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.

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.

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.

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.

Overcoming Vaccine Hesitancy Using Community-Based Efforts.

Vaccine acceptance by parents and caregivers remains a public health challenge that can potentially be addressed via community-based strategies. Such strategies might augment current vaccine hesitancy interventions occurring within medical homes. This article reviews the key challenges and advantages of evidence-based community strategies for overcoming parent/caregiver vaccine hesitancy, specifically (1) community-participatory vaccine hesitancy measurement, (2) communication approaches, (3) reinforcement techniques (eg, incentives, mandates), and (4) community-engaged partnerships (eg, vaccine champion training, vaccination in community settings). This article also discusses important considerations when vaccinating children and adolescents in non-primary care settings (school-based health centers, pharmacies, community events).

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.

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.

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.

Partnering With Faith-Based Organizations to Offer Flu Vaccination and Other Preventive Services.

In 2019, just one-half of Americans received their influenza vaccine, despite it being safe, effective, and important in preventing serious infection, hospitalization, and death. Black children receive fewer influenza vaccines than their White counterparts. Vaccine hesitancy can hinder influenza vaccine uptake and is partially fueled by ongoing systemic racism and historical abuse leading to medical mistrust in communities of color. Building trust may enhance the transfer of reliable vaccine information and may move people along the spectrum of vaccine intention. We sought to partner with faith-based organizations through a community influenza vaccination event to increase vaccination rates. By leveraging the reach and expertise of trusted voices, such as church "first ladies" and local community leaders, we were able to administer 600 pediatric influenza vaccines between 2016 and 2019. In addition, this event served as a platform to assess whether youth attendees had a place for regular medical care ("medical home") (>80% did in each year assessed) and to conduct preventive screenings. Most children, as reported by their caregivers, had recent medical check-ups (85% in 2016, 84% in 2017, and 82% in 2018). Of the children screened, more than one-third had an abnormal body mass index and one-half had abnormal dentition. By partnering with organizations that are well-embedded in the local community, such as faith-based organizations, health care groups may be able to maximize the impact of their health promotion campaigns.

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.

Disease management, coping, and functional disability in pediatric sickle cell disease.

BACKGROUND: Youth with sickle cell disease (SCD) experience chronic symptoms that significantly interfere with physical, academic, and social-emotional functioning. Thus, to effectively manage SCD, youth and caregivers must work collaboratively to ensure optimal functioning. The goal of the current study was to examine the level of involvement in disease management tasks for youth with SCD and their caregivers. The study also examined the relationship between involvement in disease management tasks, daily functioning, and coping skills. The study utilized collaborative care and disease management theoretical frameworks. METHODS: Youth and caregivers participated in the study during an annual research and education day event. Forty-seven patients with SCD aged 6 to 18 years and their caregivers completed questionnaires examining level of involvement in disease management tasks, youth functional disability, and youth coping strategies. Caregivers also completed a demographic and medical history form. RESULTS: Parents and youth agreed that parents were significantly more involved in disease management tasks than youth, although level of involvement varied by task. Decreased parent involvement was related to greater coping strategies used by patients, including massage, prayer, and positive thinking. Higher functional disability (lower functioning) was related to greater parent involvement in disease management tasks, suggesting that greater impairment may encourage increased parent involvement. CONCLUSIONS: Health professionals working with families of youth with SCD should discuss with parents and youth how disease management tasks and roles will be shared and transferred during adolescence. Parents and youth may also benefit from a discussion of these issues within their own families.

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.

Attitudes About COVID-19 and Health (ATTACH): Online Survey and Mixed Methods Study.

BACKGROUND: Behavioral mitigation strategies to slow the spread of COVID-19 have resulted in sweeping lifestyle changes, with short- and long-term psychological, well-being, and quality of life implications. The Attitudes About COVID-19 and Health (ATTACH) study focuses on understanding attitudes and beliefs while considering the impact on mental and physical health and the influence of broader demographic and geographic factors on attitudes, beliefs, and mental health burden. OBJECTIVE: In this assessment of our first wave of data collection, we provide baseline cohort description of the ATTACH study participants in the United Kingdom, the United States, and Mexico. Additionally, we assess responses to daily poll questions related to COVID-19 and conduct a cross-sectional analysis of baseline assessments collected in the UK between June 26 and October 31, 2020. METHODS: The ATTACH study uses smartphone app technology and online survey data collection. Participants completed poll questions related to COVID-19 2 times daily and a monthly survey assessing mental health, social isolation, physical health, and quality of life. Poll question responses were graphed using 95% Clopper-Pearson (exact) tests with 95% CIs. Pearson correlations, hierarchical linear regression analyses, and generalized linear models assessed relationships, predictors of self-reported outcomes, and group differences, respectively. RESULTS: By October 31, 2020, 1405, 80, and 90 participants had consented to participate in the UK, United States, and Mexico, respectively. Descriptive data for the UK daily poll questions indicated that participants generally followed social distancing measures, but worry and negative impacts on families increased as the pandemic progressed. Although participants generally reported feeling that the reasons for current measures had been made clear, there was low trust that the government was doing everything in its power to meet public needs. In the UK, 1282 participants also completed a monthly survey (94.99% [1326/1396] White, 72.22% [1014/1404] female, and 20.12% [277/1377] key or essential workers); 18.88% (242/1282) of UK participants reported a preexisting mental health disorder, 31.36% (402/1282) reported a preexisting chronic medical illness, and 35.11% (493/1404) were aged over 65; 57.72% (740/1282) of participants reported being more sedentary since the pandemic began, and 41.89% (537/1282) reported reduced access to medical care. Those with poorer mental health outcomes lived in more deprived neighborhoods, in larger households (Ps<.05), had more preexisting mental health disorders and medical conditions, and were younger than 65 years (all Ps<.001). CONCLUSIONS: Communities who have been exposed to additional harm during the COVID-19 pandemic were experiencing worse mental outcomes. Factors including having a medical condition, or living in a deprived neighborhood or larger household were associated with heightened risk. Future longitudinal studies should investigate the link between COVID-19 exposure, mental health, and sociodemographic and residential characteristics.

Perceived barriers to clinic appointments for adolescents with sickle cell disease.

PURPOSE: The purpose of this study was to examine perceived barriers to clinic attendance and strategies to overcome these barriers for adolescents with sickle cell disease. MATERIALS AND METHODS: This was a 2-phased study, which used focus groups (n=13) and individual semistructured interviews (n=32) with adolescent patients (aged 13 to 21 y) from 3 pediatric sickle cell clinics in the Midwest. RESULTS: Adolescents identified competing activities, health status, patient-provider relationships, adverse clinic experiences, and forgetting as barriers to clinic attendance. Calendars/reminders and parent reminders were the most commonly reported strategies to facilitate clinic attendance. Adolescents also reported the need for flexible scheduling and improved patient-provider communication. DISCUSSION: Adolescents with sickle cell disease and their families may benefit from ongoing education about the importance of attending routine clinic visits. Adherence to clinic appointments for adolescents may be enhanced by developing interventions to decrease forgetting (eg, phone call reminders or text messaging) and increase patient satisfaction with clinic visits. Scheduling appointments to accommodate busy schedules/scheduling conflicts (eg, late clinic hours), providing teen-friendly clinic environments, and using technology may also facilitate attendance.

Examining short-term stability of the Mealtime Interaction Coding System (MICS).

OBJECTIVE: This study assessed the stability of ratings on the McMaster Mealtime Interaction Coding System (MICS), an observational measure of family functioning, across three typical evening meals. METHODS: Participants included families of infants and toddlers with cystic fibrosis (n = 33) and with no chronic illness (n = 33). Three meals were videotaped across a 3-week period (M = 17.4 days) and involved a secondary data analysis from a larger study. RESULTS: Across both groups, test-retest reliability (paired correlation coefficients) was generally moderate, but significant, for all scales at each time point comparison. Analyses revealed no significant within-or between-group differences across time periods on healthy versus unhealthy ratings. CONCLUSIONS: This study highlights the limitations of coding a single mealtime observation or interpreting multiple observations using the MICS. Findings highlight that family, meal, illness, and assessment factors may impact variability in ratings over time.

Growth status in children and adolescents with sickle cell disease.

OBJECTIVES: To assess the BMI status of children and adolescents with sickle cell disease (SCD) and determine if zBMI status during adolescence is predicted by gender, childhood zBMI status, disease genotype, and healthcare utilization (emergency department visits or hospitalizations). STUDY DESIGN: Medical chart reviews were conducted on 133 patients followed through a regional Comprehensive Sickle Cell Center to obtain anthropometric measures and healthcare utilization data. Gender-specific BMI z-scores were calculated based on Centers for Disease Control (CDC) norms using Epi Info NutStat Software and SPSS generated syntax. Data were summarized categorically across two time periods for each participant: childhood (age 6-12 years) and adolescence (age 13-18 years). RESULTS: Males were three times more likely to be underweight in adolescence compared to CDC norms, whereas females were three times more likely to be obese in adolescence. In addition, regression analyses indicated that BMI in adolescence was predicted by gender, average weight in childhood, and the average number of emergency department visits. CONCLUSIONS: Children with SCD generally exhibit normal growth during childhood and adolescence, although 5-10% are at risk for poor growth or obesity. Prevention and intervention efforts should consider gender, average weight in childhood, and healthcare utilization factors.

Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease.

Pediatric sickle cell disease is a chronic illness for which recurrent pain is a ubiquitous experience. This study used quantitative and qualitative methods to examine relationships between patient and family coping and health care utilization in children with sickle cell disease and to assess parents' recommendations for ensuring patient and family-centered care. Participants were 53 parents of children aged 7 to 13 with sickle cell disease across three large urban children's hospitals. Data showed that positive patient coping was related to positive family functioning and lower health utilization. In addition, parents report the need for comprehensive health care approaches that meet the physical and psychologic needs of patients and families.

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.