Caring for ethics and the politics of health care reform in the United States

It is increasingly recognized that the work of (unpaid) informal caregivers constitutes an important contribution to care delivery in the United States and in many other societies. Accounting for the range of social, economic and political circumstances in which this care is produced has become the focus of a number of academics and others theorizing the ‘third sector’, or the ‘social economy’. However, some scholars are concerned that the increasing attention paid to the role of informal economic activity will either legitimate neoliberal state withdrawal from social reproduction or facilitate continued invasive commodification of relationships that were formerly part of social life. While these are possible dangers, J.K. Gibson-Graham's diverse economy framework and theory of community economy allow us to understand the social and economic conditions that support, rather than undermine, a caregiver's fidelity to the process of caring. Given the size of the informal caregiving sector, it would remain an important aspect of the care economy even if the United States developed a national health care system. It is important to understand informal caregivers as economic subjects, with their desires, motivations, hopes and anxieties. What emerges from my qualitative research is an understanding of informal caregivers as ethical subjects who operate best in a network of collective recognition and support. Informal caregivers are neither self-interested economic actors nor (necessarily) victims of failed social support. Rather, they are, potentially, agents of change in a new politics of health care reform.     

The contested meanings of home for women caring for children with long-term care needs in Ontario,Canada

Home as a place of caring is theorized using the literature from geography, sociology, housing and feminist studies. To support our theorization, grounded theory is used to capture and interpret the experiences of women caring for children with long-term care needs in the home. Eleven semi-structured interviews conducted with women in Ontario, Canada uncovered differences in the way the women perceived their homes and highlighted their multiple and complex experiences. The findings revealed three key issues. First, women do not want their homes to be completely defined by long-term care activities as many other types of activities are situated in their homes. Second, long-term care activities and schedules are not segregated but become deeply embedded and enmeshed within the spatial and temporal practices and processes of family life. Third, the meanings, characteristics and ideal of ‘home’ portrayed in popular culture and the academic literature often clashed with what the women experienced on a daily basis. Analysis revealed the tensions surrounding ‘reconstructing spaces in the home’ and ‘the home as a private and public place’ which are indicative of the women's struggles with the disjuncture between the ideal and lived home. The women's experiences challenge us to consider new ways of theorizing the home, and the home when it is a place where long-term care is provided.     

Eros and Modernity,or Sympathy and Nihilism

Chantal Delsol's work is distinguished by its articulation of the interdependence of an effective defense of human rights with a truthful understanding of the dignified responsibility of the human person. Most of the experience of the modern world, however, has called into question the sustainability of the experience of the person, while also making it clear that human beings do not have the option of returning to some more holistic world. Delsol reflects on the emptiness of the experience of the modern individual, the inability of modern societies to accord proper dignity to caregiving, and the continuing need for a personal theology.     

Medical versus social work-places: constructing and compensating the personal support worker across health care settings in Ontario,Canada

This article explores the role of place in explaining variation in caregiver compensation. Using the labour category of Personal Support Worker (PSW) in Ontario, Canada, it contrasts wage rates across three health care settings: hospitals, long-term care facilities and private homes. An evaluation of current literature from disciplines spanning geography, gender studies, political science and sociology is combined with a critical analysis of policy documents and wage data to reveal that, despite holding similar qualifications and performing comparable job duties, hospital-based workers receive higher wages than home-based workers. I theorize that this wage disparity is partially attributable to the historical privileging of hospital settings in Canada, based on a medical-social continuum of health care valuation. Given that the hospital is constructed as a highly medical place, whereas the home is considered to be a social place, caregiving work enjoys greater financing protection in the former. I argue that these constructions stem from deeply gendered historical roots which view the marketplace as a male-dominated setting for productive waged labour, and the home as a female-dominated setting for unpaid social pursuits. Thus, when personal support services shift from public institutions into private homes, these activities become invisible to the state, and their provision beyond its purview. I conclude that the medical versus social nature of the duties performed by PSWs has become secondary to the medical versus social nature of the setting in which these activities take place. This has translated into lower wages for home-based PSWs, effectively resulting in wage discrimination.     

Exploring the daily geographies of diverse men caregiving for family members with multiple chronic conditions

Within Canada, it has been estimated that almost half of all family, also known as informal, caregivers are now men. However, the contributions and experiences of these caregiver men have received relatively little attention, particularly from geographies of care and caregiving researchers. This analysis hopes to shed light on the unique, yet diverse, experiences of men caregiving for persons with multiple chronic conditions in Canada. Drawing on semi-structured interviews with nineteen men caregivers in two provinces of Canada, this analysis aims to explore how social and physical axes of difference shape men’s daily lived geographies when providing care. Our thematic findings reveal that caregiving is experienced by participants at the three scalar levels of the body, the home and the community. Our intersectional analysis reveals that at each scalar level, being a man was not the only variable shaping caregiving experiences. Rather, it was also age, physical capacity, culture, socio-economic status, marital status, housing status, social connectedness, relationship to the care recipient and care recipients’ physical and mental capacity that shaped experiences and meanings of place during the caregiving process. Accounting for this diversity at each scale, our findings point to the unique stresses and challenges experienced. We conclude by emphasizing the significance in acknowledging the diverse challenges that exist for all caregivers in order to inform comprehensive and inclusive social policy that ultimately will produce equitable caregiver supports.     

Feelings of distance and proximity: exploring the emotional geographies of men caregiving for family members with multiple chronic conditions

Care exchanges are imbued with emotion, yet few geography of caregiving researchers have explored how emotions shape such experiences. Furthermore, the emotions of caregiver men have been largely overlooked. As such, this secondary analysis aims to geographically explore the emotion discourse of a diverse group of men caregiving for family members with multiple chronic conditions. Drawing on semi-structured interviews with nineteen men caregivers in Canada, our thematic findings reveal that the men’s discourse portrayed emotions experienced relationally at three levels: Between the caregivers and their own selves, others and the wider community. It was also found that the men commonly expressed their emotional experiences using geographic notions of distance (e.g. feeling far, isolated) and proximity (e.g. feeling close, connected) and that these emotions were further complicated by the participants’ diversity or situated ‘place-in-the-world’. Overall, our findings demonstrate the importance of emotional geographies in caregiver men’s lived realities and how they move between distance and proximity in order to manage their emotions as caregivers. By considering caregiver diversity and the role emotions play in shaping caregiver experiences, programs, services and best practice can become better informed on ways to enhance the provision of more context sensitive and equitable caregiver support.     

Introduction: space,place and the geographies of women's caregiving work

The vast majority of caregivers, whether formal or informal, paid or unpaid, are women. Health care restructuring across the West, inspired by a shift from the welfare to neoliberal state, has greatly impacted caregiving. The idea for this collection arose as a result of a special paper session on the geographies of caregiving, held as part of the Association of American Geographers Meeting (Chicago, 2006). In hearing the papers presented, it became clear that geographers are engaged in interesting and innovative research in this area, much of which involves women's caregiving work in particular. As both unpaid informal family caregiving and paid formal practitioner-provided care are mainly addressed in this collection, they are briefly discussed in this editorial. This is followed by a discussion of the geographical contributions to the growing caregiving literature, which provides the foundation for an overview of ongoing and new research directions. The four articles that make up this special issue are then reviewed in brief. Finally, we identify issues that cut across all four articles, leading to a discussion of future research directions.