A collaboration between Island Health home-care nurses and School of Nursing faculty
By Patricia Chisholm, Ami Bitschy and Kelli Stajduhar
It could be that quality of life for family caregivers has already improved as Island Health home-care nurses and administrators collaborate with University of Victoria faculty and students on an intervention to assist family members to identify their needs for support. The “Supporting Family Caregivers of Palliative
Patients at Home” study will examine the quality of life and other care-related measures for approximately 500 Vancouver Island family caregivers (FCGs) over the next 3 years. It is important to support FCGs to stay as healthy as possible because they provide most of the care for seriously ill loved ones who prefer to die at home, and home-care services are an essential component of end-of-life care. Although home-care nurses (HCN) provide thorough holistic palliative care, there is currently no systematic way for them to evaluate FCG support needs, as patient needs tend to be the primary focus. Our study aims to fill a practice gap for FCGs and HCNs who need a simple process for needs-assessment.
Research by nurses, for nurses. With the support of Island Health leaders, managers and palliative care coordinators, as well as UVic faculty and students, HCNs are at the frontline in recruiting FCGs, helping to conduct the study and describing the implementation process. Over 40 HCNs in offices across Vancouver Island (from Campbell River, Comox Valley, Oceanside, Ladysmith, Duncan, and several South Island offices: Peninsula, Esquimalt/Westshore, Royal Oak, and Victoria) are participating in the study. These nurses are supported by our study Research Liaisons who provide training and ongoing mentorship through regular
phone contact and engagement/education events. Supporting South Island is HCN Jayne Forster-Coull and retired social worker Elizabeth Causton, in Central/North Island this support is provided by Island Health Palliative Care Coordinator Necia Kaechele.
Based on our pilot project in Port Alberni wherein FCGs expressed the desire for interviewer vs. pen and paper administration, current and former HCNs have been hired as Clinical Research Assistants (CRA) to complete in-home questionnaires using encrypted tablets that store data in a de-identified way. The
survey examines FCG quality of life, preparedness, burden, and bereavement outcomes after death. The initial survey takes approximately 90 minutes, subsequent monthly surveys are 1 hour, and we collect data until two possible end points: a) end of the study period or b) death of the patient. If patient death occurs
during the course of the study we will then schedule a 3-month bereavement survey. Feedback so far demonstrates that FCGs do not find the questionnaire process burdensome but rather useful in gaining self-awareness and identifying information gaps. HCN Stephanie Rempel is the CRA for South Island, and nursing masters student Patricia Chisholm covers the Central/North Island. In addition, we are fortunate to have Jill Gerke, Island Health EOL Manager and the Manager of the Palliative Care Unit at Nanaimo Regional Hospital working as a CRA in Central Island.
The inter-professional research team consults electronically and in-person on a regular basis. Research processes evolve as early findings are shared amongst the groups, and complimentary worldviews reveal the importance of both the numbers and the experiences of participants. For example, early results from the UK and Australia studies have helped guide the Canadian team in effectively engaging home-care nurses to participate in the research and to begin to systematically evaluate FCG needs. Co-Principal Investigators are Dr. Kelli Stajduhar, University of Victoria and Dr. Rick Sawatzky, Trinity Western University (and UVic Adjunct Faculty Member). Canadian co-investigators: Dr. Robin Cohen, McGill University; Laura Funk, University of Manitoba and Kristine Votova, Island Health. International co-investigators: Dr. Samar Aoun, and Dr. Chris Toye, Curtin University, Australia; Gail Ewing, University of Cambridge, UK; and Gunn Grande, University of Manchester, UK.
The ethics offices at the University of Victoria and Island Health have approved the research project. Funded is provided in partnership by Technology Evaluation in the Elderly Network (TVN) and the Canadian Cancer Society Research Institute (CCSRI). If you have any questions or comments to ask our research team please contact our Project Coordinator, Ami Bitschy, at amice@uvic.ca or 250-721-6674.
From the 2015 Spring Communiqué — In Collaboration with Island Health
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