform revisionsto the draft manuscript. The revised manuscript was then posted on an online dis-cussion board, which allowed 180 (including those who had participated in the faceto face meeting) invited members, including patient representatives, to commentand provide feedback. As a result, the production of this paper involved a combin-ation of a number of diversified voices, including that of our patient representa-tives. They have been given the opportunity to both directly and indirectlycontribute to the development of this paper through the generation of the themesand topics discussed, and by providing direct feedback on the original draft of thispaper. Further and of note, one of the authors of this paper is a member of CFN’sCitizen Engagement Committee who is also a caregiver for an older adult livingwith frailty.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 5 of 19Engagement in research priority setting and conductEngagement in research refers to active involvement and partnership in the re-search process. This includes determining which research questions should takepriority, conducting research (e.g., development of research design and method-ology, interactions with research participants), and communicating and disseminat-ing research findings. Patients and family caregivers can have an important role toplay in research surrounding their care and it has been recognized that “the know-ledge, wisdom, and energy of individuals and families” is an unexploited resourcefor health care improvement [23]. Demonstrated benefits of citizen engagement inresearch in priority setting include: improved research quality (i.e., improved research questions, hypotheses, andmethodologies) [24–28]; improved relevance of conducted research [29, 30]; and avoiding waste in research [31].Other hypothesized benefits that require thorough evaluation include [8, 31, 32]: assurance that funded research reflects the needs and values of public funders; increased translation of research findings into policy and potential topositively influence the uptake of research results, causing meaningfulchanges; and increased public confidence and understanding of the research process.Engaging vulnerable communities such as older adults living with frailty is espe-cially important since data for these is often limited or missing [6, 33, 34]. Morespecifically, research often focuses on single-conditions, and often excludes individ-uals who have multi-morbidities and those who are elderly, which is common inolder adults living with frailty. The generalization of research priorities and find-ings from fit individuals to older adults living with frailty requires data and inputfrom this population and their family caregivers. However, there has been limitedresearch focusing on engaging older adults in research and research priority set-ting. McNeil and colleagues [35] addressed this issue with a realist synthesis [36]of available peer-reviewed and grey literature focusing on why, how, and in whatcontext older adults are engaged. This synthesis, conducted in partnership witholder adult participants resulted in the identification of the following four princi-ples and strategies for engagement.First and foremost, the older adult must be a central consideration, which shouldbe a guiding principle of research teams and institutions aiming to engage citizens[37, 38]. Meaningful engagement necessitates a holistic approach that acknowledgesthe citizen’s characteristics, demographics, and their social support network. Theresearch team needs to discuss the older adult’s preferences, goals, needs, and ex-pectations for engagement in health care research [39, 40]. Additionally, the citi-zens should be composed of a diverse and representative sample of the elderpopulation [41], which will also include the different levels of engagement pre-ferred by participants.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 6 of 19Secondly, the skills, characteristics, attitudes, and experiences of research teams playa role in how, to what extent, and the duration citizens and their family caregivers areengaged in health care research. As participating in research with little to no experiencecan be intimidating, it is important for the research team to be mindful of the attitudesthey portray to citizens. Negative attitudes and experience of research teams may createbarriers to meaningful engagement and limit ongoing and future partnerships [42].Additionally, a recent poll suggests that citizens may be interested in being engaged,but may not know how, and by what process to do so [43]. The institutional paradigmfrom researchers to administrators needs to encourage a culture shift toward meaning-ful engagement [44].Third, the research method chosen will have an effect on areas of opportunity forcitizen engagement. To enhance such opportunities, flexibility and being open tochange where it is possible, are important. Where engagement opportunities arise isalso important: for example, a “check box” approach at the end of a project when sub-mitting a paper or policy report results in tokenistic involvement. Rather, engagementshould be thoughtful and interactive, with older adults engaged in the design process atthe beginning of a project, and involved as much as possible throughout the course ofthe project [45].Finally, knowledge translation and dissemination of research results present oppor-tunities for successful and continued engagement. Discussion and partnership betweenresearchers and citizens are important for dissemination of research allowing for a col-laborative effort in determining the preferred format of information and informationexchange [46].Challenges to engagement in the research settingA major challenge to engagement in research is the power imbalance, arising fromdifferent levels of knowledge or decision making authority, which may exist or beperceived to exist between researchers and citizens. Ultimately, these require re-searchers to share their decision making authority or knowledge which if not donecan lead to co-option or tokenistic engagement efforts causing mistrust among pa-tients and family caregivers [47]. Past experiences shape expectations and influenceparticipants’ willingness to engage in research [48, 49]. One step investigators cantake to overcome this barrier is asking participants about their preferred level ofengagement (from passive to active roles) [50] and plan accordingly. Other barriersto participating in research include poor health, lack of perceived benefit, and dis-trust of research staff. Engaging family caregivers in the process may be one strat-egy to help in recruiting and retaining older adults living with frailty in researchstudies who have specific challenges [51].Locations where participants are being engaged need to be accessible to thosewith mobility impairments or other challenges [48, 52]. The scheduling of engage-ment opportunities should be convenient for older adults [53], with transportationbeing a key consideration [47]. Web-based communication platforms (e.g., Skype)or online discussion boards are alternative solutions when in-person meetings arenot possible. In Canada, there are many examples of successful citizen engagementefforts with older adults. Examples include advisory groups such as the OntarioHolroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 7 of 19Dementia Advisory Group which is made up of individuals with dementia andcaregivers [54] with a motto “nothing about us without us” encompassing the goalof the group to be involved in whatever way possible in decisions that will affecttheir lives; citizen juries [55]; participant pools such as the Seniors HelpingAdvance Research Excellence (SHARE) group at McMaster University (GilbreaCentre) [56] which facilitates opportunities for seniors to volunteer in various re-search projects at the university; and research partnerships with older adults andtheir caregivers such as the Seniors Helping as Research Partners (SHARP) groupbased out of the University of Waterloo [57], which aims to advance the develop-ment of research priorities, collaborations and improvement of the health care sys-tem for older adults.Adding to the challenges with citizen engagement is the large gap in the literature onhow to combine community collaboration and active engagement with research meth-odology [27]. In addition to limited guidance, systemic constraints may also lead tomissed engagement opportunities or ones that are not meaningful. From the perspec-tive of the researcher, there are few incentives for researchers to engage citizens, mak-ing the time and costs associated with engaging citizens major barriers in theengagement process, as described by researchers at the CFN citizen engagement meet-ing. One possible solution is for granting agencies to change funding guidelines suchthat they require and fund citizen engagement. For instance, granting guidelines couldspecify the required engagement, and resources available to those applying for funds[58]. Furthermore, providing funding to both citizens and researchers for projects onhow to engage will help fill the gaps in the literature and this should be addressed byfunding agencies.Many of the aforementioned strategies and barriers are based on evidence on en-gaging older adults [35]. It is less clear whether the same strategies are suitable formeaningful engagement of older adults living with frailty and/or family caregivers.Given the limited evidence for this large and growing population, additional research isneeded to refine and test specific strategies for partnering with this heterogeneous andvulnerable group of citizens in health care research.Engagement in the health care setting: health care decision making and individualizedcare planningEngagement is integral for person-centred care in which individuals’ unique needs,concerns, and expectations take priority in health care decisions that inform care[59]. Person-centred care is about delivering the right care to the right individualat the right time and in the right place [60, 61]. One of the key aspects of engage-ment in health care settings is to move away from provider-led care and towardsempowering older adults living with frailty and family caregivers to make theirown decisions regarding the frail older adult’s care. Engagement and empowermentcan and should occur across the continuum of care, from community based tolong-term care settings. National health care organizations such as the CanadianNurses Association (CNA), the Canadian Medical Association (CMA), the Collegeof Family Physicians of Canada (CFPC), and Health Action Lobby (HEAL) have alongstanding commitment to advancing person-centered care that is seamless alongHolroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 8 of 19the continuum of care [60–64]. This movement is grounded in the values andprinciples of primary health care as outlined in the World Health Organization’s1978 Declaration of Alma-Ata that the needs of patients and their families must bethe main drivers of health care delivery [65].Further, person-centred care for older adults living with frailty not only involves thedevelopment of mutually developed care plans and decision making, but also requiresmoving away from a disease-specific model of care to one that focuses on care plansthat focus on the optimal treatment for the well-being of older adults living with frailty.Engaging older adults living with frailty, who have multi-morbid conditions is import-ant for further disease prevention and self-management, and will ultimately lead to anincreased chance of improved care and well-being [66]. Playing a more active, engagedrole in health care can improve patients’ quality of care and health outcomes, especiallyconsidering the expertise of the patient with respect to their own illness and life situ-ation [67, 68]. To improve care and outcomes for this population, older adults livingwith frailty and their caregivers need to be engaged as active partners in decisions relat-ing to their health care.Moreover, health care providers’ knowledge base needs to include geriatric know-ledge and skills in order to ensure provision of person-centered care to olderadults living with frailty. For example, a comprehensive understanding of the socialdeterminants of health includes an understanding of needs relating to social,physiological, spiritual, and/or cultural aspects. This understanding of needaddresses where the older adult living with frailty resides, what supports they have,their health status, culture, and values/beliefs. Person-centered care delivery re-quires building and empowering capacity of patients and their family caregivers.Strategies that create an environment for citizen engagement in a person-centredcare context include [69]: creating an environment where older adults living with frailty and family caregiversfeel safe and comfortable during healthcare interactions; building a relationship on mutual trust and respect among older adults living withfrailty, family caregivers, and health care providers; conducting comprehensive health and social assessments; addressing a variety of determinants (e.g., psychosocial; physical, cognitive,environmental) of health which are ethically and culturally sensitive; providing respite for family caregivers; providing leadership, training, and education for health care providers, patients,and family caregivers about how to best to engage in a meaningful partnership;and, sharing information between health care providers, patients, and social supportnetworks.Ongoing communication between care providers and older adults living withfrailty about preferred level of engagement in decisions that inform their care isalso extremely important. In the health care setting, all parties will gain knowledge,skills, and experience with time, which may influence the preferred level of engage-ment. Additionally, older adults living with frailty have changing health needs,Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 9 of 19which may alter their ability and desire to engage. Similarly, the family caregivermay choose to alter their level of engagement fitting with the current health needsof the individual. This is particularly true for individuals who are in late-life ornearing end-of-life; nonetheless, the majority of patients still appreciate the chanceto discuss end-of-life care [70].Quality end-of-life care is particularly important for older individuals living withfrailty [71]. Yet, accessing quality end-of-life care is a significant problem in many prov-inces across Canada, and there is little literature on palliation for these individuals, asopposed to those who have better defined life-limiting diseases such as a cancer diag-nosis. The involvement of older adults living with frailty and their caregivers in devel-oping their care plans is crucial to allow for care that matches a patient’s wishes,values, and beliefs. In addition, their involvement would help remobilize social andhealth care resources to allow healthcare professionals to provide the desired optionsto patients and family caregiver. Moreover, it may galvanize researchers to providemore evidence to inform their care.Because of the changing needs of older adults living with frailty and the delivery ofcare by multiple care providers, there are often inconsistencies in the care being pro-vided. This often occurs, for example, for those receiving home care where there canbe a disconnect between the quality and quantity of care [72, 73]. This disconnect hasalso occurred by moving nurses to task-based practice (in an attempt to serve more cli-ents) without having adequate resources to meet the demand. Also lacking are infra-structures that provide care providers with the data, feedback, or other mechanisms toensure that all providers and the patient are aware of the outcomes of care delivered.These barriers can be addressed by: supporting the patients during transitions within or between care settings; sharing information for seamless coordination of care; collaboration of health care providers within and across care settings to provideefficient and effective care; and, collaboration of health and social disciplines with a broader number ofdisciplines: engineering, architecture, urban studies, administration, religiousstudies, arts, etc.Prince Edward Island is an example of a Canadian province in which health carein the home and long-term care sector has shifted from a task-based model to onethat is person-centered [74]. A model was implemented that increases partnershipswith older adults living with frailty and their family caregivers, recognizes theirneeds, and plans care around their needs, wishes, and choices. As part of this shift,long-term care residences are being renovated to “households” of 12–14 peoplewith private rooms and washrooms, and a shared kitchen and dining area. Add-itionally, rather than continuously changing staffing assignments, staff are beingassigned to a specific households, which aims to improve trust and communicationbetween care providers and residents. This shift has incented care providers andadministrators to change their values and philosophies of care away from theprovider-led perspective to a person-centered, citizen-engaged, and team-basedapproach [74].Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 10 of 19Engagement in influencing health care system planning and policyCitizens often report good clinical care, but poor treatment from the health caresystem [75]. The health status of older adults living with frailty means they willvisit, often repeatedly, multiple medical and care settings within our health caresystem. These services often are not well linked or coordinated, contributing tothe stress and pressures that patients, caregivers, and health care providersexperience.The overarching direction of health care systems is set by planning, development,implementation, administration, and evaluation of public policy and health careprograms by governments, health care agencies, and not-for-profit advocacy organi-zations. Health policy change is an essential condition to redressing fragmentedcare and quality issues and other limitations of our health care systems. In thecontext of this review, we define health policy as setting a direction and providingresources for action to protect, promote, and restore mental and physical well-being [76]. Since health policy is intrinsically public, many factors come to bearacross many sectors of society and involve communities, elected representatives,and governments working together. Citizen engagement is a reflection of a healthcommunity’s desire to participate in shaping public policy to achieve desiredoutcomes.Provinces have used strategies that aim to engage patients in improving care adminis-tration, such as Ontario’s Health Links program, which aims to improve care for se-niors and individuals with complex conditions by improving coordination of care [77].Similarly, seven hospitals in Eastern Ontario recently undertook a major planning effortto improve access to high quality care across the region [75]. In addition to this initia-tive being guided by evidence where available, it is informed by external expert opinionincluding clinical input and patient advice [75].Patient advisory boards and patient and caregiver participation on general advis-ory boards are becoming common strategies for the patient and caregiver voice toaffect change at the level of hospital administration. The Kingston General Hospital(KGH) in Kingston, Ontario has served as model where patients are engaged in allaspects of health administration. Led by the Patient and Family Advisory Council(PFAC), Patient Experience Advisor citizen volunteers partner with KGH staff toprovide direct input into policies, programs, and practices that affect patient qual-ity of care and services [78].The influence of citizen engagement on policy setting and planning can beexerted in different, often indirect ways. The first is by increasing citizen engage-ment across non-governmental organizations (NGOs). Older adults living withfrailty and their family caregivers can influence policy and direction of the healthcare system by serving on working groups and committees for patient and care-giver advocacy organizations, research-oriented organizations (e.g., CFN), policyoriented organizations (e.g., Canadian Foundation of Healthcare Improvement)and individual research groups that are funded by these organizations [79–83].Large-scale initiatives and alliances can drive health policy change at the pro-vincial level by promoting citizen involvement in research. Alliances between ad-vocacy and research organizations can influence policy by having one commonstrategic plan for health-based research. One such alliance is the Canadian HealthHolroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 11 of 19Services and Policy Research Alliance (CHSPRA) that was formed as an outcomeof the CIHR’s Institute of Health Services Policy Research (IHSPR) Initiative. TheIHSPR Initiative supports health and policy research that aims to inform andevaluate effectiveness of the health care system. The IHSPR has developed aCanada-wide vision and strategy for health sciences and policy research. This ini-tiative funds research that ultimately leads to evidence-based policy change to im-prove health care. Another Canadian example is the national Canadian Institutesof Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR), whichallocates funds to each province to develop Support for People and Patient-Oriented Research and Trials (SUPPORT) Units. These SUPPORT Units areteams of citizens, researchers, policy makers, funders, and health care profes-sionals that aim to improve and support person-centered research, knowledgetranslation, and implementation of evidence across Canada. While these organiza-tions are not specific to frail populations, frailty networks and research groupscan collaborate with larger initiatives to influence policy change via the afore-mentioned avenues.Advocacy organizations also influence policy change by improving dialogue be-tween citizens and policy makers and acting as one voice. Indeed, organizationscan relay important health issues surrounding health care that are important tothe users. Citizen advocacy and engagement in health system direction setting ismost effective when knowledge exchange is in place. Knowledge translation andmobilization are important strategies to building the requisite capacity and motiv-ation of a health community to leverage influence. For example, improving publicaccess to research and reports allows citizens and their elected representatives todefine important research and health care priorities (e.g., James Lind Alliance)[18, 84, 85]. Several initiatives, including nationally funded programs haveinternet-based systems that make health care related research findings and otherreviews accessible and understandable. An example is CIHR and McMaster Uni-versity’s Evidence-Informed Health Care Renewal (EIHR) Portal, which containsfreely available documents relating to health care policy [86]. Alternatively, otherorganizations have other resource platforms that include broad topics surround-ing engagement (e.g., Canadian Foundation for Healthcare Improvement’s Re-source Hub, and National Institute for Health Research’s Training and SupportResource) [87, 88].Fortunately, considerations (e.g., strategies and barriers) to engaging older adults liv-ing with frailty and their family caregivers in the policy setting may be very similar tothose observed for engagement in research and health care system contexts, given thatthis is the case with engaging older adults [35].Engaging family caregiversGiven the physical and cognitive limitations that can accompany frailty, these individ-uals often rely on family caregivers to help them navigate through the health care sys-tem. In Canada, there are an estimated four million Canadians caring for older familymembers [89]. As such, we need to focus on appropriately engaging both older adultsliving with frailty and their family caregivers.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 12 of 19Engaging social support systems is challenging since many family caregivers arestretched beyond their capacity and have high levels of stress [90]. Caregivers oftenexperience psychological distress, especially as the number of hours spent provid-ing care increases [91, 92]. Therefore, strategies to support older adults living withfrailty should also consider interventions that are targeted towards optimizing thehealth and well-being of their family caregivers. These types of caregiver-focusedinterventions are more likely to be successful if they involve caregiver input intheir development [73, 93].Balancing the engagement of older adults living with frailty with that of their familycaregivers can be challenging. Barriers specific to empowering older adults living withfrailty in care decisions can include health care providers and family caregivers notfacilitating their participation, and their dominance in decision making without theinclusion of input from the older person living with frailty [94]. Family caregiverscan have particular difficulty with location of care and end-of-life discussions [73].They may be unwilling to accept their frail relative is near the end of life or wishto protect them from potentially upsetting discussions [70]. They may wish to,move them outside of their home to other locations of care without adequate inputfrom the affected individual [73].Person-centered care and the development of care plans include the fundamen-tal belief that every individual has the capacity, skills, competencies, and potentialto assume responsibility for their health [95]. In the case of older adults livingwith frailty this may not be true. Potential barriers to engaging older adults livingwith frailty include lack of time, will, energy, or cognitive capacity to be activelyinvolved in their health care decisions [96]. Furthermore, they may not necessarilyhave family caregivers who are available or able to help guide their decisions. In-deed, the same can be true when engaging this population in research or policysettings.Ethical considerationsThere are many ethical and cultural aspects of working with older adults living withfrailty that need to be taken under consideration when trying to engage this population[42]. As noted earlier in this document, “… in a democratic society, citizen engagementis an ethical imperative which embraces the principles of inclusivity, mutual respectand co-design”. While recognizing this imperative is an important first step, engagingolder adults living with frailty, their family caregivers, and their communities canpresent many ethical challenges.Perhaps the greatest of these challenges arises from the generally ageist culture inwhich we live, which can manifest itself in policies and practices that impinge efforts toengage older adults living with frailty. Recently, a researcher reported frustrations withregard to a project that was investigating the financial literacy of people in the 55–75year age range. The Research Ethics Board at her institution asked what measures werebeing taken to ensure that research participants were not cognitively impaired. The im-plicit assumption was that once an individual reaches a certain age, they were likely tobe cognitively impaired as to be competent. Although it is true that the incidence ofcognitive impairment is higher in older populations, the reality is that the vast majorityHolroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 13 of 19are competent to speak for themselves and to make informed decisions. Respectful en-gagement requires assuming competence as the default, and addressing each individualaccordingly. While it may at times be more convenient to speak with a family memberor other care provider, we must guard against assuming that physical frailty includesemotional and cognitive frailty as well.Related ethical challenges in the context of health care decisions can arise regardingan individual’s choice to live at risk. Often family members and care providers seek toprotect their loved ones living with frailty by moving them from the community into in-stitutional care, both out of concern for their physical well-being and to reduce their ownworries and anxieties [73]. It is not unusual for some individuals living with frailtyto resist institutionalization. Clearly competent individuals can choose to live atrisk providing they do not put others at undue risk in the process. However clini-cians are not mere observers of such caregiver/care-recipient dynamics; the natureof their engagement can make them part of that dynamic as well. How do we bal-ance the physically frail but mentally competent individual’s choice to live at riskin the community against the added stress and anxiety of their caregivers, whileavoiding being co-opted by either party into supporting one position over theother? And, how do we balance the well-being of caregivers versus that of olderadults living with frailty?The converse can arise when encountering an older adult living with frailtywho appears to lack appropriate family or other caregiver supports. What respon-sibilities do researchers have if they perceive an individual to be at risk? What ifthey suspect physical, emotional, or financial abuse? While we should guardagainst using such exceptional scenarios to set the general rules for how to goabout engaging with older adults living with frailty, clinicians and researchersshould be aware of such possibilities in advance and have contingency plans inplace.Directions moving forwardIt is important to note that citizen and patient engagement itself is a practicethat is far from being perfected at this point in time [27, 42]. Older adults livingwith frailty are a diverse group of patients that exhibit physical and/or cognitiveimpairments, which may greatly hinder their ability to engage in research and de-cision making. Although these also pose challenges for engaging other vulnerablepopulations, in older patients living with frailty there may be other distinct bar-riers such as increased deferral to health care providers and decision makers, lackof familiarity with computers, shortened life span reducing continuity and pro-gressive loss of function. The engagement of older adults living with frailty isrelatively novel and one that still requires further research to inform its optimalpractice. A valuable step in the process of the necessary culture shift would in-clude educating all stakeholders on the benefits of engagement, and potentialstrategies to engage older adults in research. Establishing a relationship betweenall stakeholders involved in health care system including researchers is crucial tocitizen engagement, with trust, role clarity, and communication all being essentialcomponents.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 14 of 19The aging Canadian population as in the rest of the developed world underlinesthe urgent need for ensuring the meaningful engagement of older adults living withfrailty and their family caregivers in research, health care, and policy making acrossall settings of health care. Although many barriers and impediments can arise orhave been described, exciting initiatives across Canada and abroad are providingevidence that these can be addressed effectively. For example, Health Canada’sadvisory panel on health care innovation identified five areas for health careinnovation [4] with one of these being patient engagement and empowerment. Thisis a hopeful sign of a cultural shift starting with decision makers that will percolateto all levels of the health care system.ConclusionWhile engaging older adults living with frailty in decision-making does present chal-lenges, our review suggests that engaging this population is feasible, the challenges canbe overcome, and the effort is worthwhile. Although the quality of contribution fromolder adults living with frailty is not yet well-defined older adults living with frailty andtheir family caregivers still need and deserve to have a say in activities that inform theircare. This engagement must be formal and embedded within all levels of healthcare in-cluding research, interactions with health care providers and policy setting. The result-ant coordinated, person-centred care for older adults living with frailty will be moreeffective in the longer term for both for the individual and our society at large. Success-ful engagement of this vulnerable population must, however, balance the needs of olderadults living with frailty and their family caregivers. Ultimately, engagement will resultin and sustain positive change for the care and well-being of older adults living withfrailty. To reach the full potential of engaging frail adults living with frailty, improvingand evaluating methods to engage this population are required and we hope this reviewwill encourage and support these efforts.Appendix 1DefinitionsCitizen: all people who formally or informally use health care services in Canada.Citizen engagement: meaningful, timely, and appropriate involvement of individualsand potential support systems in policy development, program planning and implemen-tation, research development, and health care decision making. In the context of healthcare, engagement can occur in the research setting, health care setting, and policysetting.Family caregiver: family, friends, neighbours, and other social support systems of olderadults living with frailty.Health care: services provided across different settings (e.g., institutional and com-munity), and by different providers (e.g., doctors, nurses, social workers, and occu-pational and physical therapists) that addresses the full spectrum and diversity offrail older adults’ needs. Note that, for brevity in the review, we have definedhealth care to include social care.Health policy: setting a direction and providing resources for action to protect,promote, and restore mental and physical well-being, as defined by the CanadianMinister of Justice.Holroyd-Leduc et al. Research Involvement and Engagement  (2016) 2:23 Page 15 of 19Appendix 2AcknowledgementsWe would like to thank all participants who attended Canadian Frailty Network’s (formerly the Technology Evaluationin the Elderly Network) meeting on Giving Voice to Frail Elderly Canadians that took place on September 27, 2015,individuals who provided feedback on the CFN Online Discussion Board, and CFN staff for reviewing the paper.Authors’ contributionsJM conceived the manuscript. LA, JE, JHL, PH, FL, HM, JM, MM, DP, JR, and PS drafted sections of the manuscript, withreview and assistance from all authors. MM participated in coordinating and synthesizing the document. All authorsread and approved the final manuscript.Competing interestsThe development of this manuscript was supported by Canadian Frailty Network (CFN). CFN is a Canadiannot-for-profit network for older adults living with frailty and late-life care solutions funded primarily by theGovernment of Canada.Author details1Department of Medicine and Community Health Services, University of Calgary, Calgary, AB, Canada. 2Canadian FrailtyNetwork, Vancouver, BC, Canada. 3Canadian Nurses Association, Ottawa, ON, Canada. 4BC Centre for Palliative Care,Vancouver, BC, Canada. 5School of Public Health and Health Systems, University of Waterloo, Waterloo, ON, Canada.6South East Local Health Integration Network, Belleville, ON, Canada. 7Department of Family Medicine and EmergencyMedicine, Université Laval, Québec City, Québec, Canada. 8Canadian Frailty Network, Network for Centres of Excellence,Kingston, Canada. 9Patients Canada, Toronto, ON, Canada. 10Faculty of Medicine, Memorial University ofNewfoundland, St. John’s, NF, Canada. 11Trinity Western University, Langley, BC, Canada. 12Centre for Health Evaluationand Outcome Sciences, University of British Columbia, Vancouver, BC, Canada. 13Department of Critical Care Medicine,Queen’s University, Kingston, ON, Canada.Table 1 Meeting StatementsWhich of the following do you most identify as?aEasy to read information in waiting rooms is an effective way to communicate to patientsIf I were a patient, I would read a one-page summary about research projectsTVN needs to play a central role in providing guidance and support for patient engagement in researchWe need to educate health care organizations about research and the importance of engagementWe need a flexible engagement model (technology supported/money and time to support participation/goto the grail citizen)Research is needed into why/how the frail elder becomes engaged in researchFrail elders do not always identify as frailThe voice of the frail elder is not always represented by the voice of the caregiverWe need to consider different venues outside the usual and need for co-presenters (researcher + frail citizen)We need to consider alternative sources of informationTVN needs to provide resources/experts to researchers that help them to effectively conduct person-centredresearchNeed research measures/outcomes are that are meaningful to frail citizens (e.g., pain/function/good death/Quality of Life)Research teams should have a citizen leader in addition to a scientific leaderTVN should support citizens/family caregivers to mentor each other in the research processTVN needs to train researchers about how to engage frail citizens effectivelyEngagement of frail elderly in health and social organizations should be mandatedContinuity of care should be supported by electronic health records and other tools to communicate decisionsbetween care settingsTVN needs to create tools and education packages for health care providers on ways to meaningfully engagefrail elderly and caregiversTVN and advocates of frail elderly issues should make the issue of frailty a priority at local/regional levels sothat it can have more political influenceResponses to questions were structured as follows, unless stated otherwise: Rate the extent to which you agree with thebelow statement. 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