FormalPara Key Points

  • American Indian and Alaska Native cancer survivors need integrated and expanded services, such as support circles.

  • Denver American Indian Cancer Survivors Circle was founded in 2001. It weaves traditional knowledge, complementary medicine, and modern/Western medicine together to enable and support a better quality of life. Members receive companionship, conversation, information, referrals, and links or pathways to a better life.

  • Members of the support circle are more likely to have formal plans for their own future healthcare, improved access to check-ups and regular cancer screening, increased adherence to treatment protocols, and improved quality of life.

In 1987, Mary P. Lovato (Santo Domingo Pueblo, passed February 2008) was diagnosed with bone cancer. At the time, culturally relevant cancer education did not exist in Indian Country. In 1994, Santo Domino Pueblo leadership allowed Mary to create cancer education and support within her community. She developed a program based on her own experiences, the People Living Through Cancer organization curricula, and support from Indian Health Service (IHS) Cancer Program staff. The result was a weeklong education program, “A Gathering of Cancer Support.” From 1995, the IHS provided financial support including resources to promote the training, educational materials for training and for individual and group support, and travel support to defray the cost of participation. The Native American Cancer Research Corporation conducted an external review and evaluation of the program’s first decade (1995–2005). More than 164 people completed Mary’s training and almost all started support circles in their communities. Participants reported that, rather than circles run by hospitals in clinical settings, they wanted the circles facilitated by trained Native American people. Participants also noted that circles are both difficult to initiate and to sustain. Ms. Lovato changed her world through persistence, passion, and tenacity. This case study is dedicated to her memory and to the program she created.

Traditional Knowledge

Indigenous cultures throughout the world continue to use and rely on their traditional knowledge. This knowledge is passed on to each new generation through oral traditions, practical applications, and real-time experience. Traditional knowledge is the essential knowledge that protects people and guides them through life. It includes oral tradition and culture and has been shared through many lifetimes to guide generations to make their lives better. It is used by the people to heal their sick, take care of their young and old, find food and shelter, practice culture, make good decisions, and learn about the natural world. Essential knowledge includes knowledge of traditional foods, where to find them, how to prepare them, and how to eat them. It values good health and wellbeing. It teaches about family, clans, bands, and other groups and societies that exist in traditional American Indian and Alaska Native (AI/AN) cultures and how each works to teach, protect, and guide people every day and when they face challenges. Traditional values teach adherence to protocols, good self-care, respect for the rigor of ceremonies, and caring for others.

As the number of AI/AN cancer survivors increases daily, there is a growing need for integrated and expanded services and support to enable survivors to live healthy, happy lives. Indigenous peoples turn to traditional knowledge, health practices, and support circles to heal themselves. Many Indigenous support circles have been formed to meet the need to care, teach, and support each other through life, families, children, illnesses, seasons, famine, drought, and bounty. The commitment to live and work together is part of the commitment of the support circle.

Denver American Indian Cancer Survivors Circle

An example of an American Indian cultural cancer support circle is the Denver American Indian Cancer Survivors Circle founded in Denver, Colorado, in 2001. It was established and facilitated by a Native patient navigator, who had been trained by Mary Lovato and had worked alongside her to educate AI/AN Tribal members about cancer, early detection, screening, and survivorship in the early 2000s. This support circle has filled the gap that exists for American Indian cancer patients in Denver, who need someone to talk to and share their story with—someone who understands their experience and can provide support and shelter both physically and culturally, spiritually, and emotionally, when fighting a significant foe—in this case, cancer. Native American Cancer Research Corporation shared printed information about how to start and retain a local cancer survivorship circle on their website [1].

AI/AN members of this cancer support circle have found a way to weave traditional knowledge, complementary medicine, and modern/Western medicine together to enable and support a better quality of life. The support circle has met monthly for over 22 years, with only brief breaks for summer events, due to illness, and during the COVID-19 pandemic. It provides each member with companionship, conversation, information, referrals, and links or pathways to a better life. It is open to cancer survivors and their families. The support has been invaluable for participants, some of whom have been members for over a decade, and others who have more recently joined following diagnosis. In some cases, family members have joined alongside relatives who have been diagnosed with cancer. At times, when the person with cancer no longer attends the group, relatives, including children and grandchildren, continue to participate.

Many AI/AN cancer survivors do not return to their primary care provider after their cancer experience, perceiving their oncologist to now be their physician. To address this, members of the Denver support circle identified primary care providers and initiated annual check-ups for cancer survivors. As part of this process, group members learned to continue to document changes in their bodies and keep track of all cancer screenings, annual exams, and medications. They learned that each cancer survivor has unique medical outcomes from their diagnosis and treatment that must be managed as part of their wellness habits. The circle members have become each other’s advocates, learning from each other and helping each other, including sharing traditional herbal remedies and teas from their unique heritages. They continue to meet monthly to exchange ideas, support each other, and learn from and uplift each other.

AI/AN cancer survivors throughout Indian Country and here in the Denver American Indian Cancer Survivors Circle have a commitment to their Elders’ and ancestors’ ways of life. They share the oral traditions of their Tribes with younger generations. They practice days-long ceremonies throughout the year at prescribed dates and times to keep the Earth in balance and to keep themselves in harmony. This translates to AI/AN people who, with support, meet their screening and treatment appointments and complete long-term treatments.

Improved outcomes of this AI/AN cancer survivor support circle in Denver include more AI/AN survivors who have (1) formal plans for their own future healthcare, (2) improved access to annual check-ups and regular cancer screening, (3) increased adherence to treatment protocols, (4) regular social opportunities to share with friends and relatives at the support group, and (5) improved quality of life and wellness. At meetings once a month, they share their activities and their progress toward meeting their goals. They share meals and traditional knowledge to help other members with their challenges. They regard each other as family. They also hold an annual event, usually in conjunction with a PowWow, to honor patients and their families. The American Indian PowWow, as referenced here, is a social gathering of members of various American Indian tribes who share their music, songs, dance, arts, and foods while interacting with each other around cultural traditions that have evolved for thousands of years.