Renee Lyons

Relationships in Chronic Illness and Disability

Relationship Processes in Chronic Illness and Disability The Stressors of Illness and Disability The Impact of Chronic Illness and Disability on Relationships The Impact of Relationships on Coping and Adaptation Relationship Focused Coping Intervention in Close Relationships To Improve Coping with Illness - with James C Coyne Close Relationships, Chronic Illness and Research

Moving Canadian governmental policies beyond a focus on individual lifestyle: some insights from complexity and critical theories

This paper explores why Canadian government policies, particularly those related to obesity, are ‘stuck’ at promoting individual lifestyle change. Key concepts within complexity and critical theories are considered a basis for understanding the continued emphasis on lifestyle factors in spite of strong evidence indicating that a change in the environment and conditions of poverty isare needed to tackle obesity. Opportunities to get ‘unstuck’ from individual-level lifestyle interventions are also suggested by critical concepts found within these two theories, although getting ‘unstuck’ will also require cross-sectoral collective action. Our discussion focuses on the Canadian context but will undoubtedly be relevant to other countries, where health promoters and others engage in similar struggles for fundamental government policy change.

Does moving from a high-poverty to lower-poverty neighborhood improve mental health? A realist review of 'Moving to Opportunity'

Ray Pawsons realist review method was used to analyse 22 evaluations/reviews of the Moving to Opportunity (MTO) housing intervention. MTO was a randomized controlled trial that moved families from high-poverty to low-poverty neighborhoods in five US cities between 1994 and 2006. This realist review focussed on mental health outcomes of families who moved, as well as the mechanisms through which moving influenced mental health. It identified and assessed the effectiveness of the underlying theory driving MTO, and suggests revising the existing theory. This realist review suggests that, even when moves are voluntary, there are potentially negative mental health outcomes from these types of social interventions. Directing resources towards the improvement of existing communities is one way of improving health outcomes for all community residents.

A scoping review and thematic classification of patient complexity: offering a unifying framework

The path to improving healthcare quality for individuals with complex health conditions is complicated by a lack of common understanding of complexity. Modern medicine, together with social and environmental factors, has extended life, leading to a growing population of patients with chronic conditions. In many cases, there are social and psychological factors that impact treatment, health outcomes, and quality of life. This is the face of complexity. Care challenges, burden, and cost have positioned complexity as an important health issue. Complex chronic conditions are now being discussed by clinicians, researchers, and policy-makers around such issues as quantification, payment schemes, transitions, management models, clinical practice, and improved patient experience. We conducted a scoping review of the literature for definitions and descriptions of complexity. We provide an overview of complex chronic conditions, and what is known about complexity, and describe variations in how it is understood. We developed a Complexity Framework from these findings to guide our approach to understanding patient complexity. It is critical to use common vernacular and conceptualization of complexity to improve service and outcomes for patients with complex chronic conditions. Many questions still persist about how to develop this work with a health and social care lens; our framework offers a foundation to structure thinking about complex patients. Further insight into patient complexity can inform treatment models and goals of care, and identify required services and barriers to the management of complexity.

Conservation of resources theory and research use in health systems

BackgroundHealth systems face challenges in using research evidence to improve policy and practice. These challenges are particularly evident in small and poorly resourced health systems, which are often in locations (in Canada and globally) with poorer health status. Although organizational resources have been acknowledged as important in understanding research use resource theories have not been a focus of knowledge translation (KT) research. What resources, broadly defined, are required for KT and how does their presence or absence influence research use?In this paper, we consider conservation of resources (COR) theory as a theoretical basis for understanding the capacity to use research evidence in health systems. Three components of COR theory are examined in the context of KT. First, resources are required for research uptake. Second, threat of resource loss fosters resistance to research use. Third, resources can be optimized, even in resource-challenged environments, to build capacity for KT.MethodsA scan of the KT literature examined organizational resources needed for research use. A multiple case study approach examined the three components of COR theory outlined above. The multiple case study consisted of a document review and key informant interviews with research team members, including government decision-makers and health practitioners through a retrospective analysis of four previously conducted applied health research studies in a resource-challenged region.ResultsThe literature scan identified organizational resources that influence research use. The multiple case study supported these findings, contributed to the development of a taxonomy of organizational resources, and revealed how fears concerning resource loss can affect research use. Some resources were found to compensate for other resource deficits. Resource needs differed at various stages in the research use process.ConclusionsCOR theory contributes to understanding the role of resources in research use, resistance to research use, and potential strategies to enhance research use. Resources (and a lack of them) may account for the observed disparities in research uptake across health systems. This paper offers a theoretical foundation to guide further examination of the COR-KT ideas and necessary supports for research use in resource-challenged environments.

Blame, Shame, and Lack of Support: A Multilevel Study on Obesity Management

In this research, we examined the experiences of individuals living with obesity, the perceptions of health care providers, and the role of social, institutional, and political structures in the management of obesity. We used feminist poststructuralism as the guiding methodology because it questions everyday practices that many of us take for granted. We identified three key themes across the three participant groups: blame as a devastating relation of power, tensions in obesity management and prevention, and the prevailing medical management discourse. Our findings add to a growing body of literature that challenges a number of widely held assumptions about obesity within a health care system that is currently unsupportive of individuals living with obesity. Our identification of these three themes is an important finding in obesity management given the diversity of perspectives across the three groups and the tensions arising among them.

The care delivery experience of hospitalized patients with complex chronic disease.

This study investigated what is important in care delivery from the perspective of hospital inpatients with complex chronic disease, a currently understudied population.

Defining quality outcomes for complex-care patients transitioning across the continuum using a structured panel process

Background No standardised set of quality measures associated with transitioning complex-care patients across the various healthcare settings and home exists. In this context, a structured panel process was used to define quality measures for care transitions involving complex-care patients across healthcare settings. Methods A modified Delphi consensus technique based on the RAND method was used to develop measures of quality care transitions across the continuum of care. Specific stages included a literature review, individual rating of each measure by each of the panelists (n=11), a face-to-face consensus meeting, and final ranking by the panelists. Results The literature review produced an initial set of 119 measures. To advance to rounds 1 and 2, an aggregate rating of >75% of the measure was required. This analysis yielded 30/119 measures in round 1 and 11/30 measures in round 2. The final round of scoring yielded the following top five measures: (1) readmission rates within 30 days, (2) primary care visit within 7 days postdischarge for high-risk patients, (3) medication reconciliation completed at admission and prior to discharge, (4) readmission rates within 72 h and (5) time from discharge to homecare nursing visit for high-risk patients. Conclusions The five measures identified through this research may be useful as indicators of overall care quality related to care transitions involving complex-care patients across different healthcare settings. Further research efforts are called for to explore the applicability and feasibility of using the quality measures to drive quality improvement across the healthcare system.

Life interrupted and life regained? Coping with stroke at a young age

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 seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives. A holistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children.

Safety threats and opportunities to improve interfacility care transitions: insights from patients and family members

Aim To explore patients’ and family members’ perspectives on how safety threats are detected and managed across care transitions and strategies that improve care transitions from acute care hospitals to complex continuing care and rehabilitation health care organizations. Background Poorly executed care transitions can result in additional health care spending due to adverse outcomes and delays as patients wait to transfer from acute care to facilities providing different levels of care. Patients and their families play an integral role in ensuring they receive safe care, as they are the one constant in care transitions processes. However, patients’ and family members’ perspectives on how safety threats are detected and managed across care transitions from health care facility to health care facility remain poorly understood. Methods This qualitative study used semistructured interviews with patients (15) and family members (seven) who were transferred from an acute care hospital to a complex continuing care/rehabilitation care facility. Data were analyzed using a directed content analytical approach. Results Our results revealed three key overarching themes in the perceptions: lacking information, getting “funneled through” too soon, and difficulty adjusting to the shift from total care to almost self-care. Several patients and families described their expectations and experiences associated with their interfacility care transitions as being uninformed about their transfer or that transfer happened too early. In addition, study participants identified the need for having a coordinated approach to care transitions that engages patients and family members. Conclusion Study findings provide patients’ and family members’ perspectives on key safety threats and how to improve care transitions. Of particular importance is the need for patients and family members to play a more active role in their care transition planning and self-care management.