Methods
The work presented in this paper was informed by recent realist syntheses on patient
engagement by co-authors (Stolee et al., 2015; Elliott et al., 2016; McNeil et al.,
2016) and 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
methods review, or a literature review with a narrative synthesis. This type of review
is within the typology of review types described by Grant and Booth 22]. The mixed methods review style was selected to create a broader, more applied description
of engaging older adults living with frailty in decision making. It goes further than
a traditional review in that it integrates the results of a participatory consultative
process, which included patient representatives. The stakeholder input was gained
via a Canadian Frailty Network (CFN)-sponsored participatory meeting and an online
discussion board, as described below.
The Participatory meeting, Giving Voice to Frail Elderly Canadians, was coordinated with assistance from CFN’s Citizen Engagement Committee, and took
place on September 27, 2015 in Toronto, ON, Canada. In preparation for the meeting,
a draft version of this paper was prepared and distributed to all invitees of the
meeting. The intent of the meeting was to have a collaborative discussion about engaging
older Canadian adults living with frailty in research efforts, alongside expert opinions
from across the healthcare continuum, including: older adults, caregivers, citizen
advocacy representatives, researchers, health care professionals, policy makers, and
industry partners. The distribution of participants at the meeting by the group they
identified with was as follows: 6.8 % advocacy group representatives, 18.2 % citizen
or volunteer caregivers, 18.2 % health care providers or administrators, 6.8 % policy
persons, 40.9 % researchers, and 9.1 % other.
Briefly, the multidisciplinary group of approximately 60 participants actively discussed
strategies to, and barriers of, engaging this vulnerable population using the paper
as a guide. The voices of patients were represented through patient presentations
which were given at the participatory meeting, and by older adults and family caregivers
who participated in World café discussions used to develop key themes and statements
for this paper. This involved providing participants and patient representatives with
the opportunity to discuss the key themes and statements and rate them by indicating
their level of agreement with statements generated during the discussions using electronic
clickers. The statements generated during the meeting are included in Appendix 2.
The discussions and statements with which there was agreement from the majority of
the group were used to inform revisions to the draft manuscript. The revised manuscript
was then posted on an online discussion board, which allowed 180 (including those
who had participated in the face to face meeting) invited members, including patient
representatives, to comment and provide feedback. As a result, the production of this
paper involved a combination of a number of diversified voices, including that of
our patient representatives. They have been given the opportunity to both directly
and indirectly contribute to the development of this paper through the generation
of the themes and topics discussed, and by providing direct feedback on the original
draft of this paper. Further and of note, one of the authors of this paper is a member
of CFN’s Citizen Engagement Committee who is also a caregiver for an older adult living
with frailty.
Engagement in research priority setting and conduct
Engagement in research refers to active involvement and partnership in the research
process. This includes determining which research questions should take priority,
conducting research (e.g., development of research design and methodology, interactions
with research participants), and communicating and disseminating research findings.
Patients and family caregivers can have an important role to play in research surrounding
their care and it has been recognized that “the knowledge, wisdom, and energy of individuals
and families” is an unexploited resource for health care improvement 23]. Demonstrated benefits of citizen engagement in research in priority setting include:
improved research quality (i.e., improved research questions, hypotheses, and methodologies)
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 to positively
influence the uptake of research results, causing meaningful changes; and
increased public confidence and understanding of the research process.
Engaging vulnerable communities such as older adults living with frailty is especially
important since data for these is often limited or missing 6], 33], 34]. More specifically, research often focuses on single-conditions, and often excludes
individuals who have multi-morbidities and those who are elderly, which is common
in older adults living with frailty. The generalization of research priorities and
findings from fit individuals to older adults living with frailty requires data and
input from this population and their family caregivers. However, there has been limited
research focusing on engaging older adults in research and research priority setting.
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 what
context older adults are engaged. This synthesis, conducted in partnership with older
adult participants resulted in the identification of the following four principles
and strategies for engagement.
First and foremost, the older adult must be a central consideration, which should
be a guiding principle of research teams and institutions aiming to engage citizens
37], 38]. Meaningful engagement necessitates a holistic approach that acknowledges the citizen’s
characteristics, demographics, and their social support network. The research team
needs to discuss the older adult’s preferences, goals, needs, and expectations for
engagement in health care research 39], 40]. Additionally, the citizens should be composed of a diverse and representative sample
of the elder population 41], which will also include the different levels of engagement preferred by participants.
Secondly, the skills, characteristics, attitudes, and experiences of research teams
play a role in how, to what extent, and the duration citizens and their family caregivers
are engaged in health care research. As participating in research with little to no
experience can be intimidating, it is important for the research team to be mindful
of the attitudes they portray to citizens. Negative attitudes and experience of research
teams may create barriers 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 paradigm from researchers to administrators needs to encourage
a culture shift toward meaningful engagement 44].
Third, the research method chosen will have an effect on areas of opportunity for
citizen engagement. To enhance such opportunities, flexibility and being open to change
where it is possible, are important. Where engagement opportunities arise is also
important: for example, a “check box” approach at the end of a project when submitting
a paper or policy report results in tokenistic involvement. Rather, engagement should
be thoughtful and interactive, with older adults engaged in the design process at
the beginning of a project, and involved as much as possible throughout the course
of the project 45].
Finally, knowledge translation and dissemination of research results present opportunities
for successful and continued engagement. Discussion and partnership between researchers
and citizens are important for dissemination of research allowing for a collaborative
effort in determining the preferred format of information and information exchange
46].
Challenges to engagement in the research setting
A major challenge to engagement in research is the power imbalance, arising from different
levels of knowledge or decision making authority, which may exist or be perceived
to exist between researchers and citizens. Ultimately, these require researchers to
share their decision making authority or knowledge which if not done can lead to co-option
or tokenistic engagement efforts causing mistrust among patients and family caregivers
47]. Past experiences shape expectations and influence participants’ willingness to engage
in research 48], 49]. One step investigators can take to overcome this barrier is asking participants
about their preferred level of engagement (from passive to active roles) 50] and plan accordingly. Other barriers to participating in research include poor health,
lack of perceived benefit, and distrust of research staff. Engaging family caregivers
in the process may be one strategy to help in recruiting and retaining older adults
living with frailty in research studies who have specific challenges 51].
Locations where participants are being engaged need to be accessible to those with
mobility impairments or other challenges 48], 52]. The scheduling of engagement opportunities should be convenient for older adults
53], with transportation being a key consideration 47]. Web-based communication platforms (e.g., Skype) or online discussion boards are
alternative solutions when in-person meetings are not possible. In Canada, there are
many examples of successful citizen engagement efforts with older adults. Examples
include advisory groups such as the Ontario Dementia Advisory Group which is made
up of individuals with dementia and caregivers 54] with a motto “nothing about us without us” encompassing the goal of the group to
be involved in whatever way possible in decisions that will affect their lives; citizen
juries 55]; participant pools such as the Seniors Helping Advance Research Excellence (SHARE)
group at McMaster University (Gilbrea Centre) 56] which facilitates opportunities for seniors to volunteer in various research projects
at the university; and research partnerships with older adults and their caregivers
such as the Seniors Helping as Research Partners (SHARP) group based out of the University
of Waterloo 57], which aims to advance the development of research priorities, collaborations and
improvement of the health care system for older adults.
Adding to the challenges with citizen engagement is the large gap in the literature
on how to combine community collaboration and active engagement with research methodology
27]. In addition to limited guidance, systemic constraints may also lead to missed engagement
opportunities or ones that are not meaningful. From the perspective of the researcher,
there are few incentives for researchers to engage citizens, making the time and costs
associated with engaging citizens major barriers in the engagement process, as described
by researchers at the CFN citizen engagement meeting. One possible solution is for
granting agencies to change funding guidelines such that they require and fund citizen
engagement. For instance, granting guidelines could specify the required engagement,
and resources available to those applying for funds 58]. Furthermore, providing funding to both citizens and researchers for projects on
how to engage will help fill the gaps in the literature and this should be addressed by
funding agencies.
Many of the aforementioned strategies and barriers are based on evidence on engaging
older adults 35]. It is less clear whether the same strategies are suitable for meaningful engagement
of older adults living with frailty and/or family caregivers. Given the limited evidence
for this large and growing population, additional research is needed to refine and
test specific strategies for partnering with this heterogeneous and vulnerable group
of citizens in health care research.
Engagement in the health care setting: health care decision making and individualized
care planning
Engagement 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 individual at
the right time and in the right place 60], 61]. One of the key aspects of engagement in health care settings is to move away from
provider-led care and towards empowering older adults living with frailty and family
caregivers to make their own decisions regarding the frail older adult’s care. Engagement
and empowerment can and should occur across the continuum of care, from community
based to long-term care settings. National health care organizations such as the Canadian
Nurses Association (CNA), the Canadian Medical Association (CMA), the College of Family
Physicians of Canada (CFPC), and Health Action Lobby (HEAL) have a longstanding commitment
to advancing person-centered care that is seamless along the continuum of care 60]–64]. This movement is grounded in the values and principles of primary health care as
outlined in the World Health Organization’s 1978 Declaration of Alma-Ata that the
needs of patients and their families must be the main drivers of health care delivery
65].
Further, person-centred care for older adults living with frailty not only involves
the development of mutually developed care plans and decision making, but also requires
moving away from a disease-specific model of care to one that focuses on care plans
that 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 important for further disease prevention and self-management, and will ultimately
lead to an increased chance of improved care and well-being 66]. Playing a more active, engaged role in health care can improve patients’ quality
of care and health outcomes, especially considering the expertise of the patient with
respect to their own illness and life situation 67], 68]. To improve care and outcomes for this population, older adults living with frailty
and their caregivers need to be engaged as active partners in decisions relating to their health care.
Moreover, health care providers’ knowledge base needs to include geriatric knowledge
and skills in order to ensure provision of person-centered care to older adults living
with frailty. For example, a comprehensive understanding of the social determinants
of health includes an understanding of needs relating to social, physiological, spiritual,
and/or cultural aspects. This understanding of need addresses where the older adult
living with frailty resides, what supports they have, their health status, culture,
and values/beliefs. Person-centered care delivery requires building and empowering
capacity of patients and their family caregivers. Strategies that create an environment
for citizen engagement in a person-centred care context include 69]:
creating an environment where older adults living with frailty and family caregivers
feel safe and comfortable during healthcare interactions;
building a relationship on mutual trust and respect among older adults living with
frailty, 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 support networks.
Ongoing communication between care providers and older adults living with frailty
about preferred level of engagement in decisions that inform their care is also extremely
important. In the health care setting, all parties will gain knowledge, skills, and
experience with time, which may influence the preferred level of engagement. Additionally,
older adults living with frailty have changing health needs, which may alter their
ability and desire to engage. Similarly, the family caregiver may choose to alter
their level of engagement fitting with the current health needs of the individual.
This is particularly true for individuals who are in late-life or nearing end-of-life;
nonetheless, the majority of patients still appreciate the chance to discuss end-of-life
care 70].
Quality end-of-life care is particularly important for older individuals living with
frailty 71]. Yet, accessing quality end-of-life care is a significant problem in many provinces
across Canada, and there is little literature on palliation for these individuals,
as opposed to those who have better defined life-limiting diseases such as a cancer
diagnosis. The involvement of older adults living with frailty and their caregivers
in developing 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 and health care resources to allow healthcare professionals to provide the
desired options to patients and family caregiver. Moreover, it may galvanize researchers
to provide more evidence to inform their care.
Because of the changing needs of older adults living with frailty and the delivery
of care by multiple care providers, there are often inconsistencies in the care being
provided. This often occurs, for example, for those receiving home care where there
can be a disconnect between the quality and quantity of care 72], 73]. This disconnect has also occurred by moving nurses to task-based practice (in an
attempt to serve more clients) without having adequate resources to meet the demand.
Also lacking are infrastructures that provide care providers with the data, feedback,
or other mechanisms to ensure 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 provide
efficient and effective care; and,
collaboration of health and social disciplines with a broader number of disciplines:
engineering, architecture, urban studies, administration, religious studies, arts,
etc.
Prince Edward Island is an example of a Canadian province in which health care in
the home and long-term care sector has shifted from a task-based model to one that
is person-centered 74]. A model was implemented that increases partnerships with older adults living with
frailty and their family caregivers, recognizes their needs, 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 people with private rooms and washrooms,
and a shared kitchen and dining area. Additionally, rather than continuously changing
staffing assignments, staff are being assigned to a specific households, which aims
to improve trust and communication between care providers and residents. This shift
has incented care providers and administrators to change their values and philosophies
of care away from the provider-led perspective to a person-centered, citizen-engaged,
and team-based approach 74].
Engagement in influencing health care system planning and policy
Citizens often report good clinical care, but poor treatment from the health care
system 75]. The health status of older adults living with frailty means they will visit, often
repeatedly, multiple medical and care settings within our health care system. These
services often are not well linked or coordinated, contributing to the stress and
pressures that patients, caregivers, and health care providers experience.
The overarching direction of health care systems is set by planning, development,
implementation, administration, and evaluation of public policy and health care programs
by governments, health care agencies, and not-for-profit advocacy organizations. Health
policy change is an essential condition to redressing fragmented care and quality
issues and other limitations of our health care systems. In the context of this review,
we define health policy as setting a direction and providing resources for action
to protect, promote, and restore mental and physical well-being 76]. Since health policy is intrinsically public, many factors come to bear across many
sectors of society and involve communities, elected representatives, and governments
working together. Citizen engagement is a reflection of a health community’s desire
to participate in shaping public policy to achieve desired outcomes.
Provinces have used strategies that aim to engage patients in improving care administration,
such as Ontario’s Health Links program, which aims to improve care for seniors and
individuals with complex conditions by improving coordination of care 77]. Similarly, seven hospitals in Eastern Ontario recently undertook a major planning
effort to improve access to high quality care across the region 75]. In addition to this initiative being guided by evidence where available, it is informed
by external expert opinion including clinical input and patient advice 75].
Patient advisory boards and patient and caregiver participation on general advisory
boards are becoming common strategies for the patient and caregiver voice to affect
change at the level of hospital administration. The Kingston General Hospital (KGH)
in Kingston, Ontario has served as model where patients are engaged in all aspects
of health administration. Led by the Patient and Family Advisory Council (PFAC), Patient
Experience Advisor citizen volunteers partner with KGH staff to provide direct input
into policies, programs, and practices that affect patient quality of care and services
78].
The influence of citizen engagement on policy setting and planning can be exerted
in different, often indirect ways. The first is by increasing citizen engagement across
non-governmental organizations (NGOs). Older adults living with frailty and their
family caregivers can influence policy and direction of the health care system by
serving on working groups and committees for patient and caregiver advocacy organizations,
research-oriented organizations (e.g., CFN), policy oriented 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 provincial
level by promoting citizen involvement in research. Alliances between advocacy and
research organizations can influence policy by having one common strategic plan for
health-based research. One such alliance is the Canadian Health Services and Policy
Research Alliance (CHSPRA) that was formed as an outcome of the CIHR’s Institute of
Health Services Policy Research (IHSPR) Initiative. The IHSPR Initiative supports
health and policy research that aims to inform and evaluate effectiveness of the health
care system. The IHSPR has developed a Canada-wide vision and strategy for health
sciences and policy research. This initiative funds research that ultimately leads
to evidence-based policy change to improve health care. Another Canadian example is
the national Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented
Research (SPOR), which allocates funds to each province to develop Support for People
and Patient-Oriented Research and Trials (SUPPORT) Units. These SUPPORT Units are
teams of citizens, researchers, policy makers, funders, and health care professionals
that aim to improve and support person-centered research, knowledge translation, and
implementation of evidence across Canada. While these organizations are not specific
to frail populations, frailty networks and research groups can collaborate with larger
initiatives to influence policy change via the aforementioned avenues.
Advocacy organizations also influence policy change by improving dialogue between
citizens and policy makers and acting as one voice. Indeed, organizations can relay
important health issues surrounding health care that are important to the users. Citizen
advocacy and engagement in health system direction setting is most effective when
knowledge exchange is in place. Knowledge translation and mobilization are important
strategies to building the requisite capacity and motivation of a health community
to leverage influence. For example, improving public access to research and reports
allows citizens and their elected representatives to define important research and
health care priorities (e.g., James Lind Alliance) 18], 84], 85]. Several initiatives, including nationally funded programs have internet-based systems
that make health care related research findings and other reviews accessible and understandable.
An example is CIHR and McMaster University’s Evidence-Informed Health Care Renewal
(EIHR) Portal, which contains freely available documents relating to health care policy
86]. Alternatively, other organizations have other resource platforms that include broad
topics surrounding engagement (e.g., Canadian Foundation for Healthcare Improvement’s
Resource Hub, and National Institute for Health Research’s Training and Support Resource)
87], 88].
Fortunately, considerations (e.g., strategies and barriers) to engaging older adults
living with frailty and their family caregivers in the policy setting may be very
similar to those observed for engagement in research and health care system contexts,
given that this is the case with engaging older adults 35].
Engaging family caregivers
Given the physical and cognitive limitations that can accompany frailty, these individuals
often rely on family caregivers to help them navigate through the health care system.
In Canada, there are an estimated four million Canadians caring for older family members
89]. As such, we need to focus on appropriately engaging both older adults living with
frailty and their family caregivers.
Engaging social support systems is challenging since many family caregivers are stretched
beyond their capacity and have high levels of stress 90]. Caregivers often experience psychological distress, especially as the number of
hours spent providing care increases 91], 92]. Therefore, strategies to support older adults living with frailty should also consider
interventions that are targeted towards optimizing the health and well-being of their
family caregivers. These types of caregiver-focused interventions are more likely
to be successful if they involve caregiver input in their development 73], 93].
Balancing the engagement of older adults living with frailty with that of their family
caregivers can be challenging. Barriers specific to empowering older adults living
with frailty in care decisions can include health care providers and family caregivers
not facilitating their participation, and their dominance in decision making without
the inclusion of input from the older person living with frailty 94]. Family caregivers can 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
wish to protect them from potentially upsetting discussions 70]. They may wish to, move them outside of their home to other locations of care without
adequate input from the affected individual 73].
Person-centered care and the development of care plans include the fundamental belief
that every individual has the capacity, skills, competencies, and potential to assume
responsibility for their health 95]. In the case of older adults living with frailty this may not be true. Potential
barriers to engaging older adults living with frailty include lack of time, will,
energy, or cognitive capacity to be actively involved in their health care decisions
96]. Furthermore, they may not necessarily have family caregivers who are available or
able to help guide their decisions. Indeed, the same can be true when engaging this
population in research or policy settings.
Ethical considerations
There are many ethical and cultural aspects of working with older adults living with
frailty 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 engagement
is an ethical imperative which embraces the principles of inclusivity, mutual respect
and co-design”. While recognizing this imperative is an important first step, engaging
older adults living with frailty, their family caregivers, and their communities can
present many ethical challenges.
Perhaps the greatest of these challenges arises from the generally ageist culture
in which we live, which can manifest itself in policies and practices that impinge
efforts to engage older adults living with frailty. Recently, a researcher reported
frustrations with regard to a project that was investigating the financial literacy
of people in the 55–75 year age range. The Research Ethics Board at her institution
asked what measures were being taken to ensure that research participants were not
cognitively impaired. The implicit assumption was that once an individual reaches
a certain age, they were likely to be cognitively impaired as to be competent. Although
it is true that the incidence of cognitive impairment is higher in older populations,
the reality is that the vast majority are competent to speak for themselves and to
make informed decisions. Respectful engagement requires assuming competence as the
default, and addressing each individual accordingly. While it may at times be more
convenient to speak with a family member or other care provider, we must guard against
assuming that physical frailty includes emotional and cognitive frailty as well.
Related ethical challenges in the context of health care decisions can arise regarding
an individual’s choice to live at risk. Often family members and care providers seek
to protect their loved ones living with frailty by moving them from the community
into institutional care, both out of concern for their physical well-being and to
reduce their own worries and anxieties 73]. It is not unusual for some individuals living with frailty to resist institutionalization.
Clearly competent individuals can choose to live at risk providing they do not put
others at undue risk in the process. However clinicians are not mere observers of
such caregiver/care-recipient dynamics; the nature of their engagement can make them
part of that dynamic as well. How do we balance the physically frail but mentally
competent individual’s choice to live at risk in the community against the added stress
and anxiety of their caregivers, while avoiding being co-opted by either party into
supporting one position over the other? And, how do we balance the well-being of caregivers
versus that of older adults living with frailty?
The converse can arise when encountering an older adult living with frailty who appears
to lack appropriate family or other caregiver supports. What responsibilities do researchers
have if they perceive an individual to be at risk? What if they suspect physical,
emotional, or financial abuse? While we should guard against using such exceptional
scenarios to set the general rules for how to go about engaging with older adults
living with frailty, clinicians and researchers should be aware of such possibilities
in advance and have contingency plans in place.
Directions moving forward
It is important to note that citizen and patient engagement itself is a practice that
is far from being perfected at this point in time 27], 42]. Older adults living with frailty are a diverse group of patients that exhibit physical
and/or cognitive impairments, which may greatly hinder their ability to engage in
research and decision making. Although these also pose challenges for engaging other
vulnerable populations, in older patients living with frailty there may be other distinct
barriers such as increased deferral to health care providers and decision makers,
lack of familiarity with computers, shortened life span reducing continuity and progressive
loss of function. The engagement of older adults living with frailty is relatively
novel and one that still requires further research to inform its optimal practice.
A valuable step in the process of the necessary culture shift would include educating
all stakeholders on the benefits of engagement, and potential strategies to engage
older adults in research. Establishing a relationship between all stakeholders involved
in health care system including researchers is crucial to citizen engagement, with
trust, role clarity, and communication all being essential components.
The aging Canadian population as in the rest of the developed world underlines the
urgent need for ensuring the meaningful engagement of older adults living with frailty
and their family caregivers in research, health care, and policy making across all
settings of health care. Although many barriers and impediments can arise or have
been described, exciting initiatives across Canada and abroad are providing evidence
that these can be addressed effectively. For example, Health Canada’s advisory panel
on health care innovation identified five areas for health care innovation 4] with one of these being patient engagement and empowerment. This is a hopeful sign
of a cultural shift starting with decision makers that will percolate to all levels
of the health care system.