Project Summary

In spite of a lack of research exploring the quality and type of care that is available to people who are homeless at the end of their lives, we know that the characteristics of hospice care and quality of life are dramatically different for marginalized persons as opposed to the mainstream population.
  

The Hospice and Homelessness in Canada Study is a 3-year research program to address unique aspects of hospice care for those marginalized by homelessness especially needs and barriers faced in gaining access to mainstream health care services. The goal is to develop a guiding model of hospice care that is adapted for the multidimensional and complex needs of those who are homeless.

Goals/Objectives

1. To describe the structures, processes, and outcomes necessary to provide quality, end-of-life care to people who are homeless.
2. To identify service gaps in end-of-life care for those who are marginalized by homelessness, and ultimately provide recommendations to build capacity for a specialized hospice care that can function within existing health care systems.
3. To gain insights into methodologies for working with this difficult-to-access population.

Primary contact information

Manal Guirguis-Younger, PhD.
St Paul University
Faculty of Human Sciences
Tel. 613-236-1393 (2390)
Email: myounger@ustpaul.ca

Research questions

1. What are the required and unique elements of a specialized hospice model that addresses the end-of-life needs of people who are homeless?
2. What are the unique care requirements for people who are homeless across Canada with respect to medical, social, and mental health issues?
3. What are the specific barriers to gain access to mainstream palliative and end-of-life care services experienced by people who are homeless across Canada?
4. How do we integrate a model of specialized end-of-life care into the mainstream system in light of resources?
5. What are the resources and functions required to create a feasible interface between mainstream and specialized care at the end-of-life?
6. What are the most effective approaches and ethical considerations for working with marginalized people, especially around end-of-life issues?

Methodology

Using a case study research design (Yin, 2003), data will be systematically collected and synthesized to describe community-based hospice services available to people who are homeless. Our five primary sources for both quantitative and qualitative data are:

1. people who are homeless
2. hospice care providers
3. agency administrators
4. program documents
5. client charts

Phases and timelines

The research will take place during the period of April 2006 to March 2009.

Phase 1  (April 2006 to September 2007).

We will use intensive case analysis and model building based on a review of The Mission Home Hospice in Ottawa using social and organizational based national principles and norms of practice.

Phase 2  (October 2007 to April 2008).

We will focus on investigating specialized services in 4 other major cities including Toronto and representative cities from the East and West.

Phase 3  (May 2008 to March 2009).

Based on the data and knowledge collected in the first two phases, we will build a theoretical and empirical based model that possesses high suitability and application potential for meeting the health care needs of people who are homeless at the end of their lives.

Funding body and amount

This project has received $85,844 in funding from the Social Science and Humanities Research Council of Canada.

Principal Investigator

Manal Guirguis-Younger, Ph.D.

Manal is an Assistant Professor at Saint Paul University, and adjunct faculty at the School of Psychology, University of Ottawa. She is a Research Associate at the Centre for Research on Community Services at University of Ottawa, and is a co-investigator on the New Emerging Team on End-of-Life Care for Seniors. Her primary area of research is palliative and end-of-life care for disadvantaged individuals. In addition, she is involved in several other funded projects dealing with rural palliative care, the role of volunteerism in improving the quality of dying for older persons, seniors’ health, and panel studies on homelessness.

 
Co-investigators

Frances Legault, RN, Ph.D.  
Frances is an Assistant Professor in the School of Nursing, University of Ottawa, with a specialization in community health nursing and a research program in community-based palliative care services for mainstream and marginalized populations. She is a co-investigator on the New Emerging Team on End-of-Life Care for Seniors, and Principal Investigator for a Canadian Institutes of Health Research (CIHR)/Canadian Health Services Research Foundation (CHSRF)-funded study to implement and evaluate interventions to improve continuity of care for community-based palliative care services in Ottawa for the mainstream population.

Tim Aubry, Ph.D.

Tim is a Full Professor in the School of Psychology and Senior Researcher of the Centre for Research on Educational and Community Services at the University of Ottawa. His areas of research include community mental health, homelessness, and program evaluation of health and social services for marginalized populations. Tim is currently serving as a Senior Editor of the Canadian Journal of Community Mental Health and the Chair of the Research and Evaluation Working Group of the Alliance to End Homelessness in Ottawa.

Collaborators

Stephen Hwang, M.D.

Stephen, an Associate Professor at the University of Toronto's Faculty of Medicine and Research Scientist at the Centre for Research on Inner City Health at St. Michael's Hospital, focuses his clinical and research activities on the health of homeless people. His current research projects include a study of "Health Care Utilization among Homeless People," funded by CIHR and the Agency for Healthcare Research and Quality; "Attitudes of Medical Trainees Towards Homeless Persons Presenting for Care in the Emergency Department," funded by the Physicians’ Services Incorporated Foundation, and an "Interdisciplinary Capacity Enhancement Grant in Homelessness, Housing, and Health," funded by CIHR.

Jeff Turnbull, M.D.

Even with Jeff’s responsibilities as Head of the Department of Medicine at The Ottawa Hospital, Chairman of the Department of Medicine at the University of Ottawa, and President of the Ontario College of Physicians and Surgeons, he continues his work as Medical Director of the Inner City Health Project for Ottawa’s homeless population. As the recipient of national and international grants for his work with health issues and the homeless, Jeff has worked with communities in Bangladesh, Africa, and the Balkans to develop health care services including the development of nursing resources for vulnerable populations.

Vivien Runnels, M.Sc., RRP

Vivien is currently a Ph.D. student in the Population Health Program at the University of Ottawa. She has been involved for several years in vocational rehabilitation, working with people with developmental disabilities, people with chronic pain, and people with mental health difficulties. Vivien’s research activities have focused on homelessness, deaths of people who are homeless, and a number of other studies including a study of food insecurity, and health inequalities and spatial characteristics.  She was on the planning committee of the Discovery University project, a university-level educational program for people who are homeless or low-income, and participated in its evaluation. She has been a community volunteer for many years. Prior to the Ph.D program, she was Research Coordinator for the Centre for Research on Community Services at the University of Ottawa.