Client, caregiver, and provider perspectives of safety in palliative home care: a mixed method design

Background 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. Methods 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. Results 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. Conclusion 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.