Communicating about Mental Health with Youth and Their Families: A Scoping Review of Best Practices and Implications for Youth with Disabilities.

Minimal attention has been placed on supporting the mental health needs of youth with disabilities. Due to a dearth of research on best practices in mental health communication with youth with disabilities, the aim of the scoping review was to identify existing peer-reviewed evidence regarding mental health communication for the general youth population in clinical settings. Three electronic databases were searched. Inclusion criteria were: 1) published in English between 2009 and 2019; 2) children and youth and/or their parents/caregivers; 3) addressed communication-based mental health practices; 4) based in pediatric health care settings. Seven articles were included. Promoting autonomy and engagement, building collaboration and trust, and supplementing conversations with alternative communication approaches were identified as important for having mental health conversations. While implications can be drawn, more work is needed for clinicians to have a rigorous evidence base to draw upon when having these conversations with youth with disabilities.

Giving Youth a Voice (GYV): a measure of youths' perceptions of the client-centredness of rehabilitation services.

BACKGROUND: Although client-centred care is regarded as the optimum way of delivering health care, there is currently no method to measure the client-centredness of services for youth with disabilities. PURPOSE: To develop a measure of youths' perceptions of the client-centredness of health care services in rehabilitation. METHODS: The Giving Youth a Voice (GYV) questionnaire was adapted from the Measure of Processes of Care, a measure of caregiving from the perspective of parents. Items for a youth version of the questionnaire were generated from focus groups with youths who had received rehabilitation services. Content analysis of the groups yielded four themes, which became the subscales for the new measure. FINDINGS: GYV, a 56-item measure, has good internal reliability and test-retest reliability. Convergent validity was estimated through correlations with the Client Satisfaction Questionnaire. IMPLICATIONS: GYV provides an opportunity for youth with disabilities to have a voice about the rehabilitation services they receive.

Cognitive and Neurobehavioral Profile in Boys With Duchenne Muscular Dystrophy.

Duchenne muscular dystrophy is a progressive neuromuscular condition that has a high rate of cognitive and learning disabilities as well as neurobehavioral disorders, some of which have been associated with disruption of dystrophin isoforms. Retrospective cohort of 59 boys investigated the cognitive and neurobehavioral profile of boys with Duchenne muscular dystrophy. Full-scale IQ of < 70 was seen in 27%; learning disability in 44%, intellectual disability in 19%; attention-deficit/hyperactivity disorder in 32%; autism spectrum disorders in 15%; and anxiety in 27%. Mutations affecting Dp260 isoform and 5'untranslated region of Dp140 were observed in 60% with learning disability, 50% intellectual disability, 77% with autism spectrum disorders, and 94% with anxiety. No statistically significant correlation was noted between comorbidities and dystrophin isoforms; however, there is a trend of cumulative loss of dystrophin isoforms with declining full-scale IQ. Enhanced psychology testing to include both cognitive and neurobehavioral disorders is recommended for all individuals with Duchenne muscular dystrophy.