In 2013, Partnerships for Native Health conducted a needs assessment by interviewing community healthcare workers who serve partner tribes throughout Washington State. Approximately 80% of those interviewed expressed needs for a program of support for cancer survivors, as well as training for program facilitators. To address these needs, staff at our organization collaborated with Dr. Rachel Ceballos of the Fred Hutchinson Cancer Research Center to develop a culturally relevant survivorship program that includes a curriculum for support groups. These materials were tailored for American Indians and Alaska Natives from a program that Dr. Ceballos originally created for Latino communities in eastern Washington.
The resulting program, Staying in the Circle of Life, addresses the unique issues faced by American Indian and Alaska Native cancer survivors as they seek support after treatment and navigate the healthcare system. The curriculum consists of six modules on the following topics: social support, stress management, physical activity, nutrition, medical advocacy, body image and intimacy, end-of-life planning, and family health history. The program is structured to facilitate connection and social support. It offers opportunities for group discussion, hands-on activities, and other bonding exercises for participants in the support group.
We partnered with four Native communities to evaluate Staying in the Circle of Life. Participants in Montana, Alaska, South Dakota, and New York found the curriculum to be immensely informative and helpful to their healing journey after cancer. Data from the program evaluation are currently undergoing analysis by our team at Partnerships for Native Health.
Facilitators offered feedback on their experience of the program. One noted, “[The participants] really enjoyed how interactive the sessions are. They felt it was personal, and felt comfortable sharing their own personal experiences in the group.”
Another remarked that there is a culturally rooted aversion to discussing illness and death in many Native communities. As she said, “They loved all the information provided and actually gained a lot by discussing this topic out loud, which as you know is a major taboo.” Referring to one of the program components, she continued, “The Five Wishes booklet was a perfect guide to working through their needs and even being comfortable and willing to have this discussion [about the end of life] with their loved ones.”
Another observed, “These women have basically gone through their recovery alone. This group provided a major foundation for support – and being able to connect with others that have been through similar paths was extremely valuable.”
Participants in the support groups developed strong bonds with each other. As one facilitator put it, “They want to stay in contact and continue to remain connected with each other as well as sustain continual support. This is what we needed for our community, and although it was a small group, they were ever so grateful. We are excited to see the results of this study across the board, and for sure to implement some changes.”
One of the six modules was designed to help participants navigate the complexities of their local health systems. This one had special resonance for many group members. As a facilitator observed, “The participants found the Medical Advocacy module to be especially helpful and felt more empowered to interact with their healthcare providers after this meeting.”
All the materials for Staying in the Circle of Life, including the six modules and facilitator training videos, can be found here: http://www.p4nh.org/education-outreach/cancer-survivorship-curriculum/. Questions about the curriculum can be directed to Meghan Jernigan (firstname.lastname@example.org), the Project Coordinator for Native People for Cancer Control.