Family Perspectives on Continuous Monitor Use in a Children’s Hospital: A Qualitative Study

OBJECTIVES Alarms from continuous cardiorespiratory and pulse oximetry monitors may contribute to parental anxiety and poor sleep during hospitalization, yet families also may find monitoring reassuring. Our objective was to understand how families perceive the utility, benefits, and harms of continuous monitoring. METHODS In this single-center qualitative study, we used semistructured interviews and direct observation. We enrolled families of patients of a variety of ages and clinical diagnoses. We extracted patient demographic information (age, diagnosis) from the health record. Semistructured interviews were recorded and transcribed. Detailed field notes were taken during observations. We used an inductive thematic approach to develop and refine codes that informed the development of themes. RESULTS We recruited 24 families and conducted 23 interviews and 9 observation sessions. Respiratory conditions (eg, bronchiolitis, asthma) were the most common reason for hospitalization. The hospitalized children covered a range of ages: <4 weeks (16%), 4 weeks to 6 months (20%), 7 months to 5 years (44%), and >5 years (20%); 55% had previously been hospitalized. Families expressed varying degrees of understanding the utility of monitors and often conducted their own assessments before notifying staff about alarms. Families expected monitoring, including negative effects like sleep disruption, as part of hospitalization. Families perceived the benefit of monitoring in context of previous hospital experiences, often seeing less benefit and worrying less about alarms in subsequent hospitalizations. CONCLUSIONS Family members continue to find reassurance from cardiorespiratory monitoring despite evidence that it offers limited benefit outside of the ICU setting. Parental perspectives should be addressed in future deimplementation efforts.

Effects of School Closures Resulting From COVID-19 in Autistic and Neurotypical Children

The purpose of this study was to assess differences in negative consequences resulting from pandemic-related school closures between autistic and neurotypical children. We predicted that more negative consequences overall would be reported for children with autism compared to neurotypical children. We also expected to observe differences in the types of stressors reported between these two groups, with disruptions to daily routines more commonly reported for children with autism and stress due to social isolation more commonly reported for neurotypical children. Participants were parents of school-aged children, ages of 4–15 years old, who responded to an online survey (N = 250). Parental perspectives were collected using the Covid-19 Adolescent Symptom and Psychological Experience Questionnaire (CASPE). Parents in the autism group were additionally asked to respond to a survey about autism-specific stressors which may have increased during the pandemic, such as behavioral concerns, therapy disruptions, and hygiene issues. The majority of the respondents (65%) were parents of children with autism and 35% were parents of neurotypical children. Parents of autistic children were more likely to report that their child was negatively affected by routine changes, whereas parents of neurotypical children were more likely to report that their child was affected by social isolation. Overall, parents of children with autism were more than three times as likely to report negative changes in their child compared to parents of neurotypical children. When asked about autism-specific stressors, parents of autistic children reported concerns related to hygiene, behavioral regression, therapy disruption, meltdowns, and returning to school. The effects of the COVID-19 pandemic and prolonged school closures have disrupted the lives of children. Our results indicate that children with autism are at greater risk for negative outcomes due to emergency-related school disruptions. These findings have implications for educational planning for this vulnerable population for future public health crises.

Parental Experiences with Early Identification and Initial Care for their Child with Autism: Tailored Improvement Strategies

Whereas it is well documented how parents experience the diagnostic process of their child with autism spectrum disorder (ASD), less is known about parental experiences with the course of the early identification process and first steps in receiving care for their child with ASD symptoms. This mixed-method study investigated these experiences as well as barriers and improvement strategies regarding early detection in the Netherlands. A parental survey (N = 45) showed that, on average, initial concerns started at 22 months. A focus group (N = 10) revealed multiple barriers and proposed strategies of improvement in three domains: “Knowledge and Expertise”, “Attention to Parental Needs” and “System and Organization”. Strategies to improve early identification will be discussed based on parental perspectives and professional perspectives.