Resident Family Partner Engagement: From Tokenism to Meaningful Engagement

Roslyn Compton, Marilyn Barlow, Marlene Moorman, Katie Ottley,
Candace Skrapek, & Allison Cammer

Wednesday, November 18 9:00 - 10:00

Moderator: Chris Plishka
Maximum Capacity: 30 participants

Workshop Description: 

A critical component of patient-oriented research is the authentic engagement of patient partners with lived experiences of the healthcare system across the health research continuum. Dr. Roslyn Compton and her research team, who are studying the experiences of long-term care residents and their families, refer to those with lived experience as Resident Family Partners. Resident Family Partners have provided valuable input into crafting more relevant research questions, using accessible language and understanding how residents or their family members might interpret questions being asked during data collection. They also share unique perspectives that lead to well-rounded interpretations of data and help to share what is learned with others who can benefit from the research findings.

Patient-oriented research benefits from a relational approach and the lived experience of all team members. Sometimes patient-oriented research does not live up to its potential because patients are not meaningfully engaged in the research process. In this workshop you will have the opportunity to learn from the stories of the presenters engaged in patient orientated research.

Workshop learning outcomes:

  • To identify the complexity of patient-oriented research using a case study

  • To experience hands-on application of the PORLET tool to help build capacity

  • To maximize the role of relationships in patient-oriented research

Facilitator Biographies:
Roslyn M. Compton received her PhD in nursing from the University of Alberta and is currently an Assistant Professor in the College of Nursing, at the University of Saskatchewan, Saskatoon. Her research interests include older adults, aging-in-place, independence, narrative gerontology, and narrative care. Roslyn’s work recognizes the importance of understanding older adults’ experiences in relation to place and identity, and how social, cultural, and institutional narratives influence the stories told. Roslyn’s research always uses a patient-oriented approach to understand the experiences of older adults and their family caregivers concerning quality of life, interprofessional care, family presence, and care across the continuum.

Marilyn Barlow Registered Nurse retired from Saskatchewan Health Authority after 40 years of working in direct care. After becoming a patient and family advisor, Marilyn was introduced to the world of research and is currently a Research Assistant out of the College of Nursing at the University of Saskatchewan. Marilyn currently sit on the Saskatchewan Registered Nurses Association Council as a member at large.  She is the daughter of a independent older adult living in her own home, mother of two and grand parent of two young adults. Marilyn has been a volunteer, a union leader, and a foster parent.

Marlene Moorman is a retired RN who worked the majority of her career in Obstetrics and for a couple of years, in long-term care. In the past few years, Marlene's mother was living in long-term care until she passed away. More recently, Marlene's father moved into long-term care. Marlene has a strong desire to support quality of life and family involvement within long-term care.

Katherine (Katie) Ottley is a Ph.D. student in Psychology at the University of Saskatchewan. Her research interests include end of life care and decision making, as well as bereavement experiences throughout adulthood. Katie works on patient-orientated research as a member of Dr. Compton’s research team and as a SK LTC Network member. These connections also inform her doctoral dissertation.  Patient-oriented research is important to Katie because her lived experience has taught her that the people who best understand a situation are those who are living or have lived it.

Candace Skrapek has been a key champion for patient-oriented research for many years. She advocates for improvements to design of the health system.  Candace lives with two potentially life-ending conditions; lung cancer and idiopathic pancreatitis, both of which are highly stigmatized and under-researched related to their burden on the patient and the health system.  It is this experience that grounds her belief that health research must focus on health outcomes based on issues that are clearly identified by patients and families. Candace is the co-chair of the SCPOR Patient & Family Advisory Council. 

Allison Cammer is an Assistant Professor in the College of Pharmacy and Nutrition at the University of Saskatchewan. Allison has been a Registered Dietitian for over 20 years. She completed a MSc in Community Health and Epidemiology and PhD in Nutrition. In addition to being a member of Dr. Compton’s POR team, she is a member of the Rural Dementia Action Research team, the Rural and Remote Memory Clinic, and the Saskatchewan Long-term Care Network. Allison’s research focuses on older adult nutrition, dementia, care-partners, long-term care, and nutrition care at end of life.