Developmental evaluation during the COVID-19 pandemic: Practice-based learnings from projects in British Columbia, Canada.

In this article, we explore experiences and learnings from adapting to challenges encountered in implementing three Developmental Evaluations (DE) in British Columbia, Canada within the evolving context of the COVID-19 pandemic. We situate our DE projects within our approach to the DE life cycle and describe challenges encountered and required adaptations in each phase of the life cycle. Regarding foundational aspects of DEs, we experienced challenges with relationship building, assessing and responding to the context, and ensuring continuous learning. These challenges were related to suboptimal embeddedness of the evaluators within the evaluated projects. We adapted by leveraging online channels to maintain communications and securing stakeholder engagement by assuming non-traditional DE roles based on our knowledge of the context to support project goals. Additional challenges experienced with mapping the rationale and goals of the projects, identifying domains for assessment, collecting data, making sense of the data and intervening were adapted to by facilitating online workshops, collecting data online and through proxy evaluators, while sharing methodological insights within the evaluation team. During evolving crises, like the COVID-19 pandemic, evaluators must embrace flexibility, leverage, and apply their knowledge of the evaluation context, lean on their strengths, purposefully reflect and share knowledge to optimise their DEs.

Scoping review of stepped care interventions for mental health and substance use service delivery to youth and young adults.

AIMS: Many young people with mental health and/or substance use concerns do not have access to timely, appropriate, and effective services. Within this context, stepped care models (SCMs) have emerged as a guiding framework for care delivery, inspiring service innovations across the globe. However, substantial gaps remain in the evidence for SCMs as a strategy to address the current systemic challenges in delivering services for young people. This scoping review aims to identify where these gaps in evidence exist, and the next steps for addressing them. METHODS: A scoping review was conducted involving both peer-reviewed and grey literature. Eligible studies explored SCMs implemented in the various health care settings accessed by young people aged 12-24 seeking treatment for mental health and substance use challenges. After screening titles and abstracts, two reviewers examined full-text articles and extracted data to create a descriptive summary of the models. RESULTS: Of the 656 studies that were retrieved, 51 studies were included and grouped by study team for a final yield of 43 studies. Almost half of the studies were focused on the adult population (i.e., 18 and over), and most did not specify interventions for young people. Among the SCMs, substantial variability was found in almost every aspect of the models. CONCLUSIONS: Considering the current body of evidence, there is an urgent need for a consensus position on the definition, implementation, and outcome measures required for rigorously assessing the utility of SCMs for young people.

Fidgety Philip and the Suggested Clinical Immobilization Test: Annotation data for developing a machine learning algorithm.

The cartoon Fidgety Philip, the banner of Western-ADHD diagnosis, depicts a 'restless' child exhibiting hyperactive-behaviors with hyper-arousability and/or hypermotor-restlessness (H-behaviors) during sitting. To overcome the gaps between differential diagnostic considerations and modern computing methodologies, we have developed a non-interpretative, neutral pictogram-guided phenotyping language (PG-PL) for describing body-segment movements during sitting (Journal of Psychiatric Research). To develop the PG-PL, seven research assistants annotated three original Fidgety Philip cartoons. Their annotations were analyzed with descriptive statistics. To review the PG-PL's performance, the same seven research assistants annotated 12 snapshots with free hand annotations, followed by using the PG-PL, each time in randomized sequence and on two separate occasions. After achieving satisfactory inter-observer agreements, the PG-PL annotation software was used for reviewing videos where the same seven research assistants annotated 12 one-minute long video clips. The video clip annotations were finally used to develop a machine learning algorithm for automated movement detection (Journal of Psychiatric Research). These data together demonstrate the value of the PG-PL for manually annotating human movement patterns. Researchers are able to reuse the data and the first version of the machine learning algorithm to further develop and refine the algorithm for differentiating movement patterns.

Distributive Leadership Within an Emerging Network of Integrated Youth Health Centres: A Case Study of Foundry.

BACKGROUND: Distributive leadership has been proposed as an effective means towards achieving integrated health services. This study draws from the case of Foundry, a network of integrated youth health centres in British Columbia, Canada, and explores the function and impact of distributive leadership in the context of a large-scale effort towards integrated service delivery for youth experiencing mental health and substance use challenges. METHODS: Qualitative data was obtained from a developmental evaluation of Foundry using a longitudinal, ethnographic approach. Over 150 participants involved in the development of six Foundry centres were interviewed individually or in focus groups. Purposive and theoretical sampling strategies were used to maximize the diversity of perspectives represented in the data set. RESULTS AND DISCUSSION: Distributive leadership was observed to be a facilitator for achieving service and system-level integration. Distributive leadership was effective in promoting streamlined service provision, and coordinating efforts towards optimized access to care. A new culture of leadership emerged through collaboration and relationship-building based on a common value system to prioritize youth needs. CONCLUSION: As Foundry, and other integrated youth services, continues to expand, distributive leadership shows promise in assuring diverse and coordinated input for integrating services.

Prenatal alcohol exposure and sleep-wake behaviors: exploratory and naturalistic observations in the clinical setting and in an animal model.

INTRODUCTION: Clinical research and studies using animal models have revealed a complex and relatively under-explored interaction between prenatal alcohol exposure (PAE) and alterations in sleep-wake behaviors. OBJECTIVES: To utilize a structured naturalistic observation-based methodology, consisting of descriptive elements, to provide insight into possible links between altered sleep and disruptive daytime presentations in children and adolescents with fetal alcohol spectrum disorder (FASD). To apply a similar structured behavioral observation protocol in a PAE animal model to compare outcomes from the experimental and clinical studies utilizing naturalistic observational methodology. METHODS: Forty pediatric patients with FASD (1.8-17.5 yrs, median age 9.4 yrs) and chronic sleep problems were assessed. In the PAE animal model, male offspring from PAE, Pair-Fed (PF), and ad libitum-fed Control (C) groups (n = 8/group) were assessed in the juvenile/preadolescent (23-25 days of age) and adolescent/pubertal (35-36 days of age) periods. RESULTS: In the clinical setting, we found that 95% of children with FASD showed disruptive or externalizing behaviors, 73% showed internalizing behaviors, 93% had circadian rhythm sleep disorders, all had chronic insomnia, and 85% had restless sleep, often with tossing/turning/kicking movements indicative of non-restorative sleep with hypermotor events. In the daytime, individuals showed excessive daytime sleepiness as well as hyperactive/hyperkinetic behaviors, an urge-to-move, and involuntary movements suggestive of hyperarousability. Alterations in sleep/wake behaviors in the PAE animal model paralleled the clinical data in many aspects, demonstrating greater sleep latencies, less total time asleep, more total time awake and longer awake bouts, more position changes, more time in transition, and longer transition bouts in PAE compared to PF and/or control animals. CONCLUSIONS: Thus, our findings provide support for the power and validity of naturalistic observational paradigms in revealing dysregulated sleep-wake behaviors and their association and/or exacerbating relationship with day and nighttime behavioral problems, such as disruptive behaviors, externalizing and internalizing disorders, and daytime sleepiness.

"Emplotted Narratives" and Structured "Behavioral Observations" Supporting the Diagnosis of Willis-Ekbom Disease/Restless Legs Syndrome in Children with Neurodevelopmental Conditions.

BACKGROUND: Willis-Ekbom disease/restless legs syndrome (WED/RLS) seems to be a frequent cause of intractable chronic insomnia (ICI) but is under-recognized in children/adolescents with neurodevelopmental conditions (NDCs), as many patients do not have the ability to express the underlying "urge-to-move". In light of this, we aim to develop a protocol for behavioral observations supporting the diagnosis of WED/RLS. METHODS: We investigated 26 pediatric patients (age 1-16 years, median 8) with NDCs, ICI and evidence of familial WED/RLS employing (1) "emplotted narratives" for description of the various "urge-to-move" presentations and (2) self-description and "behavioral observations" during a "suggested clinical immobilization test" (SCIT). RESULTS: Parental narratives reflected typical WED/RLS-related "urge-to-move" symptoms during day-, bed-, and nighttime in all patients. Fifteen out of 26 patients could describe the "urge-to-move" during the SCIT. Ten out of 26 patients, unable to describe their symptoms due to cognitive disabilities, showed patterns of "relieving-movements" upon observation. Sensory processing abnormalities were reported in all patients, with tactile sensitivities (26/26) (including shifted pain threshold) as the most common sensory domain. CONCLUSION: "Emplotted narratives" and structured "behavioral observations" support recognition of familial WED/RLS associated movement patterns and provide a useful tool for the diagnosis of WED/RLS in children with NDCs in a clinical office setting.

"Diagnosis by behavioral observation" home-videosomnography - a rigorous ethnographic approach to sleep of children with neurodevelopmental conditions.

INTRODUCTION: Advanced video technology is available for sleep-laboratories. However, low-cost equipment for screening in the home setting has not been identified and tested, nor has a methodology for analysis of video recordings been suggested. METHODS: We investigated different combinations of hardware/software for home-videosomnography (HVS) and established a process for qualitative and quantitative analysis of HVS-recordings. A case vignette (HVS analysis for a 5.5-year-old girl with major insomnia and several co-morbidities) demonstrates how methodological considerations were addressed and how HVS added value to clinical assessment. RESULTS: We suggest an "ideal set of hardware/software" that is reliable, affordable (∼$500) and portable (=2.8 kg) to conduct non-invasive HVS, which allows time-lapse analyses. The equipment consists of a net-book, a camera with infrared optics, and a video capture device. (1) We present an HVS-analysis protocol consisting of three steps of analysis at varying replay speeds: (a) basic overview and classification at 16× normal speed; (b) second viewing and detailed descriptions at 4-8× normal speed, and (c) viewing, listening, and in-depth descriptions at real-time speed. (2) We also present a custom software program that facilitates video analysis and note-taking (Annotator(©)), and Optical Flow software that automatically quantifies movement for internal quality control of the HVS-recording. The case vignette demonstrates how the HVS-recordings revealed the dimension of insomnia caused by restless legs syndrome, and illustrated the cascade of symptoms, challenging behaviors, and resulting medications. CONCLUSION: The strategy of using HVS, although requiring validation and reliability testing, opens the floor for a new "observational sleep medicine," which has been useful in describing discomfort-related behavioral movement patterns in patients with communication difficulties presenting with challenging/disruptive sleep/wake behaviors.