The development of the Helping your Anxious Child programme: a parent-mediated group intervention for parents of autistic children in South Asia.

Autistic children are at increased risk of experiencing a range of mental health difficulties, including anxiety. A number of intervention programmes are now available in high-income countries to support autistic children. However, to date there are no evidence-based interventions to support families of such children in South Asia. Based on consultations with clinicians, researchers and parents in Bangladesh and Sri Lanka, we developed a culturally tailored two-session skills-based group programme for parents whose autistic children present with anxiety. This paper describes the process of creating this programme, to be delivered by mental health professionals.

Coping with uncertainty in everyday situations (CUES©) to address intolerance of uncertainty in autistic children: an intervention feasibility trial.

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.

Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families.

LAY ABSTRACT: Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the 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. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children's ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families.

A clinical and cost-effectiveness trial of a parent group intervention to manage challenging restricted and repetitive behaviours in young children with autism spectrum disorder: study protocol for a randomised controlled trial.

BACKGROUND: Restricted and repetitive behaviours vary greatly across the autism spectrum, and although not all are problematic some can cause distress and interfere with learning and social opportunities. We have, alongside parents, developed a parent group based intervention for families of young children with autism, which aims to offer support to parents and carers; helping them to recognise, understand and learn how to respond to their child's challenging restricted repetitive behaviours. METHODS: The study is a clinical and cost-effectiveness, multi-site randomised controlled trial of the Managing Repetitive Behaviours (MRB) parent group intervention versus a psychoeducation parent group Learning About Autism (LAA) (n = 250; 125 intervention/125 psychoeducation; ~ 83/site) for parents of young children aged 3-9 years 11 months with a diagnosis of autism. All analyses will be done under intention-to-treat principle. The primary outcome at 24 weeks will use generalised estimating equation (GEE) to compare proportion of children with improved RRB between the MRB group and the LAA group. The GEE model will account for the clustering of children by parent groups using exchangeable working correlation. All secondary outcomes will be analysed in a similar way using appropriate distribution and link function. The economic evaluation will be conducted from the perspective of both NHS costs and family access to local community services. A 'within trial' cost-effectiveness analysis with results reported as the incremental cost per additional child achieving at least the target improvement in CGI-I scale at 24 weeks. DISCUSSION: This is an efficacy trial to investigate the clinical and cost-effectiveness of a parent group based intervention designed to help parents understand and manage their child's challenging RRB. If found to be effective, this intervention has the potential to improve the well-being of children and their families, reduce parental stress, greatly enhance community participation and potential for learning, and improve longer-term outcomes. TRIAL REGISTRATION: Trial ID: ISRCTN15550611 Date registered: 07/08/2018. Sponsor and Monitor: Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust R&D Manager Lyndsey Dixon, Address: St Nicholas Hospital, Jubliee Road, Gosforth, Newcastle upon Tyne NE3 3XT, lyndsey.dixon@cntw.nhs.uk , Tel: 0191 246 7222.

Should patients still be copied into their letters? A rapid review.

OBJECTIVE: To systematically identify, synthesise and evaluate the strength of the international evidence on copy letter practice. METHODS: A systematic search identified original research studies on copy letters. Searches were limited by date and language as permitted in rapid review methods guidance. Article screening, data extraction and strength of evidence assessment were completed independently by multiple authors. RESULTS: Thirty-seven studies were included. There was a lack of information about copy letter content. Many patients report being satisfied with copy letters, understand them and find them useful. However, there is a lack of objective, high quality evidence to suggest that copy letters increased patient understanding or improved physical or psychological health outcomes. Many letters were written at a level which would make them inaccessible to patients with low health literacy. The strength of evidence was either "emerging" or "acceptable" practice for most studies (n = 30). CONCLUSION: There is a lack of objective, high quality evidence to demonstrate the benefits of copy letters as described in health policy. PRACTICE IMPLICATIONS: Personalising letters and using lay rather than medical terms appears to be useful for improving copy letter readability. Further research is required to explore this, especially in people with low health literacy levels.