The development, feasibility and acceptability of Empower-Autism: A new psychoeducational and psychotherapeutic programme for caregivers of children recently diagnosed with autism.

LAY ABSTRACT: What is already known about the topic?Parents and carers face many challenges following their child's autism diagnosis. They often look for information, and social and emotional support. There has been relatively little research into how best to provide this support and this means that there is no evidence to guide the delivery of services. Studies have suggested that an approach called Acceptance and Commitment Therapy can help parents and carers with their adjustment and emotional wellbeing.What does this article add?This article describes the development of a new group-based programme to address the diverse needs of caregivers after their child's autism diagnosis. The new programme was developed with caregivers, autistic people and professionals. It was called Empower-Autism and contained lots of information about autism and strategies to support autistic children, alongside therapeutic aspects based on Acceptance and Commitment Therapy. The programme was delivered to 29 parents/carers in three groups. Attendance at the groups was satisfactory. Both parents/carers and facilitators liked and valued the programme and found it accessible. They made suggestions for improvements. After the programme, parents and carers described improved wellbeing. They felt more positive and more connected to other people. They also described parenting their child in a more informed and sensitive way.Implications for practice, research or policyThe new programme is being tested within a large clinical trial. If there are positive results, the programme could be recommended for delivery and this would address an important gap in evidence-based practice.

REACH-ASD: a UK randomised controlled trial of a new post-diagnostic psycho-education and acceptance and commitment therapy programme against treatment-as-usual for improving the mental health and adjustment of caregivers of children recently diagnosed with autism spectrum disorder.

BACKGROUND: Autism is a neurodevelopmental disability affecting over 1% of UK children. The period following a child's autism diagnosis can present real challenges in adaptation for families. Twenty to 50% of caregivers show clinically significant levels of mental health need within the post-diagnostic period and on an ongoing basis. Best practice guidelines recommend timely post-diagnostic family support. Current provision is patchy, largely unevidenced, and a source of dissatisfaction for both families and professionals. There is a pressing need for an evidenced programme of post-diagnostic support focusing on caregiver mental health and adjustment, alongside autism psycho-education. This trial tests the clinical and cost-effectiveness of a new brief manualised psychosocial intervention designed to address this gap. METHODS: This is a multi-centre two-parallel-group single (researcher)-blinded randomised controlled trial of the Empower-Autism programme plus treatment-as-usual versus usual local post-diagnostic offer plus treatment-as-usual. Caregivers of children aged 2-15 years with a recent autism diagnosis will be recruited from North West England NHS or local authority centres. Randomisation is individually by child, with one "index" caregiver per child, stratified by centre, using 2:1 randomisation ratio to assist recruitment and timely intervention. Empower-Autism is a group-based, manualised, post-diagnostic programme that combines autism psycho-education and psychotherapeutic components based on Acceptance and Commitment Therapy to support caregiver mental health, stress management and adjustment to their child's diagnosis. The comparator is any usual local group-based post-diagnostic psycho-education offer. Receipt of services will be specified through health economic data. PRIMARY OUTCOME: caregiver mental health (General Health Questionnaire-30) at 52-week follow-up. SECONDARY OUTCOMES: key caregiver measures (wellbeing, self-efficacy, adjustment, autism knowledge) at 12-, 26- and 52-week follow-up and family and child outcomes (wellbeing and functioning) at 52-week endpoint. SAMPLE: N=380 (approximately 253 intervention/127 treatment-as-usual). Primary analysis will follow intention-to-treat principles using linear mixed models with random intercepts for group membership and repeated measures. Cost-effectiveness acceptability analyses will be over 52 weeks, with decision modelling to extrapolate to longer time periods. DISCUSSION: If effective, this new approach will fill a key gap in the provision of evidence-based care pathways for autistic children and their families. TRIAL REGISTRATION: ISRCTN 45412843 . Prospectively registered on 11 September 2019.

A systematic review of the characteristics of adolescents with major depressive disorder in randomised controlled treatment trials

Background and Objectives. Concerns exist around the generalizability of randomised controlled trials (RCTs) for adolescents with major depressive disorder (MDD). This review assesses whether adolescents with MDD treated in RCTs are representative of clinical samples. Methods. A systematic narrative review of selection criteria used in RCTs for adolescent MDD (PROSPERO CRD42018096298). Included were studies assessing psychological, pharmacological or combination treatments. Results. 52 studies were included. Overall, the reporting of selection criteria (defined as both inclusion and exclusion criteria), in the 23 psychotherapy trials was low (52% did not report on comorbid emotional disorders and 48% did not report on suicidal ideation). In contrast, the majority of selection criteria were reported in the 22 medication trials and the 7 combination trials. Where selection criteria were reported, most adolescents with comorbidities were excluded from psychotherapy and medication trials. The 7 combination trials included more adolescents with comorbidities. Of note, only 10 of the 52 studies reported on self-harm as a selection criteria. Conclusion. Reporting of the characteristics of depressed adolescents was poor in psychotherapy trials. Both psychotherapy and medication trials excluded many adolescents with co-morbid conditions, however combination trials tended to be more inclusive. There is concern that many RCTs for adolescent MDD may not be generalizable to clinical populations, particularly with regards to comorbidity, self-harm and suicidal ideation. The findings suggest that clinicians need to view the evidence base and guidelines developed from RCTs with discernment. Pragmatic trials are needed with representative clinical populations and comprehensive reporting of the selection criteria.

Feasibility study of a new behavioural activation programme for young people with depressed mood.

BACKGROUND: Behavioural activation (BA) is effective in adults with depression but the evidence for young people (YP) is less clear. We therefore developed and tested a new coproduced BA programme. METHOD: In phase one (2014 to 2015 inclusive), we codeveloped with young people attending specialist child and adolescent mental health service (CAMHS) an 8-session BA workbook. In Phase two (2019 to 2020 inclusive), we ran an uncontrolled feasibility study in two specialist CAMHS, with BA being offered to YP by less specialised staff. RESULTS: In phase one, we tested the workbook with 15 YP with depression and other comorbidities. Satisfaction was good from both YP and staff, and 9 YP reported improvement in mood. In phase two, 51 YP were offered BA; 15 declined to take part. 36 consented with three dropping out after consent. 33 YP (mean age 14.6, 12 males, 24 females) continued treatment attending a mean of 6.6 sessions. At the end of treatment, youth-rated Mood and Feeling Questionnaire (MFQ) mean score decreased from 43.2 to 27.6, difference 14.6 (95% CI 8.7 to 20.2; n = 28), and Clinician Global Assessment Score (CGAS) mean score increased from 52.3 to 69.8, difference 18.0 (95% CI 11.9 to 24.2; n = 29). Of the 33 YP who participated in therapy, 12 (36%) recovered and were discharged. CONCLUSIONS: This programme demonstrated preliminary evidence for effectiveness and utility. Less specialised staff were able to use BA, and this may reduce secondary waits for more specialist therapy. More research is needed about the role of BA in specialist CAMHS.

Exploring Behavioural Activation as a treatment for low mood within CAMHS: An IPA study of adolescent experiences.

Low mood is the most commonly diagnosed mental health condition affecting adolescents; however, it remains complex to treat due to multi-systemic risk and maintaining factors. Behavioural Activation (BA) is a brief therapy which demonstrates promising treatment outcomes, although limited qualitative accounts exist of how adolescents experience this. This is one of the first studies undertaken in Child and Adolescent Mental Health Services (CAMHS) to explore the perspectives of adolescent's with low mood who have received BA therapy. Interpretative phenomenological analysis was conducted from one-to-one interviews with nine adolescents who received BA, generating an idiographic account of their experiences. Three superordinate themes emerged: how the format of BA can promote the integration of coping skills into one's life; how interpersonal connections and therapeutic relationships may improve intervention outcomes; and how BA principles could be internalised as part of a young person's day-to-day life. Participants valued the structure and flexibility of the manualised approach, forming an alliance with the therapist, and enhancing interpersonal relationships. This study details how BA can enhance resiliency skills for adolescents experiencing low mood and illustrates some of the change process at inter and intrapersonal levels, which should guide further youth-led research.

Inpatient treatment in child and adolescent psychiatry--a prospective study of health gain and costs.

BACKGROUND: Inpatient treatment is a complex intervention for the most serious mental health disorders in child and adolescent psychiatry. This is the first large-scale study into its effectiveness and costs. Previous studies have been criticised for methodological weaknesses. METHODS: A prospective cohort study, including economic evaluation, conducted in 8 UK units (total n = 150) with one year follow-up after discharge. Patients acted as their own controls. Outcome measurement was the clinician-rated Childhood Global Assessment Scale (CGAS); researcher-rated health needs assessment; parent- and teacher-rated symptomatology. RESULTS: We found a significant (p < .001) and clinically meaningful 12-point improvement in CGAS following mean 16.6 week admission (effect size .92); this improvement was sustained at 1 year follow-up. Comparatively, during the mean 16.4 week pre-admission period there was a 3.7-point improvement (effect size .27). Health needs assessment showed similar gain (p < .001, effect size 1.25), as did teacher- and parent-rated symptoms. Improvement was found across all diagnoses. Longer stays, positive therapeutic alliance and better premorbid family functioning independently predicted better outcome. Mean cost of admission was pound 24,100; pre-admission and post-discharge support costs were similar. CONCLUSIONS: Inpatient treatment is associated with substantive sustained health gain across a range of diagnoses. Lack of intensive outpatient-treatment alternatives limits any unqualified inference about causal effects, but the rigour of measurement here gives the strongest indication to date of the positive impact of admission for complex mental health problems in young people.

Mental health needs of young offenders in custody and in the community.

BACKGROUND: Research has revealed high levels of mental health needs in young offenders but many studies have been small, focusing on specific populations. AIMS: To evaluate the mental health and psychosocial needs of a nationally representative sample of juvenile offenders in England and Wales, including female offenders and those from Black and minority ethnic groups. METHOD: A cross-sectional survey of 301 young offenders, 151 in custody and 150 in the community, was conducted in six geographically representative areas across England and Wales. Each young person was interviewed to obtain demographic information, mental health and social needs, and psychometric data. RESULTS: Young offenders were found to have high levels of needs in a number of different areas including mental health (31%), education/work (36%) and social relationships (48%). Young offenders in the community had significantly more needs than those in secure care and needs were often unmet. One in five young offenders was also identified as having a learning disability (IQ<70). CONCLUSIONS: Needs for young offenders were high but often unmet. This emphasises the importance of structured needs assessment within custody and community settings in conjunction with a care programme approach that improves continuity of care.