dialogue and storywork in support of first nations, …...dialogue & storywork project team –...
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DIALOGUE AND STORYWORK IN SUPPORT OF FIRST NATIONS, INUIT, AND MÉTIS CANCER PATIENTS THROUGHOUT ONCOLOGY AND PRIMARY CARE TRANSITION EXPERIENCES
Presenters: Daniel Clarke, Department of Health and Social Services Government of the Northwest Territories Doris Warner, Saint Elizabeth First Nations, Inuit and Métis Program Robynn Muldoe, Gitxsan Health Funder: Canadian Partnership Against Cancer
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PRESENTATION OBJECTIVES
• To describe the storywork and brokered dialogue methodology, and it’s contribution to culturally safe project implementation;
• To share lessons learned in relationship and partnership building between government, community champions, health care providers, and communities for improved health outcomes and experiences for communities;
• To showcase portions of the audiovisual resources developed through this project, and discuss the resource’s utility and relevance in their respective contexts.
PROJECT PARTNERS
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Project Co-leads
Dr. André CorriveauChief Public Health Officer
GNWT-DHSS
Brenda HubleyExecutive Director,
Community Oncology and Provincial Practices
CancerControl - AHSSupport
Daniel ClarkeProject Manager, Dialogue &
Storywork ProjectGNWT-DHSS
GNWT-DHSS
Crystal MilliganManager, Strategic Cancer
Ini tiativesGNWT-DHSS
Sabrina BroadheadDirector, Aboriginal Health
& Community WellnessGNWT - DHSS
Reporting
Support
Direction/Advice
Accountable
Saint Elizabeth
Tracy ScottProgram Lead, First Nations,
Inuit and Metis ProgramSaint Elizabeth - MB
Paul HolyokeDirector
Sa int Elizabeth - ON
Doris WarnerEngagement Liaison,
Fi rs t Nations, Inuit and Metis Program
Saint Elizabeth - ON
Jessie LeitaoSenior Research
Administrative AssistantSa int Elizabeth - ON
Grace LuiResearch AssociateSa int Elizabeth - ON
CancerCare Manitoba
Kali LearyDirector
FNIM Cancer Control
VacantProgram Analyst
FNIM Cancer Control
BC Cancer Agency
Preston GunoProvincial Director,
Aboriginal Cancer CareCentre for the North
FN Information Governance Centre
Bonnie HealyOperations Manager
Tsuu T’ina, AB
Amanda MeawasigeHealth Policy
Analyst/ResearcherAssembly of Manitoba
Chiefs
Dialogue & Storywork Project Team – Organizational Chart
Reporting Support/Direction
Alberta Health Services
Warren MichaelProvincial Coordinator, First
Nations, Inuit and Métis, Supportive Care & Patient
Experience
Vivian Collacutt Director, Supportive Care &
Patient Experience, Community Oncology,
CancerControl
Project Team Support
Patricia KyleCEO, Sahtu HSS Authority
Norman Wells, NT
Sharon ShirtVideographer ABSierra Ventures
Sean ParenteauVideographer MB
StrongFront TV
Elizabeth HuynhProjects and Eva luation
CoodinatorFNIM Cancer Control
PROJECT APPROACH
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Beginning in 2014 the project rolled out the first of three phases. Phase One is focused on building trusting relationships with participants Phase Two used storytelling and dialogue in safe environments to produce audiovisual and written support resources and tools Phase Three focuses on the distribution of the support resources and tools
BROKERED DIALOGUE METHODOLOGY
Cancer patients/survivors share their stories on video
Doctors and nurses respond to the stories on video
Cancer patients/survivors respond to doctors and nurses on video
All videos are used to make cancer journey videos and support tools for cancer patients, doctors and nurses
Participatory editing takes place with all participants at all stages of the project
FINAL PRODUCT
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PARTICIPATING COMMUNITIES
Health Care Professionals Prince George, BC Terrace, BC Hazelton, BC Edmonton, AB Calgary, AB Inuvik, NT Yellowknife, NT Winnipeg, MB
Cancer Patients/Survivors Gitxsan Territory, BC Nisga’a Territory, BC Aklavik, NT Fort Good Hope, NT Fort Resolution, NT Alexander First Nation, AB Fort Chipewyan, AB Lac Brochet, MB
Guidance received from partners was vital to ensure community protocols and processes were respected.
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BRITISH COLUMBIA COMMUNITIES
There are approximately 200 First Nations in British Columbia. In the northern region of British Columbia alone, there are 54 First Nations.
Gitxsan Nation: North Region Partners: Gitxsan Health Society Communities involved: Gitxsan Nation (Sik-edakh, Kispiox, Gitanmaax, Hadwilget) Champion: Robynn Muldoe Nisga’a Nation: North Region Partners: Nisga’a Valley Health Communities involved: Gitlaxt'aamiks (formerly New Aiyansh) Champion: Maggie Patsey Prince George Partners: BC Cancer Agency for the North Terrace Partners: Mills Memorial Hospital Hazelton Partners: Wrinch Memorial Hospital
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ALBERTA COMMUNITIES
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Chipewyan Prairie First Nation Partners: Chipewyan Prairie First Nation Health Centre Champion: Elsie LeMaigre Alexander First Nation Partners: Alexander Health Centre, Confederacy of Treaty 6 Champion: Jerome Yellowdirt Edmonton Partners: Alberta Health Services, Cross Cancer Institute Calgary Partners: Alberta Health Services, Tom Baker Cancer Centre
There are 48 First Nation communities and 8 Métis settlements in Alberta, some of which do not have year-round road access.
NORTHWEST TERRITORIES COMMUNITIES
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There are 33 communities in the Northwest Territories. 26 of these communities are considered small and isolated; many do not have year-round road access.
Aklavik: Inuvialuit Settlement Region & Gwich'in Settlement Region Communities involved: Aklavik and Inuvik Champions: Gladys Edwards Partners: Inuvik Regional Hospital; Suzie Husky Health Centre; Inuvialuit Regional Corporation Fort Good Hope: Sahtu Region (Dene First Nation) Community: Fort Good Hope Champions: Melinda Laboucan Partners: Sahtu Health and Social Services Authority; K’asho Got’ine Community Council South Slave Region (Deninu Kue First Nation, Métis and Inuit) Community: Fort Resolution Champions: Tammy Hunter-McKay Partners: Deninu Kue Health Centre; Yellowknife Health and Social Services Authority
MANITOBA COMMUNITIES
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There are 63 First Nation communities in Manitoba. The majority of Métis people in Manitoba live in Winnipeg. There are approximately 600 Inuit people living in Manitoba.
Northern Manitoba Communities involved: Northlands Denesuline First Nation (Lac Brochet) Partners: NDFN Health Division Winnipeg Partners: CancerCare Manitoba Oncology, Uniting Primary Care & Oncology (UPCON) Champions: Dr. Mark Kristjanson, UPCON Medical Lead; Dr. Saranya Kakumanu, UPP Physician Champion
OUTCOMES
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RELATIONSHIP BUILDING Indigenous Communities
• 27 community participants from 8 different communities
• Participants have had an opportunity to tell their stories to oncologists and primary care workers
• Participants have had the opportunity to respond to oncologists and primary care workers
• Story themes highlight transition gaps
• Demonstrated respect for health care provider perspective
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RELATIONSHIP BUILDING Primary and Oncology Health Care Providers
• 15 health care provider participants
• Health care providers view and respond to the patient stories, sharing their viewpoints and insight
• Health care providers indicate that the brokered dialogue is impactful
• Demonstrated empathy and compassion for community participants
COMMUNITY ENGAGEMENT
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Each project partner connected with their networks within communities to identify community champions.
The role of the community champion is vital to the engagement process.
• Advise on community protocols
• Work worth leadership where appropriate
• Advertise and connect with participants
• Coordinate logistics
In each jurisdiction passionate community champions stepped forward to support because of their belief in that communities wanted opportunities to share their cancer stories.
COMMUNITY ENGAGEMENT GITXSAN TERRITORY
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December, 2014
• Open invitation to community members to come and learn about the project.
• 8 community members came forward to share their stories on video
September, 2015
• Participant video editing/validation
January, 2016
• Primary care and Oncology Interviews
June, 2016
• Participant Video Responses to PCP and Oncology Interviews
September, 2016
• Community validation of rough cut videos
COMMUNITY IMPACT – GITXSAN TERRITORY
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Building relationships with trusted partners to help address the fears and need for community education and awareness on cancer.
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VIDEO STORIES AND DIALOGUE
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EMERGING THEMES
Traditional Wellness And Medicines
Confusion and Changing Perspectives
Emotional Strain
Communication
Storywork Themes
Companionship and Travel
Togetherness and Support Networks
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RESOURCE DEVELOPMENT Theming
• Find central ideas that have been expressed by a storyteller
• Repeat this for all interviews to find related ideas
• Related items were categorized under six major themes
Post production is being conducted by Strongfront.tv
• Meaningful videos are being created from the themes
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PLANS FOR SUSTAINABILITY AND SPREAD Transition Support Resource
• The resource will be piloted to assess its effectiveness and inform any necessary changes
• Distribution throughout Canada will help create awareness among primary and oncology care providers of the themes illustrated in the resource
• Primary and oncology health care providers will be oriented in the use of the resource
LESSONS LEARNED
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The opportunity to tell stories and to hear them has been powerful
• Affirming
• Informing
• Reforming
The relationships that have been built are important, and all take time, patience and effort:
• With project partners
• Project partners with communities
• Communities with cancer centres
• Cancer centres with communities
• People within communities (experience of cancer)
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QUESTIONS FOR REFLECTION 1. What parts of the process of the Storywork and Dialogues do
you think are the most valuable?
2. Do you think that these transition support resources are something that you could use and promote?
3. How do you think they would be the most useful?
4. Would you be wiling to share your experience of using the resources?
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ACKNOWLEDGEMENTS
This project would not be possible without the bravery and openness of the cancer patients and survivors and health care providers who shared their personal stories and beliefs about cancer. We especially acknowledge the those that have passed on since sharing their stories. It is our collective honour to carry your stories forward so that others may learn from your experiences. We would also like to express our greatest appreciation of all the communities and organizations that made this work possible.
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PROJECT TEAM André Corriveau Co-Lead Chief Public Health Officer Department of Health and Social Services Government of the Northwest Territories [email protected] Brenda Hubley Co-Lead Executive Director, Community Oncology and Provincial Practices, CancerControl Alberta Alberta Health Services [email protected] Daniel Clarke/Christina Leeson (previous) Project Manager Cancer Projects Officer Aboriginal Health and Community Wellness Government of the Northwest Territories [email protected] Kali Leary Director, First Nations, Métis & Inuit Cancer Control CancerCare Manitoba [email protected] Preston Guno Provincial Director, Indigenous Cancer Care BC Cancer Agency-Centre for the North [email protected] Amanda Meawasige Health Policy Analyst/Researcher Assembly of Manitoba Chiefs [email protected]
Vivian Collacutt Director, Supportive Care & Patient Experience Community Oncology, CancerControl Alberta Alberta Health Services [email protected] Warren Michael/Michelle Voyageur (previous) Provincial Coordinator, First Nations, Inuit and Métis, Supportive Care & Patient Experience, Alberta Health Services [email protected] Paul Holyoke Director Saint Elizabeth Research Centre [email protected] Doris Warner Engagement Liaison, First Nations, Inuit and Métis Program Saint Elizabeth Health Care [email protected] Tracy Scott Program Lead, First Nations, Inuit and Métis Program Saint Elizabeth Health Care [email protected] Grace Lui/Justine Giosa (previous) Research Associate Saint Elizabeth Research Centre [email protected] Bonnie Healy Operations Manager Alberta First Nations Information Governance Centre [email protected]
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THANK YOU
Doris Warner Engagement Liaison,
Saint Elizabeth First Nations, Inuit and Métis Program [email protected]
1-647-462-8614
Daniel Clarke Cancer Projects Officer, GNWT
[email protected] 1-867-767-9064 ext. 49242
Robynn Muldoe CH, LPN Gitxsan Health Society
[email protected] Tel: (250) 842-6236 Ext:28