iCAN-ACP Long-Term Care

 

Summary

As a component of a larger study focused on increasing the uptake, impact, and access to ACP for frail elderly Canadians across the continuum of care, this proposed study will focus on tailoring, implementing, and evaluating a multi-faceted suite of ACP tools in four long-term care (LTC) settings in southern Ontario. Although death is a commonplace in LTC, palliative approaches to care, including ACP, are still rare in LTC environments in Canada and abroad. This proposed ACP focused study builds on our previous work which aimed at refining, implementing and evaluating a five component evidence-informed palliative program called Strengthening a Palliative Approach in Long-Term Care (SPA-LTC). The previous study was approved by REB at McGill University: 1) REB #243-1214; Title: The Implementation and Evaluation of a Palliative Care Intervention in Long-Term Care: Focus Group Data Pre and Post Implementation; and 2) REB #281-1214; Title: The implementation and evaluation of a palliative care intervention in long-term care. 

While the SPA-LTC program addresses many facets of a palliative approach to care, it does not include tools and mechanisms to support ACP within a LTC environment. Yet evidence is clear, including data from 18 focus groups with 117 participants in the SPA-LTC project, that while staff in LTC view ACP as important they express discomfort around when and how to engage in pre-emptive EOL discussions (Sussman et al., In Press). As a result, many residents are denied opportunities to participate in their own EOL planning, resulting in excessive use of hospital transfers and invasive medical care at EOL.  In this Transformative Grant, we will develop, implement and test an ACP component in the four LTC settings we have been working with for two years. 

 

Our work will be guided by the Knowledge-to-Action Framework for Knowledge Translation (KT) to answer the following research questions:

 

  1. What are stakeholders’ (residents’, families’, staff’s ) perceptions about acceptability, usability, and barriers and facilitators to implementation of a multi-faceted suite of ACP tools in long-term care? (Phase 1) 
  2. What is the impact of implementing a multi-faceted suite of ACP tools in LTC on engagement in ACP, receipt of goal consistent care, satisfaction with EOL care, and healthcare resource use (e.g. unnecessary hospitalization in the last one-six months of life)? (Phase 2) 
  3. What additional refinements are needed to maximize uptake of our multi-faceted suite of ACP tools across LTC settings in Canada? (Phase 3) 

 

Principal Investigators:

Sharon Kaasalainen, PhD, RN:  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 Honorary 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.

Tamara Sussman, PhD, MSW: 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;  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) and most recently improving the delivery of palliative care in long-term care

 

Co-Investigators:

Valerie Bourgeois-Guérin is a clinical psychologist and professor in the Psychology Department of University of Quebec in Montreal (UQAM).  Her profound interest for grief and end-of-life issues motivated her to complete a Masters in Social Intervention with a Specialization in Death Studies, followed by a Doctorate in Psychology, both at the University of Quebec in Montreal (UQAM).  She has been involved for close to 15 years in diverse qualitative research projects about seniors’ experiences related to exclusion, mental health, end-of-life and grief.  She is a researcher-member of the Quebec Network for Research on Aging (RQRV), the Centre for Research and Expertise in Social Gerontology (CREGES), the Research Chair on Aging and Diversity (Chaire de recherche sur le vieillissement et la diversité citoyenne) and the Aging, Social Exclusions and Solidarities (Vieillissement, Exclusions Sociales et Solidarités - VIES) team.  She has written several articles and presented numerous conferences on topics related to grief, suffering, end-of-life, communication, as well as the body and temporality as they are experienced by seniors. Her clinical work in private practice with seniors who are bereaved and at the end-of-life stage enhances her reflections on those fundamental issues.

Patrick Durivage, social worker, holds a Master in Social Work and a bachelor in Psychology from the University of Montreal. Practitioner and researcher, he is the co-author of the guide "Intervene with the Elderly in Palliative Care; a Reflexive Guide on Psychosocial Support at Home" (published in 2012 and available only in French). In addition to his involvement in research in Social Gerontology (CREGES), he continues to work in the home care department at CLSC René-Cassin of the CIUSSS Central-West of Montréal which serves a multicultural population.  Under the Act Respecting End-of-Life Care, he was nominated at the Quebec Commission on end-of-life care.  Its mandate is to examine all matters relating to end-of-life care and to oversee the application of specific requirements relating to medical aid in dying.

Paulette Hunter, Ph.D., R.D. Psych., is an Associate Professor in the Department of Psychology at St. Thomas More College, University of Saskatchewan. Trained as a clinical psychologist, her work emphasizes person-centred and palliative approaches to dementia care in Canada’s long-term care system. She teaches on the topics of psychology, aging, and applied ethics.

Lynn McCleary RN, PhD, is a mental health and gerontological nurse. She is an Associate Professor in the Department of Nursing, Faculty of Applied Health Sciences, Brock University and former Past President of the Canadian Gerontological Nursing Association. Her research focusses on dementia services, transitions in dementia care and dementia caregiving. She is engaged in improving gerontology and geriatrics education in the health professions. 

Dr. Patricia Strachan is an Associate Professor in the School of Nursing. Following her doctoral studies she completed a Post-Doctoral Research Fellowship with the Heart and Stroke Foundation of Ontario. She was a post-doctoral trainee with the FUTURE Program for Cardiovascular Nurse Scientists, a CIHR Strategic Training Initiative aimed to develop capacity of cardiovascular nurse scientists in Canada. Her clinical background is in emergency, intensive care and adult medical-surgical nursing. Dr. Strachan is a member of the Canadian Frailty Network (CFN) Training and Education committee, a Canadian National Center of Excellence.  Dr. Strachan’s research has broadly focused on patients with advanced chronic illness (specifically heart failure) and associated communication issues related to end-of-life planning and care. She is currently applying complexity science to research related to these concepts and in particular, an initiative to integrate a palliative approach to heart failure care. Dr. Strachan is interested in supporting the nurse’s role on inter-professional teams in relation to communication for end-of-life planning and care for this patient population.

Dr. Genevieve Thompson is an Associate Professor in the College of Nursing, Rady Faculty of Health Sciences at the University of Manitoba. She holds research affiliations with the Centre on Aging at the University of Manitoba, and with Riverview Health Centre. Dr. Thompson has a program of research focused on personhood, dignity, and quality care for older adults living and dying in long-term care (LTC). Her studies have systematically explored issues related to dignity, distress, palliative approaches to end-of-life care, or quality care for older adults living within the LTC environments. Dr. Thompson has been the recipient of several awards in recognition of her contributions to research including the Excellence in Professional Nursing Award (Nursing Research) from the College of Registered Nurses of Manitoba and the Canadian Association for Nursing Research Outstanding New Investigator Award.  Recently, she received the 2015 University of Manitoba RH Award (Health Sciences), awarded to two top early career researchers in health science for innovation and impactful research. Dr. Thompson holds a Canadian Institutes of Health Research New Investigator Award (2013-2018) that is focused on the care of older adults near the end of life, particularly those who have a diagnosis of dementia. 

Abigail Wickson- Griffiths’ professional practice and academic background has centred on geriatric nursing as a result of her specific passion for improving the quality of care for older adults, especially those with dementia. At Ryerson University, Abby's graduate thesis focused on describing the mealtime strategies that people with dementia and their caregivers use while living in the community. For her doctoral thesis work at McMaster University, she evaluated the implementation of an advance care planning program in the long-term care home setting. Her subsequent fellowship work evaluated the Palliative Performance Scale use in the long-term care home setting. At present, she is working in the Faculty of Nursing at the University of Regina, and is also the Gerontology Program Coordinator. Currently, Abby is the co-site lead for the Strengthening a Palliative Approach in Long-Term Care study. Her primary interests are palliative and end-of-life care, dementia care, long-term care and advance practice nursing.

Dr Lorraine Venturato is an Associate Professor at the University of Calgary, and holds the Faculty of Nursing Research Chair in Gerontology. She also co-leads the Hotchkiss Brain Institute’s Dementia and Cognitive Impairment Neuro-Team. Dr Venturato’s work focuses on understanding quality of care and quality of life for older people – particularly older people living with dementia - and emphases partnerships between practice, research and education. 

 

Staff:

Emily Di Sante, MA is a Research Project Coordinator working with the Principal Investigators on the iCAN-ACP Project. Emily obtained her Bachelor of Arts from Guelph University, a Master’s of Arts in Political Science from McMaster University and a certificate in Project Management from the University of Toronto. Her research interests include advance care planning and palliative care in long-term care, knowledge translation, evaluation, project management, tobacco control and public health.

Olivia Virag is a Research Project Coordinator working with the Principal Investigators on the iCAN-ACP Project. Olivia has an Honours Bachelors of Arts in Health Studies with a minor in Business Studies from McMaster University. Olivia has experience coordinating research projects with Hamilton Health Sciences (Hamilton, ON), the Hospital for Sick Children (Toronto, ON) and McMaster and McGill Universities. Her interests include working with research focused on older adults in the fields of long-term care, palliative care, advance care planning, and rehabilitation sciences.

Courtney Hill, RN, BScN graduated from McMaster in 2015 with a Bachelor of Science in Nursing degree. She has since then been working as a full-time research assistant in the School of Nursing. Through her contribution to various research projects, Courtney has expanded her knowledge in palliative care and end-of-life planning for older adults in long-term care and improving quality of life for older adults with advanced stage dementia. Courtney plans to further her understanding in such areas through continuous learning and involvement in future research.

Alyssa Te, RN, BScN graduated with a BScN from the McMaster University in 2017 and currently works as a research assistant under the McMaster School of Nursing. Her interests in research include improving quality of life and palliative and end of life care planning for older adults within long-term care settings. She has clinical experience in bedside palliative care and concurrently works in acute medicine and surgery settings. She intends to further her work and knowledge about the specific needs of older adults in various settings with further education in gerontology and medicine.

Devora Greenspon is a member of our Advisory Team as a Resident Representative for the Long-term Care Sector. Devora initially became involved as a member of our Palliative Care Champion Team 3 years ago at one of our participating LTC homes in which she resides. Devora is also part of the Residents Council Leadership Team at her home and part of the Executive Team of the Ontario Residents Council. Devora’s interests include palliative care, re-development and issues surrounding residents in LTC.

Students:

Pamela Durepos, RN, PhD Student is a doctoral nursing student at McMaster in the second year of her program. She graduated from McMaster with her Master's of Science degree in 2014 and has been employed at Hamilton Health Sciences Corporation in the Neurotrauma Intensive Care Unit for the past 13 years. Pamela is supervised by Dr. Kaasalainen and has been working with her for the past three years. Pamela is involved in curriculum development at the undergraduate and graduate levels, particularly related to palliative care. In her MSc, Pamela performed a qualitative study of an education/support program for family caregivers of persons with advanced dementia at end of life. Building upon findings from that study, Pamela's doctoral work focuses on exploring and measuring death preparedness of caregivers in dementia.

Pereya Kulasegaram, RN is a Master of Science in Nursing (MScN) student in her second year at McMaster University. She is supervised by Dr. Sharon Kaasalainen and takes part in a variety of research projects and activities led by Dr. Kaasalainen. Pereya graduated form McMaster University in 2014 with a Bachelor of Science in Nursing degree and is currently employed as a registered nurse at Oakville Trafalgar Memorial Hospital, as well as Ian Anderson House. Her employment has allowed her to gain significant clinical experience in the areas of gastrointestinal medicine and palliative care.  Pereya’s research interest is focused on palliative and end-of-life care. Her current MScN research work explores the end-of-life care experience of South Asian informal caregivers.

Harveer Punia, RN, BScN, MScN Student graduated with a Bachelor of Science in Nursing from McMaster University in 2017 and is currently a Master of Science in Nursing student at McMaster University. She has been working as a research assistant in the School of Nursing at McMaster University and School of Social Work at McGill University since July 2016. She has had clinical placements in a diverse range of settings from acute care to community healthcare. Her combined experiences gave her a first-hand insight into many issues that exist in the health systems providing end-of-life care. She intends to explore these issues further by gaining clinical experience in a palliative care setting while also focusing her current research work and education in this area. Through her clinical and research work she hopes to ultimately expand her knowledge to improve quality of life for residents, and their families residing in long-term care homes.

Gregory Vandenberg is a fourth-year undergraduate student at McMaster University currently working part-time as a research assistant in the School of Nursing. He has been involved in multiple projects with the School of Nursing since September 2015. He is a candidate to receive his Bachelor of Science (Honours) with a specialization in biology and a minor in psychology from McMaster University in May 2018. He has hopes to continue research in graduate school on the topics of neuroscience and neuropathology.

Stephanie Dephoure is a second-year undergraduate student at McMaster University in the Bachelor of Health Sciences (Honours) program. She has been working part-time as a research assistant under the McMaster School of Nursing since the spring of 2017. Through her involvement in a variety of projects, she hopes to expand her knowledge of palliative care for older adults in long-term care homes, improving quality of life, and advance care planning for older adults. 

 

 

 

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