An increasing number of people are living longer with multiple health and social care needs, and may rely heavily on health system resources. When dealing with multiple conditions, patients, caregivers and healthcare providers (HCPs)... more
An increasing number of people are living longer with multiple health and social care needs, and may rely heavily on health system resources. When dealing with multiple conditions, patients, caregivers and healthcare providers (HCPs) often experience high treatment burden due to unclear care trajectories, a myriad of treatment decisions and few guidelines on how to manage care needs. By understanding patient and caregiver priorities, and setting treatment goals, HCPs may help improve patient outcomes and experiences. This study aims to examine the extent and nature of the literature on treatment goal setting in complex patients, identify gaps in evidence and areas for further inquiry and guide a research programme to develop definitions, measures and recommendations for treatment goal setting. This study protocol outlines a scoping review of the peer reviewed and the grey literature, using established scoping review methodology. Literature will be identified using a multidatabase and grey literature search strategy developed by two librarians. Papers and reports on the topic of goal setting that address complexity or complex patients will be included. Results of the search will be screened independently by two reviewers and included studies will be abstracted and charted in duplicate. Ethics approval is not required for this scoping review. Working with the knowledge users on the team, we will prepare educational materials and presentations to disseminate study findings to HCPs, caregivers and patients, and at relevant national and international conferences. Results will also be published in a peer-reviewed journal.
Purpose - The purpose of this paper is to develop a psychometrically validated survey to assess satisfaction in complex continuing care (CCC)/rehabilitation patients. Design/methodology/approach - A paper or computer-based survey was... more
Purpose - The purpose of this paper is to develop a psychometrically validated survey to assess satisfaction in complex continuing care (CCC)/rehabilitation patients. Design/methodology/approach - A paper or computer-based survey was administered to 252 CCC/rehabilitation patients (i.e. post-acute hospital care setting for people who require ongoing care before returning home) across two hospitals in Toronto, Ontario, Canada. Findings - Using factor analysis, five domains were identified with loadings above 0.4 for all but one item. Behavioral intention and information/communication showed the lowest patient satisfaction, while patient centredness the highest. Each domain correlated positively and significantly predicted overall satisfaction, with quality and safety showing the strongest predictive power and the healing environment the weakest. Gender made a significant contribution to predicting overall satisfaction, but age did not. Research limitations/implications - Results provide evidence of the survey's psychometric properties. Owing to a small sample, supplemental testing with a larger patient group is required to confirm the five-factor structure and to assess test-retest reliability. Originality/value - Improving the health system requires integrating patient perspectives. The patient experience, however, will vary depending on the population being served. This is the first psychometrically validated survey specific to a smaller specialty patient group receiving care at a CCC/rehabilitation facility in Canada.
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Hospitals are under increasing pressures by governing bodies to meet mandated performance standards and fiscal targets. As a result, hospitals are incentivized by funders to discharge patients efficiently and effectively. Gaining insight... more
Hospitals are under increasing pressures by governing bodies to meet mandated performance standards and fiscal targets. As a result, hospitals are incentivized by funders to discharge patients efficiently and effectively. Gaining insight into the patient experience of discharge, as well as understanding patient needs and concerns, is prudent. Leveraging this knowledge may expedite patient discharge and potentially minimize hospital readmission rates. The purpose of this study was to better understand the discharge experiences and concerns of patients with multiple chronic diseases-a population currently understudied. In this study, qualitative survey data were analyzed from a large scale, mixed methods study that took place in 2011 at Bridgepoint Hospital, a complex continuing care and rehabilitation facility in Toronto, Canada. One hundred and sixteen patients were interviewed individually using a self-designed survey composed of open- and close-ended questions. All data pertaining to hospital discharge were extracted and examined using qualitative descriptive analysis. Key discharge concerns were related to process (next steps in the care plan, friction in the provider-patient relationship, premature discharge), consequences (relocation, impact on family, leaving the comforts and security of the hospital), and needs (availability of home care, managing daily activities, navigating the predisability home). Our findings are presented in a patient-centered framework that can be used as a guide for future discharge strategies for complex patient populations.
Background: Many mHealth technologies do not meet the needs of patients with complex chronic disease and disabilities (CCDDs) who are among the highest users of health systems worldwide. Furthermore, many of the development methodologies... more
Background: Many mHealth technologies do not meet the needs of patients with complex chronic disease and disabilities (CCDDs) who are among the highest users of health systems worldwide. Furthermore, many of the development methodologies used in the creation of mHealth and eHealth technologies lack the ability to embrace users with CCDD in the specification process. This paper describes how we adopted and modified development techniques to create the electronic Patient-Reported Outcomes (ePRO) tool, a patient-centered mHealth solution to help improve primary health care for patients experiencing CCDD.
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While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question,... more
While drawing on different perspectives, the insightful responses of our commentators all highlight the increasingly crucial role of informal, and mostly unpaid caregivers. They also raise key questions. The first question, "how should we refer to caregivers," pushes us to acknowledge the diversity of caregiver characteristics, contexts and roles. The second, "how should we understand the caregiver 'problem'," reminds us that although often thought of as an individual matter, caregiving is a public policy issue requiring broader systems thinking and approaches. The third, "what should we do about it," draws attention to the importance of building and strengthening social networks to support caregivers and bridge a "growing care gap." We offer the example of Japan which, as part of its national dementia care policy, is now encouraging the development of inter-generational dementia-friendly communities.
Informal and mostly unpaid caregivers - spouses, family, friends and neighbours - play a crucial role in supporting the health, well-being, functional independence and quality of life of growing numbers of persons of all ages who cannot... more
Informal and mostly unpaid caregivers - spouses, family, friends and neighbours - play a crucial role in supporting the health, well-being, functional independence and quality of life of growing numbers of persons of all ages who cannot manage on their own. Yet, informal caregiving is in decline; falling rates of engagement in caregiving are compounded by a shrinking caregiver pool. How should policymakers respond? In this paper, we draw on a growing international literature, along with findings from community-based studies conducted by our team across Ontario, to highlight six common assumptions about informal caregivers and what can be done to support them. These include the assumption that caregivers will be there to take on an increasing responsibility; that caregiving is only about an aging population; that money alone can do the job; that policymakers can simply wait and see; that front-line care professionals should be left to fill the policy void; and that caregivers should be addressed apart from cared-for persons and formal care systems. While each assumption has a different focus, all challenge policymakers to view caregivers as key players in massive social and political change, and to respond accordingly.
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Effectively preventing and managing chronic illness are key goals for health systems worldwide. A growing number of people are living longer with multiple chronic illnesses, accompanied by a high degree of treatment burden and heavy use... more
Effectively preventing and managing chronic illness are key goals for health systems worldwide. A growing number of people are living longer with multiple chronic illnesses, accompanied by a high degree of treatment burden and heavy use of health care resources. People with multimorbidity typically have to manage their care needs for a number of years, and from this experience may offer valuable perspectives on factors that influenced their health outcome. The purpose of this study was to explore factors that may serve as tipping points into poor health from the perspective of hospitalized patients with multimorbidity. Patient interview data were analyzed from 43 hospitalized patients with multimorbidities who indicated that something could have been done to either avoid or slow down their health decline. The study used qualitative description as the analytic method to generate themes from a specific question collected through one-on-one interviews. Two reviewers independently analyzed and thematically coded the data and reached consensus on the final themes after a series of meetings. According to patient accounts, factors at the personal level (eg, personal behaviors), provider level (eg, late diagnoses), and health care system level (eg, poor care transitions) contributed to their health decline. This paper focuses on prevention in the context of multimorbidity. While some respondents indicated personal behaviors that impacted health, many pointed to factors outside themselves (providers and the broader health system). The orientation of health care systems, historically designed to support acute and episodic care and not multimorbidity, places patients, at least in some cases, at additional risk of decline. The patient accounts suggest that the notion of prevention should evolve throughout the course of illness. A successful health system would embrace this notion and see the goal as forestalling not only mortality (as achieved for the most part in high socioeconomic nations) but morbidity as well. High rates of multimorbidity and health system challenges suggest that we have not yet achieved this latter aim.
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Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the... more
Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients' life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an "altered sense of self," a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by...
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Why can many older persons with relatively high needs age successfully at home, while others with similar needs require residential long-term care (LTC)? How can healthcare investments best be balanced to ensure that older persons have... more
Why can many older persons with relatively high needs age successfully at home, while others with similar needs require residential long-term care (LTC)? How can healthcare investments best be balanced to ensure that older persons have access to the most appropriate, cost-effective care?
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Background: People experiencing complex chronic disease and disability (CCDD) face some of the greatest challenges of any patient population. Primary care providers find it difficult to manage multiple discordant conditions and symptoms... more
Background: People experiencing complex chronic disease and disability (CCDD) face some of the greatest challenges of any patient population. Primary care providers find it difficult to manage multiple discordant conditions and symptoms and often complex social challenges experienced by these patients. The electronic Patient Reported Outcome (ePRO) tool is designed to overcome some of these challenges by supporting goal-oriented primary care delivery. Using the tool, patients and providers collaboratively develop health care goals on a portal linked to a mobile device to help patients and providers track progress between visits.
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This study explored the care challenges experienced by older patients with multimorbidity, their informal caregivers and family physicians. Semi-structured interviews were conducted with 27 patients, their informal caregivers and family... more
This study explored the care challenges experienced by older patients with multimorbidity, their informal caregivers and family physicians. Semi-structured interviews were conducted with 27 patients, their informal caregivers and family physicians. Qualitative description was used to identify key themes in the interview transcripts. Participants experienced many common challenges when managing multimorbidity, including a lack of decision-making support, poor communication and uncoordinated health services. Within these themes, unique perspectives specific to the role of being a patient, caregiver or family physician emerged. The study adds to a limited evidence base on the experience of patients with multimorbidity. By including the perspectives of their family caregivers and physicians, we provide important insight into the management of multimorbidity and recommend the uptake of specific strategies to address them.
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A group of student interviewers sat down with distinguished conference attendees at the 2008 Canadian Association for Health Services and Policy Research Conference. These leaders in the field shared a wealth of advice about career... more
A group of student interviewers sat down with distinguished conference attendees at the 2008 Canadian Association for Health Services and Policy Research Conference. These leaders in the field shared a wealth of advice about career planning (don't), seizing opportunities (do) and connecting with colleagues and community (do often). We learned that a passion for lifelong learning, a willingness to get ordinary things done and a little luck go a long way towards career success.
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How prepared are frontline service providers for dealing with mental illness in patients with multiple, complex health conditions? The aims of this study were two-fold, to gain insight into the kinds of training and education desired by... more
How prepared are frontline service providers for dealing with mental illness in patients with multiple, complex health conditions? The aims of this study were two-fold, to gain insight into the kinds of training and education desired by frontline service providers in a healthcare setting and to compile a list of key questions for health service managers and education leaders to address based on our findings. Over 100 care providers responded to a survey. Over half of the respondents indicated no mental health training, and the majority desired increased training and support. Suggested approaches ranged from regular workshops (eg, case presentations) to systems-level strategies (eg, partnering with mental health organizations). This study provides a critical first look into what frontline service providers identify as being essential to their skill set in working with a complex population and raises important questions for healthcare managers and educators to consider in addressing t...
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Objectives: Across the developed world, wait lists for facility-based long-term care (LTC) beds continue to grow. Wait lists are primarily driven by the needs of aging populations (demand-side factors). Less attention has been given to... more
Objectives: Across the developed world, wait lists for facility-based long-term care (LTC) beds continue to grow. Wait lists are primarily driven by the needs of aging populations (demand-side factors). Less attention has been given to system capacity to provide community alternatives to LTC (supply-side factors). We examine the role of both demand- and supply-side factors by comparing the characteristics of individuals who have been assessed and deemed eligible for LTC in urban and rural/underserviced parts of northwestern Ontario, Canada. Methods: Home care assessment data were analyzed for all individuals waiting for LTC in northwestern Ontario as of March 2008 (n=858). For the analysis, the sample was separated into urban and rural groups to account for geographical differences in wait list location. Characteristics between these two groups were compared. Results: Individuals on LTC wait lists in the rural areas were significantly less impaired in activities of daily living and ...