Adapting a Cancer Screening Education Program for Native American Women with Disabilities.

Like other minoritized groups, people with disabilities experience lack of access to health care. People with intellectual and developmental disabilities (IDD), which are lifelong disabilities diagnosed in childhood requiring varying levels of support for completing daily activities, are less likely to receive preventive health care such as cancer screening. Furthermore, Native American women are less likely than White women to receive cancer screenings. In this qualitative research with Native American women with IDD, their caregivers, healthcare and service providers, and community leaders, we asked, "What are the influences on breast and cervical cancer screening for Native American women with IDD?" with the goal of adapting an existing cancer screening education program. Semi-structured in-depth interviews (N = 48) were audio recorded and transcribed verbatim for analysis. Two coders used a constant comparative method to code and revise the a priori codebook with subthemes and new codes. Results highlighted individual, interpersonal, and community/institutional influences on screening, emphasizing the individual effects of social inequity on this population, the importance of ableist bias in recommending cancer screenings, and opportunities to integrate traditional ways of knowing with allopathic medicine. Results of this work were used to adapt a cancer screening education program for Native American women with IDD.

The Generational Impact Of Racism On Health: Voices From American Indian Communities.

Structural racism toward American Indians and Alaska Natives is found in nearly every policy regarding and action taken toward that population since non-Natives made first contact with the Indigenous peoples of the United States. Generations of American Indians and Alaska Natives have suffered from policies that called for their genocide as well as policies intended to acculturate and dominate them-such as the sentiment from Richard Henry Pratt to "kill the Indian…, save the man." The intergenerational effect is one that has left American Indians and Alaska Natives at the margins of health and the health care system. The effect is devastating psychologically, eroding a value system that is based on community and the sanctity of all creation. Using stories we collected from American Indian people who have experienced the results of racist policies, we describe historical trauma and its links to the health of American Indians and Alaska Natives. We develop two case studies around these stories, including one from a member of the Navajo Nation's experiences during the COVID-19 pandemic, to illustrate biases in institutionalized structures. Finally, we describe how the American Indian and Alaska Native Cultural Wisdom Declaration can help policy makers eliminate the effect of systemic racism on the health of American Indians and Alaska Natives-for instance, by lifting constraints on federal funding for American Indian and Alaska Native initiatives and allowing payment to traditional healers for their health services.

Shaping a Stories of Resilience Model from urban American Indian elders' narratives of historical trauma and resilience.

American Indians (AIs) have experienced traumatizing events but practice remarkable resilience to large-scale and long-term adversities. Qualitative, community-based participatory research served to collect urban AI elders' life narratives on historical trauma and resilience strategies. A consensus group of 15 elders helped finalize open-ended questions that guided 13 elders in telling their stories. Elders shared multifaceted personal stories that revealed the interconnectedness between historical trauma and resilience, and between traditional perceptions connecting past and present, and individuals, families, and communities. Based on the elders' narratives, and supported by the literature, an explanatory Stories of Resilience Model was developed.

American Indian Elders' resilience: Sources of strength for building a healthy future for youth.

This study examined American Indian (AI) elders' resilience to support an intervention to build resilience among AI urban youth. A literature review of peer-reviewed articles that address resilience in AI and other Indigenous elders yielded six studies that focused on intergenerational relationships, culture, and self-identity. In addition, a qualitative research project collected narratives with urban AI elders to document perceptions of resilience and resilience strategies. The combined outcomes of the literature search and research project revealed how resilience is exemplified in elders' lives and how resilience strategies are linked to cultural teachings and values, youth activities, and education.

Flexible Roles for American Indian Elders in Community-Based Participatory Research.

Community-based participatory research builds partnerships between communities and academic researchers to engage in research design, decision making, data collection, and dissemination of health promotion initiatives. Community-based participatory projects often have formal agreements or defined roles for community and academic partners. Our project (November 2012-November 2014) was designed to document life narratives of urban American Indian elders as a foundation for developing a resilience-based health promotion curriculum for urban American Indian adolescents aged 12 to 18. We used a flexible method for engaging community partners that honored the individual strengths of elders, encouraged them to describe how they wanted to contribute to the project, and provided multiple ways for elders to engage with university partners. We invited elders to participate in one or more of the following roles: as members of consensus panels to develop interview questions, as members of a community advisory board, or as participants in individual qualitative interviews. The flexibility of roles gave elders the opportunity to serve as advisors, co-developers, interviewees, or reviewers during 2 years of curriculum development. Engaging American Indian elders in the research process acknowledged the multiple layers of expertise they had as traditional leaders in the community while promoting trust in and ownership of the project. This flexible technique can be used by other communities that may not be comfortable with structured processes of engagement.

Predictors of Pap test use among women living on the Hopi reservation.

Between July and December 1993, the Hopi Department of Health Services, in collaboration with the Arizona Cancer Center (AZCC), conducted a population-based study of cervical cancer risk factors, screening practices, and predictors of Pap test utilization among American Indian women age 18 years and older living on the Hopi reservation in northern Arizona. This survey, entitled the Healthy Hopi Women's Study, involved a stratified random sample of households from each of the 11 Hopi villages. The final study sample was 559 completed face-to-face interviews. This article reports on unpublished findings of the survey and discusses how the Hopi utilized the study's findings to develop a Centers for Disease Control and Prevention (CDC)-funded breast and cervical cancer program.

Creating the environment for a successful community partnership.

This paper describes the development of the American Indian Oncology Program (AIOP) and presents the accomplishments of a participatory research approach that involved an integrated network for cancer care and research. AIOP used a participatory process to develop infrastructure, identify research questions, develop methodologies, write supplemental grants, and evaluate accomplishments based on community defined measures of success. Partnerships between University and Indian Health Service, private, and state institutions led to improved collaboration. Health services delivery improved by increasing provider involvement at multiple institutions via a Tumor Board. Community awareness improved through workshops addressing community-specific cancer concerns. Collectively, these resulted in an environment receptive to the development of research activities. The AIOP team, through a participatory process, developed infrastructure at each institution that facilitated interaction, community-based education, and improved patient care; identified new partners; raised community-level knowledge and awareness about cancer; encouraged a research-friendly environment and building research capacity; and increased the cultural competency of researchers wishing to work in American Indian communities and created a cadre of future American Indian cancer researchers. As evidenced by successful pilot project development and formation of ongoing research and funding applications, the authors created a research-receptive environment and promoted potentially sustainable research capacity in the community. Much of their success is the result of utilizing a participatory model for capacity building that included not only communities but institutions. Cancer 2006. Published 2006 by the American Cancer Society.

Traditionalism and its relationship to disease risk and protective behaviors of women living on the Hopi reservation.

The fundamental aim of this study was to identify factors crucial for the development of effective cancer prevention programs for American Indian (AI) populations. Toward that end, we developed an instrument to assess the influence of traditionalism on health risks such as smoking, consumption, and obesity. A population-based survey was conducted among 559 randomly selected women living on the Hopi reservation aged 18 years and older, from July through December 1993. To construct a traditionalism score, we conducted focus groups in the community. A multidimensional approach was adopted by assessing three dimensions of native culture: language usage; cultural participation, or participation in such activities as Hopi ceremonies; and percentage of life spent off-reservation. A mean score of the three dimensions was computed for each respondent. High levels of traditionalism were significantly associated with disease protective behaviors, such as practicing traditional Hopi activities to keep healthy (OR = 3.07), and significantly inversely associated with disease risk factors such as smoking (OR = 0.26) and obesity (OR = 0.60) independent of age, marital status, and education. As these data provide a strong rationale for the promotion of traditions in public health programs aimed at decreasing rates of chronic disease among AI women, we conclude this paper with a discussion of the importance of traditionalism and how it might be accurately assessed.