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

Abstract

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.

Seniors managing multiple medications: using mixed methods to view the home care safety lens

“…This study provides additional empirical support for the notion that client safety is inextricably linked to the safety of the family/caregiver [ 8 – 11 , 24 , 25 ]. Caregivers, who were predominantly elderly in this study, found themselves taking on increased tasks and responsibilities while trying to balance their own commitments and pre-existing physical and mental health challenges.…”

“…These findings confirm related work that queries the sustainability of home care delivery systems, which rely on the chronic overloading of numerous caregivers and providers [ 8 – 10 , 41 ]. It follows that initial and ongoing home assessments need to evaluate not only clients’ and caregivers’ health conditions and physical capacities, but also pay close attention to the cognitive, emotional, social, functional, financial, and literacy capacities within the household, as well as their networks of support and willingness to accept responsibilities [ 10 , 11 ]. Home care providers need to be responsive to the capacity, limits, and more importantly, the willingness of clients and their family caregivers to safely manage chronic conditions and medication issues in the home.…”

“…Home care providers need to be responsive to the capacity, limits, and more importantly, the willingness of clients and their family caregivers to safely manage chronic conditions and medication issues in the home. Regular re-assessment and focusing on the client and caregiver(s) as the “unit of care” should be part of home care including updating and adapting care and supports to their changing health needs [ 4 , 11 ].…”

“…Absent in the literature was evidence related to outcomes such as a sense of wellbeing, confidence to continue medication administration, and the experience of medication mismanagement from the perspective of the individual [ 6 ]. Also noted was a paucity of research into the perspectives and impact of family/caregivers regarding medication management even though we know from past research that client and caregiver safety are closely linked [ 7 – 11 ].…”

“…Providers can engage clients and family/caregivers in conversations and collaborate with them to mitigate risks; but even when this is done, the nature of the home setting requires clients and caregivers to regularly exercise autonomous decisions about medication use in the context of minimal professional supervision as well as frequently strained or absent home and community supports [ 24 ]. Thus, the care and safety of clients around medication management cannot be attended to without including the family members, unpaid caregivers, and paid providers in the equation [ 8 – 11 , 24 , 25 ].…”