Plain English summaryThe paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles 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 older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care. AbstractOlder adults are the fastest growing segment of Canada’s population resulting in an increased number of individuals living with frailty. Although aging and frailty are 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 by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that 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 their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement...
Plain English summaryThe importance of citizen involvement in healthcare research and planning has been widely recognized. There is however, a lack of understanding of how best to engage older adults, Canada's fastest growing segment of the population and biggest users of the healthcare system. We aimed to address this gap by developing an understanding of the engagement of older adults and their caregivers in healthcare research and planning. We conducted a review of available knowledge on engagement in healthcare research and planning with a focus on older adults and their caregivers. A five stage engagement framework emerged from this study that can be used to guide engagement efforts. We are continuing to collaborate with older adults and decision makers to develop and test strategies based on the presented framework.Abstract Background The importance of engaging the community in healthcare research and planning has been widely recognized. Currently however, there is a limited focus on older adults, Canada’s fastest growing segment of the population and biggest users of the healthcare system. Objective This project aimed to develop an understanding of engagement of older adults and their caregivers in healthcare research and planning. Method A realist synthesis was conducted of the available knowledge on engagement in healthcare research and planning. The search methodology was informed by a framework for realist syntheses following five phases, including consultations with older adults. The synthesis included theoretical frameworks, and both peer-reviewed and grey literature. Results The search generated 15,683 articles, with 562 focusing on healthcare research and planning. The review lead to the development of a framework to engage older adults and their caregivers in healthcare research and planning. The 5 stages environment, plan, establish, build, and transition are accompanied with example context, mechanism, and outcomes to guide the use of this framework. Conclusion We have identified a framework that promotes meaningful engagement of older adults and their caregivers. We are continuing to collaborate with our community partners to further develop and evaluate engagement strategies that align with the presented framework.
BackgroundIt is well known that older adults are high users of the health care system. Older adults with chronic conditions receive care from multiple providers, across multiple settings, and this care is often unorganized and confusing. In 2005, Ontario established a model of inter-professional primary care (family health teams) with the aim of providing enhanced interdisciplinary primary care to patients. Primary care requires an in-depth understanding of the operations of primary care teams and their relationships with other community services. The aim of this study was to develop a deeper understanding of the current operations of two family health teams in Ontario, including their current processes for referrals, information sharing, and engagement of patients in decision-making.MethodsFocus group and individual semi-structured interviews with health care providers were conducted. Purposeful sampling was used to ensure information was obtained from different professional perspectives. Interviews were audio-recorded and transcribed verbatim. Using NVivo 10, data were analyzed using line by line thematic analysis techniques. A cluster technique was then applied to group similar codes into themes.ResultsThree focus group interviews (involving 4–6 health care providers/focus group) and six individual interviews were conducted with health care providers from two primary care teams and surrounding community care organizations. Six key themes were identified: 1) challenges engaging older adults in decisions about their care; 2) who is responsible for coordinating the care? 3) fragmented information sharing between health care providers; 4) lack of standardized referral processes and follow-up; 5) identifying services in the community for older adults; and 6) caring for older adults in rural communities.ConclusionsThe results of this study provide an in-depth understanding of the current context in which the primary care teams are currently operating. Improved primary care will require stronger processes of coordination, greater knowledge of and connections with other community services, and enhanced patient engagement processes. This information provides a helpful basis for implementing interventions in primary care.Electronic supplementary materialThe online version of this article (10.1186/s12875-018-0821-7) contains supplementary material, which is available to authorized users.
BackgroundEngagement in healthcare decision making has been recognized as an important, and often lacking, aspect of care, especially in the care of older adults who are major users of the healthcare system.ObjectiveWe aimed to conduct a review of available knowledge on engagement in healthcare decision making with a focus on older patients and their caregivers.MethodsWe conducted a realist synthesis focusing on strategies for engagement of older patients and their caregivers in healthcare decision making. The synthesis encompassed theoretical frameworks and both peer-reviewed and grey literature. Expert consultations included interviews (n = 2) with academics and group consultations (n = 3) with older adults and their caregivers. Abstracts that reported description, assessment, or evaluation of strategies for engagement of adult patients, families, or caregivers (i.e., that report on actual experiences of engagement) were included.ResultsThe search generated 15,683 articles, 663 of which were pertinent to healthcare decision making. Theoretical and empirical work identified a range of strategies and levels of engagement of older patients and their families in healthcare decision making. The importance of communication emerged as a key recommendation for meaningful engagement among providers and patients and their caregivers. The principles developed in this study should be implemented with consideration of the context in which care is being provided.ConclusionsWe have developed a framework that promotes the engagement of patients and their caregivers as equal partners in healthcare decision making. Future research should implement and test the framework in various clinical settings.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-016-0168-x) contains supplementary material, which is available to authorized users.
Objective: Improving care transitions is of critical importance for older patients, especially those with complex care needs. Our study examined the "Transitions of Care" (ToC) of complex, post-acute older adults at multiple time points. The objective of this article is to identify domains relevant to health care transitions of post-acute older patients with hip fracture so as to inform future ToC interventions. Design: Here we conducted a framework-based synthesis of the 12 peer-reviewed manuscripts that were published from our multisite, ethnographic study. Setting and participants: All 12 manuscripts were based on 1 study, described here. Data were collected in multiple regions, in acute and sub-acute care wards, rehabilitation programs, home care agencies, longterm care and assisted living facilities, and patients' private homes. We completed 51 interviews with 23 postoperative hip fracture patients aged 65 years, 24 interviews with 19 family caregivers, and 96 interviews with 92 health care providers. Interviews with patients, family caregivers, and health care providers were conducted at each transition point for a total of 171 individual interviews. Results: Taken together, our framework analysis of the 12 manuscripts identified 8 themes related to ToC. Two themes, patient complexity and system constraints, are contextual factors that tend to impede ToC and may be less amenable to change. The remaining 6 themes, patient involvement and choice, family caregiver roles, strong relationships, coordination of roles, documentation, and information sharing, have the potential to support and improve ToC. Conclusions and implications: With comprehensive data from a range of stakeholders, collected at multiple transition points along the health care continuum, in our final 6 themes we identify potential points of intervention for clinicians and teams seeking to improve ToC for older complex patients.
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