Participación de los pacientes en una intervención de coaching en línea para padres de niños con retraso en el desarrollo.

OBJETIVO: Evaluar los procesos de participación de los pacientes en el desarrollo de una nueva intervención de coaching de salud para padres de niños con problemas de desarrollo emergentes. MÉTODO: Se utilizó un diseño de estudio transversal de método mixto. Los investigadores (n=18) y los padres-asesores (n=9) fueron encuestados utilizando la Herramienta de Evaluación del Compromiso Público y del Paciente (PPEET) en áreas de comunicación/apoyos para la participación, compartiendo puntos de vista/perspectivas, impactos/influencia de la iniciativa de compromiso, y pensamientos finales/satisfacción. Se utilizaron estadísticas descriptivas y resúmenes temáticos para analizar los datos. RESULTADOS: Para ambos grupos de estudio, en las cuatro secciones de la PPEET se observó un alto grado de acuerdo, con respuestas que variaban en gran medida entre 'estoy de acuerdo' y 'estoy muy de acuerdo'. Los informes cualitativos reflejaban que la participación de los pacientes era importante, significativa y tenía un impacto significativo en la calidad del proyecto y en el desarrollo profesional de los investigadores en su comprensión y uso de la metodología orientada al paciente. Los padres-asesores señalaron los problemas relacionados con la fijación de plazos realistas para proporcionar la retroalimentación y la falta de una representación más amplia entre los miembros. INTERPRETACIÓN: Se destacaron los beneficios y desafíos de aplicar estrategias orientadas al paciente a un ensayo multicéntrico. Estos se utilizarán para mejorar nuestros procesos de participación.

Patient engagement in an online coaching intervention for parents of children with suspected developmental delays.

AIM: To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays. METHOD: A cross-sectional mixed-method study design was used. Researchers (n=18) and patient-partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic-based approach were used to analyse the data. RESULTS: For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient-oriented methodology. Patient-partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members. INTERPRETATION: The benefits and challenges of applying patient-oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.

Snap shot: Achieving better care through a one-page personal health profile.

Children with intellectual disabilities (IDs) can have complex health conditions that require intense and ongoing care management by multiple healthcare professionals (HCPs). Families often experience frustrations and challenges sharing necessary information about their children's unique emotional and communicative needs with HCPs. In turn, these needs are often poorly documented and shared with other HCPs. This contributes to compromised care and frustrations for families and HCPs. We conducted a qualitative study using focus groups to examine how 10 parents and 3 HCPs experienced provision of care for children with ID, as well as their suggestions for developing a one-page personal health profile (PHP) to improve communication. Parents suggested including behavioural descriptors rather than diagnoses. All participants believed a one-page PHP that was child and parent led would be very helpful and would improve communication between HCPs, parents and children leading to effective and supportive care.

BRIGHT Coaching: A Randomized Controlled Trial on the Effectiveness of a Developmental Coach System to Empower Families of Children With Emerging Developmental Delay.

Background: In preschool-aged children with, or at elevated risk for, developmental disabilities, challenges and needs arise from vulnerabilities linked to critical and newly emerging cognitive, speech, motor, behavioral, and social skills. For families, this can be a stressful period as they witness the gradual unfolding of their child's differences and await to receive care. Nationally and internationally, service delivery models during this critical period are not standardized nor are they nimble or sufficient enough, leading to long wait times, service gaps and duplications. Given these struggles, there is a need to examine whether "health coaching", a structured educational program that is deliverable by different and more accessible means, can be effective in empowering families, by delivering information, providing social supports, and decreasing the demands on the overwhelmed health and developmental services. The primary objective is to evaluate the feasibility and the effectiveness of a coaching intervention (in comparison to usual and locally available care), for parents of children with emerging developmental delays. Method/Design: A multi-centered pragmatic randomized controlled trial design will be used. Families will be recruited from a representative sample of those awaiting publicly-funded regional child health services for children with developmental delays in four Canadian provinces. The target sample size is 392 families with children aged 1.5 to 4.5 years at recruitment date. Families will be randomly assigned to receive either the BRIGHT Coaching intervention (coach supported, hardcopy and online self-managed educational resources: 14 sessions, 2 sessions every 4 weeks for 6-9 months) or usual care that is locally available. In addition to the feasibility and acceptability measures, outcomes related to family empowerment, parental satisfaction and efficacy with caregiver competency will be evaluated at baseline, post-treatment (8 months), and follow-up (12 months). Discussion: This manuscript presents the background information, design, description of the interventions and of the protocol for the randomized controlled trial on the effectiveness of BRIGHT Coaching intervention for families of children with emerging developmental delays. Trial Registration: ClinicalTrials.gov, U.S. National Library of Medicine, National Institutes of Health #NCT03880383, 03/15/2019. Retrospectively registered.

The next vaccine-autism question: Are school-aged youth with autism spectrum disorder undervaccinated and, if so, why?

Over the past two decades, the words 'autism' and 'vaccination' have often been linked and mired in controversy. In this commentary, we raise a different question about autism spectrum disorder (ASD) and vaccines: Are school-aged youth with ASD undervaccinated and, if so, why? There are several reasons why youth with ASD might be undervaccinated, including: belief in a vaccine-ASD link, challenges faced by youth with ASD when seeking health care and vaccine hesitancy factors that affect the general population. Possible undervaccination in this group is concerning given the prevalence of ASD and the key role of vaccinations in preventing infectious diseases. More research is needed to establish definitively whether youth with ASD are undervaccinated and to understand facilitators and barriers to vaccination for this population. This would help public health officials to develop and implement targeted policy and practice changes to increase vaccination uptake in youth with ASD, thereby increasing immunization equity.

The DalHouses: 100 new photographs of houses with ratings of typicality, familiarity, and degree of similarity to faces.

Houses have often been used as comparison stimuli in face-processing studies because of the many attributes they share with faces (e.g., distinct members of a basic category, consistent internal features, mono-orientation, and relative familiarity). Despite this, no large, well-controlled databases of photographs of houses that have been developed for research use currently exist. To address this gap, we photographed 100 houses and carefully edited these images. We then asked 41 undergraduate students (18 to 31 years of age) to rate each house on three dimensions: typicality, likeability, and face-likeness. The ratings had a high degree of face validity, and analyses revealed a significant positive correlation between typicality and likeability. We anticipate that this stimulus set (i.e., the DalHouses) and the associated ratings will prove useful to face-processing researchers by minimizing the effort required to acquire stimuli and allowing for easier replication and extension of studies. The photographs of all 100 houses and their ratings data can be obtained at http://dx.doi.org/10.6084/m9.figshare.1279430.

Positive affect in infant siblings of children diagnosed with autism spectrum disorder.

Research on the expression of positive affect in young children with Autism Spectrum Disorder (ASD) suggests that differences in this domain emerge late in the first year or early in the second year. However, many previous studies in this area employed retrospective research methods and global rating schemes. In the current study, the expression of positive affect was examined prospectively at ages 6, 12, and 18 months in three groups: infant siblings with ASD, infant siblings without ASD, and low-risk comparison infants. Infant siblings were the younger brothers or sisters of children diagnosed with ASD and, therefore, had a higher familial risk of ASD. The frequency and duration of smiles were coded from video excerpts from the Autism Observation Scale for Infants (Bryson, Zwaigenbaum, McDermott, Rombough, and Brian 2008), a standardized, play-based assessment of early signs of ASD. Results indicated that at 12 months, infant siblings with ASD had a lower rate of smiling than the other two groups. At 18 months, infant siblings with ASD continued to display a lower rate of smiling than infant siblings without ASD, but not comparison infants. Overall, these results indicate that infant siblings with ASD demonstrate less positive affect than infant siblings without ASD and low-risk comparison infants at 12 months. This suggests that reduced smiling may be an informative behavioural risk marker for ASD by children's first birthdays and may have implications for our understanding of atypical social development in children with ASD.

Self-reported and parent-reported pain for common painful events in high-functioning children and adolescents with autism spectrum disorder.

OBJECTIVES: Previous research suggests that children with autism spectrum disorders (ASD) are at a higher risk for painful experiences, but there is limited research examining pain in children with ASD. METHODS: The current study examined self-reported and parent-reported pain in 20 high-functioning youth with ASD (17 boys; 3 girls) and 20 typically developing controls (16 boys; 4 girls) ranging in age from 9 to 18 years and matched on age and IQ. Participants with and without ASD rated their hypothetical pain in a series of pictures depicting common childhood situations. They also rated the amount of pain they would expect to feel (using the Faces Pain Scale-Revised and a Numeric Rating Scale) in a series of validated hypothetical pain situations depicted in cartooned images (eg, scraping knee on sidewalk). Parents rated the amount of pain they would expect their child to show in each of the same cartoon stimuli. RESULTS: There were no significant differences between pain vignette ratings of youth with ASD and their non-ASD peers or in the ratings provided by their parents. High-functioning youth with ASD were able to successfully use both of the self-report scales to rate pain. DISCUSSION: This is the first study to successfully obtain self-report of pain from youth with ASD. Implications for the understanding of pain and pain assessment in high-functioning youth with ASD are discussed.

Brief report: memory performance on the California verbal learning test - children's version in Autism spectrum disorder.

According to the Task Support Hypothesis (TSH; Bowler et al. in Neuropsychologia 35:65-70, 1997) individuals with autism spectrum disorder (ASD) perform more similarly to their typically developing peers on learning and memory tasks when provided with external support at retrieval. We administered the California Verbal Learning Test-Children's Version to 15 high-functioning youths with ASD and 15 matched comparison participants. Although ASD and comparison participants had comparable levels of overall performance, the ASD group, but not the comparison group, improved significantly from free to cued recall, providing support for the TSH. These results indicate that verbal memory performance in youths with ASD is relatively intact, but may be facilitated by external supports.

Discrepancies between self- and parent-perceptions of autistic traits and empathy in high functioning children and adolescents on the autism spectrum.

Self-perception in high-functioning children and adolescents with Autism Spectrum Disorder (ASD) was examined by comparing parent- and self-reports on the Autism Spectrum, Empathy, and Systemizing Quotients (AQ, EQ and SQ). Participants were 20 youths with ASD and 22 typically developing controls. Both parents and participants in the ASD group reported more autistic traits (higher AQ) and less empathy (lower EQ) than the control group. SQ ratings did not differ between groups. Comparisons of self- and parent-reports indicated that youths with ASD reported significantly fewer autistic traits and more empathic features than their parents attributed to them. There were no discrepancies between parent- and self-reports in the control group. Implications regarding the use of self-report in ASD are discussed.

Manipulability and living/non-living category effects on object identification.

Object naming studies have generally observed that both normal and brain damaged individuals are faster and more accurate at identifying non-living objects than living objects (). However, a potential confounding variable, manipulability, has been present in past studies that may mediate this effect. Previous studies that have observed a non-living advantage have often used manipulable and non-manipulable exemplars to represent the non-living and living groups, respectively. Under conditions which controlled for object manipulability and familiarity, results demonstrated advantages for the identification of non-manipulable and for living objects.