Using clinical simulation to assess a new paediatric ESCALATION system education package: Empirical research mixed methods.

AIM: The aim of the study was to assess the suitability of an online education package to prepare health professionals to use a new paediatric early warning system. DESIGN: Quasi-experimental mixed methods using co-production. METHODS: Participants completed the Package and participated in up to four clinical scenarios. Data were collected using self-report surveys, and during clinical scenarios; escalation of care, documentation, family involvement, communication handovers were assessed, and recorded debriefings were thematically analysed. Data were integrated using tabulated joint displays. RESULTS: Eleven nurses and three doctors were recruited from three mixed adult and paediatric hospitals. Following completion of the Package and clinical scenarios 13/14 (93%) participants agreed preparedness and confidence to use the ESCALATION System had increased. For 53% handovers, the communication framework was followed, for 79% charts, documentation was complete. Participants engaged with the parent (actor) for 97% scenario interactions. The Package was effective and participation in clinical scenarios appeared to enhance learning. PATIENT OR PUBLIC CONTRIBUTION: Consumers participated in the steering group overseeing the study and in the expert panel who reviewed the education package and clinical scenarios.

Predictors of Willingness to Participate in COVID-19 Screening Testing from a Pilot School Survey in the United States.

BACKGROUND: COVID-19 screening testing (ST) can detect asymptomatic or pre-symptomatic cases, allowing for prompt identification of cases and close contacts. This study examined parents' and school staffs' knowledge and attitudes toward to a pilot school-based ST program in a school district in southern Arizona. METHODS: In May 2021, online surveys to parents and school staff were administered to examine attitudes toward ST and impacts of the COVID-19 pandemic. Unweighted percent estimates were calculated, and bivariate differences were examined by demographics. Associations were assessed using chi-square tests and logistic regression. RESULTS: The survey had response rates of 10% (606/6085) and 22% (187/849) among parents and staff, respectively. Approximately one-third of responding parents (35%) would or already allow their child to participate in school-based ST, 37% would not participate; 28% were unsure. Among responding staff, 46% would or already participate in ST, 33% would not; 21% were unsure. The top concern (38%) among responding staff was taking job-related leave if testing positive. CONCLUSION: Schools work to balance the needs of students, families, and staff by implementing supportive and flexible policies and practices founded on buy-in and acceptance from their communities.

Parent concerns for child development following admission to neonatal intensive or special care: From birth to adolescence.

AIM: To describe the presence and nature of parent concerns regarding the development of their children admitted to Australian neonatal units (NNUs), comprising neonatal intensive care or special care. METHODS: In a cross-sectional survey, mothers and fathers provided information regarding concerns for their child's development. The self-administered survey was completed by two separate cohorts; (i) parents of child graduates from Australian NNUs (n = 381); (ii) parents of infant's inpatient in two South Australian NNUs (n = 209). Data were analysed using thematic analysis and descriptive statistics. RESULTS: Information was provided for 730 children. Developmental concern was reported for 39% of NNU graduates and 35% of inpatients. Children born very preterm (< 32 weeks' gestation) elicited greater parent concern than those born more mature (Cohort 1: 41% vs 36%; Cohort 2: 49% vs 22%), including in multiple developmental domains (Cohort 1: 17% vs 15%; Cohort 2: 28% vs 4%). Parents with inpatient infants were predominantly concerned about general development-milestones (19.1%) and the potential impact of medical or CNS issues (13.7%). Graduate parents commonly focused on specific domains, such as their child's speech-language (13.7%) and motor (12.9%) development. CONCLUSION: Neurodevelopment is a substantial source of concern for mothers and fathers during NNU admission and childhood, particularly for children born very preterm. However, in the first year of life, developmental concerns are poorly defined. This highlights the need for clinical education resources detailing infant developmental expectations and supportive strategies for parents of these high-risk infants.

Parents' school-related concerns and perceived strengths in youth with spina bifida.

BACKGROUND: Although the academic difficulties of children with spina bifida (SB) are well-documented, there is limited literature on parents' views of their children's school experiences and school-related supportive services. Thus, the current study examined parents' school-related concerns, as well as perceived areas of strength, among children with SB. METHODS: Using a mixed-methods approach, 30 families (29 mothers and 19 fathers) of children with SB (ages 8-15 years) completed questionnaires and interviews. Content analysis was used to generate themes from interview data about parents' school-related concerns and perceptions of their child's strengths. RESULTS: Overall, six themes emerged when assessing both parents' concerns and perceived strengths. Some parents did not endorse school concerns or strengths for their child. However, other parents described concerns related to academic performance, cognitive abilities, lack of school support, missed school and/or class time and disengagement, as well as strengths such as academic skills, cognitive abilities, persistence, self-advocacy and agreeableness. Despite parents' concerns about their children's academic performance, quantitative data revealed that less than 50% of children had received a neuropsychological evaluation and/or academic accommodations; additional quantitative data supported the qualitative findings. CONCLUSIONS: The mixed-methods approach used in this study provides a richer understanding of parents' experiences in the school setting when they have a child with SB. Results can inform clinical practice, identifying a need to improve academic support for children with SB and help parents manage education-related stressors.

Future Care Planning: Concerns of Elderly Parents Caring for a Person With Serious Mental Illness.

Although recent advances in early treatment of people with serious mental illness have brought new hope to family members, parents of service users are still often left to worry about their loved one's future care. Without judicious planning, a parent''s death can be a catastrophic event that leaves an adult with serious mental illness without supports. This Open Forum emphasizes the benefits of mental health professionals being proactive and helping families and service users address concerns with future care planning. The active involvement of all stakeholders, including the person with mental illness, relatives, friends, mental health professionals, lawyers, and financial planners, can ensure proper care planning and promote better long-term outcomes.

Predictors in ASD: The Importance of Parents' Perception.

Several predictors may influence children's developmental trajectories with Autism Spectrum Disorder (ASD), and parents' concerns may play an important role. This study aimed to investigate developmental trajectories of two groups of children with ASD to understand predictive factors, including parental perception. We examined the clinical features of a sample of 55 children with ASD at 3 and 6 years of age in two moments of evaluation to understand this process. We used the Autism Diagnostic Observation Schedule, (ADOS) in both moments. We selected two groups based on ADOS results at moment two: one group with a worse outcome (ADOS results above 8) and one group with a better outcome (ADOS results below 8 in the second moment). We also selected questions from a questionnaire (elaborated by the authors and used in clinical practice) applied to parents to understand if early parents' concerns may help to predict ASD prognosis. We found a significant association between imitation and playability and the child's prognostic. Also, Interactive Gestures, Beginning of Joint Attention, Reciprocity, and Pleasure in Interaction might help identify positive case evolution. Our findings are significant in early intervention program development, not only with direct intervention with the child but also including the parents' involvement in the intervention.

Brief Report: Predicting Sex Differences and Diagnosis from Early Parent Concerns.

Autism spectrum disorder (ASD) research is largely based on males, and females with ASD are at risk for under-identification. Research recommends listening to parent concerns since these are often predictive of a child's eventual diagnosis. This study examined how patterns of parent concerns predicted sex differences and eventual child diagnosis (ASD or developmental delay [DD]). We performed a secondary analysis with n = 273 children ages 36-72 months. Results suggested males with ASD had a higher likelihood of repetitive behavior and speech and language concerns compared to females with ASD. Females with DD were significantly more likely to have problem-solving concerns; whereas, males with DD were significantly less likely to have social communication concerns compared to females with ASD.

First Parental Concerns and Age at Diagnosis of Autism Spectrum Disorder: A Retrospective Review from Malaysia.

BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental disorder. This is the first study to examine first parental concerns in ASD in Malaysia. We examined: i) age and type of first parental concerns (AOC); ii) association between AOC and severity; iii) time lag between AOC and diagnosis; and iv) factors associated with diagnostic delay. METHODS: Medical records of 366 patients (aged 1-18 years) with ASD, at the Developmental Paediatrics Clinic of University of Malaya Medical Centre (UMMC), Kuala Lumpur, were reviewed for this 16-month retrospective cohort study. A validated coding system was used for initial parent concerns. Severity was classified via the Diagnostic and Statistical Manual of Mental Disorders-5th edition (DSM-5) criteria. Time lag between AOC and age at diagnosis (AOD) was calculated. Potential predictors of delayed diagnosis were extracted. RESULTS: Three-quarters (75.1%) of parents had concerns by 36 months. Speech/language/communication concerns were most frequent (60.1%). Number of first concerns was significantly correlated with severity (social communication/interaction, SCI [P = 0.019] and restricted, repetitive patterns of behaviours and/or interests/activities, RRB [P < 0.001]). AOC and AOD were significantly negatively correlated with SCI and RRB (P < 0.001). Medians; AOC: 24 months, AOD: 46 months and time lag: 17 months. Higher initial screen time was associated with diagnostic delay (P = 0.031). CONCLUSION: First parental concerns and AOD were comparable to studies across countries. Speech/communication delays may represent universal first parental recognition of ASD.

Parent concerns: Differentiating developmental diagnoses in young children.

BACKGROUND: Screening guidelines recommend listening closely to parent concerns to aid in the identification of children with disabilities, since parent concerns may be predictive of an eventual child diagnosis. METHODS: We performed a secondary analysis to examine the extent to which specific parent concerns differentiated six diagnostic categories (i.e., ASD, ASD + ADHD, Disruptive Impulse-Control and Conduct Disorder, developmental delays, and speech and language disorders) among 503 children 36-72 months of age. Data was drawn for a large diagnostic center in the Midwest. RESULTS: We performed multinomial logistic regression with parent concerns differentiating six diagnostic categories. Results indicated that parent concerns preceding a diagnostic evaluation significantly differ among children with various diagnoses. CONCLUSION: Parent concerns often aligned with core diagnostic criteria; regardless of a parent's knowledge of diagnostic criteria, their observations of child behavior are exceptionally insightful.

Race influences parent report of concerns about symptoms of autism spectrum disorder.

Racial differences in parent report of concerns about their child's development to healthcare providers may contribute to delayed autism spectrum disorder diagnoses in Black children. We tested the hypotheses that compared to White parents, Black parents of children with autism spectrum disorder would report fewer concerns about autism symptoms and would be more likely to report concerns about disruptive behaviors. A sample of 18- to 40-month-old toddlers ( N = 174) with autism spectrum disorder and their parent participated. After screening positive for autism spectrum disorder risk, but prior to a diagnostic evaluation, parents completed free-response questions soliciting concerns about their child's development. Parent responses were coded for the presence or the absence of 10 possible concerns, which were grouped into autism concerns (e.g. social and restricted and repetitive behavior concerns) or non-autism concerns (e.g. general developmental and disruptive behavior concerns). Compared to White parents, Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns. However, Black parents did not report significantly fewer non-autism concerns. Race did not influence parent report of disruptive behavior concerns. Lower reporting of autism concerns by Black parents may impact providers' abilities to identify children who need further screening or evaluation.

Behavioural and emotional concerns reported by parents of children attending a neurodevelopmental diagnostic centre.

BACKGROUND: Behavioural and emotional problems are a salient concern for parents of children with neurodisability, but little is known about the nature of such concerns in this population, nor about the distribution of concern types across ostensibly different subpopulations. METHODS: Information about behavioural and emotional concerns was extracted from clinical reports of developmental paediatricians (N = 12) who had assessed children aged 3 to 8 years (N = 129) through three clinics at a major developmental and rehabilitation service centre. All concerns were captured at a granular level. A two-stage, consensus-based interdisciplinary concept-sorting technique was used to identify and group thematically related behavioural and emotional concerns into First Stage Groupings, intended to preserve detail and specificity, and a reduced number of Second Stage Clusters. RESULTS: A total of 669 discrete concerns were encountered, aggregated to 58 First Stage Concern Groupings and 28 Second Stage Concern Clusters. Findings of the salience of Groupings related to Attention, Concentration and Distractibility, and Anxiousness, Shyness, and Emotional Sensitivity reflect existing literature for children with neurodevelopmental concerns. "Social Isolation/Peer Engagement," "Tantrums/Outbursts/Meltdowns" and "Volatility/Self-regulation Difficulties," and "Sensory Issues" emerged as areas of significant concern and salience as well. Across clinics, three Clusters recurred among the top five observed for each clinic: "Tantrums/Outbursts/Meltdowns," "Inflexibility/Gets Stuck or Fixated," and "Social Behaviours." CONCLUSIONS: This rich descriptive dataset affords insight into the phenomenology of behaviour and emotional concerns in the daily lives of parents whose children have known or suspected neurodisability. Study findings can inform and sensitize clinicians working with this population. Usefulness is enhanced by inclusion of behavioural material that is subthreshold for a formal psychopathologic diagnosis. Certain concern types are encountered commonly across different clinical subpopulations, supporting a noncategorical view of behavioural and emotional problems as functional attributes that cross neurodisability diagnostic categories.

Do Parental Concerns Predict Developmental and Behavioral Diagnoses in a Developmental Clinic?

Parental concerns are useful tools to help pediatric care providers identify the presence of developmental and behavioral problems. This study sought to learn whether specific parental concerns helped predict diagnoses in a tertiary developmental clinic. Parents of preschoolers who attended a preschool developmental clinic (n = 101) were surveyed about behavioral and developmental concerns and their concerns about possible diagnoses. Clinical diagnoses were subsequently obtained on all children and compared with parents' primary concerns. In our sample, approximately 50% of concerns were about language development and 21% about behavior. The most common diagnoses were communication disorder (41%) and developmental delay (42%). Only 30% of children whose parents had concerns about an autism spectrum diagnosis had actually received that diagnosis. Neither parental concerns about development and behavior nor their concerns about specific diagnosis predict clinical diagnosis in our tertiary developmental setting.

Parents' first concerns about toddlers with autism spectrum disorder: effect of sibling status.

Symptoms of autism spectrum disorders may appear as early as 6 months, but parent concern, which can precipitate evaluation, often lags significantly. The presence of typical or atypical older siblings can change parents' sensitivity to departures from typical development. This study investigated type and age of parent's first concerns in toddlers with autism spectrum disorder, prior to diagnosis. Participants had (1) at least one older sibling with autism spectrum disorder (Sibs-ASD); (2) only typically developing older siblings (Sibs-TD), or (3) were only/oldest (No-Sibs). Specific autism spectrum disorder diagnoses and symptom severity were similar among groups. Developmentally, No-Sibs showed the largest delays, followed by Sibs-TD, followed by Sibs-ASD. Mean age of first concern was 16 months for No-Sibs, 14 months for Sibs-TD, and 10 months for Sibs-ASD. Age of first concern differed significantly by group, even after controlling for mother's age and education. Concern about language was prevalent in all groups. Thus, the presence of an older child with typical or, especially, atypical development was associated with earlier concerns for the affected child, despite milder developmental delays. These findings underscore the importance of encouraging parents to report concerns to pediatricians, routine standardized screening for autism spectrum disorder, and the need for pediatrician vigilance, especially for only or oldest children.