Short sleep duration and interest in sleep improvement in a multi-ethnic cohort of diverse women participating in a community-based wellness intervention: an unmet need for improvement.

BACKGROUND: Disparities in sleep duration are a modifiable contributor to increased risk for cardiometabolic disorders in communities of color. We examined the prevalence of short sleep duration and interest in improving sleep among a multi-ethnic sample of women participating in a culturally tailored wellness coaching program and discussed steps to engage communities in sleep health interventions. METHODS: Secondary analysis of data from a randomized trial were used. The wellness coaching trial utilized a Community-Based Participatory Research (CBPR) approach. Data were from the baseline survey and baseline wellness coaching notes. Short sleep duration was defined as < 7 h of self-reported sleep. Participants were prompted to set a goal related to healthy eating/physical activity and had the opportunity to set another goal on any topic of interest. Those who set a goal related to improving sleep or who discussed a desire to improve sleep during coaching were classified as having an interest in sleep improvement. Analyses utilized multivariable models to evaluate factors contributing to short sleep and interest in sleep improvement. We present our process of discussing results with community leaders and health workers. RESULTS: A total of 485 women of color participated in the study. Among these, 199 (41%) reported short sleep duration. In adjusted models, Blacks/African Americans and Native Hawaiians/Pacific Islanders had higher odds of reporting < 7 h of sleep than Hispanics/Latinas. Depression symptoms and self-reported stress management scores were significantly associated with short sleep duration. Interest in sleep improvement was noted in the wellness coaching notes of 52 women (10.7%); sleep was the most common focus of goals not related to healthy eating/physical activity. African Immigrants/Refugees and African Americans were less likely to report interest in sleep improvement. Community leaders and health workers reported lack of awareness of the role of sleep in health and discussed challenges to obtaining adequate sleep in their communities. CONCLUSION: Despite the high prevalence of short sleep duration, interest in sleep improvement was generally low. This study highlights a discrepancy between need and interest, and our process of community engagement, which can inform intervention development for addressing sleep duration among diverse women.

Exploring the impact of virtual SPIKES training on genetic counselors' confidence to deliver difficult news.

Delivering difficult news is a common occurrence in genetic counseling. This is evidenced by widespread instruction among genetic counseling programs. There is a disconnect in the confidence level of being able to deliver difficult news (DDN) following educational training across healthcare disciplines. Other healthcare professions have addressed this issue with simulation-based training based on the SPIKES protocol, a stepwise process for delivering difficult news. To our knowledge, there is limited research that investigates the impact of simulation-based training in delivering difficult news for genetic counselors. Our aim was to develop simulation-based training in how to deliver difficult news for genetic counselors and analyze the extent to which it increased their confidence to deliver difficult news. Board-certified genetic counselors from all specialties were recruited to participate in a 2-h training session which included the opportunity to practice delivering difficult news. We collected self-reported confidence scores in each of the SPIKES steps from 16 genetic counselors pre- and post-intervention. Participants answered open-ended evaluations about the program's strengths, weaknesses, and gaps in delivering difficult news content. Almost all participants (N = 15) stated that they had gained confidence in delivering difficult news following training completion. Confidence significantly improved in four of seven SPIKES steps. Participants found strengths of the training program to be in their ability to practice with a simulated patient, to reference concrete examples, and to follow the program easily. The results of this study suggest that post-graduate training in how to deliver difficult news using the SPIKES protocol may strengthen genetic counselors' confidence in performing this important skill.

Parents' decision-making for their foetus or neonate with a severe congenital heart defect.

BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.

Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives.

PURPOSE: Death from suicide has an estimated heritability of ~50%. Research may soon allow calculation of polygenic risk scores (PRS) for suicide death, which could be marketed directly to consumers. This raises ethical concerns. Understanding how consumers will utilize this information is urgent. METHODS: We conducted three focus groups involving suicide attempt survivors ("survivors") and family members of suicide decedents ("family members") to gauge their reactions to this technology. Questions focused on positive and negative implications of PRS results. Qualitative research methods were used to summarize studio results. RESULTS: Eight survivors and 13 family members participated. Both groups postulated benefits of suicide PRS, including prevention and reduced stigma. Their concerns ranged from increased stigma to adverse psychological effects. They suggested that suicide PRS should be accompanied by extensive education and counseling. Participants experienced no adverse effects. CONCLUSION: Many ethical, legal, and social implications of genetic testing for suicide risk are highly salient to community stakeholders. Our participants hoped that suicide PRS could have significant individual and community-level benefits, but had concerns about effects in several domains, including stigma, access to insurance and employment, and increased anxiety and depression.

Diverse caregivers' HPV vaccine-related awareness and knowledge.

Objectives: To assess factors associated with HPV vaccine-related awareness and knowledge among caregivers of adolescents from five ethnic community groups in Utah.Design: For this community-based participatory research study, we surveyed N = 228 caregivers of teens aged 11-17 years from African American, African refugee, American Indian/Alaskan Native, Hispanic/Latino, and Native Hawaiian/Pacific Islander community groups in Utah about their HPV vaccine awareness and knowledge.Results: Participants exhibited high awareness of cervical cancer (71.05%), moderate awareness of HPV (53.95%), and low awareness of the HPV vaccine (46.49%). HPV vaccine-related knowledge was mostly worse, with fewer than half the participants reporting knowing that HPV can cause cervical cancer (46.93%), that most people are infected with HPV at some point in their lives (28.95%), that HPV is asymptomatic in females (36.40%) and males (37.28%), that the HPV vaccine is recommended for adolescent females (41.67%) and males (36.40%), and that the HPV vaccine requires more than one dose (27.19%). HPV vaccine-related awareness and knowledge were significantly associated with race/ethnicity, educational attainment, income, occupation, birthplace, parents' birthplace, English usage, health insurance coverage, type of health insurance, and child having a primary care provider (all p < 0.05). HPV vaccine-related knowledge (p < 0.05) and awareness (p < 0.05) of caregivers were associated with a child in the household receiving the HPV vaccine.Conclusion: Our findings indicate a need to develop educational interventions in collaboration with diverse communities in Utah. We underscore the importance of promoting knowledge about the existence of the HPV vaccine, as well as deeper HPV vaccine-related issues (e.g. HPV risks, treatment, and recommendations).

Diverse Families' Experiences with HPV Vaccine Information Sources: A Community-Based Participatory Approach.

Current sources of publicly available human papillomavirus (HPV) information may not adequately meet the needs of diverse families. This study sought to describe associations between sociodemographic and acculturation factors, and sources of HPV information among diverse parents and caregivers. Community organizations purposively recruited participants from African American, African refugee, Hispanic/Latino, American Indian, and Native Hawaiian and Pacific Islander communities for a 21-item survey (N = 228). Ninenty-three of these participants also participated in ten focus groups conducted in three languages. Descriptive statistics and Fishers' Exact Test for Count Data were produced and triangulated with focus group data to provide additional context. Overall, HPV vaccine awareness and knowledge in the five communities was low. This study found that a greater proportion of lower-acculturated participants had heard of HPV through personal networks (foreign-born = 50 % vs US-born = 30 %, p < 0.05; medium acculturation = 60 % vs high acculturation = 26 %, p = 0.01), while greater proportions of US-born participants reported media sources (49 % vs foreign-born = 29 %, p < 0.05). Across communities, healthcare system sources were described as important and preferred sources of HPV information. Hearing about the HPV vaccine from healthcare settings was significantly associated with increased accuracy in HPV vaccine knowledge (p < 0.05). Communities described a need for more in-depth information about the HPV vaccine, and culturally and linguistically appropriate educational materials. Culturally-competent delivery of HPV information through the healthcare system sources may be important in improving knowledge and acceptability of the HPV vaccine among diverse families.

Microbes As Friends, Not Foes: Shifting the Focus from Pathogenesis to Symbiosis.

Until about two decades ago, the standard method of studying a microbe was to isolate it, grow it in culture, stain it, and examine it under a microscope. Today, new genomic tools are helping expand our view of the microbial world. Instead of viewing them as "germs" to be eliminated, we are beginning to perceive our microbes as an extension of ourselves - an important organ with unique functions essential to our well-being. Scientists even came up with a new term, "microbiome," to define our microbes' genes as an important counterpart to our human genome. With new information about the human microbiome comes the challenge of shifting biology students' focus from casting microbes as pathogens toward appreciating microbes as symbionts. "The Human Microbiome," a curriculum supplement produced by the Genetic Science Learning Center, emphasizes that microbes living in and on our bodies perform neutral and beneficial functions, that human microbiota form thriving ecosystems, and that disruptions to our microbial ecosystems may have consequences. In this article, we describe the curriculum materials, provide strategies for incorporating this cutting-edge topic into biology classrooms, list connections to the Next Generation Science Standards, and report on recent research testing the curriculum supplement's effectiveness for student learning.

Beyond the Central Dogma: Bringing Epigenetics into the Classroom.

Epigenetics is the study of how external factors and internal cellular signals can lead to changes in the packaging and processing of DNA sequences, thereby altering the expression of genes and traits. Exploring the epigenome introduces students to environmental influences on our genes and the complexities of gene expression. A supplemental curriculum module developed by the Genetic Science Learning Center (GSLC) at the University of Utah brings epigenetics to high school and undergraduate classrooms through a range of online and paper-based activities. We describe these activities and provide strategies for incorporating both introductory and more advanced materials that explore "cell memory," epigenetic inheritance, nutrition, and emerging connections between the epigenome and behavior. Finally, we outline recent reach on student learning gains using the GSLC's epigenetics module and provide connections to the Next Generation Science Standards.

Research to classrooms: a co-designed curriculum brings All of Us data to secondary schools.

OBJECTIVES: We describe new curriculum materials for engaging secondary school students in exploring the "big data" in the NIH All of Us Research Program's Public Data Browser and the co-design processes used to collaboratively develop the materials. We also describe the methods used to develop and validate assessment items for studying the efficacy of the materials for student learning as well as preliminary findings from these studies. MATERIALS AND METHODS: Secondary-level biology teachers from across the United States participated in a 2.5-day Co-design Summer Institute. After learning about the All of Us Research Program and its Data Browser, they collaboratively developed learning objectives and initial ideas for learning experiences related to exploring the Data Browser and big data. The Genetic Science Learning Center team at the University of Utah further developed the educators' ideas. Additional teachers and their students participated in classroom pilot studies to validate a 22-item instrument that assesses students' knowledge. Educators completed surveys about the materials and their experiences. RESULTS: The "Exploring Big Data with the All of Us Data Browser" curriculum module includes 3 data exploration guides that engage students in using the Data Browser, 3 related multimedia pieces, and teacher support materials. Pilot testing showed substantial growth in students' understanding of key big data concepts and research applications. DISCUSSION AND CONCLUSION: Our co-design process provides a model for educator engagement. The new curriculum module serves as a model for introducing secondary students to big data and precision medicine research by exploring diverse real-world datasets.

Obesity-Preventive Behaviors and Improvements in Depression among Diverse Utah Women Receiving Coaching from Community Health Workers.

OBJECTIVES: This study evaluated how high versus low-intensity community wellness coaching and health behaviors were associated with changes in depression screen results over one year. METHODS: This was an analysis of secondary data collected in a 12-month obesity-related community health worker (CHW) program for 485 Utah women of color. Depression screen (Patient Health Questionnaire-2 score ³3) and self-reported fruit/vegetable consumption and physical activity (FV/PA) were recorded quarterly. Associations between FV/PA and changes in depression screen over time were evaluated in multivariable models. RESULTS: Positive depression screen prevalence declined over 12 months (21.7% to 9.5%) with no difference between study arms. Overall, FV ³5 times/day (AOR=1.5; 95% CI 1.0-2.2), any PA (AOR=3.1; 95% CI 1.5-6.4), and muscle strengthening activities (AOR=1.13; 95% CI 1.01-1.26) were associated with improved depression screen results over time. CONCLUSION: These results indicate value in addressing and evaluating depression in obesity-related interventions in underserved communities.

Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots.

OBJECTIVES: We assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS. METHODS: We conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 participants) in the Mountain States region (i.e., AZ, CO, MT, NM, NV, TX, UT, and WY). RESULTS: Participants identified several challenges to implementing policies for storage of and research on residual newborn blood specimens. Themes that emerged from the data were public health relevancy; improvement of parental knowledge; impact of enhanced parental involvement; concerns over ownership, privacy, and confidentiality; identification of secondary research uses; and role of advisory committees. CONCLUSIONS: Participants indicated that secondary uses of residual specimens entailed opportunities for improvements in NBS programs but also carried significant risks for their programs. Addressing concerns from stakeholders will be necessary for state-level adoption of national recommendations.

Community engagement during COVID: A field report from seven CTSAs.

INTRODUCTION: Prior to the COVID pandemic, many CTSAs employed face-to-face interactions to conduct most of their community engagement (CE) activities. During the COVID pandemic, such engagement had to be curtailed and alternatives needed to be formulated. In addition, Community Engaged Research (CEnR) teams refocused their efforts to address this public health crisis. METHODS: To obtain a general understanding of how CTSAs have conducted CE and CEnR during the COVID pandemic, we invited seven CTSA CE leaders to provide brief field reports of their activities during the pandemic. This included how their approaches to CE and CEnR were modified during the COVID-19 pandemic and key lessons learned. RESULTS: We found that despite numerous challenges, all seven CTSAs CE cores were able to successfully carry out CE and CEnR. We also found that the fundamental principles of meaningful and authentic stakeholder engagement were of paramount importance during the pandemic. Through virtual approaches, all sites had considerable success in maintaining CE in during the COVID pandemic. They also leveraged existing bi-directional community partnerships to carry out meaningful and impactful research. This included both new COVID CEnR and also innovative approaches to sustain prior non-COVID research. CONCLUSIONS: These findings suggest that academic-community partnerships must be fostered and sustained over the many years so that when such crises emerge, all partners can build on existing trust and mutual respect. The lessons learned and the new tools and approaches developed would be key in addressing any such future public health emergencies.

Study protocol for a randomised clinical trial of a decision aid and values clarification method for parents of a fetus or neonate diagnosed with a life-threatening congenital heart defect.

INTRODUCTION: Parents who receive the diagnosis of a life-threatening, complex heart defect in their fetus or neonate face a difficult choice between pursuing termination (for fetal diagnoses), palliative care or complex surgical interventions. Shared decision making (SDM) is recommended in clinical contexts where there is clinical equipoise. SDM can be facilitated by decision aids. The International Patient Decision Aids Standards collaboration recommends the inclusion of values clarification methods (VCMs), yet little evidence exists concerning the incremental impact of VCMs on patient or surrogate decision making. This protocol describes a randomised clinical trial to evaluate the effect of a decision aid (with and without a VCM) on parental mental health and decision making within a clinical encounter. METHODS AND ANALYSIS: Parents who have a fetus or neonate diagnosed with one of six complex congenital heart defects at a single tertiary centre will be recruited. Data collection for the prospective observational control group was conducted September 2018 to December 2020 (N=35) and data collection for two intervention groups is ongoing (began October 2020). At least 100 participants will be randomised 1:1 to two intervention groups (decision aid only vs decision aid with VCM). For the intervention groups, data will be collected at four time points: (1) at diagnosis, (2) postreceipt of decision aid, (3) postdecision and (4) 3 months postdecision. Data collection for the control group was the same, except they did not receive a survey at time 2. Linear mixed effects models will assess differences between study arms in distress (primary outcome), grief and decision quality (secondary outcomes) at 3-month post-treatment decision. ETHICS AND DISSEMINATION: This study was approved by the University of Utah Institutional Review Board. Study findings have and will continue to be presented at national conferences and within scientific research journals. TRIAL REGISTRATION NUMBER: NCT04437069 (Pre-results).

Comparison of Video, App, and Standard Consent Processes on Decision-Making for Biospecimen Research: A Randomized Controlled Trial.

Obtaining informed consent for bloodspot research from newborn screening is particularly challenging due to the hectic environment of the postnatal period and the relatively abstract nature of future, unspecified research on the biospecimens. A randomized controlled trial was conducted in three Michigan hospitals to compare two different consent processes (video and interactive tablet "app") with standard brochure-based consent in the Michigan BioTrust for Health. Results indicated higher knowledge scores for the video and app groups as well as significantly higher scores on satisfaction, amount of information, and clarity with the information provided. More research is needed to find the right amount of information for informed decision-making, and additional feasibility studies are needed to assess implementation strategies.

The Community Faces Model: Community, University and Health Department Partners Thriving Together for Effective Health Education.

We use a community based participatory research approach to examine the processes of collaboration and communication, as well as the relational interactions of one community focused health promotion coalition, the Community Faces of Utah (CFU). We assess the evolution, structure, successes, and challenges of the coalition, comprised of five distinct cultural communities, a state health department, and a university. Researchers from the university collaborated with the coalition to find that CFU is an equitable, collaborative partnership of diverse leaders that functions successfully. Shared values and trusting relationships emerged over time, forming the basis for group interaction. A community liaison to facilitate interaction and collaboration was an essential element of the success of this partnership. The experience of CFU can guide other multi-sectoral partnerships in developing functionality consistent with achieving community driven objectives.

Factors Associated with Human Papillomavirus Vaccination Among Diverse Adolescents in a Region with Low Human Papillomavirus Vaccination Rates.

Introduction: This study assesses the sociodemographic facilitators and barriers to human papillomavirus (HPV) vaccination for diverse teens in a region with low HPV vaccination rates. Materials and Methods: In this community-based participatory research study, we surveyed adult family members of teens aged 11-17 years from African American, African refugee, American Indian/Alaskan Native, Hispanic/Latino, and Native Hawaiian/Pacific Islander community groups in Salt Lake City, Utah. Bivariate analyses assessed associations between sociodemographic characteristics and, respectively, HPV vaccine receipt and intentions for vaccination. Barriers to vaccination were also investigated. Results: Only 20% of participants had vaccinated at least one of their children with at least one dose of the HPV vaccine. HPV vaccination was significantly related to caregiver age (p=0.035), race/ethnicity (p=0.001), educational attainment (p=0.006), annual household income (p=0.0454), years in the United States (p=0.023), and caregiver parent birthplace (p=0.008). Among caregivers with unvaccinated children, intention to vaccinate was significantly related to race/ethnicity (p=0.048 for daughters; p=0.003 for sons), caregiver parent birthplace (p=0.023 for sons), health insurance coverage (p=0.028 for daughters; p=0.047 for sons), and type of health insurance coverage (p=0.008 for sons). The most frequently cited barriers to HPV vaccination were lack of knowledge about the HPV vaccine, costs, side effects, and child not being sexually active. Conclusions: Our results show substantially lower HPV vaccine coverage than both national and state rates, signaling the urgent need for multipronged HPV vaccination interventions within these communities; strategies are discussed.

A Primer for Developing Measures of Science Content Knowledge for Small-Scale Research and Instructional Use.

The credibility of conclusions made about the effectiveness of educational interventions depends greatly on the quality of the assessments used to measure learning gains. This essay, intended for faculty involved in small-scale projects, courses, or educational research, provides a step-by-step guide to the process of developing, scoring, and validating high-quality content knowledge assessments. We illustrate our discussion with examples from our assessments of high school students' understanding of concepts in cell biology and epigenetics. Throughout, we emphasize the iterative nature of the development process, the importance of creating instruments aligned to the learning goals of an intervention or curricula, and the importance of collaborating with other content and measurement specialists along the way.

Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.

IMPORTANCE: Research clearly indicates that current approaches to newborn blood spot screening (NBS) education are ineffective. Incorporating NBS education into prenatal care is broadly supported by lay and professional opinion. OBJECTIVE: To determine the efficacy and effect of prenatal education about newborn screening and use of residual dried blood spots (DBS) in research on parental knowledge, attitudes, and behaviors. DESIGN, SETTING, AND PARTICIPANTS: A randomized clinical trial of prenatal educational interventions, with outcomes measured by survey at 2 to 4 weeks postpartum. Participants were recruited from obstetric clinics in Salt Lake City, Utah; San Francisco, California; and the Bronx, New York. Eligible women were English- or Spanish-speaking adults and did not have a high-risk pregnancy. A total of 901 women were enrolled. Participants who completed the follow-up survey included 212 women in the usual care group (70% retention), 231 in the NBS group (77% retention), and 221 women in the NBS + DBS group (75% retention). Those who completed the survey were similar across the 3 groups with respect to age, ethnicity, race, education, marital status, income, obstetric history, and language. INTERVENTIONS: Participants were randomized into 1 of 3 groups: usual care (n = 305), those viewing an NBS movie and brochure (n = 300), and those viewing both the NBS and DBS movies and brochures (n = 296). MAIN OUTCOMES AND MEASURES: Two to four weeks postpartum, women completed a 91-item survey by telephone, addressing knowledge, attitudes, and behavior with respect to opting out of NBS or DBS for their child. RESULTS: A total of 901 women (mean age, 31 years) were randomized and 664 completed the follow-up survey. The total correct responses on the knowledge instrument in regard to NBS were 69% in the usual care group, 79% in the NBS group, and 75% in the NBS + DBS group, a significant between-group difference (P < .05). Although all groups showed strong support for NBS, the percentage of women who were "very supportive" was highest in the NBS group (94%), followed by the NBS + DBS group (86%) and was lowest in the usual care group (73%) (P < .001). The interventions were not associated with decisions to decline newborn screening or withdraw residual DBS. Nine women stated that they had declined NBS (all the usual care group; P < .001). With respect to DBS, 5 participants indicated that they contacted the health department to have their child's sample withdrawn after testing: 3 in the NBS + DBS group and 2 in the usual care group (P = .25). CONCLUSIONS AND RELEVANCE: Educational interventions can be implemented in the prenatal clinic, using multimedia tools and electronic platforms. Prenatal education is effective in increasing postnatal knowledge and support for these programs. These results are relevant to other contexts in which residual clinical specimens and data are used for research purposes. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT02676245.

Science Translator: An Interview with Louisa Stark.

The Genetics Society of America's Elizabeth W. Jones Award for Excellence in Education recognizes significant and sustained impact on genetics education. The 2015 awardee, Louisa Stark, has made a major impact on global access to genetics education through her work as director of the University of Utah Genetic Science Learning Center. The Center's Learn.Genetics and Teach.Genetics websites are the most widely used online genetic education resources in the world. In 2014, they were visited by 18 million students, educators, scientists, and members of the public. With over 60 million page views annually, Learn.Genetics is among the most used sites on the Web.