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.     

Masculinities and geography,moving forward: men’s bodies,emotions and spiritualities

Geographical work on men and masculinities has expanded and diversified since the 1990s. Gender, Place and Culture has been, and continues to be, a significant outlet for this research. Geographies of masculinities now range across diverse sub-fields – social, cultural, economic, health, post-colonial, urban and rural geographies. We provide a brief overview of this scope, including the expansion of geographies of masculinities beyond the Anglo-American sphere. We then focus on two vibrant fields of research on geographies of men and masculinities, which cut across the various sub-fields of the discipline: men’s embodied and emotional geographies, and their experiences in relation to religion, faith and spirituality. We discuss these fields, suggesting further productive developments for geographies of masculinities, which include work on the body and wellbeing, body size, male care giving, men’s experiences in diverse faith communities, and men and alternative spiritualities. Ongoing development of geographical work on men and masculinities is important for helping to contest patriarchal structures and knowledge production.     

Shopping,social inclusion and the urban geographies of people with intellectual disability

In this paper, we examine the social geographies of people with intellectual disabilities. We focus particular attention on the significance of shopping and spaces of consumption as they relate to questions social inclusion and belonging in the lives of PWID. The focus on consumption offers a useful counterpoint to a prevailing policy emphasis on social inclusion through productive activities. The paper also contributes to the literature on intellectual disability within social and health geography, shedding light on the varied socio-spatial experiences of people beyond the confines of community-care facilities and other separate spaces. Our analysis draws on data collected from a participatory research project in Toronto (Canada). The project involved a small but diverse group of people with intellectual disabilities, who led academic researchers on a series of excursions designed to explore those places and routes that make up their everyday social geographies. Shopping emerged as a significant but often ambivalent theme in the context of these geographies, and the analysis demonstrates the complex interplay of autonomy and control, pleasure and restraint, care and support that shape people’s experiences of consumption. We conclude by discussing the significance of these findings for notions of social inclusion and belonging.     

Family caregiving for older adults: gendered roles and caregiver burden in emigrant households of Kerala,India

The Indian state of Kerala leads the demographic transition and characteristically showcases emigration of predominantly male adult children, leaving behind parents, spouses and children. When men emigrate, gendered contexts burden women, especially spouses and daughters-in-law, with caregiving duties including elder care. Employing the social exchange perspective and drawing on in-depth interviews of left-behind caregivers to older adults in emigrant households, we explore reciprocal motives, expectations and perceptions of burden. Findings resonate gendered expectations of care and social sanction that ensure women do much of the caregiving. Daughters-in-law sacrificed careers and endured separation from husbands to transition into caregiving roles, costs borne to effectuate their husband's filial role. Perceived non-reciprocity, unbalanced exchanges and unmet expectations increased perceptions of burden for caregivers. Temporary financial autonomy could hardly alleviate perceptions of burden among women caregivers who perceived emotional and functional support exchanges from husbands, older adults themselves or other family members as supportive.     

‘It’s a very isolating world’: the journey to HIV care for women living with HIV in British Columbia,Canada

HIV health services research conventionally defines place in terms of proximity to care. However, understandings of place must also include the social spaces that women living with HIV (WLWH) occupy which shape their experience of health and access to care. Drawing on focus group data from the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, we explored how 28 WLWH navigate geographic place and social space in attempting to access HIV-related healthcare within and across a range of urban to rural localities in British Columbia (BC), Canada. We describe how existing services, even if physically close, can be socially marginalizing as women confront HIV stigma, racism, and classism, which operate to exclude women from the places and spaces they must access for care. We also emphasize how women enact ‘geographies of resistance’ and succeed in carving out their own safe options for care and support. Finally, we share recommendations identified by women themselves towards developing local and community-driven ‘geographies of change’ that support the health and healing of diverse communities of WLWH. Our findings stress the urgent need to acknowledge and redress socio-spatial barriers to care and to work with WLWH to co-create a therapeutic landscape that reflects women’s diverse identities, localities, emotions, and experiences.     

Engaging in the disablement process over space and time: narratives of persons with multiple sclerosis in Ottawa, Canada

This article presents an interpretive analysis of the narratives of 15 men and women who have been diagnosed with multiple sclerosis (MS) living in the city of Ottawa, Ontario, Canada. Relatively little is known about how people who are affected by MS cope with the challenges posed by social and physical barriers in their environment. Our research investigates two objectives: (1) to explore how those who have developed MS cope with their disease and resulting impairments, both in terms of the bodily experiences of becoming a chronically ill person and in terms of how they cope with changing relationships, changing identities and challenges in their physical environment; and (2) how they engage in the process of disablement over time and space as a result of these changing social and spatial relationships. We argue that the physical body and its social placings in public and private spaces are intertwined and both affect experiences of health, ability, impairment, disability and chronic illness. We further argue that these relationships are experienced across time and space, and in place, as people who have developed a chronic illness, such as MS, engage in, with and through the process of disablement. This article demonstrates the need for researchers to pay more attention to the role and significance of the simultaneity of space, place and time in shaping the experiences of people with disabilities and chronic illnesses, as it has been shown that these variables played a significant role in regulating the everyday experiences of this study's respondents.     

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.     

Farmwomen's emotional geographies of care: a view from rural Ontario

This article contributes to geographies of rural women's health by investigating farmwomen's perceptions of their caring roles and responsibilities, which are crucial to the wellbeing and sustainability of rural people and their communities. Featuring a thematic analysis of interviews and a focus group with farmwomen from Ontario, Canada, the research examines farms and farming as unique places and spaces of care. Informed by the literature on emotional geographies, the article examines how care is situated and performed through farmwomen's negotiation of multiple, overlapping identities and how these are embodied and affective in emotional work. The findings not only confirm the paramount role of women in rural care, they demonstrate the interdependence of family, community and work as central to the challenges of rural women's health. The article argues that the link between health and productivity on the farm is crucial to understanding farmwomen's caring, and highlights the paradox that their emotional work is as much about opportunities for power and resistance as it is about obligation and subordination.     

The space between: using ‘relational ethics’ and ‘relational space’ to explore relationship-building between care providers and care recipients in the home space

Geographers and other social scientists have a longstanding interest in ‘geographies of aging’ focused on the provision of care to vulnerable older populations and the challenges and experiences of caregivers [Skinner, M. W., Cloutier, D., & Andrews, G. J. (2014). Geographies of ageing: Progress and possibilities after two decades of change. Progress in Human Geography, 1–24]. This qualitative research project explores strategies for relationship-building used by home support workers and older residents according to a ‘relational ethics’ framework, enacted in the ‘relational space’ of the home environment. This framework rests on four principles: engagement, embodiment, mutual respect and environment, and argues that ‘relationships’ between care providers and care recipients must be preserved as the real essence or heart of the health care experience. Two linked conclusions are drawn from the research: that the treatment of the environment can be expanded using a social geographic lens to capture the more active influence of ‘homes’ on relationship-building and second, the relational ethics framework is useful in the home care context to characterize and ground the importance of relationships in the home care domain and the importance of home care to foster aging in place for vulnerable older persons.     

Voluntarism and long-term care in the countryside: the paradox of a threadbare sector

This article contributes to the burgeoning literature on the geographies of voluntarism by addressing how voluntary sector providers in rural communities respond to the downloading of responsibilities for health and social care associated with public service restructuring. Drawing on a qualitative analysis of long-term care in Ontario, it focuses on the consequent actions of non-profit organizations, community support groups and volunteer caregivers in three different rural settings. Despite evidence of increasingly disproportionate levels of voluntarism amongst rural communities, the results reveal sector- and place-specific opportunities that allow voluntary sector providers to overcome the limitations of the rural service environment. The findings suggest that in the longer run, however, the growing dependence on local solutions will only exacerbate the uneven geographies of health and social care across rural space. Resolving this paradox remains a critical yet neglected challenge for sustainable rural services and communities.     

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.     

‘Facing it Together’: Early Caregiving Responses to Vancouver's HIV/AIDS Epidemic

This article utilises oral history interviews with long-term survivors and caregivers in Vancouver, British Columbia to foreground the importance of gay men's early HIV/AIDS caregiving work. Caregiving was essential to the health and resilience of Vancouver's gay community and served as a political response to homophobic discourses that demonised gay men and devalued the lives of people living with HIV/AIDS. This analysis of the practical and political significance of HIV/AIDS caregiving demonstrates that historians must find better ways to recover the often-untold histories of men's caregiving and domesticity and appreciate their significance to the success of social movements.     

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.     

‘The greatest loss was a loss of our history’: natural disasters,marginalised identities and sites of memory

This paper examines intersections between space, materiality, memory and identity in relation to lesbian and gay experiences of recent disasters in Australia. Drawing on interviews with lesbians and gay men in two disaster sites, the paper argues that disaster impacts may include the loss of sites of memory that inform and underpin the formation and maintenance of marginalised identities. We explore the ways in which social marginality is experienced by sexual minorities during disasters as a result of threats to sites of lesbian and gay memory. The paper contributes to scholarship in geographies of memory by investigating the impacts of disasters on how memory is spatially located and experienced.     

‘Moving on’? Exploring the geographies of retirement adjustment amongst farming couples

Retirement is a life transition that has been relatively underexplored by geographers. In particular, mirroring other areas of academic and policy research, studies on retirement transitions and post-retirement experiences have been relatively sparse. Drawing on case studies from research in Hampshire and West Sussex (UK), this paper considers the challenges and issues surrounding the occupational cessation and retirement relocation of former farming couples. Utilising in-depth interviews, the paper explores how work-life histories may serve to intricately shape the geographies of retirement. It is seen that whilst family farming provided a shared occupation for couples, the respective gender(ed) roles and associated positionings in relation to farming served to differentially shape respective partner's experiences of, and adjustment to, retirement. In focusing on post-retirement experiences, the paper advocates a more temporally relational understanding of the geographies of older age which recognises how past places and identities are drawn upon in developing a sense of physical, social and autobiographical insideness in retirement spaces.     

Narratives of emotion and anxiety in medical tourism: on State of the Heart and Larry's Kidney

This paper explores the emotional geographies of State of the Heart and Larry's Kidney—two nonfiction narratives about medical tourism wherein American patients and their caregiver companions travel abroad for life-saving surgeries. The paper has two main goals: first, to illustrate the importance of emotional geographies in medical tourists' lived experiences of travel and tourism, as well as the giving and receiving of transnational health care and second, to generate empirical, theoretical, and methodological discussions between geographical, travel, tourism, and health studies on the relevance of emotional geographies. Medical tourists' experiences of travel and health care have been usually examined as spatially distinct rather than as entwined phenomena. We address the above goals by discussing how the narratives of traveling thousands of miles to a radically different socio-cultural milieu in order to receive essential medical care produce two interrelated emotional geographies: first, they demonstrate the existence of ‘emotional amplification’ (increase in the intensity of emotions) and ‘emotional extensivity’ (increase in the range of emotions) and second, they show how anxiety is underpinned by proximity to Otherness, uncertain boundaries, and isolated decision making. We conclude by briefly addressing how our examination of these narratives can be usefully expanded.     

The spatial and gendered politics of displaying family: exploring material cultures in grandfathers’ homes

This article analyses the meaning that 27 men who are grandfathers ascribed to the domestic material cultures of their homes, during an exploratory study that investigated their contemporary social and cultural geographies. In recounting stories about a number of items and artefacts placed about their homes during the interviews, that they specifically related to their experiences as grandfathers, the men provided insight into the various ways in which ageing men position themselves in ambivalent ways in relation to cultural stereotypes about grandparenthood, masculinities and ageing. Moving beyond the surface of the objects on display, their discussions also revealed the complex ways in which the material cultures of their homespaces are shaped by, and reproduce, diverse family relationships and their associated politics. The article contributes to, and bridges agendas in social and cultural geography that examine the relationship between the shifting meanings of home for older men, the politics of attending to the material and both the family and older masculine identities as spatial projects.     

They say ‘kids with asthma don’t play sports’: geographies of asthma

ABSTRACT

Asthma is common among children worldwide. Although complex, physical activity participation is important in asthma management, to decrease chronic disease risk, and to facilitate healthy lifestyles for children. Team sport participation is a common way for children to engage in physical activity, but the spaces in which team sport is experienced can present social, physical and emotional challenges for children with asthma. This research aims to understand elements of the environment, broadly defined, that impact experiences of asthma in sport. In-depth interviews were conducted with youth team sport athletes (n?=?11) diagnosed with asthma, and youth team sport coaches (n?=?18) in Ontario, Canada. Results suggest that understanding the physical and social needs of child and youth athletes, and ensuring well-controlled asthma, are critical to maximizing performance and improving quality of life for asthmatic athletes.     

Listening and learning: giving voice to trans experiences of disasters

This article gives voice to trans experiences of disasters, investigating their specific vulnerabilities and resilient capacities. We draw on findings from a project on lesbian, gay, bisexual and trans (LGBT) experiences of recent Australian and New Zealand disasters. We present and analyse trans voices from a survey conducted across multiple case study sites and insights from interview data with a trans person who experienced the 2011 Brisbane floods. Conceptually, to provide a robust understanding of trans experiences of disasters, we bring socially sensitive disaster studies into conversation with trans geographies. Disaster studies have begun to examine LGBT experiences, with some suggestion that trans people are most vulnerable. We advance this work by focusing on trans lives. Trans geographies, in turn, underline the importance of space, place and the body in understanding trans lives, and the need to examine the lived reality of trans people’s everyday geographies rather than embodiment as an abstract concept. Applying these insights to the trans voices in our project, we examine four themes that highlight impediments to and possibilities for trans-inclusive disaster planning: apprehension with emergency services and support; concerns about home and displacement; anxiety about compromising the trans body; and the potential of trans and queer interpersonal networks for capacity building. We offer suggestions for trans-inclusive disaster planning and preparedness, and indicate how the insights from trans experience can enrich disaster planning and preparedness for wider social groups.     

‘Unlike Vancouver … here there’s nothing’: imagined geographies of idealized health care for LGBTQ women

This article explores imagined geographies of health care among Lesbian, gay, bisexual, transgender and queer (LGBTQ) women in Halifax and Vancouver. In expressing the possibilities and limitations of accessing care, participants frame their own experiences through spatialized narratives of how LGBTQ people are thought to be treated elsewhere. Participants’ explicit connections and distinctions between Halifax and Vancouver gave insight into how their perceived difficulties in one health care context are sometimes framed by imagining more ease in accessing care in the other. We explore here the implications of these imagined, idealized spaces, which may set up false expectations that things are always better elsewhere. We reveal imagined geographies and senses of place as highly relevant features in LGBTQ women’s accounts of experiences with and access to health care and expand conventional arguments about physical access to care.