Parental COVID-19 vaccine hesitancy for children: vulnerability in an urban hotspot.

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.

Caregiver Concerns About Child Development During the COVID-19 Pandemic among those with Missed Appointments: Preliminary Results.

Introduction: To examine caregiver's 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-May 7, 2020. Methods: We fielded a web-based caregiver survey to understand the impact of the early weeks of the COVID-19 pandemic on children's health care experiences characterizing 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 . Results: Overall, 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 the Other Missed group (2.9%) (p<0.001). Children in the Missed Therapeutic group (adjusted odds ratio (aOR) 10.3, 95% confidence interval (CI) 7.60-14.0)) and caregivers who experienced job loss (aOR 1.59, CI 1.11-2.28) or reduced hours or pay (aOR 1.90, CI 1.28-2.82) had higher odds of falling behind on developmental milestones. Conclusions: Implementation of new strategies to address the social needs of families should be develop when disruptions in developmental or therapeutic services among children occurs, particularly among children living in households with job insecurity.

Barriers and facilitators to recruitment of underrepresented research participants: Perspectives of clinical research coordinators.

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.

Seizure burden in severe early-life epilepsy: Perspectives from parents.

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.