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A holistic approach to supporting death in the home : implementation of a home hospice program in a northern community : a study protocol
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INTRODUCTION: To enhance support for individuals at end of life to die at home, a new community-driven home-based hospice program was developed-Home Hospice. This wholistic hospice care program, co-designed by hospice care staff, community end-of-life care providers, researchers, and health systems decision-makers, will provide around the clock care to clients and their families.
METHODS AND ANALYSIS: This mixed methods study, guided by a process evaluation framework, will use secondary client and caregiver data collected as part of regular Home Hospice program processes, as well as primary interview data collected from caregivers at least three months post-death of the client and from hospice staff and volunteers involved in the Home Hospice program. Analysis will include descriptive statistical analysis of quantitative data and thematic analysis employing an inductive and a deductive qualitative analysis approach.
ETHICS: Ethics approval has been received from the University of Northern British Columbia (File No: 6009117). All individuals and caregivers who enroll in the Home Hospice program will be invited to participate in this study. At three months post-death of the client, hospice staff will contact caregivers to ask if they would like to participate in a one-on-one interview with a research team member. Staff and volunteers will also be eligible to participate in one-on-one interviews with research team members. De-identified participant data will be provided by hospice staff to the research team. All participants will provide informed consent prior to participation in the study.
DISSEMINATION: This study will use an integrated Knowledge Translation/Knowledge Mobilization (iKTKM) lens wherein the research team will work closely and meaningfully with knowledge users and community partners at all stages. Evidence-based and targeted iKTKM products will be created, including community event presentations and social media posts to share findings with participant and community audiences. Further, findings will be disseminated at conferences, workshops, and policy rounds with academic and decision-making audiences. Preliminary and full project findings will be published in high-quality open access journals.
STRENGTHS AND LIMITATIONS OF THIS STUDY: Co-design of Home Hospice program and evaluation metrics involves researchers, hospice staff, health systems decision-makers, and community members.Evaluation metrics involve prospective collection of service utilization from client, family, hospice, and health systems perspectives.Integrated knowledge translation approach which frames the knowledge dissemination plan for the study findings focuses on a range of audiences, including local citizens, hospice and community end-of-life care providers, health systems decision-makers, and academic professionals.As a one-year pilot study, the number of clients who may be able to participate in this program will be approximately 50 persons.
http://dx.doi.org/10.1371/journal.pone.0306553
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