The Báa nnilah Program: Results of a Chronic-Illness Self-Management Cluster Randomized Trial with the Apsáalooke Nation.

Indigenous people in Montana are disproportionately affected by chronic illness (CI), a legacy of settler colonialism. Existing programs addressing CI self-management are not appropriate because they are not consonant with Indigenous cultures in general and the Apsáalooke culture specifically. A research partnership between the Apsáalooke (Crow Nation) non-profit organization Messengers for Health and Montana State University co-developed, implemented, and evaluated a CI self-management program for community members. This article examines qualitative and quantitative program impacts using a pragmatic cluster randomized clinical trial design with intervention and waitlist control arms. The quantitative and qualitative data resulted in different stories on the impact of the Báa nnilah program. Neither of the quantitative hypotheses were supported with one exception. The qualitative data showed substantial positive outcomes across multiple areas. We examine why the data sets led to two very different stories, and provide study strengths and limitations, recommendations, and future directions.

Developing and Implementing a Culturally Consonant Treatment Fidelity Support Plan with the Apsáalooke Nation.

Treatment fidelity remains underreported in health intervention research, particularly among Indigenous communities. One explanation for this gap is the lack of culturally consonant strategies listed in the National Institutes of Health (NIH) Behavior Change Consortium (BCC) treatment fidelity framework, the gold standard for understanding and measuring fidelity. This paper focuses on the development and implementation of a culturally consonant treatment fidelity support plan across two of the five BCC fidelity areas, provider training and treatment delivery, within a chronic illness self-management program for the Apsáalooke (Crow) Nation. Our team selected and adapted strategies from, and added strategies to, the BCC framework, that centered on relational accountability and the Apsáalooke culture. To be culturally consonant, we approached treatment fidelity as supporting Aakbaabaaniilea (Apsáalooke program facilitators) rather than monitoring them. This resulted in the development of a fifth treatment fidelity area: building and fostering relationships. We propose that fidelity to relational accountability is the foundation of successful programs in Indigenous communities. This suggests an important shift from tracking what was conducted in an intervention to prioritizing how things were conducted. We encourage others to view the BCC framework as a starting point in developing fidelity strategies that are consonant with local cultures.

The need for an intersectionality framework in precision medicine research.

Precision medicine research has seen growing efforts to increase participation of communities that have been historically underrepresented in biomedical research. Marginalized racial and ethnic communities have received particular attention, toward the goal of improving the generalizability of scientific knowledge and promoting health equity. Against this backdrop, research has highlighted three key issues that could impede the promise of precision medicine research: issues surrounding (dis)trust and representation, challenges in translational efforts to improve health outcomes, and the need for responsive community engagement. Existing efforts to address these challenges have predominantly centered on single-dimensional demographic criteria such as race, ethnicity, or sex, while overlooking how these and additional variables, such as disability, gender identity, and socioeconomic factors, can confound and jointly impact research participation. We argue that increasing cohort diversity and the responsiveness of precision medicine research studies to community needs requires an approach that transcends conventional boundaries and embraces a more nuanced, multi-layered, and intersectional framework for data collection, analyses, and implementation. We draw attention to gaps in existing work, highlight how overlapping layers of marginalization might shape and substantiate one another and affect the precision-medicine research cycle, and put forth strategies to facilitate equitable advantages from precision-medicine research to diverse participants and internally heterogeneous communities.

Recruitment, retention, and intervention adherence for a chronic illness self-management intervention with the Apsáalooke Nation.

Recruitment, retention, and adherence within health intervention research have been understudied in Indigenous communities, where well-known health disparities exist. The purpose of this paper is to describe planned versus actual recruitment, retention, and adherence strategies and the evaluation of retention and adherence strategies for a community-based research study of a Chronic Illness (CI) self-management intervention within an Indigenous community. A Community-Based Participatory Research (CBPR) approach was used to develop and implement Báa nnilah, a culturally consonant educational intervention to improve CI self-management. Reasons for participant adherence and retention were tracked and recorded over time. A post-intervention survey assessed barriers and facilitators to intervention adherence. Overall, recruitment, retention, and adherence methods were successful in enrolling and maintaining participation. Using a CBPR approach and culturally consonant strategies may assist in meeting recruitment goals and improving sustained participation of community members, thus impacting health disparities among Indigenous communities.

Improving Chronic Illness Self-Management with the Apsáalooke Nation: The Báa nnilah Project, a cluster randomized trial protocol.

Chronic illness (CI) is a major cause of morbidity and mortality for Indigenous people. In Montana, Indigenous communities disproportionately experience CI, a legacy of settler colonialism. For over two decades, Messengers for Health, an Apsáalooke (Crow Indian) non-profit, and Montana State University have partnered to improve community health using a community-based participatory research (CBPR) approach. We developed Báa nnilah, an intervention utilizing community strengths, to improve CI self-management. This manuscript describes the protocol for a cluster randomized trial with two arms: an intervention group and a wait list control group, who both participated in the Báa nnilah program. Enrollment occurred through family/clan networks and community outreach and attended to limitations of existing CI self-management interventions by using an approach and content that were culturally consonant. Participants received program materials, attended seven gatherings focused on improving CI management, and received and shared health information through storytelling based on a conceptual framework from the Apsáalooke culture and incorporating CI self-management strategies. Participant support occurred within partnership dyads during and between gatherings, from community mentors, and by program staff. The study used mixed methods to evaluate the intervention, with qualitative measures including the Short Form Health Survey (SF-12), Patient Health Questionnaire (PHQ-9), Patient Activation Measure (PAM), and a suite of PROMIS measures, various physical tests and qualitative survey responses, semi-structured interviews, and outcomes shared by participants with program staff. We hypothesized that Báa nnilah would significantly improve participant health outcome measures across multiple dimensions with quality of life (QoL) as the primary outcome. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03036189. Registered on 30 January 2017. (From https://clinicaltrials.gov/ct2/show/NCT03036189).

Community sharing: Contextualizing Western research notions of contamination within an Indigenous research paradigm.

Báa nnilah is a chronic illness self-management program designed by and for the Apsáalooke (Crow) community. Arising from a collaboration between an Indigenous nonprofit organization and a university-based research team, Báa nnilah's development, implementation, and evaluation have been influenced by both Indigenous and Western research paradigms (WRPs). Báa nnilah was evaluated using a randomized wait-list control group design. In a WRP, contamination, or intervention information shared by the intervention group with the control group, is actively discouraged as it makes ascertaining causality difficult, if not impossible. This approach is not consonant with Apsáalooke cultural values that include the encouragement of sharing helpful information with others, supporting an Indigenous research paradigm's (IRP) goal of benefiting the community. The purpose of this paper is to address contamination and sharing as an area of tension between WRP and IRP. We describe how the concepts of contamination and sharing within Báa nnilah's implementation and evaluation are interpreted differently when viewed from these contrasting paradigms, and set forth a call for greater exploration of Indigenous research approaches for developing, implementing, and evaluating intervention programs in Indigenous communities. (Improving Chronic Illness Management with the Apsáalooke Nation: The Báa nnilah Project.: NCT03036189), ClinicalTrials. gov: NCT03036189).

Structural Racism in the COVID-19 Pandemic: Moving Forward.

The COVID-19 pandemic has taken a substantial human, social and economic toll globally, but its impact on Black/African Americans, Latinx, and American Indian/Alaska Native communities in the U.S. is unconscionable. As the U.S. continues to combat the current COVID-19 cycle and prepares for future pandemics, it will be critical to learn from and rectify past and contemporary wrongs. Drawing on experiences in genomic research and intersecting areas in medical ethics, health disparities, and human rights, this article considers three key COVID-19-related issues: research to identify remedies; testing, contact tracing and surveillance; and lingering health needs and disability. It provides a pathway for the future: community engagement to develop culturally-sensitive responses to the myriad genomic/bioethical dilemmas that arise, and the establishment of a Truth and Reconciliation Commission to transition the country from its contemporary state of segregation in healthcare and health outcomes into an equitable and prosperous society for all.

Developing an Indigenous Goal-Setting Tool: Counting Coup.

Chronic illness self-management best practices include goal-setting; however, the goal theory that many tools employ relies on individualistic principles of self-efficacy that are not culturally consonant within many Indigenous communities. During the creation of the Báa nnilah program, a chronic illness self-management intervention, we developed a goal-setting tool specific to the Apsáalooke Nation. Emerging from an Indigenous paradigm and methodology, Counting Coup serves as a goal-setting tool that promotes the Apsáalooke culture, connects individuals with their ancestors, and focuses on achievement of goals within relationships. Future research and practice should be grounded in the historical and cultural contexts of local communities when designing and implementing goal-setting tools. Limitations to Counting Coup as a goal-setting tool include the need for program facilitators to have a relationship with participants due to Counting Coup's foundation in relational accountability and that the environmental context may pose difficulties for participants in moving towards healthy behavior change.

Using Community-Based Participatory Research to Design, Conduct, and Evaluate Randomized Controlled Trials with American Indian Communities.

PURPOSE AND OBJECTIVES: Academic literature indicates a need for more integration of Indigenous and colonial research systems in the design, implementation, and evaluation of randomized controlled trials (RCTs) with American Indian communities. In this article, we describe ways to implement RCTs with Tribal Nations using community-based participatory research (CBPR) principles and practices. INTERVENTION APPROACH: We used a multiple case study research design to examine how Tribal Nations and researchers collaborated to develop, implement, and evaluate CBPR RCTs. EVALUATION METHODS: Discussion questions within existing tribal-academic partnerships were developed to identify the epistemologic, methodologic, and analytic strengths and challenges of 3 case studies. RESULTS: We identified commonalities that were foundational to the success of CBPR RCTs with Tribal Nations. Long-standing community-researcher relationships were critical to development, implementation, and evaluation of RCTs, although what constituted success in the 3 CBPR RCTs was diverse and dependent on the context of each trial. Respect for the importance of diverse knowledge systems that account for both Indigenous knowledge and colonial science also contributed to the success of the RCTs. IMPLICATIONS FOR PUBLIC HEALTH: Tribal-academic partnerships using CBPR RCTs must include 1) establishing trusted CBPR partnerships and receiving tribal approval before embarking on RCTs with Tribal Nations; 2) balancing tribal community interests and desires with the colonial scientific rigor of RCTs; and 3) using outcomes that include tribal community concepts of success as well as outcomes found in standard colonial scientific research practices to measure the success of the CBPR RCTs.

Reliability, construct validity, and measurement invariance of the PROMIS Physical Function 8b-Adult Short Form v2.0.

PURPOSE: The National Institutes of Health established the Patient-Reported Outcomes Measurement Information System (PROMIS) to assess health across various chronic illnesses. The standardized PROMIS measures have been used to assess symptoms in studies that included Native American participants, although the psychometric properties of these measures have not been assessed among a solely Native American population. This study aimed to assess the reliability, construct validity, and measurement invariance of a widely used PROMIS Physical Function survey among Native Americans residing on or near the Apsáalooke (Crow) Reservation who were living with chronic illnesses. METHODS: Participants aged 24 to 82 years and living with at least one chronic illness were recruited for a community-based participatory research project. Baseline data were used for the current study (N = 210). The 8-item PROMIS Physical Function 8b-Adult Short Form v2.0 was used to assess the function of upper and lower extremities, central core regions, and the ability to complete daily activities on a 5-point Likert scale. RESULTS: Results indicated that the above PROMIS survey had high internal consistency (Cronbach's α = 0.95) and split-half (r = 0.92, p < 0.001) reliabilities. Confirmatory factor analyses supported construct validity among females of the above population and when the two sex groups were combined. Results also indicated that corresponding thresholds and factor loadings were invariant across male and female groups. CONCLUSIONS: The above PROMIS measure had good psychometric properties in females and when the two sex groups were combined among Native American adults living on or near the Apsáalooke reservation with chronic illnesses. Thresholds and factor loadings appeared to be invariant by sex. Future studies with a larger sample size among males and more studies on the psychometric properties of other PROMIS measures among Native American populations are needed.

Daasachchuchik: A Trauma-Informed Approach to Developing a Chronic Illness Self-Management Program for the Apsáalooke People.

In Montana, American Indians with chronic illnesses (CIs) die 20 years earlier than their White counterparts highlighting an urgent need to develop culturally consonant CI self-management programs. Historical and current trauma places Indigenous peoples at increased health risk relative to others, and negatively influences CI self-management. The Apsáalooke Nation and Montana State University worked together to develop and implement a trauma-informed CI self-management program to improve the Apsáalooke community's health. This paper describes the origins and development of the trauma-informed components of the program. Using community stories and a literature review of trauma-informed interventions, partners co-developed culturally consonant trauma materials and activities grounded in community values and spirituality. Trauma-informed content was woven throughout three intervention gatherings and was the central focus of the gathering, Daasachchuchik ('Strong Heart'). Apsáalooke ancestors survived because of their cultural strengths and resilience; these cultural roots continue to be essential to healing from historical and current trauma.

Improving chronic illness self-management with the Apsáalooke Nation: Development of the Báa nnilah program.

RATIONALE: Since 1996, members of the Apsáalooke (Crow) Nation and faculty and students at Montana State University have worked in a successful community-based participatory research (CBPR) partnership, leading to increased trust and improvements in health awareness, knowledge, and behaviors. As major barriers to health and healthy behaviors have caused inequities in morbidity and mortality rates for multiple chronic diseases among the Apsáalooke people, community members chose to focus the next phase of research on improving chronic illness management. OBJECTIVE: Existing chronic illness self-management programs include aspects inconsonant with Apsáalooke culture and neglect local factors seen as vital to community members managing their health conditions. The aim of this study was to use CBPR methods grounded in Apsáalooke cultural values to develop an intervention for improving chronic illness self-management. METHOD: Community members shared stories about what it is like to manage their chronic illness, including facilitators and barriers to chronic illness management. A culturally consonant data analysis method was used to develop a locally-based conceptual framework for understanding chronic illness management and an intervention grounded in the local culture. RESULTS: Components of the intervention approach and intervention content are detailed and similarities and differences from other chronic illness management programs are described. CONCLUSIONS: Our collaborative process and product may be helpful for other communities interested in using story data to develop research projects, deepen their understanding of health, and increase health equity.

What Touched Your Heart? Collaborative Story Analysis Emerging From an Apsáalooke Cultural Context.

Community-based participatory research and decolonizing research share some recommendations for best practices for conducting research. One commonality is partnering on all stages of research; co-developing methods of data analysis is one stage with a deficit of partnering examples. We present a novel community-based and developed method for analyzing qualitative data within an Indigenous health study and explain incompatibilities of existing methods for our purposes and community needs. We describe how we explored available literature, received counsel from community Elders and experts in the field, and collaboratively developed a data analysis method consonant with community values. The method of analysis, in which interview/story remained intact, team members received story, made meaning through discussion, and generated a conceptual framework to inform intervention development, is detailed. We offer the development process and method as an example for researchers working with communities who want to keep stories intact during qualitative data analysis.

The Impact of Historical and Current Loss on Chronic Illness: Perceptions of Crow (Apsáalooke) People.

The purpose of this research was to gain a better understanding of perceptions about the impact of historical and current loss on Apsáalooke (Crow) people acquiring and coping with chronic illness. This study took a qualitative phenomenological approach by interviewing community members with chronic illness in order to gain insight into their perceptions and experiences. Participants emphasized 10 areas of impact of historical and current loss: the link between mental health and physical health/health behaviors; resiliency and strengths; connection and isolation; importance of language and language loss; changes in cultural knowledge and practices; diet; grieving; racism and discrimination; changes in land use and ownership; and boarding schools. The findings from this research are being used to develop a chronic illness self-care management program for Crow people.

Building and maintaining trust in a community-based participatory research partnership.

Although intervention research is vital to eliminating health disparities, many groups with health disparities have had negative research experiences, leading to an understandable distrust of researchers and the research process. Community-based participatory research (CBPR) approaches seek to reverse this pattern by building trust between community members and researchers. We highlight strategies for building and maintaining trust from an American Indian CBPR project and focus on 2 levels of trust building and maintaining: (1) between university and community partners and (2) between the initial project team and the larger community. This article was cowritten by community and academic partners; by offering the voices of community partners, it provides a novel and distinctive contribution to the CBPR literature.

Apsáalooke women's experiences with Pap test screening.

BACKGROUND: Cervical cancer mortality rates are among the highest in the United States for Northern Plains Native American women compared with white and other Native American women. The aims of Messengers for Health, a community-based participatory research project based on the Apsáalooke (Crow Indian) Reservation, are to decrease cervical cancer screening barriers, improve knowledge regarding screening and prevention, and increase the proportion of women receiving Pap tests. This paper presents results from a survey assessing women's perceptions of the level of comfort and care received by health care providers in their most recent Pap test appointment. METHODS: A survey assessing patient communication and satisfaction with their health care providers was conducted with a random sample of 101 Apsáalooke women. Qualitative and quantitative methods were utilized to analyze the survey data. RESULTS: Women reported both positive and negative experiences with their provider regarding their Pap test appointments. They noted positive experiences when trust was established and when the provider offered information, reassured or encouraged them, was personable, was familiar or consistent, maintained confidentiality, and was a woman. The women reported negative experiences when the examination was too short, when they did not have a consistent or female provider, and when they did not feel comfortable with the provider's nonverbal communication. CONCLUSIONS: Continued work with both providers and patients is necessary to decrease communication barriers and increase satisfaction with Pap test appointments.

A cervical cancer community-based participatory research project in a Native American community.

The Messengers for Health on the Apsáalooke Reservation project uses a community-based participatory research (CBPR) approach and lay health advisors (LHAs) to generate knowledge and awareness about cervical cancer prevention among community members in a culturally competent manner. Northern Plains Native Americans, of whom Apsáalooke women are a part, continue to be disproportionately affected by cervical cancer. This article examines quantitative and qualitative changes that occurred in the community since the inception of the Messengers for Health program. Paired sample t tests are used to evaluate the one-group pretest and posttest interviews of 83 Apsáalooke women in knowledge, comfort, and cancer awareness levels. Results reveal cervical cancer knowledge gains, gains in participants' comfort discussing cancer issues, and gains in awareness of cervical cancer and the Messengers program. Field notes, meeting minutes, and community perceptions are used to qualitatively evaluate the effectiveness of the Messengers program. Practice implications are discussed.

Development of an interviewer training manual for a cervical health project on the Apsáalooke Reservation.

This article describes strategies used to develop a survey interview training manual for use on the Apsáalooke (Crow Indian) Reservation and delineates how this process and product differed from those discussed in the extant literature on survey interview training. Working to ensure cultural appropriateness is especially important due to past research improprieties with Native American populations. This manual was developed as a part of a cervical health intervention program, Messengers for Health. Areas covered include goals of survey research, recruitment and enrollment, manner of the interviewer, nonverbal behavior, beginning the interview, and language use. Limitations of this work and suggestions for conducting survey research with Native American populations are also included.

Participatory development of a cervical health brochure for Apsáalooke women.

BACKGROUND: One challenge for eliminating health disparities is increasing the cultural sensitivity of educational systems including printed educational materials. These materials can be effective in changing health knowledge, attitudes, and behaviors. Participatory community-based processes are vital in creating culturally sensitive interventions. METHODS: We held community meetings in 4 communities on the Apsáalooke Reservation. We gave women examples of cervical health pamphlets and held modified focus groups to gather information on women's preferences. RESULTS: Women provided detailed feedback and we developed an Apsáalooke-specific educational pamphlet. CONCLUSION: These results support a participatory process for overall project guidance.