Overview of the Living the Journey Cancer Survivor Care Plan Demonstration Project

Background

The NWT Breast Health/Breast Cancer Action Group (Action Group) is a long-standing NWT registered society and charitable organization, which has developed many resources and programs to raise public awareness of breast health and provide information, services and support to individuals affected by breast cancer in the NWT.

In 2013-2014 the Action Group and project consultants Lutra Associates Ltd. carried out a comprehensive needs assessment[1] with 110 individuals – NWT breast cancer survivors, health care providers, caregivers and others – to map the NWT breast cancer journey and improve the response to individuals and families affected by breast cancer. It was recognized that this work would shed light on the response to all cancers in the territory. Of the 18 recommendations that emerged from this research, the Action Group and its partners chose to focus on three priorities, including:  Develop and implement breast cancer aftercare that includes aftercare (survivor care) plans and access to counselling and the needed resources for positive lifestyle changes.

During 2014-2015 the Action Group undertook partnerships and activities in Fort Good Hope and Fort Smith to develop a model for survivor care planning for individuals who are undergoing or have completed treatment for cancer.  Information-gathering, consultations, materials development and community engagement activities were carried out by the project consultants, in collaboration with two project working groups, other partners, the Action Group and agencies, cancer survivors and other individuals in both communities.

Living the Journey:  Survivor Care Plan Demonstration Project (2015-2017)

On October1, 2015, the Action Group, regional and community partners began the Living the Journey project, a 1.5-year demonstration project to pilot and evaluate a cancer survivor care program in the NWT.  An individual is considered to be a cancer survivor from the time of diagnosis through the balance of his/her life.

The goal of Living the Journey is to improve wellness and quality of life for survivors of any form of cancer and their families.  Specifically, the Living the Journey project is piloting cancer Survivor Care Plans and developing community cancer survivorship support services in the two site communities:  Fort Good Hope and Fort Smith.  There is a Community Coordinator and Community Advisory Committee at each site to guide the project, with overall coordination by Lutra Associates under the direction of the Action Group and other partners.

Survivor Care Plans (SCPs) have been piloted in other areas of Canada as a tool to help ease the transition from active cancer treatment to post treatment.  The Living the Journey project will, however, pilot SCPs beginning at diagnosis.  The SCP provides cancer survivors with individualized information including their complete cancer history, medical follow-up plan, and care team contacts.  SCPs also include information on managing longer term side effects of treatment, stress and emotional issues, community resources, and guidelines for healthy living (healthy diet and weight, physical activity and smoking cessation).  Through the SCP the survivor is supported to identify their own survivorship goals and a plan for achieving them.

Key project activities include: 

  • raising community awareness of cancer survivorship and the project
  • outreach and orientation with cancer survivors and their families to invite their participation
  • annual training workshops for health care providers and other community support services and peers support volunteers on the impacts of cancer, survivorship, assisting survivors to develop their SCP and providing needed services, support and information, including traditional Aboriginal practices
  • collaboration with community support services, peer support volunteers and health care providers to pilot the SCPs and incorporate community and Indigenous knowledge and experience in developing services for survivors and their families
  • monitoring and evaluation of the demonstration project results and outcomes.

Anticipated project outcomes include

  • a survivorship program model, tools and practices ready to be implemented across the NWT.
  • the tested SCP as an important tool to engage and empower cancer survivors in their own health and wellness, and link them to trained community support resources
  • improved wellness and quality of life for cancer survivors and their families, reduced anxiety, access to appropriate services, healthier lifestyles and a reduction in their risk factors for cancer recurrence or for other chronic diseases.

Project partners are the Sahtu and Fort Smith Health and Social Services Authorities, Goba Group in Fort Good Hope, Cancer Support Group in Fort Smith, and a network of cancer survivors, physicians, advocates and others.  The Department of Health and Social Services, United Way NWT, Dominion Diamond Corporation and many other organizations have financially supported the project.

For more information please contact us.

[1] NWT Breast Cancer Journeys Project Final Report.  Lutra Associates, February 2014, 118 pp.  Available at www.breasthealthnwt.ca

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