Publications

The purpose of this article is to share our story of conceptualizing Indigenous early relational wellbeing (ERW), specifically reflecting American Indian and Alaska Native worldviews. Our approach is grounded in Indigenous methodologies and guided by a Community of Learning comprised of Indigenous and allied Tribal early childhood community partners, researchers, practitioners, and federal funders. We describe the steps we took to conceptualize caregiver–child relationships from an Indigenous perspective, center Indigenous values of child development, apply an established Indigenous connectedness framework to early childhood, and co-create a conceptual model of Indigenous ERW to guide future practice and research. This model highlights relational practices as seeds of connectedness and relational wellbeing, and includes the roles of spirituality, culture, and ceremony in nurturing ERW; the manifestations of relational wellbeing across the lifespan; and the interdependence of relational wellbeing within communities and families, across generations, and with the environment. The model also informs the creation of a measure to understand practices that foster relational wellbeing among Indigenous children and families and their relationship to positive development, thus informing research, practice, and policy.

Introduction: Adolescent girls and young women (AGYW) in Kenya have low pre-exposure prophylaxis (PrEP) initiation rates in part because of stigmatizing interactions with health care providers. Our recent randomized clinical trial of a standardized patient actor (SP) training intervention for providers found higher quality PrEP delivery at intervention sites; however, it was unclear whether improved service quality improved PrEP initiation.

Methods: This analysis used routine records from facilities participating in the randomized trial that aimed to improve provider communication and adherence to Kenyan guidelines when offering PrEP to AGYW. We used facility-level PrEP registers from May to December 2019 as the baseline period and December 2020 to June 2021 as the postintervention period. We used linear regression with percentage initiating as the outcome, intervention and baseline initiation levels as covariates, and the number eligible postintervention at each facility as frequency weights.

Results: Overall, 1375 AGYW presented to study sites, were eligible for PrEP, and were included in analyses (baseline: n = 706, postintervention: n = 669). Among 669 PrEP-eligible AGYW in the postintervention period (intervention: n = 360, control: n = 309), 591 (88.3%) initiated PrEP (intervention: n = 335, control: n = 256). PrEP initiation was 93.1% at intervention sites (range: 0%-100%) and 82.8% at control sites (range: 0%-100%). Adjusted for baseline initiation rates, initiation was 12.1% higher at intervention sites than at control sites ( P < 0.001, [95% CI: 0.09 to 0.15]).

Conclusions: Our study found significant improvement in PrEP initiation among AGYW who presented to intervention facilities. SP training interventions that improve quality of service delivery for AGYW could lead to higher population-level PrEP coverage.

Background

In many American Indian and Alaska Native (AIAN) communities, family members care for elders with memory issues. AIAN youth are a unique and important caregiving group who may lack basic caregiving skills, as well as developmentally and culturally appropriate support and resources.

Methods

Grounded in community-based participatory research (CBPR), AIAN youth (n = 8) participated in talking circles to discuss their experiences caring for someone who has memory loss. They shared stories and reflected on their understanding of Alzheimer’s disease and dementia. Youth were invited to participate in two 1-h trainings on storytelling and zine-making and then invited to create a zine.

Results

The youth described changes in a person’s ability to take care of themselves or changes in typical activities as the first signs of memory loss. Youth shared how they helped provide care. Zines created by 3 youth depicted aunties and grandmothers with dementia and the importance of self-care as a young caregiver.

Conclusion

AIAN youth are an important caregiving group. Zines provide youth caregivers a platform to share their stories with other youth in their own way. Zines can be easily shared to support other youth ADRD caregivers who may struggle with the emotions of long-term caregiving for a family member.

AI/AN communities are disproportionately impacted by food insecurity and gestational diabetes mellitus (GDM). Decreasing the risk of GDM can interrupt the intergenerational cycle of diabetes in AI/AN families, and can decrease diabetes-related health disparities. The goal of this study was to explore ways of supporting holistic health and reducing the risk of GDM among young American Indian and Alaska Native (AI/AN) females prior to pregnancy. Semi-structured interviews were conducted with adult AI/AN women (>18 years) who had GDM or who have young female relatives (e.g., daughters) (n = 41), AI/AN females between 12 and 24 years (n = 18), and key experts in food/nutrition and health within AI/AN communities (n = 32). Three themes emerged: (1) guidance on how to support young females’ holistic wellness; (2) evidence that generations of colonial violence, including forced removal, forced poverty, and the imposition of a Western-based food system, causes deeper, systemic fracturing of traditional cultural food knowledge and practices; and the fact that (3) opportunities for improved adolescent female health are rooted in AI/AN values and how AI/AN people resist the impacts of anti-Indigenous racism through family-based, community-led, and holistic health. These themes suggest alternative understandings about the relationships between food insecurity and holistic pre-pregnancy health and can guide our next steps in decreasing health disparities in these communities.

Objective: To evaluate the “What Can I Eat?”: Healthy Choices for American Indian and Alaska Native Adults With Type 2 Diabetes (AI/AN WCIE) intervention.

Design: Pilot randomized waitlist-controlled trial. Recruitment through diabetes registries and randomized to either the immediate intervention (n = 35) or waitlist control group (n = 25). Immediate arm started classes immediately on randomization; waitlist arm started classes 3 months after randomization.

Setting: Classes were taught synchronously online by registered dietitian nutritionists at 5 reservation-based or urban intertribal clinical sites nationwide in 2021.

Participants: American Indian and Alaska Native adults with type 2 diabetes (n = 60).

Intervention: Topics in AI/AN WCIE classes include: the Diabetes Plate, sugar-sweetened beverages, decreasing sodium, increasing consumption of healthful traditional Native foods. Class activities included didactic sessions, hands-on interactive learning, physical activity, mindful eating, and goal setting.

Main outcome measure: Diabetes nutrition self-efficacy, behavior, and clinical measures.

Analysis: Linear mixed models examined change in outcomes from baseline to 1 month and 3 months by randomization group. By 3 months, immediate intervention participants had completed the classes; the waitlist control group had not yet begun the intervention.

Results: After 3 months, confidence in using the Diabetes Plate (β = 0.80 [95% confidence interval (CI), 0.56-1.03], P < 0.001) and healthy nutrition behavior (β = 0.88 [95% CI, 0.57-1.19], P = 0.004) improved significantly in the immediate intervention group but not in the waitlist control group; confidence in making healthy nutrition choices (β = 0.65 [95% CI, 0.43-0.88], P = 0.02) improved significantly more in the immediate intervention group than in the waitlist control group. No significant changes were identified in clinical outcomes.

Conclusions: The AI/AN WCIE program enhanced self-efficacy and healthful nutrition choices among adults with type 2 diabetes.

Introduction and Objective: American Indians experience high rates of type 2 diabetes (T2D). Limited access to quality healthcare and healthy food can impact American Indians’ ability to manage T2D. We developed a classroom-based, culturally-tailored, ADA-sponsored diabetes nutrition education curriculum, entitled “What Can I Eat?” Healthy Choices for American Indians and Alaska Natives with T2D (WCIE). We evaluated the impact of engaging in WCIE classes augmented by a food security resource (FSR) which was a weekly $30 grocery gift-card for 12 weeks.

Methods: We conducted a pilot 3-arm randomized controlled trial for American Indian adults with T2D (n=67) at one urban Indian clinic. Treatment arms for the 3-month intervention included: WCIE+FSR; WCIE alone; FSR alone. Clinical measures, surveys, and 24-hour diet recalls were collected at baseline and 3 months. We evaluated outcomes at 3 months using Chi squared and Kruskal Wallis tests and linear mixed models.

Results: WCIE class attendance (90%) and retention at 3-month assessments (93%) was high. No changes were seen in clinical outcomes or food security however self-efficacy for healthy eating (mean changes= 0.3-0.6, p<0.05), and use of the ADA diabetes plate method (mean changes= 0.7-1.0, p<0.05) improved in all groups. Though all 3 groups improved in dietary behavior, the WCIE+FSR group experienced the greatest improvement on the Healthy Eating Index (50.4 from 47.2) compared to the WCIE alone (53.0 from 50.4) and FSR alone (56.0 from 55.1), though results were not significant.

Conclusion: WCIE can improve healthful eating behavior and self-efficacy and could augment comprehensive diabetes self-management education and support.

Representativeness in randomized clinical trials remains a critical concern, affecting the external validity of trial results, equitable access to the risks and benefits of research participation, and public trust in clinical research. Although representative participation by members of groups traditionally underrepresented in clinical trials is just a surrogate for true diversity, equity, inclusion, and belonging in clinical trials, it can be quantified, allowing stakeholders to add empirical rigor to diversity, equity, inclusion, and belonging efforts. Multiple ways to measure representativeness have been proposed, including the participation-to-prevalence ratio, raw participation proportions or numbers for relevant subgroups, and enrollment fraction for relevant subgroups. These methods have strengths and weaknesses and may be appropriate to report in certain circumstances, depending on why stakeholders seek to assess representativeness. Stakeholders—including regulatory agencies, journal editors, clinical trial investigators, and trial sponsors—may use quantitative measures of representativeness to establish trial enrollment standards, monitor equitable participation in ongoing trials, and condition funding or drug or device approval on achieving specific representativeness targets. However, using quantitative measures of representativeness in this way could have unintended consequences, including researchers “gaming” recruitment strategies to meet target numbers, overlooking nuanced variations within communities, and potentially incentivizing problematic and exploitative recruitment strategies. Although no single method of measuring representativeness offers a comprehensive solution for increasing diversity, equity, inclusion, and belonging in all randomized clinical trials, a carefully designed, multifaceted approach to measuring representativeness may provide stakeholders with useful perspectives for measuring progress in increasing the diversity of clinical trial participation. For stakeholders seeking a single number to assess the representativeness of a trial enrolling patients with a disease state with well-delineated demographics, the participation-to-prevalence ratio is ideal; however, for a more nuanced view of representativeness, the combination of enrollment fraction in subgroups of relevance plus a full report of the demographics of patients approached for enrollment may be more appropriate.

Objectives: We examined the association of loss of pregnancy-related Medicaid coverage with unmet health care needs, medical financial hardship, and health care use in postpartum women participating in a nationally representative household survey.

Design: Cross-sectional study design.

Sample and measurements: Using 2012-2018 National Health Interview Survey data, we classified postpartum women as either (1) having Medicaid coverage or (2) uninsured due to loss of pregnancy-related Medicaid coverage. We examined the relationship of loss of pregnancy-related Medicaid coverage with unmet health care needs, medical financial hardship, and health care use.

Results: Compared to Medicaid-insured postpartum women, uninsured women who lost pregnancy-related Medicaid coverage had significantly greater odds of delaying medical care due to cost, as well as greater odds of unmet need for medical care, mental health care, and prescriptions. Uninsured postpartum women who lost pregnancy-related Medicaid coverage also had significantly greater odds of medical financial hardship and lower odds of health care use.

Conclusions: Findings suggest that continued Medicaid coverage during postpartum could improve health care access among uninsured women experiencing loss of pregnancy-related Medicaid eligibility. These results hold important implications for the public health impact of recent policy efforts to extend Medicaid eligibility into the postpartum period.

Community health needs assessments (CHNAs) often lack sufficient community member participation. This lack of participation contributes to a continuation of unmet needs and systematic inequities. Southcentral Foundation (SCF) is an Alaska Native-owned, nonprofit healthcare organization serving 70,000 Alaska Native and American Indian (AN/AI) people living in and around Anchorage and 55 rural villages. Results of a 1993 CHNA shaped the organizational mission, vision, organizational principles, objectives, and initiatives as SCF assumed care from the Indian Health Service. We describe methods used by SCF to maximize participation of diverse community members in a second large-scale CHNA in 2018, how results align with existing organizational values and priorities, and how results were disseminated. We discuss the benefits of periodic CHNAs and ongoing community engagement.

Participation in outdoor play is beneficial for the health, well-being, and development of children. Early childhood education centers (ECECs) can provide equitable access to outdoor play. The PROmoting Early Childhood Outside (PRO-ECO) study is a pilot randomized trial that evaluates the PRO-ECO intervention on children’s outdoor play participation. The PRO-ECO intervention included four components: ECEC outdoor play policy; educator training; ECEC outdoor space modification; and parent engagement. This study included eight ECECs delivering licensed care to children (n = 217) aged 2.5 to 6 years in Greater Vancouver, British Columbia, Canada. Using a wait-list control cluster randomized trial design, ECECs were randomly allocated to either the intervention arm (n = 4) or the wait-list control arm (n = 4). Change in the proportion and diversity of observed outdoor play behaviour during scheduled outdoor time was measured. Outcome data were collected at baseline, 6-month follow-up, and 12-month follow-up. The intervention effect on children’s outdoor play participation was examined using logistic regression mixed effect models. Controlling for gender, weather and temperature, there were no changes in children’s outdoor play participation following implementation of the PRO-ECO intervention in the between-group analysis. Within-group comparisons also revealed no change in play participation following the PRO-ECO intervention, however, the intervention group showed a positive effect (OR = 1.28, 95% CI = 0.97, 1.70) in play participation 6 months after implementation of the intervention. The findings indicate that further analyses on child- and ECEC-level outcomes collected as part of the PRO-ECO study, including the diversity of children’s play, is required to effectively assess the impact of this intervention.

As Alaska Native scholars, we share a short essay about lessons learned from a project that addresses suicide within rural Alaska Native communities. From this experience we provide a brief overview of the research study and explain why it is so important to (1) remain authentically engaged in Indigenous relationality, (2) center strengths-based approaches, and (3) focus on community level protective factors within research. From this work, we have learned that the way we address community concerns, and reveal community solutions plays a substantive role in ensuring the transference of Indigenous values, knowledge, practices and skills to younger generations that help them to have a strong sense of identity and belonging. We have also learned that research can serve to deepen our understanding of Indigenous relationality in real time and contribute to positive health and wellbeing among our communities at multiple levels. We hope to inspire others to think about and shift their approach to research within Indigenous communities so that we can collectively achieve the outcomes we desire.

There is a critical need to strengthen science–society relationships—especially with historically marginalized communities—if we are to better and more equitably manage complicated, intertwined, global challenges at the intersection of environment, health, equity, and well-being. Community-engaged science, which focuses on shared leadership and mutual benefit in scientific partnership with communities, has the potential to transform science, communities, and even society. Despite this promise, however, community-engaged science is not always transformative. Presentations and discussions at the 5th National Academies Science Communication Colloquium demonstrated the importance of creating structures, practices, and a culture of science engagement that prioritizes listening and learning from communities. Based on presentations at the colloquium, research publications, and our own experiences, we share a set of evidence-informed principles that are common to successful community-engaged science across many contexts: respect, humility, listening, reciprocity, mutuality, and reflexivity. We also offer steps the scientific community can take to advance and improve the transformative practice of community-engaged science as part of a productive ecosystem of scientific activities: evolving norms and culture, integrating community science into current systems, building incentives and structures to support community-engaged science, developing a workforce skilled in community engagement, and investing in a coordinated research-to-practice agenda.

Intergenerational connectedness broadly encompasses relations among humans, lands, and all living and spiritual beings, and functions as an important part of Indigenous well-being. Many public health campaigns and interventions aim to promote connectedness to support holistic wellness and reduce health inequities. Currently, however, there are no measurement tools to assess intergenerational connectedness to support culturally grounded research and program evaluation. The purpose of this qualitative study is to understand and describe Indigenous intergenerational connectedness as part of a larger community-based participatory research study to develop a measure of Indigenous intergenerational connectedness. We convened a community advisory board and an Indigenous measurement development group to steer the project. We conducted N = 23 interviews with 21 Indigenous participants to learn about intergenerational connectedness. An inductive, thematic analysis yielded three primary themes: (1) dimensions of intergenerational connectedness, (2) facilitators of intergenerational connectedness, and (3) qualities and outcomes of intergenerational connectedness. These findings highlight the profound importance of intergenerational connectedness for Indigenous communities and its role in promoting health, mental health, and well-being. This study adds to the growing field of American Indian/Alaska Native strengths-based public health and mental health research promoting Indigenous values, worldviews, cosmologies, and epistemologies to promote healthy, thriving Indigenous communities.

Application domains such as environmental health science, climate science, and geosciences—where the relationship between humans and the environment is studied—are constantly evolving and require innovative approaches in geospatial data analysis. Recent technological advancements have led to the proliferation of high-granularity geospatial data, enabling such domains but posing major challenges in managing vast datasets that have high spatiotemporal similarities. We introduce the Hierarchical Grid Partitioning (HierGP) framework to address this issue. Unlike conventional discrete global grid systems, HierGP dynamically adapts to the data’s inherent characteristics. At the core of our framework is the Map Point Reduction algorithm, designed to aggregate and then collapse data points based on user-defined similarity criteria. This effectively reduces data volume while preserving essential information. The reduction process is particularly effective in handling environmental data from extensive geographical regions. We structure the data into a multilevel hierarchy from which a reduced representative dataset can be extracted. We compare the performance of HierGP against several state-of-the-art geospatial indexing algorithms and demonstrate that HierGP outperforms the existing approaches in terms of runtime, memory footprint, and scalability. We illustrate the benefits of the HierGP approach using two representative applications: analysis of over 289 million location samples from a registry of participants and efficient extraction of environmental data from large polygons. While the application demonstration in this work has focused on environmental health, the methodology of the HierGP framework can be extended to explore diverse geospatial analytics domains.

This paper reports on a Conference organized by the Washington University School of Medicine’s (WUSM) Knight Alzheimer Disease Research Center (Knight ADRC), entitled “Enhancing Participation by Minoritized Groups in Alzheimer Disease and Related Dementia (ADRD) Research.” It builds on recommendations from a 2018 Workshop. Representatives from all 37 federally funded ADRCs described strategies to enhance the recruitment and engagement of participants from historically minoritized groups. St. Louis community members attended and provided input. The Conference was guided by the 2015 National Institute on Aging (NIA) Health Disparities Research Framework, which delineates that “fundamental life-course factors such as race, ethnicity, and socioeconomic status interact with behavioral and biological characteristics to determine health and disease.” The multiple ways of engaging participants described at the Conference provide guidance and strategies that can be adapted and utilized across the ADRC network and other research programs nationally to enhance inclusion of minoritized groups in ADRD research.

Highlights

• Increasing representation in Alzheimer disease and related dementias (ADRD) research is a national priority.
• The National Conference described strategies to diversify participation in AD research.
• All Alzheimer’s Disease Research Centers (ADRCs) were represented.
• Local community members attended and participated in breakout sessions.
• Many community-engaged strategies are being used to enhance recruitment and retention.
• Approaches can be adapted for local needs and utilized by ADRCs.

Aim: To determine if adaptations to contingency management (CM) led to increased alcohol abstinence among individuals entering treatment with a pre-treatment urine-ethyl glucuronide (uEtG) alcohol biomarker level shown previously to predict CM-non-response (uEtG >350 ng/mL).

Methods: 307 individuals who met criteria for a serious mental illness and moderate to severe alcohol use disorder submitted urine samples twice weekly over a four-week pre-treatment phase. 158 individuals who had a mean uEtG level ( >350 ng/mL) over the pre-treatment phase were randomized to 16 weeks of treatment-as-usual and one of three prize-draw CM conditions: (1) usual CM (reinforcement criteria: uEtG <150 ng/mL, consistent with alcohol abstinence, $1,686 maximum earnings); (2) high magnitude CM (reinforcement criteria: uEtG <150 ng/mL, $2,982 maximum earnings); or (3) shaping CM (reinforcement criteria: weeks 1-4 uEtG <500 ng/mL, weeks 5-16 uEtG <150 ng/mL, $1,686 maximum earnings). Generalized estimating equations were used to examine differences in uEtG-defined alcohol abstinence between groups over the pre-treatment and treatment periods separately, and differences between the pre-treatment and treatment periods when the groups were pooled.

Results: There were no group differences in uEtG-defined alcohol abstinence during the pre-treatment (p=0.61) or treatment periods (p=0.36). During the treatment period participants had four times higher odds of being abstinent (estimated marginal mean=60% [SD 24%]) than during the pre-treatment period (estimated marginal mean=27% [SD=26%]; OR=4.23 [CI=3.02-5.92], p <0.01).

Conclusions: There were no differences in uEtG-defined alcohol abstinence across groups during CM treatment; however, uEtG-defined alcohol abstinence was higher during treatment, relative to the pre-treatment period. These findings are noteworthy because this population was selected due to a level of pre-treatment uEtG-documented drinking that was consistent with CM non-response in a past study. A lack of group differences could be attributed to the usual CM intervention having a $403 higher maximum reinforcement magnitude, relative to the CM intervention that provided in this prior study.

Objective: To examine associations between prenatal wildfire smoke exposure and neonatal outcomes.

Design: Population-based retrospective analysis.

Setting: Washington State.

Participants: Data from 526,649 live births between 2010 and 2018.

Methods: We used pooled cross-sectional birth records data with computed number of wildfire smoke days to examine effects of prenatal exposure on gestational age at birth, birth weight, Apgar scores, and NICU admissions using regression analysis.

Results: We found small increases in gestational age with wildfire smoke exposure in trimester 1 (B = 0.003, 95% CI [.003, .004], p < .001), trimester 3 (B = 0.011, 95% CI [.011, .012], p < .001), and across pregnancy (B = 0.003, 95% CI [.003, .004], p < .001), and a small decrease in trimester 2 (B = -0.002, 95% CI [-.002, .002], p < .001). We observed small increases in birth weight with exposure in trimester 2 (B = 0.303, 95% CI [.201, .405], p < .001) and across pregnancy (B = 0.148, 95% CI = [.086, .210], p < .001). No differences were found for Apgar scores. Finally, we found a 0.003% increase in NICU admissions with exposure in trimesters 1 and 2 (OR = 1.00, 95% CI [1.002, 1.004], [1.001,1.004], respectively) and a 0.002% increase with exposure across pregnancy (OR = 1.002, 95% CI [1.001, 1.003]).

Conclusion: Prenatal exposure to wildfire smoke had limited effects on neonatal outcomes. Although associations with gestational age and birth weight aligned with prior studies, our findings were not clinically meaningful.

Introduction: We aimed to describe the health and well-being of family caregivers of Native Hawaiian and Pacific Islander (NHPI) adults living with Alzheimer’s disease and related dementias (ADRD), explore cultural values related to caregiving, and characterize barriers and facilitators to their health and well-being.

Methodology: Caregivers of NHPIs living with ADRD were recruited from across the United States to complete a multimethod study including a survey followed by an interview about their health and well-being.

Results: Eleven participants completed surveys, six of whom completed an interview. Themes included caring as a community, lōkahi (balance), and the importance of sleep, food, and physical activity. Cultural values included connection to cultural practices, kūpuna (elders) as cultural knowledge holders, and the kuleana (responsibility) of caregiving.

Discussion: Caregiving for an NHPI adult living with ADRD occurs beyond the dyad, and is a matter of family and community. Culturally-based interventions offered through community and healthcare organizations may be critical to promoting caregiver health.

We examined the prevalence of obesity among American Indian and Alaska Native (AIAN) young adults and to investigate the association between key social determinants of health (SDOH) and higher body mass index (BMI). We used the Indian Health Service Improving Delivery Data Project from fiscal year 2013. It includes data for 20,698 AIAN young adults aged 18-24 years. We added county-level measures of SDOH from the USDA Food Environment Atlas and the Census as contextual variables. We conducted stratified logistic regressions to understand the relationship between these SDOH indicators and odds of obesity. Thirty-seven percent of our sample was identified as obese (i.e., BMI ≥30). Individuals who lived in counties with lower levels of educational attainment and higher levels of poverty had higher odds of obesity than those who lived in counties with higher education and lower poverty (p < 0.0001). Counties with higher poverty rates had less access to social and environmental resources than the lower poverty rate counties (p < 0.0001). Federal and state governments should increase access to education and economic development opportunities to positively impact health outcomes.

This study examines the portrayal of contaminants in pilot whale in Faroese media from 1977 to 2022. Pilot whale is integral to Faroese culture but has come under scrutiny due to health concerns linked to contaminants. Given the role of media in shaping public understanding of health risks, our research assesses how four main Faroese media outlets have presented the issue to the public. We analysed 227 newspaper articles, radio, and television news stories, focusing on contaminants, mentioning of scientific studies or researchers, the demographic groups identified as at risk, and mentions of government advisories on whale meat consumption. Our findings indicate a predominant portrayal of contaminants as harmful, with a substantial emphasis on the risks to developing foetuses and children. Scientific studies, particularly those led by the Department of Occupational Medicine and Public Health in the Faroe Islands, were frequently cited. Despite varying advisories over the years, the narrative consistently highlighted the health risks associated with pilot whale consumption. This study contributes to broader discussions on environmental health communication by illustrating how localised media coverage can shape public risk perception, offering insights relevant to communities facing similar dilemmas between traditional hunting and public health.