”We need to get loud about cancer, our voices need to be heard.”
In the fiscal year 2016-17, and in conjunction with the Department of Health and Social Services the NWT Seniors’ Society hired a part time Program Co-Ordinator to accomplish the following:
- Identify what, if any, community based support services for those affected by cancer exist in the communities in the NWT;
- Create a directory of these services;
- Contact individuals affected by cancer in each community to help inform a gap analysis regarding what individuals would find most useful in current and future community based support initiatives; and
- Use this information as well as a scan of the literature to make recommendations for future programming.
Information was gathered over an 8 week period through:
- Distributing knowledge of our project and encouraging participation through dissemination of information at the community level;
- Contacting Health Care Professionals (HCP’s) and Community Health Representatives (CHR’s);
- Conducting individual interviews with people affected by cancer over the phone or in-person;
- One 15 person focus group; and
- Individual discussions with community champions or organizational leaders who deal with cancer in some way, shape, or form.
These efforts led to direct contact being established with, and information collected for this report, from 80 individuals spanning all administrative districts in the NWT.
What we Found
Outside of Yellowknife, Fort Good Hope, and Fort Smith no community based support services exist in the communities to help those affected by cancer. Healthcare professionals, family members, and concerned individuals and organizations in the community are stepping in to offer homecare, educational outreach, and general assistance to individuals along their cancer journey. This help is often governed and limited by family/community dynamics, time, and resources available. Participants expressed gratitude for these formal and informal services offered, but universally agreed that additional, sustainable, and relevant community based support services are needed. These services were seen as:
- Offering inclusive services;
- Providing a wide array of activities;
- Having good partnerships and administration;
- Remain relevant by adapting to changing participant needs;
- Offer ongoing communication regarding services available; and
- Remaining accessible in terms of location and time of services offered.
The creation of community based support services with the above qualities were seen as being hampered by several factors including:
- Privacy issues hampering putting services and individuals in-touch with one another;
- Insufficient and/or inflexible funding;
- Lack of resources in communities;
- Difficulty in identifying leaders;
- Lack of volunteers/volunteerism in programs;
- Difficulty in offering engaging incentives and activities;
- Stigma associated with cancer
- Comorbidity of health issues and confidentiality; and
- General lack of ongoing support to service providers.
Participants further noted that the above format, challenges, and solutions involving community based support services for those affected by cancer were well known already. This was supported through a literature scan of challenges and successes concerning community based support services. Participants strongly expressed that the time for further discussion was at an end regarding the gaps and challenges faced, and that a plan of action be put in motion to move service provision forward.
The NWT Seniors’ Society has secured funding for a second phase of Supporting Cancer Projects in our Communities. Utilizing the findings discussed here the NWT Seniors’ Society, in partnership with Ingamo Hall Friendship Center in Inuvik, will be working in 2017-2018 towards establishing a community based support service for those affected by cancer in Inuvik. The goal being to provide services built by the community and for the community which meet in some way, shape, or form the needs of those affected indirectly or directly by cancer.