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Background: Anxiety related to uncertainty is common in autism. Coping with Uncertainty in Everyday Situations (CUES©) is a parent-mediated group intervention aiming to increase autistic children's tolerance to uncertain situations. A pilot study was conducted to test its feasibility and acceptability. Methods: Parents of 50 autistic children were randomised to receive CUES© or enhanced services as usual. Results: All children met the clinical threshold for at least one anxiety disorder. Of the 26 participants randomised to CUES©, 72% attended 4-8 sessions. Parents and therapists reported they found CUES© useful and acceptable. Conclusions: Families were willing to be recruited and randomised, the format/content was feasible to deliver, and the outcome measures were acceptable. CUES© should be evaluated in a clinical and cost effectiveness randomised controlled trial.

Approximately 50% of autistic children experience high anxiety. Intolerance of uncertainty (tendency to react negatively to uncertain situations) is a key mechanism in the development and maintenance of anxiety. This study aimed to provide a descriptive, thematic analysis of the impact on uncertainty on the daily lives of autistic children and their families. Semi-structured interviews were conducted with parents and caregivers of 53 autistic children (including 3 dyads) aged 6-16 years to elicit examples of uncertain situations that the children found challenging and to explore the impact of these situations on family life. Thematic analysis revealed five overarching themes: child's reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. These findings provide a crucial understanding into the range of uncertain situations autistic children with anxiety experience. Anxiety-reduction approaches based on increasing tolerance to everyday uncertain situations could help improve well-being, quality of life and participation for autistic children and their families.

Background: 22q11.2 deletion syndrome (22q11DS) is the most common microdeletion syndrome. Parents of emerging adults with 22q11DS have an intense and ongoing involvement in their child's life. This study explores the lived experience of parents in relation to their child becoming independent and establishing intimate relationships. Method: Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS. Results: "Supervised independence" overarched four subordinate themes. These themes highlighted the difficulties experienced by parents attempting to relinquish control whilst still experiencing a need to keep their child safe as their child negotiated a complex stage of life. Parents waited for "signs" from their child before initiating conversations about intimate relationships. Conclusions: These findings provide insight into the lived experience of parenting a child through the transition into adulthood, providing a catalyst for further research with the aim of facilitating better services for families.

Aim Method Results Interpretation To identify research priorities regarding the effectiveness of interventions for children and young people (CYP) with childhood neurological conditions (CNCs). These include common conditions such as epilepsies and cerebral palsy, as well as many rare conditions.The National Institute for Health and Care Research (NIHR) and the James Lind Alliance (JLA) champion and facilitate priority setting partnerships (PSPs) between patients, caregivers, and clinicians (stakeholders) to identify the most important unanswered questions for research (uncertainties). A NIHR–JLA and British Paediatric Neurology Association collaboration used the JLA PSP methodology. This consisted of two surveys to stakeholders: survey 1 (to identify uncertainties) and survey 2 (a prioritization survey). The final top 10 priorities were agreed by consensus in a stakeholder workshop.One hundred and thirty‐two charities and partner organizations were invited to participate. In survey 1, 701 participants (70% non‐clinicians, including CYP and parent and caregivers) submitted 1800 uncertainties from which 44 uncertainties were identified for prioritization in survey 2; from these, 1451 participants (83% non‐clinicians) selected their top 10 priorities. An unweighted amalgamated score across participant roles was used to select 26. In the final workshop, 14 health care professionals, 11 parent and caregivers, and two CYP ranked the 26 questions to finalize the top 10 priorities. Ten top priority questions were identified regarding interventions to treat CYP with CNCs and their associated comorbidities, for example, sleep, emotional well‐being, and distressing symptoms.The results of this study will inform research into the effectiveness of interventions for children with neurological conditions. [ABSTRACT FROM AUTHOR]

Background: This phenomenological study explores the perceptions, hopes, and dreams of relationships and parenting of women with a genetic intellectual disability. Method: Five women with both 22q11.2 deletion syndrome (22q11DS) and intellectual disability took part in semistructured interviews. Their subjective interpretations were analysed using interpretative phenomenological analysis. Results: Four main themes emerged: (a) challenges and acceptance of having 22q11DS, (b) desire for social acceptance and normality, (c) welcoming of emotional and practical support, and (d) individuation. The themes describe the discordance between the challenges and acceptance of having a genetic disorder, the need to be "normal," the importance and appreciation of social support, and the women's aspirations for independence. Conclusions: Young women with 22q11DS approach their adulthood with a sense of optimism and personal competence yet recognise their unique challenges. Parental support is valued despite the need for independence. The findings provide insight into the lived experience of women with 22q11DS.

Aim: To evaluate clinicians' perspectives on the impact of 'lockdown' during the COVID‐19 pandemic for children and young people with severe physical neurodisability and their families. Method: Framework analysis of comments from families during a recent service review was used to code the themes discussed according to the World Health Organization International Classification of Functioning, Disability and Health (ICF) and interpreted into emergent themes to summarize the impact of lockdown (Stage 1). They were presented to a clinician focus group for discussion (consultants and physiotherapists working in a specialist motor disorders service, [Stage 2]). Results: Three overarching themes 'Uncertainty and Anxiety', 'Exacerbation of Existing Inequalities' and 'Care Provision: Reaction, Adaptation, and Innovation' summed up the impact of the COVID‐19 pandemic on health and well‐being in children and young people with neurodisability and their families. All themes were influenced by time. Interpretation: This study reflects clinician's perceptions of family experiences of the pandemic and lockdown. Significant impact is apparent in the entire U.K. population, but the complexity of care needs for children with physical neurodisability exacerbates this. Lobbying for government policy is vital to ensure that all children, and in particular those with significant health and social care needs, are protected and continue to access services. During the restoration and recovery phase of the pandemic, there is a need for service reconfiguration that utilizes what we have learned and is adaptive to individual family circumstances. [ABSTRACT FROM AUTHOR]