Understanding Resilience and Mental Well-Being in Southwest Indigenous Nations and the Impact of COVID-19: Protocol for a Multimethods Study.

BACKGROUND: Despite experiencing many adversities, American Indian and Alaska Native populations have demonstrated tremendous resilience during the COVID-19 pandemic, drawing upon Indigenous determinants of health (IDOH) and Indigenous Nation Building. OBJECTIVE: Our multidisciplinary team undertook this study to achieve two aims: (1) to determine the role of IDOH in tribal government policy and action that supports Indigenous mental health and well-being and, in turn, resilience during the COVID-19 crisis and (2) to document the impact of IDOH on Indigenous mental health, well-being, and resilience of 4 community groups, specifically first responders, educators, traditional knowledge holders and practitioners, and members of the substance use recovery community, working in or near 3 Native nations in Arizona. METHODS: To guide this study, we developed a conceptual framework based on IDOH, Indigenous Nation Building, and concepts of Indigenous mental well-being and resilience. The research process was guided by the Collective benefit, Authority to control, Responsibility, Ethics (CARE) principles for Indigenous Data Governance to honor tribal and data sovereignty. Data were collected through a multimethods research design, including interviews, talking circles, asset mapping, and coding of executive orders. Special attention was placed on the assets and culturally, socially, and geographically distinct features of each Native nation and the communities within them. Our study was unique in that our research team consisted predominantly of Indigenous scholars and community researchers representing at least 8 tribal communities and nations in the United States. The members of the team, regardless of whether they identified themselves as Indigenous or non-Indigenous, have many collective years of experience working with Indigenous Peoples, which ensures that the approach is culturally respectful and appropriate. RESULTS: The number of participants enrolled in this study was 105 adults, with 92 individuals interviewed and 13 individuals engaged in 4 talking circles. Because of time constraints, the team elected to host talking circles with only 1 nation, with participants ranging from 2 to 6 in each group. Currently, we are in the process of conducting a qualitative analysis of the transcribed narratives from interviews, talking circles, and executive orders. These processes and outcomes will be described in future studies. CONCLUSIONS: This community-engaged study lays the groundwork for future studies addressing Indigenous mental health, well-being, and resilience. Findings from this study will be shared through presentations and publications with larger Indigenous and non-Indigenous audiences, including local recovery groups, treatment centers, and individuals in recovery; K-12 and higher education educators and administrators; directors of first responder agencies; traditional medicine practitioners; and elected community leaders. The findings will also be used to produce well-being and resilience education materials, in-service training sessions, and future recommendations for stakeholder organizations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44727.

"We Live on an Island": Perspectives on Rural Family Caregivers for Adults with Alzheimer's Disease and Related Dementias in the United States.

As the United States' aging population grows, there will be increased prevalence of individuals living with Alzheimer's Disease and related dementias (ADRD), who largely rely on the support of their family caregivers. Family caregivers residing in rural areas face additional challenges with managing caregiving responsibilities and navigating support services. The purpose of this multilevel phenomenological qualitative study was to explore the assets, unique needs, and resources of rural-residing ADRD caregivers from the caregiver, provider, and policy influencers' perspectives. The study took place between 2019 through 2021 in northern Arizona, a largely rural and geographically vast area home to caregivers from diverse backgrounds. Twenty-seven caregivers to a loved one with ADRD participated in focus groups. Twelve health and social services providers and twelve policy influencers, those involved in leadership positions for aging programs or advocacy groups, completed individual interviews. Caregivers demonstrate many assets which contribute to their ability to manage and cope with their caregiving role. However, caregivers face a series of issues related to their caregiving role and need early and ongoing education regarding ADRD. There is a lack of resources available in rural areas, in particular providers, making it challenging to obtain needed resources necessary to support their loved one with ADRD. Furthermore, there is a need for more providers trained in working with aging adults and those experiencing ADRD, and a need for more culturally relevant resources.

Maintaining the Partnership Between a Tribal Breast and Cervical Cancer Program and a University-Based Cancer Prevention Center During COVID-19 Lock-Down Restrictions-A Case Study.

To inform women of the Navajo Nation of safety measures implemented to minimize COVID-19 virus exposure during screening and treatment procedures at Navajo Nation based health care facilities, the Navajo Nation Breast and Cervical Cancer Prevention Program (NNBCCPP) and the University-based Partnership for Native American Cancer Prevention Program (NACP) collaborated to develop a podcast to describe the continued availability of services. During the COVID-19 pandemic, women of all ages and ethnicities in the US needing breast and cervical cancer prevention screenings and treatment, have been hesitant to seek services given the advice to avoid crowded spaces and maintain physical distancing. Epidemiological trends indicate that proactive, intensive strategies are needed in Native American communities for early detection and treatment to support early cancer diagnosis and improve cancer survival. The NNBCCPP and Northern Arizona University (NAU) through the National Institute of Health's National Cancer Institute funded NACP had a nascent partnership prior to the onset of COVID-19 pandemic. This partnership relied on face-to-face interaction to allow for informal social interaction, facilitate clear communication and support continued trust building. To adhere to federal, state and tribal recommendations to minimize gatherings and to stay in-place to minimize the spread of the virus, the Navajo Nation and NAU restricted, and in most cases would not approve employee travel for partnership meetings. The plans to develop a podcast necessitated bringing additional members into the collaboration who were unfamiliar to the original partners and due to travel restrictions, required all interactions to be remote. This expanded group met virtually to develop a script, record and edit the podcast. More importantly, group members had to build and maintain trust over months of communicating via a teleconference video platform. This collaborative addressed challenges related to unstable Internet connections and periodic stay-at-home policies; thus, these emerging partners had to modify social and professional communication to respect and accommodate the stress and uncertain circumstances created by the pandemic on the citizens and employees of Navajo Nation. This case study describes strategies used to maintain and respect all members of the partnership.

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.

Development of a Culturally Anchored Qualitative Approach to Conduct and Analyze Focus Group Narratives Collected in Diné (Navajo) Communities to Understand the Impacts of the Gold King Mine Spill of 2015.

The Gold King Mine Spill (Spill) occurred in August 2015 upstream from Silverton, Colorado and released three million gallons of contaminated water into the Animas River, a tributary to the San Juan River that flows across the Navajo Nation. Using principles of community-engaged research, the Gold King Mine Spill Diné Exposure Project co-developed a culturally anchored approach to conduct focus groups and analyze narratives collected in three Diné (Navajo) communities along the San Juan River within 9 months of the Spill. Focus group questions were designed to document the socio-cultural impacts of the Spill. This paper: (1) outlines the partnerships and approvals; (2) describes focus group design, training, data collection and analysis; and (3) reflects on the use of a culturally anchored approach in Indigenous, specifically Diné-centered research. Diné social and cultural etiquette and concepts of relationality were used to adapt standard (non-Indigenous) qualitative methods. Findings describe community perceptions of short-term impacts of the disaster, as well as past and present injustices, communication related to the Spill, and concerns of persistent threats to Diné lifeways. The culturally anchored approach was critical in fostering trust with Diné participants and aligned with the candor of the discussions.

Voices of Community Partners: Perspectives Gained from Conversations of Community-Based Participatory Research Experiences.

Community-based participatory research (CBPR) has been documented as an effective approach to research with underserved communities, particularly with racial and ethnic minority groups. However, much of the literature promoting the use of CBPR with underserved communities is written from the perspective of the researchers and not from the perspective of the community partner. The purpose of this article is to capture lessons learned from the community partners' insight gained through their experiences with CBPR. A multi-investigator consensus method was used to qualitatively code the transcripts of a CBPR story-telling video series. Seven major themes were identified: (1) expectations for engaging in research, (2) cultural humility, (3) respecting the partnership, (4) open communication, (5) genuine commitment, (6) valuing strengths and recognizing capacities, and (7) collaborating to yield meaningful results. The themes drawn from the community partner's voice align with the tenets of CBPR advanced in the academic literature. More opportunities to include the community voice when promoting CBPR should be undertaken to help introduce the concepts to potential community partners who may be research cautious.