Problem Addressed

• Lower screening rates: Analysis of data from the Behavioral Risk Factor Surveillance System found that 69.4 percent of American Indian/Alaska Native women 40 years of age and older reported having had a mammogram in the last 2 years, compared with 76 percent of non-Hispanic whites.⁵
• Limited access: Although American Indians and Alaska Natives are eligible for direct health care through the Indian Health Service's Tribal and urban programs, few of these programs provide breast health screening such as mammography. Further, less than 10 percent of urban American Indians receive Indian Health Service care, due primarily to the inaccessibility of the needed services.⁶
• Psychosocial and sociocultural barriers: Survey and focus group results suggest that psychosocial (e.g., fear, distrust, misinformation) and sociocultural barriers (e.g., the belief that discussing cancer invites “evil spirits” and that cancer is a “punishment enacted by the Creator”) represent more significant barriers to accessing care than does poverty for American Indian women in Denver and Los Angeles.⁷
• Late detection, resulting in relatively poor survival rate: American Indian women have a relatively poor breast cancer survival rate that has been attributed to diagnosis at later stages of the disease.^8,9 For the 10-year period between 1988 and 1997, the 5-year breast cancer survival rate was 68.9 percent for American Indian and Alaska Native women, compared with 81.5 percent for non-Hispanic whites.⁸

Description of the Innovative Activity

• Recruitment of culturally competent lay health advisers: The program identifies and recruits bilingual and/or bicultural American Indian women to serve as Native Sisters. Ideal candidates are American Indian or Alaska Native women who have the respect of the community, regularly model healthy behaviors, and possess a passion for helping community members.
• Training of advisers: The original training program consisted of 80 hours of interactive information sessions and role-play exercises. The current, expanded program requires Native Sisters to complete approximately 130 hours, with at least quarterly refresher sessions on requested topics and inservice workshops or training sessions.
  • Initial and ongoing training: Initial training sessions provide an overview of breast cancer, including incidence, mortality, and survival data; psychosocial and psychocultural barriers to screening; treatment options; and available resources. In addition, Native Sisters receive training on roles and responsibilities; navigating the health care system; data management (including use of an online navigation evaluation program); survey protocols; confidentiality and informed consent; and strategies for recruiting women in need of screening services. Training consists of 3- to 5-hour increments held on nonconsecutive days over the course of several months. Existing lay health advisers attend refresher sessions on a quarterly basis.
  • Clinic tours: Before serving clients, Native Sisters tour the clinical settings where they will be working. While on tour, they meet with cancer screening and treatment staff and get copies of all relevant clinic forms (including, but not limited to Health Insurance Portability and Accountability Act paperwork, patient history documents, patient eligibility forms, and Medicaid/Medicare application forms).
• Provision of key services: The lay health advisers perform three key tasks, as outlined below:
  • Community outreach and education: Native Sisters give presentations, tend information booths, seek out elders at cultural events and health fairs, and distribute culturally competent educational materials on breast health, including lists of upcoming screening dates and locations. They also provide one-on-one consultations regarding risk factors, health care resources, screening procedures, and other breast cancer–related information. Native Sisters also serve as faculty for community cancer education workshops, which increases community awareness of the lay health advisers.
  • Recruitment of women in need of services: Native Sisters use multiple methods to recruit other American Indian woman for breast cancer screening. Passive recruitment methods include distribution of newsletters, posters, and flyers in public locations frequented by American Indian women (e.g., churches, meeting places). Active recruitment methods include telephone calls and face-to-face encounters at cultural events.
  • Patient navigation, advocacy, and support: As necessary, Native Sisters provide a wide range of culturally competent advocacy and support to patients in a number of areas, including:
    • Identification of available resources and navigation of the health care system
    • Appointment scheduling
    • Preparation of questions in advance of provider visits
    • Transportation, child care, and elder care
    • Emotional support
    • Accompanying patients to breast cancer screenings, followup, and treatment appointments
    • Assistance in understanding the diagnosis, prognosis, and treatment options
    • Clarification of relevant clinical trials so that the patient can make an informed choice regarding participation
    • Assistance in explaining circumstances to family members
    • Arranging the desired avenue of treatment (e.g., traditional healing, Western medicine, or both)
    • Clarification of any of the above issues in the client’s primary language when feasible

References/Related Articles

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Innovator Disclosures

Results

• Most effective of four strategies evaluated: The Native Sisters program proved to be the most effective of four high-level recruitment strategies evaluated as part of the Native American Women's Wellness through Awareness project.⁷ The combination of the four strategies, which were tested in two cities (in Denver from October 1995 to April 1996 and in Los Angeles from May 1995 to April 1996), significantly increased the number of screenings sought by American Indian women.
• Significant increase in screening: A separate time-series evaluation found a significant increase in the number of American Indian women presenting for mammography after the implementation of the Native Sisters program in Denver.¹⁰ In a subsequent evaluation that assigned participants randomly to one of three groups, telephone and face-to-face meetings conducted by Native Sisters significantly increased the proportion of women receiving mammograms within recommended guidelines (by 42 and 31 percent, respectively). By comparison, the proportion of women receiving recommended screenings in the control group declined slightly.¹¹

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

• Identification of barriers: As noted earlier, project leaders conducted survey and focus groups to identify potential barriers to obtaining breast cancer screening in the target population, including both psychosocial and sociocultural barriers. Understanding them proved to be a critical first step in overcoming them, a process that also required respect and patience.⁶
• Adaptation of protocol: Project leaders tailored protocols to the unique characteristics of each new local American Indian community, with the adaptations focused on the best ways to overcome poverty issues and address the barriers relevant to that community. Project leaders also collaborate with partner organizations to expand and adapt the model on an ongoing basis, addressing new challenges and even reaching new populations. One expansion involved recruiting Latina and low-income white and African-American women (in addition to American Indian women) for a breast cancer intervention.¹³

Resources Used and Skills Needed

• Staffing: The program employs approximately 10 Native Sisters in Denver, with more employed at partner locations. Most Native Sisters are bilingual, bicultural, or both, which facilitates communication between service providers and patients and helps to reduce misunderstandings that could affect the timeliness and quality of care.
• Costs: Lay health advisers initially earn up to $15 per hour. Salaries generally increase 3 percent each year. Additional costs include automobile insurance, which runs roughly $800 per person per year, plus expenses related to the development and printing of the educational materials, which tend to be minimal.

Funding Sources

Getting Started with This Innovation

• Develop partnership agreements: Partnership agreements (e.g., a Memorandum of Agreement) should clearly stipulate the expectations of all parties involved at each stage in the process.
• Secure adequate compensation for staff: Although the program has used volunteers in the past, it can be difficult to recruit and retain unpaid individuals willing and able to dedicate the extensive amount of time and commitment required. Therefore, to the extent possible, lay advisers should be offered a competitive salary and benefits package.
• Ensure sufficient training: Program success depends in part on the ability to provide comprehensive upfront and regular ongoing training to the lay health advisers.
• Provide supplemental automobile coverage: To protect Native Sisters from personal liability, the program requires that all Native Sisters have private automobile insurance and provides supplemental insurance coverage for the use of personal vehicles during program-related activities (e.g., transporting patients to appointments).
• Incorporate traditional healing and spirituality as appropriate: Native Sisters staff report that incorporating traditional healing and spirituality seems to have a positive effect on patient outcomes.

Sustaining This Innovation

• Continually seek new partnerships: New partnerships with like-minded individuals and organizations can provide ongoing staff, resources, and/or funding to ensure program sustainability.
• Actively pursue alternative funding: Because grants tend to be time-limited, program leaders need to constantly pursue alternative funding sources.
• Make adjustments as needed: This program has been modified several times in response to evaluation findings. For example, early recruitment efforts involved calling American Indian women from preexisting phone lists (e.g., clinic lists, voter registration lists, participant lists from programs serving American Indians). However, program leaders abandoned this method after finding that the phone numbers often were inaccurate and/or outdated.
• Treat staff well: The Native Sisters program attributes its high staff retention rate to the following practices: good pay and benefits, open communication, flexibility in modifying program protocols, and strong professional support from program management.

Use By Other Organizations

• South Dakota (Rapid City Regional Hospital's Walking Forward Program, and the Aberdeen Area Tribal Chairmen's Health Board/Northern Plains Comprehensive Cancer Plan)
• Michigan (Intertribal Council of Michigan in the cities of Sault Ste. Marie, Mount Pleasant, Detroit, and Baraga-Keweenaw Bay)
• Kansas and Missouri (Heart of America)
• Oklahoma, Alaska, and New York (Native American Cancer Education for Survivors Native Partners)