Home and Community Care Digest
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.
Be the first to comment on this!
Personal Subscriber? Sign In
Note: Please enter a display name. Your email address will not be publically displayed