Abstract

This study examined the true impact of home care on family caregivers through three case studies that looked at dying, death and bereavement in the community. The rationale for the study is rooted in recent trends that see the site of care increasingly shifted out of hospitals and into the home, which has brought mental, physical, emotional, and other demands to family caregivers that are not fully recognized in the home care discourse or home care policies. The study finds that home care policies tend to privilege the value of the caring relationship between the family caregiver and the cared for, without acknowledging the inherent tensions and challenges between caring about someone and the work involved in caring for someone. If home care is about social and emotional relationships, decision makers could implement policies that bring some of the social and emotional elements of home care into the hospital and other healthcare institutions without damaging the relationship between the caregiver and the cared for. Background: Stemming from both "humanitarian and economic concerns," there has been a shift to greater home-based care. Home care is now often recognized as the "gold standard" model of care in both institutional and domestic contexts. But home care provided in the home places demands (mental, physical, emotional, and others) on family caregivers - where caring responsibilities are typically added to existing domestic work duties and where the carer is "on duty" 24/7. These demands and resulting tensions are often not recognized in the home care discourse. Using palliative care as a case study to highlight some of the challenges and tensions associated with home care, this paper explored the implications of home care for family carers in the UK.

Methods: The realities of home care were examined via three case studies where each examined dying, death and bereavement in the community. Data came from 93 personal interviews with terminally ill individuals and/or their carers. Study 1 examined the experiences of people who were dying with cancer; study 2 interviewed the terminally ill and their carers in order to compare and contrast the provision of palliative care in the community of people who were dying with cancer with those dying with non-malignant disease; and study 3 interviewed bereaved carers about their experiences in order to evaluate a new hospice at home service designed to enable people to die at home.

Findings: Data indicated that the trend towards shifting palliative care provision out of the hospital and into the home fundamentally changes the meaning of the "domestic realm." The case studies revealed that frequently, space in the home had to be reorganized because most homes were not designed to accommodate the needs of the terminally ill (e.g., rooms had to be converted or modified). After the death, the reorganized space (and accompanying healthcare artifacts such as difficult-to-move or hide hospital beds) was often found to be a painful reminder of the lost loved one. In most of the current research related to home care, the physical and emotional effects on the domestic setting are rarely considered.

The tensions experienced by carers when providing bodily care (and witnessing bodily functions) in a society that has become increasingly individualized and privatized, and where bodily care is typically provided by a healthcare professional, are also factors that are not considered in home care research. Data indicated that these experiences can change the relationship between the terminally ill person and their caregiver, and home care policies fail to recognize that relationships can be affected (and identities changed - e.g., caring for a spouse at home can negatively impact the intimacy of the relationship) as a consequence of the process of caring. Home care "privileges the value of caring relationships without acknowledging the interaction of preexisting social relationships with the actual work of caring" and that this creates unreasonable expectations on society.

Conclusions: While it may make sense from an economic perspective for home care to be recognized as the "gold standard" of health care, this points to the neglected and misunderstood complexity of the relationship between caring about a loved one and the work involved in caring for a loved one. The authors suggest that greater consideration by policy makers for the impact and consequences of home care on family care providers is warranted. If home care is more about being surrounded by loved ones than about the home as a physical space for the provision of care, policies could be implemented to bring some of the social and emotional elements of home care into the hospital and other healthcare institutions without damaging the relationship between the carer and the care recipient.

Reference: Exley C, Allen DA. Critical examination of home care: End-of-Life care as an illustrative example. Social Science & Medicine. 2007; 65: 2317-2327.