"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study.

INTRODUCTION: In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice. METHODS AND ANALYSIS: A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis. ETHICS AND DISSEMINATION: This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study's CABs. A lay summary will also be disseminated to all participants.

Evaluating Human Papillomavirus eHealth in Hmong Adolescents to Promote Vaccinations: Pilot Feasibility Study.

BACKGROUND: Human papillomavirus (HPV) is a common sexually transmitted infection, causing multiple cancers, including cervical, penile, and anal. Infection and subsequent health risks caused by HPV can be diminished by HPV vaccination. Unfortunately, vaccination rates among Hmong Americans are substantially lower than those among other racial and ethnic groups, despite having higher cervical cancer rates than non-Hispanic White women. Such disparities and sparse literature highlight the need for innovative and culturally appropriate educational interventions to improve HPV vaccine rates in Hmong Americans. OBJECTIVE: We aimed to develop and evaluate the effectiveness and usability of an innovative web-based eHealth educational website, the Hmong Promoting Vaccines website (HmongHPV website), for Hmong-American parents and adolescents to improve their knowledge, self-efficacy, and decision-making capacities to obtain HPV vaccinations. METHODS: Through social cognitive theory and community-based participatory action research process, we created a theory-driven and culturally and linguistically appropriate website for Hmong parents and adolescents. We conducted a pre-post intervention pilot study to assess the website's effectiveness and usability. Overall, 30 Hmong-American parent and adolescent dyads responded to questions about HPV and HPV vaccine knowledge, self-efficacy, and decision-making at preintervention, 1 week after intervention, and at the 5-week follow-up. Participants responded to survey questions about website content and processes at 1 and 5 weeks, and a subset of 20 dyad participants participated in telephone interviews 6 weeks later. We used paired t tests (2-tailed) to measure the change in knowledge, self-efficacy, and decision-making processes, and used template analysis to identify a priori themes for website usability. RESULTS: Participants' HPV and HPV vaccine knowledge improved significantly from pre- to postintervention stage and follow-up. Knowledge scores increased from preintervention to 1 week after intervention for both parents (HPV knowledge, P=.01; vaccine knowledge, P=.01) and children (HPV knowledge, P=.01; vaccine knowledge, P<.001), which were sustained at the 5-week follow-up. Parents' average self-efficacy score increased from 21.6 at baseline to 23.9 (P=.007) at post intervention and 23.5 (P=.054) at follow-up. Similar improvements were observed in the teenagers' self-efficacy scores (from 30.3 at baseline to 35.6, P=.009, at post intervention and 35.9, P=.006, at follow-up). Collaborative decision-making between parents and adolescents improved immediately after using the website (P=.002) and at follow-up (P=.02). The interview data also revealed that the website's content was informative and engaging; in particular, participants enjoyed the web-based quizzes and vaccine reminders. CONCLUSIONS: This theory-driven, community-based participatory action research-designed and culturally and linguistically appropriate educational website was well received. It improved Hmong parents' and adolescents' knowledge, self-efficacy, and decision-making processes regarding HPV vaccination. Future studies should examine the website's impact on HPV vaccine uptake and its potential for broader use across various settings (eg, clinics and schools).

Population pharmacokinetics, pharmacodynamics and pharmacogenetics modelling of oxypurinol in Hmong adults with gout and/or hyperuricemia.

AIMS: The aim of this study was to quantify identifiable sources of variability, including key pharmacogenetic variants in oxypurinol pharmacokinetics and their pharmacodynamic effect on serum urate (SU). METHODS: Hmong participants (n = 34) received 100 mg allopurinol twice daily for 7 days followed by 150 mg allopurinol twice daily for 7 days. A sequential population pharmacokinetic pharmacodynamics (PKPD) analysis with non-linear mixed effects modelling was performed. Allopurinol maintenance dose to achieve target SU was simulated based on the final PKPD model. RESULTS: A one-compartment model with first-order absorption and elimination best described the oxypurinol concentration-time data. Inhibition of SU by oxypurinol was described with a direct inhibitory Emax model using steady-state oxypurinol concentrations. Fat-free body mass, estimated creatinine clearance and SLC22A12 rs505802 genotype (0.32 per T allele, 95% CI 0.13, 0.55) were found to predict differences in oxypurinol clearance. Oxypurinol concentration required to inhibit 50% of xanthine dehydrogenase activity was affected by PDZK1 rs12129861 genotype (-0.27 per A allele, 95% CI -0.38, -0.13). Most individuals with both PDZK1 rs12129861 AA and SLC22A12 rs505802 CC genotypes achieve target SU (with at least 75% success rate) with allopurinol below the maximum dose, regardless of renal function and body mass. In contrast, individuals with both PDZK1 rs12129861 GG and SLC22A12 rs505802 TT genotypes would require more than the maximum dose, thus requiring selection of alternative medications. CONCLUSIONS: The proposed allopurinol dosing guide uses individuals' fat-free mass, renal function and SLC22A12 rs505802 and PDZK1 rs12129861 genotypes to achieve target SU.

Hmong microbiome ANd Gout, Obesity, Vitamin C (HMANGO-C): A phase II clinical study protocol.

BACKGROUND: Hmong men in Minnesota exhibit a high prevalence of gout and hyperuricemia. Although evidence of vitamin C's effectiveness as a treatment for gout is mixed, analysis of therapeutic benefit based on an individual's multiomic signature may identify predictive markers of treatment success. OBJECTIVES: The primary objective of the Hmong Microbiome ANd Gout, Obesity, Vitamin C (HMANGO-C) study was to assess the effectiveness of vitamin C on serum urate in Hmong adults with and without gout/hyperuricemia. The secondary objectives were to assess if 1) vitamin C impacts the taxonomic and functional patterns of microbiota; 2) taxonomic and functional patterns of microbiota impact vitamin C's urate-lowering effects; 3) genetic variations impact vitamin C's urate-lowering effects; 4) differential microbial biomarkers exist for patients with or without gout; and 5) there is an association between obesity, gut microbiota and gout/hyperuricemia. METHODS: This prospective open-labelled clinical trial was guided by community-based participatory research principles and conducted under research safety restrictions for SARS-CoV-2. We aimed to enroll a convenient sample of 180 Hmong adults (120 with gout/hyperuricemia and 60 without gout/hyperuricemia) who provided medical, demographic, dietary and anthropometric information. Participants took vitamin C 500mg twice daily for 8 weeks and provided pre-and post- samples of blood and urine for urate measurements as well as stool samples for gut microbiome. Salivary DNA was also collected for genetic markers relevant to uric acid disposition. EXPECTED RESULTS: We expected to quantify the impact of vitamin C on serum urate in Hmong adults with and without gout/hyperuricemia. The outcome will enhance our understanding of how gut microbiome and genomic variants impact the urate-lowering of vitamin C and associations between obesity, gut microbiota and gout/hyperuricemia. Ultimately, findings may improve our understanding of the causes and potential interventions that could be used to address health disparities in the prevalence and management of gout in this underserved population. TRIAL REGISTRATION: ClinicalTrials.gov NCT04938024 (first posted: 06/24/2021).

Mobile health technology for hypertension management with Hmong and Latino adults: mixed-methods community-based participatory research.

OBJECTIVE: To identify Hmong and Latino adults' perspectives about a mHealth-based care model for hypertension (HTN) management involving blood pressure (BP) self-monitoring, electronic transmission of BP readings, and responsive HTN medication adjustment by a provider team. DESIGN: We conducted a mixed-methods formative study with 25 Hmong and 25 Latino participants with HTN at an urban federally-qualified health center. We used a tool to assess HTN knowledge and conducted open-ended interviews to identify perspectives about mHealth-based care model. RESULTS: While most participants agreed that lowering high blood pressure decreased the risk of strokes, heart attacks, and kidney failure, there were gaps in medical knowledge. Three major themes emerged about the mHealth-based care model: (1) Using mHealth technology could be useful, especially if assistance was available to patients with technological challenges; (2) Knowing blood pressures could be helpful, especially to patients who agreed with doctors' medical diagnosis and prescribed treatment; (3) Transmitting blood pressures to the clinic and their responsive actions could feel empowering, and the sense of increased surveillance could feel entrapping. Some people may feel empowered since it could increase patient-provider communication without burden of clinic visits and could increase involvement in BP control for those who agree with the medical model of HTN. However, some people may feel entrapped as it could breach patient privacy, interfere with patients' lifestyle choices, and curtail patient autonomy. CONCLUSIONS: In general, Hmong and Latino adults responded positively to the empowering aspects of the mHealth-based care model, but expressed caution for those who had limited technological knowledge, who did not agree with the medical model and who may feel entrapped. In a shared decision-making approach with patients and possibly their family members, health care systems and clinicians should explore barriers and potential issues of empowerment and entrapment when offering a mHealth care model in practice.

"We will do whatever it takes": Understanding Socioecological Level Influences on Hmong-American Adolescents and Parents' Perceptions of the Human Papillomavirus Vaccine.

Human papillomavirus (HPV) vaccination completion rates in Asian-American populations are substantially lower than most White Americans. Our objective was to identify the knowledge, perceptions, and decision-making processes about HPV vaccinations in the Hmong population, an Asian-American group with increased risks of HPV-related cancers. We conducted eight focus groups with Hmong adolescents (n = 12) and parents (n = 13) to learn about barriers, facilitators, and decision-making processes regarding general vaccinations and the HPV vaccine. The focus group results were analyzed using thematic analysis, informed by the socioecological model and asset lens. Findings showed that at the individual level, Hmong adolescents and parents had low HPV and HPV vaccine awareness levels (barrier) and strong desires to learn about HPV and the HPV vaccine (facilitator). Community-level barriers included salient narratives about traumatic experiences with vaccines and vaccine research, while facilitators included strong community connections. At the institutional level, barriers included structural constraints in health care settings, while facilitators included ease of obtaining vaccines at school-based clinics and provider authoritative decision-making. Additionally, a range of decision-making processes between parents, adolescents, and providers were present, with parents expressing a strong appeal to engage in more shared decision-making with providers. A linguistically and culturally specific HPV educational program for Hmong adolescents and parents could address the barriers and build on facilitators and assets to promote HPV vaccine uptake in this growing Asian-American community.

Pharmacogenomic variabilities in geo-ancestral subpopulations and their clinical implications: Results of collaborations with Hmong in the United States.

Underrepresentation of subpopulations within geo-ancestral groups engaged in research can exacerbate health disparities and impair progress toward personalized medicine. This is particularly important when implementing pharmacogenomics which uses genomic-based sources of variability to guide medication selection and dosing. This mini-review focuses on pharmacogenomic findings with Hmong in the United States and their potential clinical implications. By actively engaging Hmong community in pharmacogenomic-based research, several clinically relevant differences in allele frequencies were observed within key pharmacogenes such as CYP2C9 and CYP2C19 in Hmong compared to those in either East Asians or Europeans. Additionally, using state-of-the-art genome sequencing approaches, Hmong appear to possess novel genetic variants within CYP2D6, a critical pharmacogene affecting pharmacokinetics of a broad range of medications. The allele frequency differences and novel alleles in Hmong have translational impact and real-world clinical consequences. For example, Hmong patients exhibited a lower warfarin stable dose requirement compared to East Asian patients. This was predicted based on Hmong's unique genetic and non-genetic factors and confirmed using real-world data from clinical practice settings. By presenting evidence of the genetic uniqueness and its translational impact within subpopulations, such as the Hmong, we hope to inspire greater inclusion of other geo-ancestrally underrepresented subpopulations in pharmacogenomic-based research.

Diverse community leaders' perspectives about quality primary healthcare and healthcare measurement: Qualitative community-based participatory research.

BACKGROUND: Healthcare quality measurements in the United States illustrate disparities by racial/ethnic group, socio-economic class, and geographic location. Redressing healthcare inequities, including measurement of and reimbursement for healthcare quality, requires partnering with communities historically excluded from decision-making. Quality healthcare is measured according to insurers, professional organizations and government agencies, with little input from diverse communities. This community-based participatory research study aimed to amplify the voices of community leaders from seven diverse urban communities in Minneapolis-Saint Paul Minnesota, view quality healthcare and financial reimbursement based on quality metric scores. METHODS: A Community Engagement Team consisting of one community member from each of seven urban communities -Black/African American, Lesbian-Gay-Bisexual-Transgender-Queer-Two Spirit, Hmong, Latino/a/x, Native American, Somali, and White-and two community-based researchers conducted listening sessions with 20 community leaders about quality primary healthcare. Transcripts were inductively analyzed and major themes were identified. RESULTS: Listening sessions produced three major themes, with recommended actions for primary care clinics. #1: Quality Clinics Utilize Structures and Processes that Support Healthcare Equity. #2: Quality Clinics Offer Effective Relationships, Education, and Health Promotion. #3: Funding Based on Current Quality Measures Perpetuates Health Inequities. CONCLUSION: Community leaders identified ideal characteristics of quality primary healthcare, most of which are not currently measured. They expressed concern that linking clinic payment with quality metrics without considering social and structural determinants of health perpetuates social injustice in healthcare.

Mobile Health Intervention to Close the Guidelines-To-Practice Gap in Hypertension Treatment: Protocol for the mGlide Randomized Controlled Trial.

BACKGROUND: Suboptimal treatment of hypertension remains a widespread problem, particularly among minorities and socioeconomically disadvantaged groups. We present a health system-based intervention with diverse patient populations using readily available smartphone technology. This intervention is designed to empower patients and create partnerships between patients and their provider team to promote hypertension control. OBJECTIVE: The mGlide randomized controlled trial is a National Institutes of Health-funded study, evaluating whether a mobile health (mHealth)-based intervention that is an active partnership between interprofessional health care teams and patients results in better hypertension control rates than a state-of-clinical care comparison. METHODS: We are recruiting 450 participants including stroke survivors and primary care patients with elevated cardiovascular disease risk from diverse health systems. These systems include an acute stroke service (n=100), an academic medical center (n=150), and community medical centers including Federally Qualified Health Centers serving low-income and minority (Latino, Hmong, African American, Somali) patients (n=200). The primary aim tests the clinical effectiveness of the 6-month mHealth intervention versus standard of care. Secondary aims evaluate sustained hypertension control rates at 12 months; describe provider experiences of system usability and satisfaction; examine patient experiences, including medication adherence and medication use self-efficacy, self-rated health and quality of life, and adverse event rates; and complete a cost-effectiveness analysis. RESULTS: To date, we have randomized 107 participants (54 intervention, 53 control). CONCLUSIONS: This study will provide evidence for whether a readily available mHealth care model is better than state-of-clinical care for bridging the guideline-to-practice gap in hypertension treatment in health systems serving diverse patient populations. TRIAL REGISTRATION: Clinicaltrials.gov NCT03612271; https://clinicaltrials.gov/ct2/show/NCT03612271. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/25424.

Differences in Predicted Warfarin Dosing Requirements Between Hmong and East Asians Using Genotype-Based Dosing Algorithms.

INTRODUCTION: Warfarin's narrow therapeutic index and high variability in dosage requirements make dosage selection critical. Genetic factors are known to impact warfarin dosage selection. The Hmong are a unique Asian subpopulation numbering over 278,000 in the United States whose participation in genetics-based research is virtually nonexistent. The translational significance of early reports of warfarin pharmacogene differences in Hmong has not been evaluated. OBJECTIVES: (i) To validate previously identified allele frequency differences relevant to warfarin dosing in Hmong versus East Asians and (ii) to compare predicted warfarin sensitivity and maintenance doses between a Hmong population and an East Asian cohort. METHOD: DNA collected from two independent cohorts (n=236 and n=198) of Hmong adults were genotyped for CYP2C9 (*2, *3), VKORC1 (G-1639A), and CYP4F2 (*3). Allele frequencies between the combined Hmong cohort (n=433) and East Asians (n=1165) from the 2009 International Warfarin Pharmacogenetics Consortium (IWPC) study were compared using a χ2 test. Percentages of Hmong and East Asian participants predicted to be very sensitive to warfarin were compared using a χ2 test, and the predicted mean warfarin maintenance dose was compared with a t test. RESULTS: The allele frequencies of CYP2C9*3 in the combined Hmong cohort and CYP4F2*3 in the VIP-Hmong cohort are significantly different from those in East Asians (18.9% vs 3.0%, p<0.001 and 9.8% vs 22.1%, p<0.001, respectively). Comparing the combined Hmong cohort to the East Asian cohort, the percentage of participants predicted to be very sensitive to warfarin was significantly higher (28% vs 5%, p<0.01) and the mean predicted warfarin maintenance dose was significantly lower (19.8 vs 21.3 mg/week, p<0.001), respectively. CONCLUSION: The unique allele frequencies related to warfarin when combined with nongenetic factors observed in the Hmong translate into clinically relevant differences in predicted maintenance dose requirements for Hmong versus East Asians.

Potential Clinical Relevance of Differences in Allele Frequencies Found within Very Important Pharmacogenes between Hmong and East Asian Populations.

OBJECTIVES: Implementing pharmacogenetics for very important pharmacogenes (VIPs) holds the promise of improving clinical outcomes through optimal medication selection and dosing. However, significant differences in the frequency of actionable variants in VIPs may exist within subpopulations of a given ancestral group. Furthermore, these differences can potentially impact drug selection and dosing. The purpose of this study was to ascertain allele frequencies for VIPs and to predict medication requirements using Clinical Pharmacogenetics Implementation Consortium (CPIC) guidelines in Hmong and compare with published data for East Asians. METHODS: Using a community-based participatory action research approach, DNA collected from 194 Hmong adults living in the United States was analyzed for 22 genetic variants within eight VIPs (CYP2C9, CYP2C19, CYP4F2, DPYD, G6PD, SLCO1B1, TPMT, VKORC1). Allele frequencies for VIPs and predicted medication requirements using CPIC guidelines were compared between Hmong participants and East Asians. RESULTS: Significant differences in allele frequencies between the Hmong and East Asians were found for 23% (5/22) of the CPIC-actionable variants tested. Allele frequencies for VIPs in Hmong versus East Asians were 16.6% versus 3.4% in CYP2C9*3A, 42.2% versus 29.0% for CYP2C19*2, 0.3% versus 8.3% in CYP2C19*3, 6.5% versus 22.1% in CYP4F2*3, and 3.6% versus 0.1% in SLCO1B1*5, respectively. These differences significantly influenced predicted medication usage recommendations in warfarin, simvastatin, and phenytoin between Hmong and East Asians. CONCLUSIONS: Important differences in allele frequencies for key genetic variants influencing selection of medications and dosages were found between the Hmong and East Asians. The magnitude and nature of these differences can be expected to result in different medication recommendations for the Hmong relative to East Asians.

Primary care clinicians' perspectives about quality measurements in safety-net clinics and non-safety-net clinics.

BACKGROUND: Quality metrics, pay for performance (P4P), and value-based payments are prominent aspects of the current and future American healthcare system. However, linking clinic payment to clinic quality measures may financially disadvantage safety-net clinics and their patient population because safety-net clinics often have worse quality metric scores than non-safety net clinics. The Minnesota Safety Net Coalition's Quality Measurement Enhancement Project sought to collect data from primary care providers' (PCPs) experiences, which could assist Minnesota policymakers and state agencies as they create a new P4P system. Our research study aims are to identify PCPs' perspectives about 1) quality metrics at safety net clinics and non-safety net clinics, 2) how clinic quality measures affect patients and patient care, and 3) how payment for quality measures may influence healthcare. METHODS: Qualitative interviews with 14 PCPs (4 individual interviews and 3 focus groups) who had worked at both safety net and non-safety net primary care clinics in Minneapolis-St Paul Minnesota USA metropolitan area. Qualitative analyses identified major themes. RESULTS: Three themes with sub-themes emerged. Theme #1: Minnesota's current clinic quality scores are influenced more by patients and clinic systems than by clinicians. Theme #2: Collecting data for a set of specific quality measures is not the same as measuring quality healthcare. Subtheme #2.1: Current quality measures are not aligned with how patients and clinicians define quality healthcare. Theme #3: Current quality measures are a product of and embedded in social and structural inequities in the American health care system. Subtheme #3.1: The current inequitable healthcare system should not be reinforced with financial payments. Subtheme #3.2: Health equity requires new metrics and a new healthcare system. Overall, PCPs felt that the current inequitable quality metrics should be replaced by different metrics along with major changes to the healthcare system that could produce greater health equity. CONCLUSION: Aligning payment with the current quality metrics could perpetuate and exacerbate social inequities and health disparities. Policymakers should consider PCPs' perspectives and create a quality-payment framework that does not disadvantage patients who are affected by social and structural inequities as well as the clinics and providers who serve them.

US Immigration Westernizes the Human Gut Microbiome.

Many US immigrant populations develop metabolic diseases post immigration, but the causes are not well understood. Although the microbiome plays a role in metabolic disease, there have been no studies measuring the effects of US immigration on the gut microbiome. We collected stool, dietary recalls, and anthropometrics from 514 Hmong and Karen individuals living in Thailand and the United States, including first- and second-generation immigrants and 19 Karen individuals sampled before and after immigration, as well as from 36 US-born European American individuals. Using 16S and deep shotgun metagenomic DNA sequencing, we found that migration from a non-Western country to the United States is associated with immediate loss of gut microbiome diversity and function in which US-associated strains and functions displace native strains and functions. These effects increase with duration of US residence and are compounded by obesity and across generations.

Somali, Latino and Hmong parents' perceptions and approaches about raising healthy-weight children: a community-based participatory research study.

OBJECTIVE: Immigrants in the USA are confronted with health disparities, including childhood obesity and obesity-related chronic diseases. We aimed to identify perceptions of childhood body weight, approaches to raising healthy children and desires for supportive programmes of Somali, Latino and Hmong (SLM) parents in the Twin Cities, Minnesota, USA. DESIGN: Using community-based participatory research, ten focus groups (FG) were conducted with sixty-seven parents (n 28 Somali, three FG; n 19 Latino, four FG; n 20 Hmong, three FG) of 3-12-year-old children in their native language. Demographic information was collected. RESULTS: SLM parents perceived that health is not necessarily weight-based; childhood obesity is caused by overeating, eating unhealthy foods and sedentary activities; traditional foods are generally healthy while American foods are generally unhealthy; and healthy children are inherently physically active. Parents identified their goals as feeding children so they would be healthy and happy, helping them be active and safe, and teaching them to cook traditional foods to be self-sufficient and maintain their cultural identity. Parents were challenged by children's unhealthy food and sedentary preferences, their own uncertainties about healthy foods and behaviours, and structural factors. Parents thought interventions could help them with these challenges, including information about healthy foods, age-appropriate portion sizes, safe places to be active and strategies tailored to their cultural norms. CONCLUSIONS: SLM parents are trying to raise healthy-weight children based on their understanding of children's health, weight, diet and physical activity, while dealing with social, economic and environmental challenges and trying to maintain cultural identity and traditions.

Examining unanswered questions about the home environment and childhood obesity disparities using an incremental, mixed-methods, longitudinal study design: The Family Matters study.

There are disparities in the prevalence of childhood obesity for children from low-income and minority households. Mixed-methods studies that examine home environments in an in-depth manner are needed to identify potential mechanisms driving childhood obesity disparities that have not been examined in prior research. The Family Matters study aims to identify risk and protective factors for childhood obesity in low-income and minority households through a two-phased incremental, mixed-methods, and longitudinal approach. Individual, dyadic (i.e., parent/child; siblings), and familial factors that are associated with, or moderate associations with childhood obesity will be examined. Phase I includes in-home observations of diverse families (n=150; 25 each of African American, American Indian, Hispanic/Latino, Hmong, Somali, and White families). In-home observations include: (1) an interactive observational family task; (2) ecological momentary assessment of parent stress, mood, and parenting practices; (3) child and parent accelerometry; (4) three 24-hour child dietary recalls; (5) home food inventory; (6) built environment audit; (7) anthropometry on all family members; (8) an online survey; and (9) a parent interview. Phase I data will be used for analyses and to inform development of a culturally appropriate survey for Phase II. The survey will be administered at two time points to diverse parents (n=1200) of children ages 5-9. The main aim of the current paper is to describe the Family Matters complex study design and protocol and to report Phase I feasibility data for participant recruitment and study completion. Results from this comprehensive study will inform the development of culturally-tailored interventions to reduce childhood obesity disparities.

Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.

Advancing precision medicine relies in part on examining populations that may exhibit unique genetic variants that impact clinical outcomes. Failure to include diverse populations in genomic-based research represents a health disparity. We implemented a community-based participatory research (CBPR) process with the Hmong community in Minnesota, who were refugees from Laos, in order to assess the feasibility of conducting genomic and pharmacogenomic-based research for genetic variants that are relevant to the Hmong community. Our Hmong Genomics Board, consisting of Hmong and non-Hmong professionals, used CBPR principles and built on previous formative research to create and implement culturally and linguistically appropriate informed consent processes for Hmong people at six community venues. The Board chose genetic variants for diabetes risk and warfarin response as relevant to the community. The Institutional Review Board approved aggregate but not individual return of results. Two hundred thirty-seven Hmong participants with mean (range) age of 30.2 (18-81) years and diverse levels of education (22% without and 75% with high-school education) provided saliva for genetic (DNA) analyses. Eighty-five percent of participants agreed to store DNA for future analyses, 82% agreed to share DNA with other researchers, and 78% agreed to be contacted for future studies. Twenty-five elders refused to participate because they wanted individual results. Aggregate results were shared with all participants. This CBPR approach proved highly successful to obtain informed consent and recruit a sample from the Hmong community for a genomic and pharmacogenomic study. Investment in the CBPR process may prove successful to address the gap of genomic information in under-represented communities.

Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research With Communities.

Background: In 1998, the North American Primary Care Research Group (NAPCRG) adopted a groundbreaking Policy Statement endorsing responsible participatory research (PR) with communities. Since that time, PR gained prominence in primary care research. Objectives: To reconsider the original 1998 Policy Statement in light of increased uptake of PR, and suggest future directions and applications for PR in primary care. This work contributed to an updated Policy Statement endorsed by NAPCRG in 2015. Methods: 32 university and 30 community NAPCRG-affiliated research partners, convened a workshop to document lessons learned about implementing processes and principles of PR. This document emerged from that session and reflection and discussion regarding the original Policy Statement, the emerging PR literature, and our own experiences. Results: The foundational principles articulated in the 1998 Policy Statement remain relevant to the current PR environment. Lessons learned since its publication include that the maturation of partnerships is facilitated by participatory processes that support increased community responsibility for research projects, and benefits generated through PR extend beyond research outcomes. Future directions that will move forward the field of PR in primary care include: (i) improve assessment of PR processes to better delineate the links between how PR teams work together and diverse PR outcomes, (ii) increase the number of models incorporating PR into translational research from project inception to dissemination, and (iii) increase application of PR approaches that support patient engagement in clinical settings to patient-provider relationship and practice change research. Conclusion: PR has markedly altered the manner in which primary care research is undertaken in partnership with communities and its principles and philosophies continue to offer means to assure that research results and processes improve the health of all communities.

Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.

Historically, Hmong refugees in the USA were distrustful of Western medicine, medicines, and medical research due to concerns about harm and experimentation. Current Hmong concerns about genomics research are not well known. Our research aims were to identify cultural and ethical issues about conducting genomic studies in the Hmong community. Using a community-based participatory action process, the West Side Hmong Genomics Research Board conducted a qualitative exploratory research study that included semistructured interviews with five Hmong key informants and five focus groups with 42 Hmong adults near Saint Paul, Minnesota. We used a thematic analysis approach to qualitatively analyze the data. Identified concepts of heredity included characteristics that are passed between the generations: physical features; character traits; some behaviors; some diseases; and probably not response to medicines, although individual variations to medicines are known. Most participants were willing to join genomic research projects to help themselves and community. Others refused to participate: they did not want to know future disease risk; did not want doctors to know their genes; did not trust doctors with their blood; and did not know if they would benefit from results. Ethically, many participants were in favor of confidentiality, but wanted to know their personal results; many were willing to agree to genetic storage of anonymous samples; all agreed with individual consent, not family or community consent; and none were concerned about social stigma from genetic testing about chronic diseases and medications. The Hmong Genomics Board will build upon these concepts to create, conduct, and evaluate culturally-appropriate genomic and pharmacogenomic research projects relevant to community interests.