A systematic review of self and observer assessment of pain and related functioning in youth with brain-based developmental disabilities.

ABSTRACT: Pain experiences of youth with brain-based developmental disabilities are often overlooked and/or misinterpreted, increasing the risk for poor or inadequate pain assessment and management. Ample measures exist to assess acute and chronic pain, yet their utility and frequency of use in youth with brain-based developmental disabilities is unclear and available measures do not have strong measurement properties for this diverse group. This systematic review identified the scope of self-reported and observer-reported pain assessment in studies of youth (aged 3-24 years) with brain-based developmental disabilities (phase 1) and summarized other measures of pain-related functioning for acute and chronic pain (ie, physical, emotional, social, sleep, and quality of life, within the subset of quantitative studies focused primarily on pain, phase 2). A comprehensive search for English-language studies was conducted in August 2022 in Web of Science, CINAHL, MEDLINE, Cochrane CENTRAL, EMBASE, and APA PsychINFO (PROSPERO registration: CRD42021237444). A total of 17,029 unique records were screened. Of the 707 articles included in phase 1, most assessed chronic pain (n = 314; 62.0%) and primarily used observer-report (n = 155; 31%) over self-report (n = 67; 13%). Of the 137 articles included in phase 2, other outcomes assessed alongside pain intensity included motor ability (16.8%), adaptive functioning (11%), quality of life (8%), pain interference (6.6%), mental health (5.8%), and communication ability (2.9%). Cerebral palsy was the most common population in both phase 1 (n = 343; 48.5%) and phase 2 (n = 83; 59.7%). This review provides a foundational understanding of pain assessment in brain-based developmental disabilities and highlights continued inequities in holistic pain assessment for this population.

COVID-19 and Neurodevelopmental Disabilities: Examining the Impact of the First 2 Years of the Pandemic on the Demand for Pediatric Inpatient Care.

The COVID-19 pandemic has strained the resources of the world's healthcare systems. Most individuals with neurodevelopmental disabilities (NDDs) experience significant mental health issues and face substantial barriers in accessing appropriate supports which have been exacerbated during the pandemic. It is unknown the extent to which COVID-19 impacted the demand for and effectiveness of inpatient care for those with NDDs. The impact of COVID-19 on the number of admissions of youth with NDDs to pediatric inpatient psychiatry units, as well as their functioning and length of stay during the first two years of the pandemic was analyzed using Bayesian structural time series models. Admission data of youth with NDDs from four pediatric inpatient units in Alberta, Canada (n = 2144) was examined. Inpatient admissions of youth with NDDs significantly increased following the onset of the pandemic. Compared to the period prior to the pandemic, patients with NDDs had significantly worse overall functioning and received fewer days of treatment. These findings highlight the need for increased resources to support the mental health needs of this vulnerable population and are consistent with other studies in the general population examining the utilization of inpatient psychiatric units during the pandemic.

Autistic characteristics and mental health symptoms in autistic youth during the first COVID-19 wave in Canada.

Autistic youth are at heightened risk for mental health issues, and pandemic-related stressors may exacerbate this risk. This study (1) described caregiver-reported youth mental health prior to and during the pandemic; and (2) explored individual, caregiver, and environmental factors associated with changes in autistic characteristics, social-emotional symptoms, and overall mental health. 582 caregivers of autistic children (2-18 years old) completed an online survey between June and July 2020 in which they provided demographic information, their child's pre-COVID and current mental health, autistic characteristics, and social-emotional symptoms. Caregivers also rated their own perceived stress, and COVID-related household and service disruption. According to caregivers, youth experienced more autistic characteristics and social-emotional concerns during the pandemic. Autistic youth were also reported to experience poorer overall mental health during the pandemic than before the pandemic. Older youth whose caregiver's indicated higher perceived stress and greater household disruption were reported to experience more autistic traits during pandemic. Caregiver-reported increases in youth social-emotional symptoms (i.e., behavior problems, anxiety, and low mood) was associated with being older, the presence of a pre-existing mental health condition, higher caregiver stress, and greater household and service disruption. Finally, experiencing less household financial hardship prior to COVID-19, absence of a pre-existing psychiatric condition, less caregiver stress, and less service disruption were associated with better youth pandemic mental health. Strategies to support the autistic community during and following the pandemic need to be developed. The developmental-ecological factors identified in this study could help target support strategies to those autistic youth who are most vulnerable to mental health problems.

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder.

Individuals with Fetal Alcohol Spectrum Disorder (FASD) experience a range of biopsychosocial vulnerabilities that can increase the possibility of adverse life outcomes, including a heightened risk of suicidality. In this study, we explored the lived experiences of caregivers of children and youth with FASD and suicidality, including their perceptions of their child and youth's suicidal experiences. Between March and June 2021, six comprehensive, semi-structured interviews were conducted with five caregivers of children and youth with FASD (Mage = 14.5 years, range 11-22) who were currently experiencing suicidality or had a history of suicidality. Data were analyzed using interpretative phenomenological analysis and then developed into a composite vignette informed and organized by the social-ecological suicide prevention model (SESPM). The composite vignette revealed the narratives of families living with and caring for children and youth with FASD who experience suicidality in relation to the complex and intersectional individual, relational, community, and societal level contextual and protective factors. Findings from this study highlight the critical need for comprehensive FASD-informed suicide prevention and intervention approaches to promote the mental health and wellbeing of children and youth with FASD and their caregivers.

Executive Functioning in Youth With and Without Chronic Pain: A Comparative Analysis.

OBJECTIVES: Preliminary research in youth with chronic pain suggests differences in attention and working memory, which has been similarly demonstrated in adults with chronic pain. There has been little research on other aspects of executive functioning (EF) in this population despite its critical role in problem solving, school functioning, and coping. This study aimed to examine differences in several aspects of EF between youth with chronic pain and a nonchronic pain comparison group using performance-based neuropsychological tests and a behavior rating scale. MATERIALS AND METHODS: Participants completed ratings of pain; physical, emotional, social, and school functioning; sleep quality; medication; and a general intelligence screener. Standardized neuropsychological tests were used to examine EF with a focus on working memory, divided and alternating attention, inhibition, flexibility, incidental memory, and planning. A parent-report and self-report behavior rating of EF was also administered. RESULTS: Recruitment from 2 tertiary-care pain clinics resulted in a sample of 26 youth with chronic pain (80.8% girls) and their parents. A comparison group of 30 youth without chronic pain and their parents were recruited from the community. Participants with chronic pain had significantly lower scores on several performance-based tests of working memory/divided attention, inhibition, and flexibility/alternating attention than the comparison group. Statistically significant group differences were also found on behavior ratings of emotion control, shifting, task initiation and completion, working memory, planning and organization, overall emotion and cognitive regulation as well as global EF. Covariate analysis was conducted in all analyses where there were significant group differences and several observed group differences remained. DISCUSSION: This study is one of few multidimensional examinations of EF in youth with chronic pain, using a comprehensive neuropsychological test battery combined with behavior ratings. Our findings suggest EF differences in youth with chronic pain, across a variety of domains and may suggest risk for specific cognitive processing weaknesses in this population. Medical and educational teams should work toward identification, treatment, and compensatory support for EF within individualized pain management for youth.