Abstract:BackgroundMuch of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A “palliative approach” has been articulated as one way of conceptualizing this care. However, there is a lack of concep… Show more
“…The importance of their role is magnified in rural areas where healthcare resources are limited [2–4], and in the context of an aging population where early support [5], provided at home [6], is the optimal standard of care. Although research on volunteers is in a nascent stage, there is accumulating evidence of the benefits of volunteers for palliative patients and their families [1, 7, 8].…”
BackgroundA compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections.MethodsVolunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders.ResultsSeven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers.ConclusionsVolunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.
“…The importance of their role is magnified in rural areas where healthcare resources are limited [2–4], and in the context of an aging population where early support [5], provided at home [6], is the optimal standard of care. Although research on volunteers is in a nascent stage, there is accumulating evidence of the benefits of volunteers for palliative patients and their families [1, 7, 8].…”
BackgroundA compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections.MethodsVolunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders.ResultsSeven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers.ConclusionsVolunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.
“…Sawatzky et al, 2016). Within the palliative context, one of the key goals is to enable people with advanced illness who are dying to “live until they die.” This entails several dimensions such as helping people to find meaning in life until the end (Randall & Downie, 2006; Sawatzky et al, 2016). It goes without saying that, in the context of homelessness, this is both challenging and worth reflecting upon.…”
Multiple illnesses are common in all homeless populations. While most previous studies have focused on experiences of mental illness, there is a scarcity of studies about experiences of bodily illness among people who are homeless. This study aimed to explore illness narratives of people who are homeless, and how homelessness as a social context shapes the experience of multiple and/or advancing somatic conditions. The design was a qualitative single-case study, using interpretive description. Data were generated through interviews, with nine participants who were homeless rough sleepers in Stockholm, Sweden, recruited while receiving care in a support home for homeless people with complex care needs. The findings revealed experiences of illness embedded in narratives about falling ill, being ill, and the future. The particularity of these illness narratives and the way that they are shaped by homelessness give rise to several observations: the necessity of a capable body for survival; chaos and profound solitude in illness and self-care management; ambiguous feelings about receiving care, transitioning from independence, and “freedom” in the streets to dependency and being institutionalized; and finally, the absence of hope and desire for recovery or a better future. The narratives are discussed from the perspective of Frank's four types of illness stories (restitution, chaos, quest, and testimony). The findings stress that to provide appropriate care and support to people who are homeless and have multiple and/or advancing somatic conditions, health care professionals need to be informed both about the individual's biography and about the circumstances under which illness and self-care takes place in the streets.
“…A recent knowledge synthesis exploring the concept of a palliative approach identified three essential characteristics: an upstream orientation of early adoption of the principles of palliative care to meet the needs of people who have life‐limiting illness and their families; adaptation of palliative care knowledge to other chronic illness conditions; and integration and contextualisation within the healthcare system (Sawatzky et al . ). With this conceptualisation, a palliative approach builds on the helpful distinction between general and specialised palliative care (Quill & Abernethy ), with attention to the overlap or blending of palliative principles and chronic disease management for people with progressing chronic conditions, regardless of healthcare sector, and with an emphasis on quality of life and evolving goals of care (Schofield et al .…”
Section: Introductionmentioning
confidence: 97%
“…Nurses care for people with advancing chronic life‐limiting conditions in a variety of settings who would benefit from a palliative approach.A palliative approach involves a re‐orientation to an upstream adoption of palliative care principles to meet the needs of people who have life‐limiting illness and their families; adaptation of palliative care knowledge to chronic illness conditions other than cancer; and integration and contextualization within the healthcare system (Sawatzky et al . )Nurses have a pivotal role in the integration of a palliative approach which can be enhanced through interpersonal relationships and communication with patients and their families, role clarification, and education.…”
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