'In our culture, we come when you die': Qualitative descriptive analysis of end-of-life perspectives in a reservation-based community.

AIM: To explore (1) perspectives and attitudes of Native Americans regarding transitions from serious illness to death, and (2) awareness about hospice and palliative care service models in a Great Plains reservation-based community. DESIGN: Qualitative descriptive study. METHODS: Community members and clinicians were invited to participate in a semi-structured focus group or interview by Tribal Advisory Board members. Analysis involved three phases: (1) qualitative descriptive analysis of preliminary themes using the Addressing Palliative Care Disparities conceptual model; (2) a cultural review of the data; and (3) reflexive thematic analysis to synthesize findings. RESULTS: Twenty-six participants engaged in two focus groups (n = 5-6 participants in each) and interviews (n = 15). Four themes were derived from their stories: (1) family connectedness is always priority; (2) end-of-life support is a community-wide effort; (3) everyone must grieve in their own way to heal; and (4) support needs from outside the community. CONCLUSION: Findings highlight cultural considerations spanning the life course. Clinicians, researchers and traditional wisdom keepers and practitioners, particularly those working in rural and/or reservation-based settings, must provide culturally safe care. This must include acknowledging and prioritizing the needs and preferences of Native American patients and the impact on their families and communities. IMPACT AND IMPLICATIONS FOR THE PROFESSION: Leveraging community assets, such as family and social networks, is key for supporting Native American patients with serious illnesses. Additionally, facilitating greater family and caregiver involvement along a patient's care trajectory may be a pathway for easing health care workers' caseloads in reservation-based areas, where resources are limited. REPORTING METHOD: The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used. PATIENT/PUBLIC CONTRIBUTION: The study was ideated based on community insight. Tribal Advisory Board members oversaw all aspects including recruitment, data acquisition, interpretation of findings and tribal data dissemination.

Feasibility, acceptability and effectiveness of a culturally informed intervention to decrease stress and promote well-being in reservation-based Native American Head Start teachers.

BACKGROUND: While benefiting from strong cultural ties to family, land and culture Native Americans residing on reservations experience psychological distress at rates 2.5 times that of the general population. Treatment utilization for psychological health in reservation-based communities is low with access to culturally appropriate care lacking. Evidence suggests that for mental health treatment, Native Americans prefer culturally informed care that respects Native perspectives on health and well-being. METHODS: To decrease stress and promote well-being in tribal Head Start teachers we adapted and implemented a culturally focused intervention within a community-based participatory research framework using mixed methods. Feasibility and acceptability of the adapted 5-session curriculum was tested in a single arm intervention study with a sample of 18 teachers on the Fort Peck Reservation. Participants completed surveys at baseline and upon completion of the intervention. Within session observations and two post-intervention focus groups (n = 8, n = 10) were conducted to elaborate and explain the quantitative results eliciting participant experience of intervention effectiveness and feasibility, acceptably and appropriateness. Implementation outcomes were assessed quantitatively using the Acceptability of Intervention, Intervention Appropriateness, and Feasibility of Intervention measures. RESULTS: Quantitively, attendance rate overall was 93% with no dropouts. Pretest/posttest surveys were analyzed using t-tests and Hedges g to measure effect size. Contrary to our hypothesis, self-perceived stress showed a small positive effect size, indicating that participants were more stressed post intervention. However, depression decreased, with tribal identity and resilience showing positive effect sizes. Content analysis for the qualitative data collected within session observations and post intervention focus groups revealed how lifetime traumas were affecting participants, providing some explanation for the increase in stress. Teachers reported that the sessions helped their psychological health and well-being, supporting feasibility of future interventions. Acceptability scored highest with a mean (SD) of 4.25 (.84) out of 5, appropriateness 4.18 (.86) and feasibility 4.06 (.96) supporting intervention to be acceptable, appropriate, and feasible. CONCLUSION: Utilizing a culturally based intervention to buffer stress and support the well-being of reservation-based teachers showed promise in helping them recognize their cultural strengths, stress, and need for ongoing support. Implementation outcomes show that intervention scale-out is feasible.

Cultural Protection from Polysubstance Use Among Native American Adolescents and Young Adults.

Reservation-based Native American youth are at disproportionate risk for high-risk substance use. The culture-as-treatment hypothesis suggests aspects of tribal culture can support prevention and healing in this context; however, the protective role of communal mastery and tribal identity have yet to be fully explored. The objectives of this study were to investigate (1) the relationship between cultural factors and high-risk substance use, which includes polysubstance use, early initiation of alcohol and illicit drugs, and binge drinking, and (2) substance use frequency and prevalence of various substances via cross-sectional design. Multiple logistic regression modeling was used to analyze data from 288 tribal members (15-24 years of age) residing on/near the Fort Peck Reservation in the Northern Plains. When controlling for childhood trauma and school attendance, having at least a high school education (OR = 0.434, p = 0.028), increased communal mastery (OR = 0.931, p = 0.007), and higher levels of tribal identity (OR = 0.579, p = 0.009) were significantly associated with lower odds of polysubstance use. Overall prevalence of polysubstance use was 50%, and binge drinking had the highest single substance prevalence (66%). Prevalence of early initiation of substances (≤ 14 years) was inhalants (70%), alcohol (61%), marijuana (74%), methamphetamine (23%), and prescription drug misuse (23%). Hydrocodone, an opioid, was the most frequently misused prescription drug. Findings indicate programs focused on promoting education engagement, communal mastery, and tribal identity may mitigate substance use for Native American adolescents living in high-risk, reservation-based settings.

The Relationship of Adverse Childhood Experiences to PTSD, Depression, Poly-Drug Use and Suicide Attempt in Reservation-Based Native American Adolescents and Young Adults.

Adverse childhood experiences (ACEs) are associated with numerous risk behaviors and mental health outcomes among youth. This study examines the relationship between the number of types of exposures to ACEs and risk behaviors and mental health outcomes among reservation-based Native Americans. In 2011, data were collected from Native American (N = 288; 15-24 years of age) tribal members from a remote plains reservation using an anonymous web-based questionnaire. We analyzed the relationship between six ACEs, emotional, physical, and sexual abuse, physical and emotional neglect, witness to intimate partner violence, for those <18 years, and included historical loss associated symptoms, and perceived discrimination for those <19 years; and four risk behavior/mental health outcomes: post-traumatic stress disorder (PTSD) symptoms, depression symptoms, poly-drug use, and suicide attempt. Seventy-eight percent of the sample reported at least one ACE and 40 % reported at least two. The cumulative impact of the ACEs were significant (p < .001) for the four outcomes with each additional ACE increasing the odds of suicide attempt (37 %), poly-drug use (51 %), PTSD symptoms (55 %), and depression symptoms (57 %). To address these findings culturally appropriate childhood and adolescent interventions for reservation-based populations must be developed, tested and evaluated longitudinally.

Predictors of Supportive Care Needs During Serious Illness: Cross-sectional Analysis of Reservation-Based Informal Caregivers.

Native Americans (Indigenous Americans) have high rates of serious illness in the United States. Informal caregivers are heavily relied on in caring for patients in low-resource settings. The needs of caregivers residing on reservations are sorely underreported. Therefore, our objective was to examine relationships between facilitators (communal mastery, cultural identity, and spirituality) and barriers (depression, anxiety, stress, and burden) with supportive care needs among adult informal caregivers in 1 reservation-based community. A cross-sectional survey was distributed in July and August 2022 as part of a larger multimethod, community-based participatory research study. We used descriptive statistics and linear regression models to examine relationships against the primary outcome, the Supportive Care Needs Assessment Tool for Indigenous People. Overall, 127 participants were included; most were female (n = 92, 72.4%), were between 30 and 49 years (n = 57, 44.9%), and had 6 months or less of caregiving experience (n = 41, 32.5%). Higher depression, anxiety, stress, and burden were significantly associated with higher Supportive Care Needs Assessment Tool for Indigenous People scores. Overall, mental health is a significant barrier that may indicate greater supportive care needs among informal caregivers, although further work is needed to differentiate symptoms and their impact on caregiving from a cultural perspective.

The well-being of head start teachers: a scoping literature review.

Attention to students' socio-emotional, behavioral, and academic outcomes raises important considerations for the psychological wellbeing of teachers, especially Head Start teachers who often work with underserved families. This scoping review summarizes current literature on Head Start teacher psychological well-being and identifies 1. how teacher well-being is conceptualized and measured, 2. Which interventions exist to promote Head Start teacher psychological well-being or help them manage stress and 3. directions for future research. The review resulted in 32 articles (29 peer-reviewed and three gray literature). Findings highlight that research is primarily descriptive using cross-sectional surveys and secondary data. Evidence suggests that although resilient and committed as educators, Head Start teachers struggle to cope with the stressors involved in supporting early childhood education. Interventions to decrease stress and promote the psychological well-being are few but teachers indicate interest in such interventions. Autonomy, feeling valued for their work, collegiality between staff, and a supportive supervisor help improve job satisfaction, retention, and psychological well-being. Future research should be guided by conceptual models that prioritize Head Start teachers' input, use of validated measures of psychological well-being with consideration of cultural and structural factors that influence well-being.

The Pre-implementation Process of Adapting a Culturally Informed Stress Reduction Intervention for Native American Head Start Teachers.

Head Start is a federally funded program for children (3-5 years) from low-income families. In the Fort Peck Native American Reservation, tribal Head Start teachers have reported high stress in supporting children experiencing adverse childhood experiences. Thus, we adapted the Little Holy One intervention (ClinicalTrials.gov: NCT04201184) for the teachers' context and culture to enhance psychological health and well-being. Within a participatory framework, the eight-step ADAPT-ITT methodology was used to guide the adaptation process: assessment; decision; adaptation; production; topical experts; integration; training; and testing. For Step 1, we purposive sampled 27 teachers, ancillary staff, and parents to understand teachers' stress, support mechanisms, and interest in an intervention via focus groups (n = 9) and individual interviews (n = 18). Qualitative data underscored teachers' experiences of stress, depression, and need for support (Step 1). Iterative feedback from a tribal advisory board and Little Holy One designers rendered selection of five lessons (Step 2, 5), which were adapted for the teachers via theater testing (Step 3, 4). Community capacity assessment revealed their ability to implement the intervention (Step 6). Testing of this adapted intervention in a feasibility trial (steps 7, 8) will be reported in a future publication. A rigorous systematic process within a participatory framework allowed intervention adaption based on community input. Leveraging "culture as treatment" may be useful for enhancing psychological health outcomes for Native Americans who historically underutilize existing psychological services. Supplementary Information: The online version contains supplementary material available at 10.1007/s43477-022-00070-3.

Strategies for culturally safe research with Native American communities: an integrative review.

Background: A history of unethical research and deficit-based paradigms have contributed to profound mistrust of research among Native Americans, serving as an important call to action. Lack of cultural safety in research with Native Americans limits integration of cultural and contextual knowledge that is valuable for understanding challenges and making progress toward sustainable change. Aim: To identify strategies for promoting cultural safety, accountability, and sustainability in research with Native American communities. Method: Using an integrative review approach, three distinct processes were carried out: (1) appraisal of peer-reviewed literature (Scopus, PubMed, and ProQuest), (2) review of grey literature (e.g. policy documents and guidelines), and (3) synthesis of recommendations for promoting cultural safety. Results: A total of 378 articles were screened for inclusion, with 55 peer-reviewed and grey literature articles extracted for full review. Recommendations from included articles were synthesised into strategies aligned with eight thematic areas for improving cultural safety in research with Native American communities. Conclusions: Research aiming to understand, respect, and acknowledge tribal sovereignty, address historical trauma, and endorse Indigenous methods is essential. Culturally appropriate, community-based and -engaged research collaborations with Native American communities can signal a reparative effort, re-establish trust, and inform pragmatic solutions. Rigorous research led by Native American people is critical to address common and complex health challenges faced by Native American communities. Impact statement: Respect and rigorous methods ensure cultural safety, accountability, and sustainability in research with Native Americans.

Examining protective and buffering associations between sociocultural factors and adverse childhood experiences among American Indian adults with type 2 diabetes: a quantitative, community-based participatory research approach.

OBJECTIVES: The purpose of this study was to determine the frequency of select adverse childhood experiences (ACEs) among a sample of American Indian (AI) adults living with type 2 diabetes (T2D) and the associations between ACEs and self-rated physical and mental health. We also examined associations between sociocultural factors and health, including possible buffering processes. DESIGN: Survey data for this observational study were collected using computer-assisted survey interviewing techniques between 2013 and 2015. SETTING: Participants were randomly selected from AI tribal clinic facilities on five reservations in the upper Midwestern USA. PARTICIPANTS: Inclusion criteria were a diagnosis of T2D, age 18 years or older and self-identified as AI. The sample includes n=192 adults (55.7% female; mean age=46.3 years). PRIMARY MEASURES: We assessed nine ACEs related to household dysfunction and child maltreatment. Independent variables included social support, diabetes support and two cultural factors: spiritual activities and connectedness. Primary outcomes were self-rated physical and mental health. RESULTS: An average of 3.05 ACEs were reported by participants and 81.9% (n=149) said they had experienced at least one ACE. Controlling for gender, age and income, ACEs were negatively associated with self-rated physical and mental health (p<0.05). Connectedness and social support were positively and significantly associated with physical and mental health. Involvement in spiritual activities was positively associated with mental health and diabetes-specific support was positively associated with physical health. Social support and diabetes-specific social support moderated associations between ACEs and physical health. CONCLUSIONS: This research demonstrates inverse associations between ACEs and well-being of adult AI patients with diabetes. The findings further demonstrate the promise of social and cultural integration as a critical component of wellness, a point of relevance for all cultures. Health professionals can use findings from this study to augment their assessment of patients and guide them to health-promoting social support services and resources for cultural involvement.

Essentials of Research Engagement With Native American Tribes: Data Collection Reflections of a Tribal Research Team.

BACKGROUND: A community-based participatory research (CBPR) approach, particularly relevant when collecting data on sensitive topics, was employed to partner with reservation tribes to assess suicide risk among Native American (NA) youth. OBJECTIVES: To share relationship-building strategies used by an NA research team to build a partnership for collecting data. METHODS: Our collective knowledge was used to cultivate a deeper understanding of the community, build trust, and partner to engage in a respectful tribally appropriate research process. This approach provided a solid foundation for our inquiry on risk and protective factors for youth suicide. LESSONS LEARNED: A culturally grounded approach recognizes the importance of (1) ethnic concordance, (2) cultural acceptance, (3) taking time to build trust, and (4) using CBPR principles. CONCLUSIONS: Significant participation of Native researchers in sensitive topics research with tribal communities is a promising strategy for trust building and partnership development. Understanding tribal context is imperative.

A Framework to Examine the Role of Epigenetics in Health Disparities among Native Americans.

Background. Native Americans disproportionately experience adverse childhood experiences (ACEs) as well as health disparities, including high rates of posttraumatic stress, depression, and substance abuse. Many ACEs have been linked to methylation changes in genes that regulate the stress response, suggesting that these molecular changes may underlie the risk for psychiatric disorders related to ACEs. Methods. We reviewed published studies to provide evidence that ACE-related methylation changes contribute to health disparities in Native Americans. This framework may be adapted to understand how ACEs may result in health disparities in other racial/ethnic groups. Findings. Here we provide evidence that links ACEs to methylation differences in genes that regulate the stress response. Psychiatric disorders are also associated with methylation differences in endocrine, immune, and neurotransmitter genes that serve to regulate the stress response and are linked to psychiatric symptoms and medical morbidity. We provide evidence linking ACEs to these epigenetic modifications, suggesting that ACEs contribute to the vulnerability for developing psychiatric disorders in Native Americans. Conclusion. Additional studies are needed to better understand how ACEs contribute to health and well-being. These studies may inform future interventions to address these serious risks and promote the health and well-being of Native Americans.