Understanding the support experiences of families of children with autism and sensory processing difficulties: A qualitative study.

BACKGROUND: Support, such as information, advice and therapies, can play a vital role in the lives of families of autistic children. However, little is known about the support experiences of UK parents and carers. AIM: To explore experiences of and access to support for families of children with autism and sensory processing difficulties, from the perspective of parents and carers. METHODS: Semi-structured, timeline-assisted interviews were conducted with parents/carers of 30 children aged 5-11, exploring experiences of support. Framework analysis was used to identify themes in the interview data. RESULTS: Support varied widely and was not accessed equitably. Specialist autism support, together with support from other parents and voluntary organizations, was perceived as more useful than statutory and nonspecialist provision. Unmet support needs included an ongoing point of contact for information and advice for parents, and access to direct therapy and specialist mental health provision for children. CONCLUSIONS: Findings emphasize the need for a clear pathway of support following autism diagnosis, autism-specific training for professional service providers and specialist provision tailored to the needs of autistic children. PATIENT OR PUBLIC CONTRIBUTION: An advisory group of four parents of children with autism provided feedback on study procedures and materials, including participant information sheets and timeline completion instructions.

Sensory integration therapy versus usual care for sensory processing difficulties in autism spectrum disorder in children: study protocol for a pragmatic randomised controlled trial.

BACKGROUND: Autism spectrum disorder (ASD) is a common lifelong condition affecting 1 in 100 people. ASD affects how a person relates to others and the world around them. Difficulty responding to sensory information (noise, touch, movement, taste, sight) is common, and might include feeling overwhelmed or distressed by loud or constant low-level noise (e.g. in the classroom). Affected children may also show little or no response to these sensory cues. These 'sensory processing difficulties' are associated with behaviour and socialisation problems, and affect education, relationships, and participation in daily life. Sensory integration therapy (SIT) is a face-to-face therapy or treatment provided by trained occupational therapists who use play-based sensory-motor activities and the just-right challenge to influence the way the child responds to sensation, reducing distress, and improving motor skills, adaptive responses, concentration, and interaction with others. With limited research into SIT, this protocol describes in detail how the intervention will be defined and evaluated. METHODS: This is a two-arm pragmatic individually 1:1 randomised controlled trial with an internal pilot of SIT versus usual care for primary school aged children (aged 4 to 11 years) with ASD and sensory processing difficulties; 216 children will be recruited from multiple sources. Therapy will be delivered in clinics meeting full fidelity criteria for manualised SIT over 26 weeks (face-to-face sessions: two per week for 10 weeks, two per month for 2 months; telephone call: one per month for 2 months). Follow-up assessments will be completed at 6 and 12 months post-randomisation. Prior to recruitment, therapists will be invited to participate in focus groups/interviews to explore what is delivered as usual care in trial regions; carers will be invited to complete an online survey to map out their experience of services. Following recruitment, carers will be given diaries to record their contact with services. Following intervention, carer and therapist interviews will be completed. DISCUSSION: Results of this trial will provide high-quality evidence on the clinical and cost effectiveness of SIT aimed at improving behavioural, functional, social, educational, and well-being outcomes for children and well-being outcomes for carers and families. TRIAL REGISTRATION: ISRCTN14716440 . Registered on 8 November 2016.

Engaging young people who misuse substances in treatment.

PURPOSE OF REVIEW: The focus of this review is to examine service utilization, treatment effectiveness, and future directions for adolescents who misuse substances. RECENT FINDINGS: Although the effectiveness of treatments has improved in the last two decades, young people's utilization of services has remained relatively stable. This is disconcerting because early intervention improves outcomes and deterioration is associated with physical, psychological, and social problems. The requirement for coordinated service provision across a wide range of treatment agencies cannot be emphasized enough, because young substance misusers come to services with a variety of symptoms and problems. It is encouraging that, to date, treatment studies indicate that adolescents in almost all types of treatment reduce their use of substances. The greatest reductions are shown for family therapy, followed by cognitive behavior therapy (CBT), motivational enhancement therapy (MET)/CBT, MET behavior therapy, and pharmacological treatment. Despite the developing treatment literature, important methodological limitations restrict comparability between studies. SUMMARY: The requirement for holistic, systematic assessments should include adolescents' social contexts, trauma, and psychiatric and physical illnesses because they are the cornerstones to understanding engagement and retention. Our review shows the importance of coordinating primary healthcare, mental health, and substance abuse treatment facilities, and highlights networking between other providers as integral to providing an optimal response to this unpredictable, often marginalized, group.

Survey of a second opinion clinic in child and adolescent psychiatry.

OBJECTIVES: Second opinion is a medical opinion provided by a second physician/ medical expert after first receiving an opinion by another physician/ medical expert. Little is known about the provision of second opinion in Child and Adolescent Mental Health Services (CAMHS). This study describes the second opinion service provided by the Child and Adolescent Mental Health Services (CAMHS) in the South Wales region. METHODS: We undertook a survey of a second opinion service in Child and Adolescent Mental Health Services (CAMHS). We also assessed whether the recommendations made by the second opinion clinic were implemented by the referrers. RESULTS: The diagnoses were not changed in 68% of the cases but alternative treatments were suggested. In 90% of the cases the treatment recommended by the clinic was implemented and nearly 70% of the patients showed improvement with the recommended treatment. CONCLUSION: A second opinion service can provide valuable support and expertise to CAMHS and the referred families.

Involving patients and their carers in educating and training practitioners.

PURPOSE OF REVIEW: We summarize and discuss recent work that highlights the role of patients and carers in educating practitioners in the light of earlier findings. RECENT FINDINGS: In today's National Health Services in the UK, a changing value base is emerging based on the participation of practitioners, patients and carers, with each group contributing to the education and training of healthcare professionals. The role of patients and carers in education is changing as the value of their experience and expertise is acknowledged. Now professionals are more actively recognizing that service users can contribute usefully to teaching in more unique ways, as 'experts' in their illness. They bring different perspectives and ways of thinking that can instill a new dimension to delivering healthcare services and training. Their expertise is defined by experience, and this different perspective gives them a unique role in teaching. They represent a potential teaching resource for medical education that is grossly underutilized. SUMMARY: Patients and carers are experts in their particular circumstances and blending their expertise with that of professionals is likely to contribute to the best outcome in a particular situation. They are a valuable resource as potential teachers at all stages of medical education.