Abstract
Palliative care clients with complex needs are increasingly choosing to remain at home for their care. Home represents familiarity, presence of supportive family and friends, potential for normalcy and, a safe haven. The palliative care literature although robust is hardly ever linked with safety and home care. Patient safety has been focused predominantly on institutions without a corresponding level of research or safety initiatives in the home care sector. Although a growing body of research has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients, caregivers, and paid providers who are responsible for managing and coordinating palliative home care. The aim of this study was to describe the experiences, challenges, and insights regarding safety for adults receiving and providing palliative home care services. Mixed method design was used to capture the multiple meanings and influences on the broadened conceptualization of home care safety including emotional, social, and functional safety. There were three types of participants in this multi-site study namely palliative home care clients, caregivers, and paid providers. Individual interviews (n = 33) were conducted in the client’s home followed by a photo “walkabout” to describe their daily experiences and routines. Focus groups, three with experienced professionals (n = 25) and two with home support workers (n = 11) were also conducted. This study supports the broadened conceptualization of home care safety namely that: the safety of the client and caregiver are inextricably linked; the home is an unregulated and uncontrolled site for providing palliative home care in contrast to hospitals or other institutional settings; and clients and caregivers have the autonomy to live and take risks in their own home. To ensure quality in palliative home care and to mitigate safety risks the client and caregiver(s) should be considered as the unit of care; caregivers need to be better prepared and trained to manage the complexity of issues; and regular assessments are imperative to monitor and detect changes in the unit of care and their changing needs while respecting their autonomy to make less than safe choices.
Highlights
Palliative care clients with complex needs are increasingly choosing to remain at home for their care
There has not been a corresponding level of research or patient safety initiatives in the home care sector [7]
A growing body of research [7,9,19,20,21,23,24,25,26,27] has begun to highlight the complexity and multidimensionality of home care safety there is a dearth of understanding of safety issues from the perspectives of clients and caregivers themselves, as well as from the providers who are responsible for managing and coordinating palliative care at home
Summary
Palliative care clients with complex needs are increasingly choosing to remain at home for their care. Home care includes a wide range of services to individuals who need medical or nursing treatments such as wound care and medication management. It includes assistance with activities of daily living like bathing, dressing, and eating, and/or help with instrumental activities like housework and meal preparation [6]. Caregivers often experience sleep deprivation because they provide around-the-clock care such as administering and managing medications, moving the client, managing medical equipment, and providing intimate personal care such as bathing, toileting, and skin care [10] This is in stark contrast to how clients are cared for in institutions where there are two or three shifts of paid professionals prepared to provide this kind of care
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