Abstract Objective To compare hesitancy toward a future COVID-19 vaccine for children of various sociodemographic groups in a major metropolitan area, and to understand how parents obtain information about COVID-19. Methods Cross-sectional online survey of parents with children < 18 years old in Chicago and Cook County, Illinois, in June 2020. We used logistic regression to determine the odds of parental COVID-19 vaccine hesitancy (VH) for racial/ethnic and socioeconomic groups, controlling for sociodemographic factors and the sources where parents obtain information regarding COVID-19. Results Surveys were received from 1702 parents and 1425 were included in analyses. Overall, 33% of parents reported VH for their child. COVID-19 VH was higher among non-Hispanic Black parents compared with non-Hispanic White parents (Odds Ratio (OR) 2.65, 95% Confidence Interval (CI): (1.99–3.53), parents of publicly insured children compared with privately insured (OR 1.93, (1.53–2.42)) and among lower income groups. Parents receive information about COVID-19 from a variety of sources, and those who report using family, internet and health care providers as information sources (compared to those who don’t use each respective source) had lower odds of COVID-19 VH for their children. Conclusions The highest rates of hesitancy toward a future COVID-19 vaccine were found in demographic groups that have been the most severely affected by the pandemic. These groups may require targeted outreach efforts from trusted sources of information in order to promote equitable uptake of a future COVID-19 vaccine.
Abstract Background: Insufficient recruitment of groups underrepresented in medical research threatens the generalizability of research findings and compounds inequity in research and medicine. In the present study, we examined barriers and facilitators to recruitment of underrepresented research participants from the perspective of clinical research coordinators (CRCs). Methods: CRCs from one adult and one pediatric academic medical centers completed an online survey in April-May 2022. Survey topics included: participant language and translations, cultural competency training, incentives for research participation, study location, and participant research literacy. CRCs also reported their success in recruiting individuals from various backgrounds and completed an implicit bias measure. Results: Surveys were completed by 220 CRCs. CRCs indicated that recruitment is improved by having translated study materials, providing incentives to compensate participants, and reducing the number of in-person study visits. Most CRCs had completed some form of cultural competency training, but most also felt that the training either had no effect or made them feel less confident in approaching prospective participants from backgrounds different than their own. In general, CRCs reported having greater success in recruiting prospective participants from groups that are not underrepresented in research. Results of the implicit bias measure did not indicate that bias was associated with intentions to approach a prospective participant. Conclusions: CRCs identified several strategies to improve recruitment of underrepresented research participants, and CRC insights aligned with insights from research participants in previous work. Further research is needed to understand the impact of cultural competency training on recruitment of underrepresented research participants.
The 2009 H1N1 pandemic and seasonal influenza outbreaks have, at times, overwhelmed capacity in children's hospitals.1 The COVID-19 pandemic is different. Relatively few children have become severely ill when infected with SARS-CoV-2.2 In 4 weeks from March to April 2020, the Centers for Disease Control and Prevention found a 42% reduction in emergency department (ED) visits nationally compared with the prior year and noted the steepest decrease in visits was among children <15 years.3 A large, urban US children's hospital reported a decline in ED visits during the first 16 weeks of 2020 with visits of higher acuity for similar chief complaints compared with 2017 to 2019.4 These authors also observed smaller proportions of visits made by Black and publicly insured children. Little is known about factors associated with caregiver hesitancy to seek ED care for their children during the pandemic. Chicago was significantly impacted by COVID-19 through June 2020. In March, the Governor of Illinois issued a stay-at-home executive order limiting health care seeking to emergencies and COVID-19 care, closing schools to in-person instruction, and restricting daycare to groups of 10 or fewer children of essential workers. The stay-at-home order was associated with substantial reductions in health care utilization by children in metropolitan Chicago and northern Illinois; well-child examinations recovered to prepandemic levels by June while other visit types remained suppressed through summer 2020.5 In the first week of May 2020, we conducted a Web-based survey to characterize hesitancy to seek emergency care for children. We sampled caregivers of patients <18 years old from Ann & Robert H. Lurie Children's Hospital of Chicago, an independent, quaternary children's health system. We used the electronic medical record (EMR) to identify children who: (1) had an appointment canceled or rescheduled due to COVID-19 (n = 21,737); (2) were seen on at least two occasions in the year prior with a chronic condition, such as asthma or prematurity, that placed them in our influenza vaccine registry (n = 7966); or (3) were seen in our ED between March 16 and April 22, 2020 (n = 2387). The survey was developed by the study team and fielded in English and Spanish. Survey questions and response options were refined based on feedback from pilot testing with experts in health services research and community engagement. This study was considered exempt human subjects research by the Lurie Children's Institutional Review Board. Survey links were distributed via short messaging service (SMS) message or email on May 6, 2020, using the Qualtrics survey platform (Qualtrics). Reminders were sent to nonrespondents on May 10, 2020, the day before the first phase of reopening in Illinois. Reopening allowed elective medical procedures and essential gatherings of 10 or fewer people. Respondents were offered a $5 eGift card in appreciation of their time. We sought 4000 respondents based on available institutional resources for participant incentives. Our outcome of interest was response to the following question: "Assume the healthcare facility is following all current guidelines to reduce the spread of the COVID-19 virus. How likely is it that you would bring your child for an ER visit in person TODAY if they needed it?" Response options included very likely, somewhat likely, and unlikely. Caregivers were considered hesitant to seek emergency care if their response was "unlikely." Predictor variables included survey responses and data available in the EMR. Variables obtained via survey included child's race/ethnicity, caregiver age, caregiver language preference, child's current health insurance coverage, child's health care utilization during the stay-at-home order, preference for an in-person or telemedicine visit for two hypothetical acute conditions (sore throat and head injury), COVID-positive individual in the household, agreement with stay-at-home orders, and compliance with stay-at-home orders. EMR-derived variables included child age, sex, and home address on file. The child's home zip code was used to determine the rate of COVID cases in that area (dichotomized as less than and equal to or greater than the 75th percentile for metropolitan Chicago). The census tract of the child's home address was used to assign the Child Opportunity Index 2.0 (COI) score6 in the Chicago metropolitan area for that census tract, which was collapsed to three categories for analysis: very low and low, moderate, or high and very high. The COI 2.0 is a composite measure of 29 census tract–level indicators across three domains: education, health and environment, and social and economic opportunity. Indicators are weighted based on their impact on child health, development, and economic outcomes. We utilized chi-square statistics and calculated proportions with 95% confidence intervals (CIs) to test for associations between hesitancy to seek emergency care and predictor variables stratified by COI. We identified 33,513 children from the EMR who met study recruitment criteria, and 31,568 (94%) of phone numbers successfully received a SMS message with the survey link. Surveys were started by 4282 (response rate = 14%) and completed by 4147 (completion rate = 97%) caregivers. The distribution of respondents reflected the distribution of clinical groups selected for study recruitment and child age categories, with slightly higher responses from English-speaking caregivers of White, non-Latinx, and privately insured children per the EMR. Spanish language surveys were utilized by 6% of respondents. Most responses were collected from SMS message links (95%, n = 3705) and from caregivers whose child had an appointment canceled/rescheduled (70%, n = 3013). Responses were received by 949 caregivers of children in the influenza vaccine registry and 320 who had visited the Lurie Children's ED in March or April. We excluded 21 respondents who did not answer the hesitancy question and 230 children without address information. There were 3896 responses analyzed. Caregiver-reported child race/ethnicity was 48% White, non-Latinx; 32% Latinx of any race; 9% Black/African American, non-Latinx; 7% multiple races or other race; and 4% Asian, non-Latinx. The children were 46% female and 24% younger than 36 months, 21% 3 to 5 years, 29% 6 to 11 years, and 26% 12 to 18 years. Caregiver-reported payer was 60% private, 39% public, and 1% other/uninsured/no response. Overall, 23% (n = 879) of caregivers were hesitant to seek emergency care. Hesitancy differed across COI levels; 27% of the 1305 caregivers from very low/low COI areas were hesitant compared with 23% of the 740 caregivers from moderate COI areas and 19% of the 1851 caregivers from high/very high COI areas (p < 0.001). Table 1 includes results for other variables associated with hesitancy in bivariate analyses (p < 0.05). Black/African American, Latinx, or Asian race/ethnicity; child age older than 3 years; caregiver age 18 to 30 years; language preference other than English; public payer; high COVID-positivity-rate zip code; and having a canceled/rescheduled appointment were associated with more hesitancy. Receipt of Lurie Children's ED care and preference for an in-person visit if child had sore throat or head injury were associated with less hesitancy. Proportions of caregivers hesitant to seek ED care across study variables and stratified by COI also are presented in Table 1. During the first wave of COVID-19 in metropolitan Chicago, we found that nearly one in four caregivers were hesitant to seek ED care for their child with a hypothetical emergency condition. Prior to declines in acute health care utilization associated with the COVID-19 pandemic,3-5 higher ED utilization has been observed among children who are African American/Black or Latinx and publicly insured.7 Researchers focused attention on low-acuity ED visits for children.7, 8 We observed greater hesitancy within demographic groups that have previously relied on the ED for pediatric care and among caregivers from areas with lower COI and higher community rates of COVID-19 infection. Potential explanations for these findings include lower health literacy about emergency care seeking and higher perceived risks of contracting COVID-19 when traveling through the community or in health care settings. Greater hesitancy to seek ED care among caregivers who preferred telemedicine visits for evaluation of a child's sore throat or head injury may signal that ED care-seeking behaviors are influenced by expanded telemedicine services. Hesitancy to seek ED care may have negative consequences. The literature describes COVID-19–related delays in pediatric care seeking that have resulted in severe diabetic ketoacidosis, complicated bacterial infections, and missed opportunities for earlier cancer diagnoses.9, 10 Our findings are subject to limitations. Our survey was conducted in metropolitan Chicago at the height of the first wave of the COVID-19 pandemic and may not be generalizable to other areas or time frames. Responses were collected from caregivers who were able to receive SMS messages or email requests to participate. Response rates were low and response bias is possible, but respondents were similar to nonrespondents in terms of child sex, age categories, and COI distribution. Addresses listed in the EMR may be outdated and could result in misclassification bias for COI or community-level COVID-19 rates. Finally, the hypothetical scenario may have brought different emergency conditions to mind and caregiver responses may not translate to care-seeking behaviors when faced with an emergency. Our results define hesitancy to seek emergency care among caregivers of children. Greater hesitancy within vulnerable populations could exacerbate health disparities during the COVID-19 pandemic. Health systems and health plans should monitor acute care utilization and intervene with caregivers to ensure that children are receiving necessary and timely care for emergency conditions. The authors have no potential conflicts to disclose. Michelle L. Macy contributed to the study concept and design, analysis and interpretation of the data, drafting of the manuscript, and critical revisions of the manuscript for important intellectual content. Tracie L. Smith and Jenifer Cartland contributed to the study concept and design, analysis and interpretation of the data, statistical expertise, and critical revisions of the manuscript for important intellectual content. Emily Golbeck contributed to the study concept and design, acquisition of the data, and critical revisions of the manuscript for important intellectual content. Matthew M. Davis contributed to the study concept and design, analysis and interpretation of the data, and critical revisions of the manuscript for important intellectual content.
•Caregivers were concerned regarding child development after developmental therapy service disruption.•Caregiver job insecurity was associated with perceived child developmental concerns.•Developmental services for children should be considered essential health care. IntroductionThe aim of this study is to examine caregivers' perception of their child falling behind on developmental milestones after canceled or delayed appointments in metropolitan Chicago during stay-at-home orders, from March 21 to May 7, 2020.MethodsWe fielded a web-based caregiver survey to understand the impact of the early weeks of the COVID-19 pandemic on children's healthcare experiences, characterizing the proportions of caregiver perceptions of children falling behind in developmental milestones by canceled or delayed appointment types. Multivariable logistic regression was used to estimate the likelihood of falling behind in milestones.ResultsOverall, 229 (7.5%) caregivers reported children with canceled or delayed appointments falling behind in developmental milestones. Approximately 25.4% of caregivers reported children falling behind on milestones in the missed therapeutic group, compared with that in the other missed group (2.9%) (p<0.001). Children in the missed therapeutic group (AOR=10.3, 95% CI=7.60, 14.0) and caregivers who experienced job loss (AOR=1.59, 95% CI=1.11, 2.28) or reduced hours or pay (AOR=1.90, 95% CI=1.28, 2.82) had higher odds of falling behind on developmental milestones.ConclusionsImplementation of new strategies to address the social needs of families should be developed when disruptions in developmental or therapeutic services among children occur, particularly among children living in households with job insecurity.
Technology can help streamline processes and improve communication between healthcare providers and patients. The electronic health record (EHR), along with its mobile application, have demonstrated the ability to improve the efficiency and accuracy of health care delivery. Given these capabilities, further research in technology adoption and utilization is warranted to determine best strategies for usage and deployment. By usage analysis one can ascertain if certain groups find mobile EHR (mEHR) tools more usable and useful than other groups. To determine if medical providers in different work settings at an academic pediatric hospital have similar or dissimilar frequencies of mEHR use, we categorized providers as inpatient, ambulatory, critical care, or emergency medicine according to their EHR profile departments. This study included data from 874 health care providers over a 12-month period regarding their usage of mobile phone (EPIC® Haiku) and tablet (EPIC® Canto) mEHR. Tablet mEHR use was relatively low compared to mobile phone EHR access, accounting for only 8% of total mEHR logins. Furthermore, ambulatory and inpatient care providers had the greatest usage levels over the 12-month period. Critical care providers do not utilize mEHR tools nearly as much as ambulatory or inpatient providers, likely due to workflow differences. Since clinical setting does affect usage levels of the mEHR, understanding of provider workflow can be helpful in maximizing the potential of these digital tools. Awareness of workflow allows for optimization of mEHR design and implementation, which should increase mEHR adoption and usage, leading to better health outcomes for patients.
Abstract Objectives Seizure burden is typically measured by seizure frequency yet it entails more than seizure counts, especially for people with severe epilepsies and their caregivers. We aimed to characterize the multi‐faceted nature of seizure burden in young people and their parents who are living with severe early‐life epilepsies. Methods A one‐day workshop and a series of teleconferences were held with parents of children with severe, refractory epilepsy of early‐life origin and providers for children with epilepsy. The workshop sessions were structured as focus groups and aimed to identify components of seizure burden and their impact from the perspective of parents and providers. Data were gathered, organized, and refined during the workshop using an iterative 4‐step process that drew upon grounded theory. Results Three primary components of seizure burden were identified: frequency, severity, and unpredictability, which was as important if not more important at times than frequency and severity. Caregivers noted that the impacts of seizures were experienced as acute‐immediate consequences, longer‐term consequences, and as chronic effects that develop and evolve over time. The severity of the child's neurological and medical status as well as where in the disease journey a family was represented additional contextual factors that influenced the experience of seizure burden. Significance Patient‐reported and patient‐centered outcomes are increasingly incorporated into the evaluation of treatment effectiveness. Without understanding how the disease creates burden for the patient (or family), it is difficult to know how to assess the impact of treatment. Our preliminary findings indicate seizure burden is a complex construct and unpredictability can be as important as frequency and severity.
