Places and Spaces of Care and Caregiving

There is a growing body of work that explores the meanings and experiences of care and caregiving in various settings including healthcare institutions, communities, homes, and the body. The characteristics, meanings, and experiences associated with these four spaces of care and caregiving affect the organization and delivery of care, and the relationships, experiences, and practices involved in providing and receiving care. At the same time, the organization and delivery of care, and the relationships, experiences, and practices that are involved may affect the social and spatial organization and characteristics of these spaces. While for clarity these spaces of care are discussed separately, they are intertwined in the everyday lived experiences of people, and it is crucial to recognize the interrelated scales and spaces of care and caregiving.

The Institution

The two main institutions for care and caregiving are hospitals including psychiatric facilities, and long term care facilities such as residential and nursing homes. Research on hospitals as spaces of care and caregiving has focused on the changing social, physical, and service environments associated with healthcare restructuring and the implications for patients and local communities. One aspect of this work critically examines the increasing commodification of healthcare institutions, and changing financial relationships and partnerships between the government and private market interests as strategies for dealing with soaring healthcare costs in Western developed countries. Another avenue of research centers on building understanding of the geographical variation in the availability and use of hospital services across time and place, and in relation to socioeconomic status, gender, and cultural and ethnic groups.

Residential and nursing homes are spaces of care and caregiving for individuals who are not acutely ill and require hospital care, but are not able to manage either by themselves or with assistance in their own home. Individuals living in these settings include frail elderly people, and individuals of all ages with physical, cognitive, and mental illnesses and disabilities. Key studies provide a more nuanced understanding of why long term care residential institutions are viewed as negative, while the home is viewed as a positive setting in which to provide or receive care. The research reveals differences in people’s attachment and belonging to these two different spaces of care. In addition, there is a stark contrast between the familiarity and comfort of the home’s physical environment such as the furniture, pictures, and the memories and stories that occurred there, and the control over the schedules and activities of care, and the unfamiliar, often sanitized, space of a nursing home, and the need to renegotiate caring roles and relationships.

The Home

An increasing number of studies are examining and critiquing the consequences of situating care and caregiving in the home. The home, as the principal setting for daily life, is one of the most important zones of familiarity and meaning. Current research demonstrates that situating healthcare in peoples’ homes affects the spatial and temporal organization of the home, raises issues concerning privacy, and affects individual family members’ social networks. Some of the key issues include the immense amount of work and effort involved, the impacts on the spatial mobility and social life of the families and individuals providing and receiving care, and the differing abilities of caregivers and care recipients to access resources and support networks. Key studies have determined that the ability to obtain resources and supports to assist in providing and receiving care varies due to distances between caregiver and care receiver, differences between urban and rural locations in terms of availability of public transportation and in home care services, and varying ability to pay for required services that are not publicly funded.

The profound relationship between the experiences and meanings of disability and/or illness and the physical and social environment of the home has been demonstrated. Research shows that people experience many changes in their home when it becomes a place where care activities, schedules, relationships, and processes occur. Some of these changes include moving to a more suitable environment, structural alterations such as entrance ramps, grab bars, and bath lifts, moving the bedroom to a more accessible location in the house, reordering domestic work including delegating tasks and pacing of the work, hiring private help, and using publicly funded home care workers. Both the characteristics of the home and family including accessibility, ownership, socioeconomic status, and family structure come together and create different meanings and experiences of care in the home.

Research on the impact of the changing context of publicly funded home care on individuals and families has revealed concerns about stricter eligibility criteria, cuts in the maximum number of hours, and restrictions in the types of tasks allowed. Service inflexibility, the ability to access the type and amount of services that are required, and high turnover of home care staff results in the inevitability that informal caregivers will have to look after most of the care activities. The example of the change in what publicly funded home care workers are permitted to do clearly shows the intersection between healthcare policy, homes, and individuals and families. Efforts to reduce home care budgets has led to workers being restricted to providing personal care such as baths and not other activities such as light house work, grocery shopping, or preparing meals. If individuals or families are not able to look after these activities they must hire someone to help, or more likely they rely on informal caregiving.

The Community

In addition to care and caregiving in the home, elderly people and individuals with disabilities also receive care in the community. Care and caregiving research focuses on the intersection between care and community settings such as workplaces, schools, counseling settings, and community centers. Of particular concern are the implications of the restructuring of both acute and longterm healthcare and the withdrawal of governments from the provision of services, which are characterized by the downloading of responsibilities for providing health and social care onto community-based voluntary organizations. Numerous studies have examined the challenges facing these voluntary sector organizations as they relate to the uneven nature of restructuring, the relationships between health professionals, volunteers, and individuals who receive care. Key studies have also examined ‘nontraditional’ spaces of care in the community such as day centers, drop in centers, and soup kitchens. Research on these spaces emphasizes the importance of caring practices that focus on bodily necessities such as food, shelter, and social relationships. Most of this research links back to the consequences of the de institutionalization of those with mental healthcare needs and the lack of appropriate services in the community.

The Body

The body is an important, yet until recently neglected, focus of care and caregiving research. Research in this area concentrates on how caring relations and practices are experienced both physically and emotionally, and imposed, on the bodies of caregivers and care recipients. The majority of the activities associated with care work such as feeding, changing clothes, bathing, toileting, administering medication, and monitoring healthcare technology are focused on the body. In essence, caregiving activities revolve around preserving, maintaining, restoring, and comforting the body. These necessary care activities can either be done by the individuals themselves, known as self care, or with the assistance of a paid or unpaid caregiver. Studies have examined the extraordinary investment of time and energy that is required in performing care work, the scheduling of care activities around fundamental bodily activities such as eating or sleeping, and the modifications that are required to the built environment as bodies grow, develop, deteriorate, and change. Bodily boundaries concerning privacy and control may have to be transgressed and renegotiated as many care activities are extremely personal and intimate.

Care and caregiving is also emotional work. Studies have shown that caregivers and care receivers experience complex and conflicting emotions such as joy, sorrow, guilt, anger, frustration, anxiety, hopefulness, and hopelessness. A myriad of roles and relationships may be reversed, such as an adult child providing care for the mother or father, or not expected, such as a parent having to provide more assistance to the child with a disability even though he or she is getting older. Drawing on psychoanalytic approaches, recent research has focused on the emotional implications of care and caregiving, and emotional connections to different care settings. The acknowledgement of the relationship among individuals’ bodies, caregivers’ bodies, places, and policy signals the importance of developing an ethics of care among health policy makers, researchers, and practitioners.