Implementing volunteer-navigation for older persons with advanced chronic illness (Nav-CARE): a knowledge to action study.

BACKGROUND: Nav-CARE is a volunteer-led intervention designed to build upon strategic directions in palliative care: a palliative approach to care, a public health/compassionate community approach to care, and enhancing the capacity of volunteerism. Nav-CARE uses specially trained volunteers to provide lay navigation for older persons and family living at home with advanced chronic illness. The goal of this study was to better understand the implementation factors that influenced the utilization of Nav-CARE in eight diverse Canadian contexts. METHODS: This was a Knowledge to Action study using the planned action cycle for Nav-CARE developed through previous studies. Participants were eight community-based hospice societies located in diverse geographic contexts and with diverse capacities. Implementation data was collected at baseline, midpoint, and endpoint using qualitative individual and group interviews. Field notes of all interactions with study sites were also used as part of the data set. Data was analyzed using qualitative descriptive techniques. The study received ethical approval from three university behavioural review boards. All participants provided written consent. RESULTS: At baseline, stakeholders perceived Nav-CARE to be a good fit with the strategic directions of their organization by providing early palliative support, by facilitating outreach into the community and by changing the public perception of palliative care. The contextual factors that determined the ease with which Nav-CARE was implemented included the volunteer coordinator champion, organizational capacity and connection, the ability to successfully recruit older persons, and the adequacy of volunteer preparation and mentorship. CONCLUSIONS: This study highlighted the importance of community-based champions for the success of volunteer-led initiatives and the critical need for support and mentorship for both volunteers and those who lead them. Further, although the underutilization of hospice has been widely recognized, it is vital to recognize the limitations of their capacity. New initiatives such as Nav-CARE, which are designed to enhance their contributions to palliative care, need to be accompanied by adequate resources. Finally, this study illustrated the need to think carefully about the language and role of hospice societies as palliative care moves toward a public health approach to care.

Volunteer navigation partnerships: Piloting a compassionate community approach to early palliative care.

BACKGROUND: A 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. METHODS: Volunteers 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. RESULTS: Seven 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. CONCLUSIONS: Volunteers 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.

Nurse-led navigation to provide early palliative care in rural areas: a pilot study.

BACKGROUND: Few services are available to support rural older adults living at home with advancing chronic illness. The objective of this project was to pilot a nurse-led navigation service to provide early palliative support for rural older adults and their families living at home with advancing chronic illness. METHODS: Twenty-five older adults and 11 family members living with advancing chronic illness received bi-weekly home visits by a nurse navigator over a 2-year period. Navigation services included symptom management, education, advance care planning, advocacy, mobilization of resources, and psychosocial support. The nurse navigator collected longitudinal data on older adult and family needs, and older adult quality of life and healthcare utilization. RESULTS: Satisfaction with the service was high. There was no attrition over the 2-year period except through death, and few cancelled visits, indicating a high degree of acceptability of the intervention. The navigator addressed complex, multi-faceted needs through connecting health, social, and informal community resources. Participants who indicated a preferred place of death were able to die in that preferred place (n = 7). Emergency room use by participants was minimal and largely unpreventable by the nurse navigator. Longitudinal health-related quality of life scores for many participants were poor, lending further support to the need for more focused attention to this upstream palliative population. CONCLUSIONS: Using a nurse navigator to facilitate early palliative care for rural older adults living with advanced chronic illness is a promising innovation for meeting the needs of this population. Further research is required to evaluate outcomes on a larger scale.

Team-based education in a palliative approach for rural nurses and unlicensed care providers.

This article describes the preparation and delivery of an educational intervention designed to improve rural nurses and unlicensed care providers' confidence in a palliative approach to care. A palliative approach takes the principles of supportive palliative care and adapts them for application earlier in nonspecialized palliative contexts for individuals living with life-limiting chronic illness. Curriculum in a palliative approach was constructed for nurses and unlicensed care providers (care aides and home health workers) and was delivered through a workshop and monthly follow-up sessions offered through distance technology. Participants valued the joint interactive education and came away with greater appreciation for one another's contributions to care. Insights were gained into common challenges when attempting to apply a palliative approach in rural areas. Important lessons were learned about educating nurses and unlicensed care providers together, about the use of technology for this group, and about teaching the concept of a palliative approach.

Promoting volunteer capacity in hospice palliative care: a narrative review.

Hospice volunteers play an essential role in the primary care network for end of life. The purpose of this review was to examine the evidence on hospice volunteers published between 2002 and July 2012. An electronic search of PubMed, CINAHL and PsychINFO using controlled vocabulary, and a reference scan, yielded 54 studies focusing on hospice volunteers. Studies were primarily descriptive using quantitative, qualitative and mixed methods. Findings from studies were grouped thematically into descriptions of the work of hospice volunteers; recruitment, preparation and retention of hospice volunteers; and perspectives and outcomes of the volunteer role. A substantial body of evidence exists describing the roles, stresses and rewards of hospice volunteering. Less is known about how to adequately recruit, prepare and retain volunteers. A small but intriguing body of evidence exists around volunteers' contributions to family satisfaction and patient longevity. Although the evidence around hospice volunteers continues to grow, there is an urgent need for further research. Findings indicate that volunteers make important contributions to high quality end of life care. However, more focused research attention is required to better understand how to maximize this contribution while providing better support for volunteers.

Program assessment framework for a rural palliative supportive service.

Although there are a number of quality frameworks available for evaluating palliative services, it is necessary to adapt these frameworks to models of care designed for the rural context. The purpose of this paper was to describe the development of a program assessment framework for evaluating a rural palliative supportive service as part of a community-based research project designed to enhance the quality of care for patients and families living with life-limiting chronic illness. A review of key documents from electronic databases and grey literature resulted in the identification of general principles for high-quality palliative care in rural contexts. These principles were then adapted to provide an assessment framework for the evaluation of the rural palliative supportive service. This framework was evaluated and refined using a community-based advisory committee guiding the development of the service. The resulting program assessment framework includes 48 criteria organized under seven themes: embedded within community; palliative care is timely, comprehensive, and continuous; access to palliative care education and experts; effective teamwork and communication; family partnerships; policies and services that support rural capacity and values; and systematic approach for measuring and improving outcomes of care. It is important to identify essential elements for assessing the quality of services designed to improve rural palliative care, taking into account the strengths of rural communities and addressing common challenges. The program assessment framework has potential to increase the likelihood of desired outcomes in palliative care provisions in rural settings and requires further validation.