2014 TVN Strategic Impact Grant
Improving Palliative Care in Long Term Care Homes Using Participatory
Action Research
Funding:
$600,000
Residents living and dying in long-term care (LTC) homes represent one of society’s most frail and marginalized
populations of older adults. The average length of stay within LTC has decreased significantly in recent years making
LTC a major location of death for frail older adults nationally and internationally. Many barriers to optimal palliative
care in LTC homes have been identified, including a lack of knowledge, workload demands, and a failure to identify
impending death and implement a timely end-of-life care plan. Moreover, with 75% of LTC residents having cognitive
impairment, real challenges exist in providing effective palliative care to those residents with cognitive,
communication, functional, and behavioural problems.
There is a clear and pressing need for palliative care approaches suitable to this complex health care environment,
given the growing prevalence of residents with palliative care needs in LTC. The main objective of this proposed
research is to adapt, implement and evaluate a palliative care program that supports and sustains staff capacity to (a)
identify key transition points along the living-dying continuum; (b) activate critical communication with families and
other members of the interdisciplinary team, (c) relieve resident suffering, and (d) attend to issues of loss and grief. To
meet this objective a multiple case study design and participatory action research approach will be used to explore
how the research methodology itself, and different elements of the program, impact implementation in four different
Canadian LTC homes and how the combined elements of the program impact resident and family outcomes.
The findings of this study have the potential to improve the quality of life of frail older adults in LTC and provide better
support to their families. The proposed study promises to offer valuable information on implementation processes,
clinical and administrative-tools, and educational materials that will inform how qualified health professionals and
decision-makers can improve the delivery of palliative care in LTC globally.
Project Leader:
Sharon Kaasalainen, RN, PhD
Host Institution:
McMaster University
Dr. Sharon Kaasalainen is an Associate Professor in the School of Nursing at McMaster
University, an associate member of the Department of Family Medicine at McMaster, and an
Honourary Professor at Queen’s University in Belfast. Dr. Kaasalainen obtained her Bachelor of
Science in Nursing, and a Doctor of Philosophy in Clinical Health Sciences from McMaster
University, and a Master’s of Science in Nursing from the University of Toronto. Her top three
research interests are pain management and palliative care in long-term care; improving the
quality of life for older adults living in long-term care; and advanced practice nursing roles in
long-term care.
Principal Investigator:
Tamara Sussman, MSW, PhD
Host Institution:
McGill University
Dr. Tamara Sussman is an Associate Professor in the School of Social Work at McGill
University. She obtained her undergraduate and master’s degrees at McGill University, and a
PhD in Social Work at the University of Toronto, followed by a Post-Doctoral Fellowship at the
Murray Alzheimer Research and Education Program at the University of
Waterloo. Dr. Sussman’s program of research focuses on how health services and systems
impact older adults and their family members, including spousal careers’ experiences with
home care; older adults’ and family members’ experiences with the transition into long-term
care; barriers and facilitators to the delivery of effective interventions for depressed older
adults and their care partners; and most recently the needs and experiences of more
marginalized older adults in long-term care such as previously homeless older adults and older
adults identifying as gay, lesbian, bisexual and transgender (LGBT).
Co-Investigators:
Noori Akhtar-Danesh, PhD, McMaster University
Kevin Brazil, PhD, Queen’s University Belfast
Robin Bonifas, PhD, LICSW, Arizona State University
Valérie Bourgeois-Guérin, PhD, OPQ, Université du Québec
à Montréal
Vanina da Bello-Haas, PhD, MSc PT, McMaster University
Marie Earl, PhD, MSc PT, Dalhousie University
Mary Lou Kelley, PhD, MSW, Lakehead University
Lynn McCleary, PhD, RN, Brock University
Marg McKee, PhD, MA, Lakehead University
Alexandra Papaioannou, MSc, MD, McMaster University
Deborah Parker, PhD, RN, University of Queensland
Jenny Ploeg, RN, PhD, McMaster University
Shane Sinclair, PhD, CPCS, University of Calgary
Patricia Strachan, PhD, RN, McMaster University
Genevieve Thompson, PhD RN, University of Manitoba
Lorraine Venturato, PhD, RN, University of Calgary
Abby Wickson-Griffiths, PhD, RN, McMaster University
John You, MSc, MD, McMaster University
Laurel Young, PhD, MTA, Concordia University
Project Contact: Project Leader – Sharon Kaasalainen (kaasal@mcmaster.ca)
This research is funded by TVN (Technology Evaluation in the Elderly Network), which is supported by the Government of Canada through the Networks of Centres of
Excellence (NCE) program. ™ Trademark of TVN. ©TVN, 2013-14. SIG2014-IS (2014 12)