Social participation to support good mental health in neurodisability.

BACKGROUND: Young people with neurodisability experience lower levels of mental wellbeing and are at increased risk of mental illness compared with their non-disabled peers. Social participation is recognized as a protective factor against mental illness and a potential pathway to support better mental wellbeing in neurodisability. METHOD: This co-design study involved young people, parents and clinicians. First, possible interventions were identified through a rapid systematic evidence review. Any study designs were considered, which included people with a neurodisability aged 0-18 years, which evaluated a therapy intervention with social participation and mental health outcomes. Titles and abstracts were screened by two reviewers, from the included studies data were extracted and then presented using written summaries. Second, the summaries were discussed and prioritized in stakeholder groups with young people, parents and clinicians. Groups were audio recorded and framework analysis was used to identify and specify intervention elements and their delivery. RESULTS: The evidence review identified 13,870 records, from which 43 were included. These records were published 1994-2017 and reported studies with 4-249 participants aged 16 months-18 years with a range of neurodisabilities. Five intervention approaches (social skills training, arts, sports, technology and play) were identified from the review. Two themes emerged from the stakeholder groups: intervention in the real world, feeling judged and feeling safe. The groups prioritized an intervention in real-world social leisure contexts (i.e. existing clubs and groups) using nine key intervention elements (e.g. feedback and positive verbal reinforcement) delivered by club leaders trained by healthcare professionals using five intervention procedures (e.g. a manual and video training). CONCLUSION: This study has identified core elements of social participation interventions that may improve mental health outcomes in young people with neurodisability, which should now be tested.

Siblings of children with Williams syndrome: Correlates of psychosocial adjustment and sibling relationship quality.

BACKGROUND: Previous research has examined adjustment in parents of children with Williams syndrome (WS), but little is known about sibling outcomes. AIMS: To explore sibling adjustment and relationship quality, and their demographic, psychological and behavioural phenotypic correlates from the perspective of caregivers and siblings in families of children with WS. METHODS AND PROCEDURES: Forty-one caregivers of children with WS participated in this questionnaire study on the adjustment and relationship quality of the siblings. In 31 of these families, self-report data were also provided by the siblings themselves. Data were also gathered on potential correlates, including anxiety and social functioning in the child with WS, caregiver mental health, and sibling social support. OUTCOMES AND RESULTS: Sibling adjustment was similar to population norms, though significantly increased caregiver-reported emotional difficulties were found. Siblings reported greater behavioural, emotional and relationship difficulties than caregivers perceived them to have. Some significant associations were found between the behaviour of the child with WS, sibling behaviour problems and sibling relationship quality. CONCLUSIONS AND IMPLICATIONS: A picture of relatively positive sibling adjustment and relationships emerged, but findings of individual differences and some emotional difficulties emphasise the need for an individualised approach to support in families of children with WS.