Emotional Pre-Occupation And Variations in Stress Scores During Chronic Hemodialysis Management.

INTRODUCTION: Hemodialysis (HD) patients experience significant psychological stress related to HD. Different types of coping strategies are utilized by these patients to cope with this stress. METHODS: Variations in different types of coping strategies with the variations in HD-related stress scores and disparities by sex were assessed. HD patients aged 18 years and above who were seeking regular treatment in a specific HD-unit of a hospital in the upper Midwest, were surveyed between March 2020 and July 2020. RESULTS: Descriptive statistics, correlational analyses, and regression analyses were performed. Females could be expected to have emotional coping scores 8 units greater than males, as B = 8.017 for sex in the model, p =.000. Females could be expected to have coping scores 6.4 points higher than males when adjusted for stress levels, as: B= 6.351, p =0.001 for sex in the model. For each 1 point increase in Stress Score, the Coping Score could be expected to: increase 6.8 points when adjusted for sex, where B = 6.751 and p =0.000. CONCLUSION: Increased prevalence of emotional pre-occupation was only observed among female patients which increased with the increase in stress. Psychological interventions in female HD patients should be strongly considered in addressing emotional pre-occupation coping.

A Framework for Pursuing Child Health Equity in Pediatric Practice.

This article brings together several disparate frameworks to help outline a needed shift in pediatric practice to ensure child health equity. That shift involves moving from a commitment to equal care delivery to an explicit commitment to equitable health outcomes. The frameworks describe (1) the distinct domains of child health where inequity can be expressed, (2) the shortfalls of equal care delivery in meeting that promise, (3) a coherent typology of the barriers that drive health inequity and (4) a characterization of interventions as downstream, midstream, and upstream in nature.

Partnering with Families and Communities to Improve Child Health and Health Equity.

Pediatricians and other pediatric health providers collaborate with families and communities, including schools, health departments, and other partners to advance pediatric health challenges and health equity. This article will discuss best practices and guiding principles to support engagement and effective partnership with families and communities. Models for engaging families and communities while promoting health equity will also be discussed. Case studies and examples will be shared, as well as how they may be applied by pediatric health providers to promote child health.

Evaluation of a Community COVID-19 Vaccine Ambassador Train-the-Trainer Program.

Racially minoritized groups are more likely to experience COVID-19 vaccine hesitancy and have lower vaccination rates.  As part of a multi-phase community-engaged project, we developed a train-the-trainer program in response to a needs assessment. "Community vaccine ambassadors" were trained to address COVID-19 vaccine hesitancy. We evaluated the program's feasibility, acceptability, and impact on participant confidence for COVID-19 vaccination conversations. Of the 33 ambassadors trained, 78.8% completed the initial evaluation; nearly all reported gaining knowledge (96.8%) and reported a high confidence with discussing COVID-19 vaccines (93.5%). At two-week follow-up, all respondents reported having a COVID-19 vaccination conversation with someone in their social network, reaching an estimated 134 people. A program that trains community vaccine ambassadors to deliver accurate information about COVID-19 vaccines may be an effective strategy for addressing vaccine hesitancy in racially minoritized communities.

A systematic review examining caregivers' of color experiences with the diagnostic process of autism spectrum disorder.

LAY ABSTRACT: Children of color are diagnosed with autism later than White children. Caregivers of color are also more likely than White caregivers to report that their child's healthcare providers do not treat them as a partner, spend enough time with them, or respect their culture and values. We wanted to better understand the experiences of caregivers of color with the diagnostic process of autism spectrum disorder, from the time they discuss developmental concerns with their child's primary care provider to when the diagnosis is shared with them. We systematically reviewed the literature and found 15 articles that explored the experiences of caregivers of color. Caregivers of color described that they faced large-scale barriers, such as the cost of appointments, transportation, and long wait lists. They also reported negative experiences with providers, including providers not taking their concerns seriously, making assumptions about caregivers, and delaying referrals for an evaluation. Caregivers stated that their own lack of knowledge of autism spectrum disorder, stigma, their family's thoughts and opinions, and cultural differences between providers and caregivers served as barriers during the diagnostic process. Communication challenges were discussed and included use of medical and technical jargon, a lack of follow-up, language barriers, and difficulty obtaining high-quality interpreters. Some families described providers, other individuals, community networks, and self-advocacy as helpful during the diagnostic process. Large-scale changes are needed, such as increases in the number of providers who are trained in diagnosing Autism. Provider-level changes (e.g. implicit bias training) are also important for improving caregivers' experiences.

A mixed-methods analysis examining child and family needs following early brain injury.

Purpose:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (M = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment.Methods: Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child's behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed.Results: Results indicated some families continue to experience unresolved concerns relating to the child's injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping.Conclusion: Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting.IMPLICATIONS FOR REHABILITATIONEarly TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family.Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury.Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.

Healthy measures: Feasibility study of a moderate carbohydrate weight management intervention.

BACKGROUND: People of all weights need to prevent changes that could lead to obesity, a leading public health issue. OBJECTIVE: To assess the feasibility of Healthy Measures, a moderate carbohydrate (160-300 g/d) nutrition education and behavioral intervention. DESIGN: An uncontrolled intervention feasibility study including in-person group meetings every 2 weeks for 3 months. SAMPLE: Fifteen participants of normal and overweight BMI. MEASUREMENTS: We assessed feasibility of recruitment, attendance, retention and satisfaction as well as anthropometric measures and social cognitive variables with Healthy Measures, a nutrition-focused intervention with moderate carbohydrate portions that also emphasizes self-monitoring of anthropometric measurements. An intent-to-treat analysis was used. RESULTS: Healthy Measures was feasible, with 13 participants (86.7%) completing pre- and post-intervention assessments. Eight participants lost or maintained weight (53.3%); four gained weight. Healthy eating self-efficacy increased overall (t = -2.54, p = .024). Increased protein and fat intake was associated with weight loss, while reduced protein, carbohydrate, and fat intake resulted in weight gain. CONCLUSIONS: Healthy Measures shows promise for prevention of weight gain, with evidence of feasibility and positive outcomes. Further research is needed to establish efficacy relative to alternative approaches.

A Combined Reach Out and Read and Imagination Library Program on Kindergarten Readiness.

OBJECTIVES: Sharing books with preschoolers is known to improve kindergarten readiness. Both Reach Out and Read (ROR) and Dolly Parton's Imagination Library (DPIL) have shown positive effects on book sharing at home. We developed a novel combined ROR/DPIL program and examined the effect on kindergarten readiness assessment (KRA) scores. METHODS: At urban ROR primary care sites, patients <5 years living in the city school district were enrolled from July 2015 through January 2019 in the ROR/DPIL program when seen for a clinic visit. The literacy subtest of the KRA was examined for participants entering kindergarten in the fall of 2016, 2017, and 2018. The "on-track" rate of participants was compared with nonparticipant groups. RESULTS: A total of 797 kindergarten-aged ROR/DPIL participants were matched to Ohio KRA scores for 2016, 2017, and 2018 school years. The percentages of students "on-track" on KRA literacy subtests increased significantly by cohort (2016, 42.9% [95% confidence interval (CI): 34.9%-50.9%] versus 2017, 50.9% [95% CI: 44.9%-56.9%] versus 2018, 58.3% [95% CI: 53.3%-63.3%], P = .004). ROR/DPIL participants were compared with a proportionate stratified random sample of 1580 non-ROR/DPIL peers. On-track in literacy did not significantly differ between groups (2016 [P = .262], 2017 [P = .653], 2018 [P = .656]), nor did they differ after restricting analysis to economically disadvantaged children (2016 [P = .191], 2017 [P = .721], 2018 [P = .191]). CONCLUSIONS: With these results, we suggest that a program combining literacy anticipatory guidance at clinic visits and more books in the home can potentially improve kindergarten readiness. Pediatric health care providers can play an important role in promoting kindergarten readiness through literacy promotion.

Patient Perspectives on Gene Transfer Therapy for Sickle Cell Disease.

INTRODUCTION: Sickle cell disease (SCD) is a chronic genetic disease with high morbidity and early mortality; it affects nearly 100,000 individuals in the USA. Bone marrow transplantation, the only curative treatment, is available to less than 20% of patients because of a number of access barriers. Gene transfer therapy (GTT) has been shown to be curative in animal models and is approved for use in humans for early-phase studies at a few centers. GTT would offer a more accessible treatment option available to all patients. It is important to understand patient perspectives on GTT to help ensure human clinical trial success. METHODS: Two focus groups were conducted with younger (18-30 years) and older (31 years and older) adults with SCD to obtain data on patient knowledge and beliefs about GTT. Data from these two focus groups was used to develop a GTT educational brochure. A third focus group was conducted to obtain participant feedback on acceptability and feasibility of education and the brochure. RESULTS: Most adults, especially young adults, had little knowledge about GTT and expressed fear and uncertainty about the side effects of chemotherapy (e.g., hair loss, infertility), use of a human immunodeficiency virus (HIV)-derived viral vector, and potential for cancer risk. Participants wanted full transparency in educational materials, but advised researchers not to share the vector's relation to HIV because of cultural stigma and no HIV virus is used for the GTT vector. CONCLUSION: Older adults had more desire to participate in human clinical GTT trials than younger participants. When recruiting for trials, researchers should develop GTT educational materials that address participant lack of trust in the healthcare system, cultural beliefs, fears related to side effects, and include visual illustrations. Use of such materials will provide adults with SCD the information they need to fully evaluate GTT.

Society of Pediatric Psychology Diversity Award: Training Underrepresented Minority Students in Psychology.

Improving diversity, particularly among trainees and professionals from underrepresented ethnic minority backgrounds, has been a long-stated goal for the field of Psychology. Research has provided strategies and best practices, such as ensuring cultural sensitivity and relevance in coursework, clinical and research training, promoting a supportive and inclusive climate, providing access to cultural and community opportunities, and increasing insight and cultural competence among professionals (Rogers & Molina, 2006). Despite this, the rates of psychologists from ethnically diverse and underrepresented minority (URM) backgrounds remain low and few published studies have described programmatic efforts to increase diversity within the field. This paper describes the INNOVATIONS training model, which provides community and culturally related research experiences, graduate-school related advising, and mentoring to high school and college students. The paper also examines how the model may support enrollment of URM students in doctoral programs in psychology. Findings indicate that INNOVATIONS supported students' transition from high school and college to graduate programs (with approximately 75% of students enrolling in Master's and Doctoral programs). INNOVATIONS also supported students, including those from URM backgrounds, enrolling in doctoral programs (41.7%). Students who were trained in the research assistant track were most likely to enroll in psychology doctoral programs, perhaps as a result of the intensive time and training committed to research and clinical experiences. Data support the importance of research training for URM students pursuing psychology graduate study and the need to ensure cultural relevance of the training. Implications for clinical and pediatric psychology are discussed.

Urban Health Project: A Sustainable and Successful Community Internship Program for Medical Students.

BACKGROUND: Urban Health Project (UHP) is a mission and vision-driven summer internship at the University of Cincinnati College of Medicine that places first-year medical students at local community agencies that work with underserved populations. At the completion of their internship, students write Final Intern Reflections (FIRs). METHODS: Final Intern Reflections written from 1987 to 2012 were read and coded to both predetermined categories derived from the UHP mission and vision statements and new categories created from the data themselves. RESULTS: Comments relating to UHP's mission and vision were found in 47% and 36% of FIRs, respectively. Positive experiences outweighed negative by a factor of eight. Interns reported the following benefits: educational (53%), valuable (25%), rewarding (25%), new (10%), unique (6%), and life-changing (5%). CONCLUSIONS: Urban Health Project is successful in providing medical students with enriching experiences with underserved populations that have the potential to change their understanding of vulnerable populations.

School Performance and Disease Interference in Adolescents with Sickle Cell Disease.

Sickle cell disease (SCD) results in neuropsychological complications that place adolescents at higher risk for limited educational achievement. A first step to developing effective educational interventions is to understand the impact of SCD on school performance. The current study assessed perceptions of school performance, SCD interference and acceptability of educational support strategies in adolescents with SCD. To identify potential risk factors, the relationship between school performance, SCD interference and demographics were also examined. Thirty adolescents aged 12 to 20 completed demographics and SCD school performance questionnaires. Approximately 37% of participants reported receiving special education services, but more than 60% reported that SCD interfered with their school performance. Females reported that SCD impacted their schooling more than males (X2 (1, N = 30) = 5.00, p < .05). Study findings provide important insights into demographic risk factors and support the need for individualized health and educational plans for adolescents with SCD.

Understanding the experiences of youth living with sickle cell disease: a photovoice pilot.

A Photovoice pilot was conducted with youth living with sickle cell disease (SCD), in order to further understand their lived experience and examine the acceptability, feasibility, and utility of this method in this population. SCD is an inherited genetic condition whose primary symptom is severe pain. Youth were able to reflect on their experiences with SCD using Photovoice and the adapted SHOWeD method. Parents and youth found Photovoice to be valuable for children and adolescents with SCD. Emerging themes included the impact of SCD, the importance of everyday activities and interests, and the importance of family and support.

¡Hazlo bien! A participatory needs assessment and recommendations for health promotion in growing Latino communities.

PURPOSE: To investigate the health needs of a rapidly growing Latino community and understand priorities for developing culturally sensitive health promotion strategies. APPROACH: A participatory research approach was selected to understand health challenges and opportunities for health engagement in the community. SETTING: Norwood, Ohio, a small community in southwest Ohio. PARTICIPANTS: Latino adults living, working, or accessing services in Norwood. METHOD: Trained community researchers collected survey data from 198 participants at multiple community "points of contact" and door-to-door in more isolated neighborhoods. Survey data were aggregated using descriptive statistics. Two focus groups were conducted with 25 community members, transcribed, and analyzed using principles of thematic analysis. Participants' health concerns, health behaviors, and access to/experiences with health care were assessed. RESULTS: Findings indicated significant health concerns, including overweight (43.2%) and obesity (28.6%), mental health challenges (anxiety 15.7%; depression 15.0%), and oral health concerns (23.0%). In addition, community members described barriers to accessing health care and strategies for preventing health problems and promoting positive health. Participants also discussed perceived discrimination and the need to address isolation within their community. CONCLUSION: Methods and findings from the ¡Hazlo Bien! participatory needs assessment are likely to be useful to those designing health promotion programs in quickly growing Latino communities where there are limited health services and few existing social support networks.

The community leaders institute: an innovative program to train community leaders in health research.

An emerging best practice of addressing health and improving health disparities in communities is ensuring that academic health centers (AHCs) are engaged with area schools, primary care practices, and community advocates as equal partners in research, services, and programs. The literature documents the importance of ensuring that academic-community collaboration is based on equity, trust, and respect and that there is capacity (time and resources) and a shared culture (language, skills, and applied knowledge) for accomplishing mutual goals in academic-community research partnerships. It is also essential that an academic-community collaboration result in tangible and measurable goals and outcomes for both the target community and the AHC. Currently, the models for implementing best practices in community health partnerships, especially training programs, are limited.This article summarizes the goals and outcomes for the Community Leaders Institute (CLI), a six-week innovative leadership development training program designed to enhance academic-community research, integrate the interests of community leaders and AHC researchers, and build research capacity and competencies within the community. On the basis of two years of outcome data, the CLI is achieving its intended goals of engaging faculty as trainer-scholars while promoting academic-community partnerships that align with community and AHC priorities. The training and collaborative research paradigm used by the CLI has served to accelerate AHC-community engagement and integration efforts, as CLI graduates are now serving on AHC steering, bioethics, and other committees.

The Community Engagement and Translational Research Speaker Series: An Innovative Model of Health Education.

INTRODUCTION: New models of health education are needed as research is becoming increasingly translational and as health care models are being applied to both medical and community settings. The Community Engagement and Translational Research Speaker Series is an innovative model for community health education that engages academic and community participants in shared learning. METHOD: Over the previous four years, eight Speaker Series events each consisting of three, distinct educational activities have been developed and implemented. Attendees provided ratings on each series event and a subset of them completed a knowledge and process evaluation. RESULTS: The Speaker Series has been well attended by both academic and community representatives (N = 1,573). Evaluation data indicate that participants were highly satisfied across the three events (95%). Data also indicate that the Speaker Series met its intended goals of incorporating community feedback (91%) and increasing knowledge of community resources (98%), identifying health priorities (85%), and developing academic-community partnerships (95%). CONCLUSION: The Speaker Series has been evaluated positively by both academic and community representatives. This health education model is comprehensive and could be replicated by medical schools and universities striving to enhance community health education programs and curricula.

Integrating interactive web-based technology to assess adherence and clinical outcomes in pediatric sickle cell disease.

Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6-21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.

Feasibility of web-based technology to assess adherence to clinic appointments in youth with sickle cell disease.

Web-based tools to improve clinic attendance have been effectively used in pediatric conditions but have not been tested in pediatric sickle cell disease (SCD). The goal of this pilot study was to assess barriers to clinic attendance and the feasibility of a web-based assessment tool to promote problem solving around clinic appointments. Study participants included 30 youths with SCD (M=11.7±3.5 y; 57% male participants; 60% HbSS; 20% HbSC; 17% HB+Thal) and their primary caregivers. Medical chart review indicated that 61% of participants attended at least 2 SCD clinic appointments in the past year. The primary barrier to clinic attendance was inability to take off from work/school (33%). Regarding feasibility and acceptability, the computerized program was well received by patients and caregivers, with youth and caregivers reporting a high degree of usefulness and preference for computerized assessment. Results suggest that this innovative approach holds promise and should be tested on a larger sample of youth with SCD.