Counter-narratives of active aging: Disability, trauma, and joy in the age-friendly city.

Dominant narratives about late life promote active aging, while anti-aging ones mobilize tropes of decline and irrelevance. In contrast, counter-narratives raise questions that spark new conversations about the promising practices that could foster more age-friendly cities. In this article, we describe our feminist and ethnographic approach to interviews and digital storytelling that aim to amplify the voices of marginalized older adults living with disability, violence, and colonialism, and share findings from this endeavor. We discuss the interviews with, and stories shared, by two disabled older adults - an Indigenous woman and a white paraplegic man - and the aging futures their counter-stories suggest. These stories reveal these participants' ongoing struggles to create meaning in their lives, and how their relationships to the physical, cultural, and social environment of the city, including its supports and services, can both support and hinder this becoming.

Leadership for quality in long-term care.

Leadership in long-term care is a burgeoning field of research, particularly that which is focused on enabling point of care staff to provide high-quality and responsive healthcare. In this article, we focus on the relatively important role that leadership plays in enabling the conditions for high-quality long-term care. Our methodological approach involved a rapid in-depth ethnography undertaken by an interdisciplinary team across eight public and non-profit long-term care homes in Canada, where we conducted over 1,000 hours of observations and 275 formal and informal interviews with managers, staff, residents, family members and volunteers. Guiding our analysis post hoc is the LEADS in a Caring Environment framework. We mapped key promising leadership practices identified by our analysis and discuss how these can inform the development of leadership standards across staff and management in long-term care.

Filling the gap: Mental health and psychosocial paramedicine programming in Ontario, Canada.

Paramedics respond to acute medical and trauma emergencies in the community and transport patients to emergency departments (ED). In some cases, paramedics are not only attending calls for mental health and psychosocial care but are also connecting individuals with more appropriate services to address their needs. This study qualitatively explores to what extent there are promising practices to be learned from paramedic services that are connecting patients to mental health and psychosocial programming. The study is organised as follows. In terms of the methods, we conducted a critical ethnographic case study of mental health and psychosocial care within paramedic services in Ontario, Canada. Interviews were conducted with frontline paramedics (n = 31), paramedic services management (n = 5), educators at paramedic college programmes (n = 5) and Base Hospital physicians/directors (n = 5). Work observations were also performed in three paramedic services, with multiple crews across different shifts (n ~90 hr). The study findings outline three promising practices: diversion programmes that transfer patients to a destination other than the ED; crisis response teams that attend calls identified as involving mental health and community paramedicine programmes including referral programmes. We outline the social, political and economic conditions in which these programmes were established and are provided. We also describe the conditions required to enable connecting patients to non-ED supports. The benefits of implementing specific programming for mental health-related calls within paramedic services are discussed, as well as the importance of reaching beyond the prehospital and mental healthcare system to comprehensively and preventatively address mental health needs. Tensions are explored related to running programmatic interventions for mental health by paramedic services. We conclude by noting some public policy-level challenges including the need to focus more broadly on prevention and address the social determinants of health to aid the de-escalation of distress.

Team-Based Integrated Knowledge Translation for Enhancing Quality of Life in Long-term Care Settings: A Multi-method, Multi-sectoral Research Design.

Multi-sectoral, interdisciplinary health research is increasingly recognizing integrated knowledge translation (iKT) as essential. It is characterized by diverse research partnerships, and iterative knowledge engagement, translation processes and democratized knowledge production. This paper reviews the methodological complexity and decision-making of a large iKT project called Seniors - Adding Life to Years (SALTY), designed to generate evidence to improve late life in long-term care (LTC) settings across Canada. We discuss our approach to iKT by reviewing iterative processes of team development and knowledge engagement within the LTC sector. We conclude with a brief discussion of the important opportunities, challenges, and implications these processes have for LTC research, and the sector more broadly.

"Leisurely Dining": Exploring How Work Organization, Informal Care, and Dining Spaces Shape Residents' Experiences of Eating in Long-Term Residential Care.

Mealtimes are among the busiest times in nursing homes. Austerity measures resulting in insufficient staff with heavy workloads limit the amount of time available to assist residents with eating. Within a feminist political economy framework, rapid team-based ethnography was used for an international study involving six countries exploring promising practices and also for a study conducted in one Canadian province in which interrelationships between formal and informal care were investigated. Data collection methods included interviews and observations. In addition, dining maps were completed providing a cross-jurisdictional comparison of mealtime work organization, and illustrating the time spent assisting residents with meals. Dining maps highlight the reliance on unpaid care as well as how low staffing levels leave care providers rushing around, preventing a pleasurable resident dining experience, which is central to overall health and well-being.

Volunteers' Experiences Delivering a Community-University Chronic Disease Health Awareness Program for South Asian Older Adults.

Volunteers and voluntary organizations can connect preventative health care programs to communities and may play an important role in addressing the health needs of older adults. Despite this, tensions may exist in the structures that drive volunteers and voluntary organizations representing immigrant communities to provide unpaid labour to augment and supplement health care services. Furthermore, organizational challenges may exist for community agencies relying on volunteers to sustain a health screening and education program. The intervention program was led by one voluntary agency specifically for South Asian communities in partnership with the university and five local organizations. This paper draws on volunteer surveys (n = 22) and key informant interviews (n = 12) to detail volunteer experiences providing this intervention. Volunteers were university students and other community volunteers. A total of 810 adults participated in the intervention within the Greater Toronto Area, Ontario, Canada between October 2014 and June 2016. We found that volunteers often used their experience as a 'stepping stone' position to other education or work. They also gained from the knowledge and used it to educate themselves and their family members and friends. This paper provides a critical reflection on the role of volunteers in a preventative and educational healthcare intervention program for older adults from the South Asian community. Tensions exist when relying on volunteer labour for the implementation of preventative community health care programming and must be explored to ensure program sustainability as well as equity within the health care system.

Experiences of moral distress by privately hired companions in Ontario's long-term care facilities.

PURPOSE: To explore long-term residential care provided by people other than the facilities' employees. Privately hired paid "companions" are effectively invisible in health services research and policy. This research was designed to address this significant gap. There is growing recognition that nursing staff in long-term care (LTC) residential facilities experience moral distress - a phenomenon in which one knows the ethically right action to take, but is systemically constrained from taking it. To date, there has been no discussion of the distressing experiences of companions in LTC facilities. This paper explores companions' moral distress. DESIGN: Data was collected using weeklong rapid ethnographies in seven LTC facilities in Southern Ontario, Canada. A feminist political economy analytic framework was used in the research design and in the analysis of findings. FINDINGS: Despite the differences in their work tasks and employment conditions, structural barriers can cause moral distress for companions. This mirrors the impacts experienced by nurses that are highlighted in the literature. Though companions are hired in order to fill care gaps in the LTC system, they too struggle with the current system's limitations. The hiring of private companions is not a sustainable or equitable solution to under-staffing and under-funding in Canada's LTC facilities. VALUE: Recognizing moral distress and the impact that it has on those providing LTC is critical in terms of supporting and protecting vulnerable and precarious care workers and ensuring high quality care for Canadians in LTC.

Liminal and invisible long-term care labour: Precarity in the face of austerity.

Using feminist political economy, this article argues that companions hired privately by families to care for residents in publicly funded long-term care facilities (nursing homes) are a liminal and invisible labour force. A care gap, created by public sector austerity, has resulted in insufficient staff to meet residents' health and social care needs. Families pay to fill this care gap in public funding with companion care, which limits demands on the state to collectively bear the costs of care for older adults. We assess companions' work in light of Vosko's (2015) and Rodgers and Rodgers' (1989) dimensions for precariousness. We discuss how to classify paid care work that overlaps with paid formal and unpaid informal care. Our findings illuminate how companions' labour is simultaneously autonomous and precarious; it fills a care gap and creates one, and can be relational compared with staffs' task-oriented work.

Scarcity discourses and their impacts on renal care policy, practices, and everyday experiences in rural British Columbia.

Drawing from a qualitative case study in rural British Columbia, Canada, this paper examines the discourse of kidney scarcity and its impact on renal care policies and practices. Our findings suggest that at different levels of care, there are different discourses and treatment foci. We have identified three distinct scarcity discourses at work. At the macro policy level, the scarcity of transplantable kidneys is the dominant discourse. At the meso health care institution level, we witnessed a discourse regarding the scarcity of health care and human resources. At the micro community level, there was a discourse of the scarcity of health and life-sustaining resources. For each form of scarcity, particular responses are encouraged. At the macro level, renal care and transplant organizations emphasize the benefits of kidney transplantation and procuring more donors. At the meso level, participants from the regional health care system increasingly encourage home hemodialysis and patient-led care. At the micro level, community health care professionals push for rural renal patients to attend dialysis and maintain their care plans. This work contributes to critical, interdisciplinary organ transfer discourse by contextualizing kidney scarcity. It reveals the tension between these discourses and the implications of pursuing kidney donations without addressing the conditions in which individuals experience kidney failure.

Liminality in Ontario's long-term care facilities: Private companions' care work in the space 'betwixt and between'.

Nursing, personal care, food and cleaning are publicly funded in Ontario's long-term care facilities, but under-staffing usually renders all but the most basic of personal preferences superfluous. This individualization of responsibility for more personalized care has resulted in more families providing more care and opting to hire private, private companion care. With direct payment of companions becoming a growing but largely invisible facet of care, exploring companion's roles is important. Using a six site rapid ethnographic study in long-term care facilities (i.e. observations, documents and key informant interviews (n=167)), this paper argues that private companions occupy a liminal space between policy, family and market, and their role within institutions and in private homes may be the missing link in the care work chain in the sense that it can at once be classified as formal and informal and draws on their own and others paid and unpaid labour.

Domesticating dialysis: A feminist political economy analysis of informal renal care in rural British Columbia.

Drawing from a case study in rural British Columbia, this article examines the experiences of individuals providing unpaid care for family members on hemodialysis and how these experiences fit within larger political and socio-economic policy contexts. We suggest that the current shift towards home-based renal care, the "domestication of dialysis," reflects a broader trend toward a reduction of public health services, assumptions about the feasibility of unpaid care work in rural settings, and an increasing reliance on individuals-rather than the state-to support dependency and produce healthy citizens. This article confirms the challenges that come with providing daily care to a family member with a chronic disease and the gendered nature of unpaid care work. It also extends discussions of unpaid care to include how these challenges can be applied to renal care and complicated by rural residence.

Prescriptive or Interpretive Regulation at the Frontlines of Care Work in the "Three Worlds" of Canada, Germany and Norway.

This paper examines the tension between macro level regulation and the rule breaking and rule following that happens at the workplace level. Using a comparative study of Canada, Norway, and Germany, the paper documents how long-term residential care work is regulated and organized differently depending on country, regional, and organizational contexts. We ask where each jurisdiction's staffing regulations fall on a prescription-interpretation continuum; we define prescription as a regulatory tendency to identify what to do and when and how to do it, and interpretation as a tendency to delineate what to do but not when and how to do it. In examining frontline care workers' strategies for accomplishing everyday social, health, and dining care tasks we explore how a policy-level prescriptive or interpretive regulatory approach affects the potential for promising practices to emerge on the frontlines of care work. Overall, we note the following associations: prescriptive regulatory environments tend to be accompanied by a lower ratio of professional to non-professional staff, a higher concentration of for-profit providers, a lower ratio of staff to residents and a sharper division of labour. Interpretive regulatory environments tend to have higher numbers of professionals relative to non-professionals, more limited for-profit provision, a higher ratio of staff to residents, and a more relational division of labour that enables the work to be more fluid and responsive. The implication of a prescriptive environment, such as is found in Ontario, Canada, is that frontline care workers possess less autonomy to be creative in meeting residents' needs, a tendency towards more task-oriented care and less job autonomy. The paper reveals that what matters is the type of regulation as well as the regulatory tendency towards controlling frontline care workers decision-making and decision-latitude.

[≪ If it's not documented, it's not done ≫: Management indicators of workload can leave women's work invisible]. / ≪ Si ce n'est pas documenté, ça n'a pas été fait ≫: quand les indicateurs de gestion escamotent le travail invisible des femmes.

Historically, eldercare was usually furnished by unpaid women at home. Now that women are in paid work, much of this care is given by personal support workers (PSWs), usually female. With the massive introduction of management indicators in public organisations, a form of organisational silence appears: work is rendered invisible. To examine the mechanism involved, we have observed the work of 37 PSWs in six Ontario residences, and performed interviews. Contrary to the way tasks are assigned, PSW work is often done collectively and documentation requirements are demanding; documenting can even conflict with direct health care. PSWs have insufficient time, so they are sometimes forced to omit data showing the challenges of their work. They thus contribute to a vicious circle where, unable to document the work they do, they lack resources and must skimp even more on documentation.

"Careworkers don't have a voice:" epistemological violence in residential care for older people.

Drawing on feminist epistemologies, this paper attends to the way the reductionist assumptions have shaped the organization of nursing home carework in manners that are insufficient to the needs of relational care. This paper is informed by a study involving nine focus groups and a survey of Canadian residential care workers (141 RNs, 139 LPNs and 415 frontline careworkers). Four major themes were identified. Reductionist assumptions contributed to routinized, task-based approaches to care, resulting in what careworkers termed "assembly line care." Insufficient time and emphasis on the relational dimensions of care made it difficult to "treat residents as human beings." Accountability, enacted as counting and documenting, led to an "avalanche of paperwork" that took time away from care. Finally, hierarchies of knowledge contributed to systemic exclusions and the perception that "careworkers' don't have a voice." Careworkers reported distress as a result of the tensions between the organization of work and the needs of relational care. We theorize these findings as examples of "epistemological violence," a concept coined by Vandana Shiva (1988) to name the harm that results from the hegemony of reductionist assumptions. While not acting alone, we argue that reductionism has played an important role in shaping the context of care both at a policy and organizational level, and it continues to shape the solutions to problems in nursing home care in ways that pose challenges for careworkers. We conclude by suggesting that improving the quality of both work and care will require respecting the specificities of care and its unique epistemological and ontological nature.

Dancing the Two-Step in Ontario's Long-term Care Sector: More Deterrence-oriented Regulation = Ownership and Management Consolidation.

This paper explores shifts in public and private delivery over time through an analysis of Ontario's approach to LTC funding and regulation in relation to other jurisdictions in Canada and abroad. The case of Ontario's long-term care (LTC) policy evolution - from the 1940s until early 2013 -- shows how moving from compliance to deterrence oriented regulation can support consolidation of commercial providers' ownership and increase the likelihood of non-profit and public providers outsourcing their management.

The Meaning of 'Dining': The Social Organization of Food in Long-term Care.

OBJECTIVE: To explore the social organization of food provision in publicly funded and regulated long-term care facilities. METHODS: Observations were conducted, along with 90 interviews with residents, families, and health providers in two Southern Ontario sites using rapid site-switching ethnography within a feminist political economy framework as part of an international, interdisciplinary study investigating healthy ageing. RESULTS: Food is purchased within a daily $7.80/per resident allotment, limiting high quality choices, which is further problematized by privatization of food services. Funding restrictions also result in low staffing levels, creating tensions in aligning with other Ministry mandated tasks such as bathing, and documenting: competing demands often lead to rushed meals. Regulations, primarily set in response to scandals and to ensure appropriate measured nutrition, reinforce the problem. Further, regulations regarding set meal times result in lack of resident agency, which is compounded by fixed menu options and seating arrangements in one common dining room. Rather than being viewed as an important part of resident socialization, food is reduced to a medicalized task, organized within a climate of cost-containment. IMPLICATIONS: Findings warrant Ministry financial support for additional staff and for food provision. Policy changes are also required to give primacy to this population's quality of life.

Unheard voices, unmapped terrain: care work in long-term residential care for older people in Canada and Sweden.

This article aims to contribute to comparative welfare state research by analysing the everyday work life of long-term care facility workers in Canada and Sweden. The study's empirical base was a survey of fixed and open-ended questions; this article presents results from a subset of respondents (Care Aides and Assistant Nurses) working in facilities in three Canadian provinces (n=557) and across Sweden (n=292). The workers' experiences were linked to the broader economic and organisational contexts of residential care in the two jurisdictions. We found a high degree of country-specific differentiation of work organisation: Canada follows a model of highly differentiated task-oriented work, whereas Sweden represents an integrated relational care work model. Reflecting differences in the vertical division of labour, the Canadian Care Aides had more demanding working conditions than their Swedish colleagues. The consequences of these models for care workers, for elderly people and for their families are discussed.

Structural violence in long-term, residential care for older people: comparing Canada and Scandinavia.

Canadian frontline careworkers are six times more likely to experience daily physical violence than their Scandinavian counterparts. This paper draws on a comparative survey of residential careworkers serving older people across three Canadian provinces (Manitoba, Nova Scotia, Ontario) and four countries that follow a Scandinavian model of social care (Denmark, Finland, Norway, Sweden) conducted between 2005 and 2006. Ninety percent of Canadian frontline careworkers experienced physical violence from residents or their relatives and 43 percent reported physical violence on a daily basis. Canadian focus groups conducted in 2007 reveal violence was often normalized as an inevitable part of elder-care. We use the concept of "structural violence" (Galtung, 1969) to raise questions about the role that systemic and organizational factors play in setting the context for violence. Structural violence refers to indirect forms of violence that are built into social structures and that prevent people from meeting their basic needs or fulfilling their potential. We applied the concept to long-term residential care and found that the poor quality of the working conditions and inadequate levels of support experienced by Canadian careworkers constitute a form of structural violence. Working conditions are detrimental to careworker's physical and mental health, and prevent careworkers from providing the quality of care they are capable of providing and understand to be part of their job. These conditions may also contribute to the physical violence workers experience, and further investigation is warranted.

Non-symptom-related factors contributing to delay in seeking medical care by patients with heart failure: a narrative review.

BACKGROUND: Delay in seeking timely medical care by patients with acute coronary syndrome and stroke has been well established in the literature, but less is known about delay in care-seeking behavior by patients with heart failure (HF). The purpose of this narrative review was to synthesize the literature regarding non-symptom-related factors that contribute to delay in seeking medical care for HF symptoms. METHODS AND RESULTS: A literature search of Scopus, Medline, and Pubmed was conducted for published articles from database inception to July 2009. Available evidence has shown that non-symptom-related factors, such as HF severity, HF history, age, and ethnocultural background, were related to delay in certain studies; however, null results have also been reported. Other non-symptom-related factors, such as male gender, initial contact with a primary care physician, arriving in the emergency department by means other than ambulance, and patient responses such as self-care, low anxiety, and hopelessness, may play a role in longer delay. CONCLUSIONS: Although this review identified several non-symptom-related factors that may be implicated in care-seeking delay, health care professionals should be vigilant in identifying all high-risk individuals and educating them about warning signs of HF. Moreover, access to outpatient chronic disease management programs that may have potential to reduce care-seeking delay behavior should be explored.

Lifting the 'violence veil': examining working conditions in long-term care facilities using iterative mixed methods.

We conducted a mixed-methods study-- the focus of this article--to understand how workers in long-term care facilities experienced working conditions. We surveyed unionized care workers in Ontario (n = 917); we also surveyed workers in three Canadian provinces (n = 948) and four Scandinavian countries (n = 1,625). In post-survey focus groups, we presented respondents with survey questions and descriptive statistical findings, and asked them: "Does this reflect your experience?" Workers reported time pressures and the frequency of experiences of physical violence and unwanted sexual attention, as we explain. We discuss how iteratively mixing qualitative and quantitative methods to triangulate survey and focus group results led to expected data convergence and to unexpected data divergence that revealed a normalized culture of structural violence in long-term care facilities. We discuss how the finding of structural violence emerged and also the deeper meaning, context, and insights resulting from our combined methods.