FormalPara Key Points

  • Low levels of health literacy may be a major contributor to poor levels of colorectal cancer screening in American Samoa.

  • Our Indigenous-led public health research shows that 75.5% of American Samoans who are eligible for colorectal cancer screening have either “marginal” or “inadequate” health literacy.

  • Samoan ‘Alaga‘upu (proverbs) help us to share our story of Indigenous-led research.

For over 20 years, the American Samoa Community Cancer Coalition (ASCCC) has been dedicated to reducing the burden of cancer in American Samoa (AS). In 2015, ASCCC received a five-year grant to build research capacity, which enabled us to partner with the University of Hawai‘i Cancer Center and Vanguard University to establish the INdigenous Samoan Partnership to Initiate Research Excellence (INSPIRE). In this chapter, we use the lens of Samoan ‘alaga‘upu (proverbs) to share a story about ASCCC’s study of functional health literacy in adults who are at risk of colorectal cancer.

  • Samoan proverb: O lupe sa vao ese’ese, ae ua fuifui faatasi. (We are from different parts of the forest but connected in one cause.)

  • Lesson learned: We may be from different cultures, but we are all connected in one cause to support our communities in achieving optimal health.

AS is situated in the heart of the South Pacific and is the only US territory located south of the equator. AS includes seven islands, with 77 square miles of land dispersed over 150 square miles of open ocean: Tutuila, Aunu’u, Ofu, Olosega, Ta’u, Swains Island, and Rose Island. Most of the population of nearly 50,000 live on the main island of Tutuila [1]. AS infrastructure operates on a hybrid of US, local, and global practices. The territory’s geographic isolation, challenging political oversight and guidance, and reliance on local and regional experience complicate health interventions and widen health disparities.

A 2018 study identified that among the adult AS population, 93.5% were either overweight or obese, 78.8% consumed less than five daily servings of fruits or vegetables, 39.8% self-reported as hypertensive, and 21.5% had smoked a cigarette within the last 30 days [2]. The three leading causes of death in 2019 were heart disease, cancer, and cerebrovascular disease. The key health concerns are non-communicable diseases, including diabetes, hypertension, and cancers.

Cancer Incidence and Mortality

The American Samoa Cancer Registry (ASCR) is mandated to capture cases of cancer diagnosed both on- and off-island. From 2007 to 2018, ASCR reported 369 cases of cancer, with 90% diagnosed at stage three or higher. Breast, prostate, lung and bronchus, colon, rectum, and uterine collectively accounted for over 50% of newly diagnosed patients. Tobacco (79%) and obesity (62%) were the most common contributing risk factors in adult cancers [3].

Colorectal cancer (CRC) is the third most commonly diagnosed cancer and the top non-gender-specific cancer. It is also highly preventable through education and early detection. Several methods of CRC screening are available on the islands: fecal occult blood test (FOBT), colonoscopy, and flexible sigmoidoscopy. However, only 7% of eligible AS adults reported participating in screening, compared with 62.9% of adults in the United States [4]. Low and/or no participation in preventive health services is associated with not knowing about health promotion behaviors, low levels of health literacy, and cultural norms toward screening [5].

Health Literacy

The US Department of Health and Human Services has designated health literacy as a priority area and the World Health Organization included it as a key factor in health promotion [6]. For the purposes of our research, we refer to functional health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” [6]. Patients who do not understand health information have increased hospitalization rates, disease burden, and mortality [7]. Additionally, low health literacy has been associated with poorer self-reported health status in racial/ethnic minority populations [8].

  • Samoan proverb: Ua o gatasi le futia ma le umele. (While the fisherman swings the rod, the others must assist by paddling hard.)

  • Lesson learned: We must be of one mind in the undertaking.

INdigenous Samoan Partnership to Initiate Research Excellence (INSPIRE)

The INSPIRE program was funded to build research capacity in AS and determine the effects of health literacy on low CRC screening levels. We Indigenized INSPIRE by tui/lalaga (weaving) a community-based participatory approach and known Indigenous frameworks such as the fale (traditional Samoan house) and the falefono (meeting house). Our Le Fale o So’ofa’atasiga (house for research) conceptual model, described in a previous study, led to training 14 Indigenous research assistants who contributed to various aspects of the study including cultural adaptation and participant recruitment [5].

While we understood that AS people need health interventions to reduce CRC incidence and mortality, we needed to understand more about the role of health literacy in prevention and early detection. Our goal was to assess health literacy in a sample of 780 American Samoan adults and to pilot test health promotion materials relevant to resource-poor yet tradition-rich Indigenous communities.

Sample and Methods

Participants were eligible for our health literacy and CRC screening research if they (1) were a resident of AS, (2) were 45 years or older, (3) had not been diagnosed or treated for CRC, (4) could read and speak English or Samoan, (5) could provide written informed consent, (6) had a home address and working phone, and (7) were willing to provide information on their health behaviors. We recruited participants between September and December 2018, using respondent-driven sampling. A description of the recruitment plan was detailed in a previous article [9].

The Short-Test of Functional Health Literacy in Adults (S-TOFHLA) is a validated tool, which includes 36 reading comprehension multiple choice questions and has a seven-minute time limit [10]. The participant score is based on the number of correct answers given, categorized depending on the cutoff ranges listed in Table 66.1. We selected the S-TOFHLA because of its use in two-thirds of published papers that measured health literacy [11] and its previous use in the Samoan population in Southern California [12].

Table 66.1 S-TOFHLA cutoffs
Full size table

We recruited 713 total participants (295 Samoan, 418 English). Table 66.2 shows the results of S-TOFHLA scores by language.

Table 66.2 S-TOFHLA results
Full size table

Results and Discussion

Our results showed that 75.5% of participants had either “marginal” or “inadequate” health literacy, meaning they would have difficulty reading and interpreting health materials. Recommended ways to address these difficulties include: having a person attend appointments to help with interpreting and reading health texts, substituting graphics or symbols when possible (for directions, information, or procedures), and rewriting health materials into simple language [13].

We found a large difference between those who had inadequate health literacy in English (44.0%) versus Samoan (80.3%). While the social determinants of health could be a reason for this, we offer an additional perspective that translation of health materials should not equate to comprehension. The written Samoan language first appeared in 1839 through translated versions of the Bible aided by missionaries [14] and could be considered “newer” than English. Additionally, Westernized concepts including health literacy are undefined in our language. We suggest, therefore, that future health literacy assessments should include listenability and oral delivery as sub-constructs and add oral comprehension assessments such as the Cancer Message Literacy Test-Listening.

A community-partnered approach from participant recruitment to data collection and interpretation resulted in a robust sample size with rich results. This has been one of the largest samples of community members who have participated in research with first-time documentation of the breadth and intensity of health literacy in the community. At the same time, English language assessments and concepts of health literacy do not accurately and adequately capture how health literacy is an issue in AS. Efforts to enhance health literacy and create culturally and linguistically congruent health messaging are critical.

  • Samoan proverb: A malu i fale, e malu i fafo. (If it is cold inside the house, then it is cold outside.)

  • Lesson: Protection for the family, protection for all.

Changing Practices for Health Prevention Messaging

We designed a randomized control trial (RCT) to assess compliance with a CRC fecal occult blood test (FOBT) home test kits using modified versus non-modified patient education materials (PEM) in both English and Samoan languages. The English PEM were found to be written at a 12th-grade level or higher using the online Simple Measure of Gobbledygook (SMOG) readability test. The study staff revised and retested the passage until a fifth-grade reading level was obtained. Unfortunately, SMOG is not reliable in non-English. Instead, we used our previous translation process and developed our own Cloze procedure test, like the S-TOFHLA. Then, we conducted 20 cognitive interviews with adults 50 years old and above to assess the contextual understanding of the Samoan messaging. None of the participants missed the same question and had a median score of 25 out of 26 points. This supported our conclusion that the reader could predict the passage contextually and it was consistent with the natural reading process.

We recruited 260 participants aged 50 and above between October and December of 2020. The final data revealed that 39 reported the results, and 30 complied with the full instructions of the test (14 experiment; 16 control). None of the 30 had scored within the inadequate range of the S-TOFHLA. Unfortunately, we were not able to make any statistically significant associations; however, we later shared our process and results with the local Department of Health’s COVID-19 communication committee. This contributed to redefining vaccination concepts in the community to reduce comprehension barriers. We assisted in the development of over 250 health messages that were disseminated through social media pages, print, television, radio, and websites. These messages aided in a comprehensive effort that achieved a 91.7% vaccination rate by April of 2022 in AS, one of the highest in the United States.

  • Samoan proverb: Ole ala ile pule ole tautua. (The path to leadership is through service.)

  • Lesson: By serving others, we create a pathway to success.

Conclusion

Our story shares a unique journey where collaboratively built, Indigenous-led public health research contributed to improved health outcomes in AS. Historically, this type of research would have been performed by non-Indigenous institutions and researchers. The innovation shown is a form of tautua (service) to the AS community, creating a pathway for future Indigenous generations to lead and conduct research within their communities.

We offer fa’afetai tele lava (thank you very much) to the following people and organizations: Dr Victor Tofaeono and Mrs Luana Scanlan for their guidance as INSPIRE Multiple Principal Investigators; Drs Kevin Cassel and Lana Sue Ilima Ka’opua in designing the INSPIRE sampling and data analysis methodology; the second INSPIRE researcher cohort Magdalene Augafa, Oscar Betham, Wynona Lee, Solinu’u Savusa, and Tofoi Unutoa Mageo for their contributions to the translation and cognitive interview process; the previous and current Board of Directors of the ASCCC who have supported the efforts of the INSPIRE and ACT-AS-ONE program, staff, and co-investigators; Dr Shawnda Schroeder for her valuable feedback during the editing process; and, Lastly, the NIMHD (award number 1 U24 MD 011202), the University of Hawai’i Cancer Center (award number 5 30 CA071789), and HRSA (award number 1G32HS42576-01) in their vision to challenge structural practices to provide necessary grant funds that made these projects possible to a small community-based organization.