Volunteer Navigators Connecting, Accessing, Resourcing and Engaging (Nav-CARE): Making a Difference in the Lives of Older Persons with Chronic Illness and Their Communities

Wendy Duggleby, PhD, RN Research Chair in Aging and Quality of Life University of Alberta September 26, Thursday, 2019 The goal of Nav-CARE is to improve the quality of life of older persons living at home with illness by providing specially trained volunteers to create connections to community and resources.

2 Acknowledgments Thank you to our funders:

3 Acknowledgments Thank you to our investigative team:

Barbara Pesut, UBC Cheryl Nekolaichuk, University of Alberta Wendy Duggleby, University of Alberta Caroline Nicholson, King’s College London Grace Warner, Dalhousie University Robin Urquhart, Dalhousie University Gail Wideman, Memorial University Laura Cottrell, University of Alberta Konrad Fassbender, University of Alberta Kelli Sullivan, UBC Okanagan Carole Robinson, UBC Okanagan Madeleine Greig, UBC Okanagan Brian O’Connor, UBC Okanagan Megan Stager, UBC Okanagan Sunita Ghosh, University of Alberta Emily Kervin, Dalhousie University Jayna Holroyd-Leduc, University of Calgary Brittany Elliott, University of Alberta Miranda Falk, UBC Okanagan Paxton Bruce, UBC Okanagan

4 Acknowledgments Thank you to our knowledge partners:

Brenda Hooper, Nurse Navigator Pallium Interior Health, BC Greater Trail Hospice Society Northern Health, BC Castlegar Hospice Society BC Hospice Palliative Care Association Nelson and District Hospice Society Alberta Hospice Palliative Care Association North Okanagan Hospice Society BC Cancer Agency Bulkley Valley Hospice Society Alberta Health Services Cranbrook Kimberly Hospice Society Covenant Health Desert Valley Hospice Society Nova Scotia Hospice Palliative Care Central Okanagan Hospice Society Association Olds and District Hospice Society Nova Scotia Health Region Camrose and Killam Hospice Society Canadian Hospice Palliative Care Association

5 Acknowledgments Thank you to our knowledge partners:

Colchester East Hants Hospice Society, McNally House Hospice, Grimsby ON Truro NS Hospice Niagara, St. Catharines ON Shuswap Hospice Society, Salmon Arm BC Stedman Hospice, Brantford ON Abbotsford Hospice Society Dr. Aaron McKim, Portugal Cove NFL Chilliwack Hospice Society Kalein Centre, Nelson BC Mission Hospice Society Hospice Society Victoria Hospice Kerby Centre, Calgary AB Vulcan & Region FCSS Dr. Tom Ward, Victoria BC Prairie Hospice Society, Saskatoon SK

6 Seniors Living at Home with Illness

 Lack of early supportive care. Did you know? One in five  Lack of knowledge of resources. seniors report that they experience emotional distress  Loneliness and isolation. and have difficulty coping day-to-day.*  Multiple complex decisions.  Heavy symptom burden. Loneliness and social isolation are significant predictors of healthcare utilization

*Canadian Institute for Health analysis based on Commonwealth Fund 2016 survey of seniors in 11 countries.

7 The Nav-CARE Program

Navigation: Connecting Accessing Resourcing Engaging The Story of Nav-CARE

Dr. Barbara Pesut University of , Okanagan campus Dr. Wendy Duggleby University of Alberta www.nav-care.ca

Nav-CARE is a registered innovation at The University of British Columbia and The University of Alberta

9 Building the Evidence: The Twelve Year Journey

2017-2020: Scale out to build evidence

2016-2019: Knowledge Translation studies

2015-2016: Curriculum Development 2010-2014 Trial of Nurse Navigator Pilots of nurse/ Competency 2008-2011: volunteer navigation development partnerships Focus groups Ethnography of rural palliative care

10 Nav-Care Site Before he came into my life I was just sleeping all the time and not doing anything. I would cancel my doctors appointments, just not go. And he made me see that the doctors appointments were important. And to be honest with the doctors and not to be afraid to ask for help (Client). Evaluation Nav-CARE is focused on living – living the best you can with whatever you’ve got each day of the year. That has been a real bonus for me from this research. It has led to other connections. (Client)

12 Essential Characteristics for Success  Training of Volunteers and Well- developed mechanisms to support volunteers.  Experienced volunteers willing to dedicate 2-3 hours per week.  Integration with local health and community resources.  Strong champions who are familiar with the goals of Nav-CARE.  Adaptations to Nav-CARE that suit the community context.

13 Nav-CARE Publications

. Duggleby, W., Robinson, C., Kaasalainen, S., Pesut, B., Nekolaichuk, C., MacLeod, R., Keating, N., Santos Salas, A., Hallstrom, L., Fraser, K.D., Williams, A., Swindle, J. & Struthers-Montford, K. (May 26, 2016). Developing Navigation Competencies to Care for Older Rural Adults with Advanced Illness. Canadian Journal on Aging, 35(2), 206-214. doi:10.1017/S0714980816000131

. Duggleby, W., Pesut, B., Cottrell, L., Friesen, L., Sullivan, K., & Warner, G. (Nov 14, 2017) Development, implementation, and evaluation of a curriculum to prepare volunteer navigators to support older persons living with serious illness. American Journal of Hospice and Palliative Medicine. doi:10.1177/1049909117740122.

. Pesut, B., Duggleby, W., Warner, G, Antifeau, E., Hooper, B., Gerig, M., & Sullivan, K. (July 3, 2017). Volunteer navigation partnerships: A compassionate community approach to early palliative care. BMC Palliative Care. doi:10.1186/s12904-017-0210-3

14 “Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.”

Margaret Mead