Approaches to improving mental health care for autistic children and young people: a systematic review and meta-analysis.

Autistic children and young people (CYP) experience mental health difficulties but face many barriers to accessing and benefiting from mental health care. There is a need to explore strategies in mental health care for autistic CYP to guide clinical practice and future research and support their mental health needs. Our aim was to identify strategies used to improve mental health care for autistic CYP and examine evidence on their acceptability, feasibility, and effectiveness. A systematic review and meta-analysis were carried out. All study designs reporting acceptability/feasibility outcomes and empirical quantitative studies reporting effectiveness outcomes for strategies tested within mental health care were eligible. We conducted a narrative synthesis and separate meta-analyses by informant (self, parent, and clinician). Fifty-seven papers were included, with most investigating cognitive behavioral therapy (CBT)-based interventions for anxiety and several exploring service-level strategies, such as autism screening tools, clinician training, and adaptations regarding organization of services. Most papers described caregiver involvement in therapy and reported adaptations to communication and intervention content; a few reported environmental adjustments. In the meta-analyses, parent- and clinician-reported outcomes, but not self-reported outcomes, showed with moderate certainty that CBT for anxiety was an effective treatment compared to any comparison condition in reducing anxiety symptoms in autistic individuals. The certainty of evidence for effectiveness, synthesized narratively, ranged from low to moderate. Evidence for feasibility and acceptability tended to be positive. Many identified strategies are simple, reasonable adjustments that can be implemented in services to enhance mental health care for autistic individuals. Notable research gaps persist, however.

Watch Me Play!: protocol for a feasibility study of a remotely delivered intervention to promote mental health resilience for children (ages 0-8) across UK early years and children's services.

BACKGROUND: Half of mental health problems are established by the age of 14 years and 75% by 24 years. Early intervention and prevention of mental ill health are therefore vitally important. However, increased demand over recent years has meant that access to child mental health services is often restricted to those in severest need. Watch Me Play! (WMP) is an early intervention designed to support caregiver attunement and attention to the child to promote social-emotional well-being and thereby mental health resilience. Originally developed in the context of a local authority mental health service for children in care, it is now also delivered online as a low intensity, scalable, preventative intervention. Although WMP shows promise and is already used in some services, we do not yet know whether it is effective. METHODS: A non-randomised single group feasibility study with embedded process evaluation. We propose to recruit up to 40 parents/carers of children aged 0-8 years who have been referred to early years and children's services in the UK. WMP involves a parent watching the child play and talking to their child about their play (or for babies, observing and following signals) for up to 20 min per session. Some sessions are facilitated by a trained practitioner who provides prompts where necessary, gives feedback, and discusses the child's play with the caregiver. Services will offer five facilitated sessions, and parents will be asked to do at least 10 additional sessions on their own with their child in a 5-week period. Feasibility outcomes examined are as follows: (i) recruitment, (ii) retention, (iii) adherence, (iv) fidelity of delivery, (v) barriers and facilitators of participation, (vi) intervention acceptability, (vii) description of usual care, and (viii) data collection procedures. Intervention mechanisms will be examined through qualitative interview data. Economic evaluation will be conducted estimating cost of the intervention and cost of service use for child and parents/carers quality-adjusted life years. DISCUSSION: This study will address feasibility questions associated with progression to a future randomised trial of WMP. TRIAL REGISTRATION: ISRCTN13644899 . Registered on 14th April 2023.

Measuring quality of life of adults with intellectual disabilities: Psychometric evaluation of the personal outcomes scale in the United Kingdom.

BACKGROUND: The Personal Outcomes Scale (POS) is a scale developed to measure quality of life of adults (18+) with intellectual disability. Previous studies have reported good fit for Spanish and Portuguese language versions of POS. AIMS: This study aimed to evaluate the factor structure of the English language version of POS when used to measure the quality of life of adults (18+) with intellectual disability in the UK. MATERIALS AND METHODS: Analysis was conducted on POS data from 310 adults with an intellectual disability. First and second order factor models and multi-level models were used to assess fit. RESULTS: There was poor fit to the data for all tested models. We estimated that 23% of variance in POS scores was accounted for by interviewer cluster. DISCUSSION: This was the first UK-based evaluation of POS and our data did not confirm the factor structure of the POS measure. The identification of systematic variability within the dataset indicates that inter-rater reliability is a potential limitation of the POS tool. CONCLUSION: Further research is needed to investigate inter-rater reliability of POS interviewers and to explore factor structure.

Spending leisure time together: Parent child relationship in families of children with an intellectual disability.

BACKGROUND: Relationship quality between a parent and a child typically differs between families with a child with intellectual disability (ID) and families with other children. Parent-child relationship quality matters in ID as it has been linked with child outcomes. However, there are few research studies examining factors that are related to parent-child relationship quality in ID. AIMS: The aim of the present study was to investigate factors associated with parent-child relationship quality in families of children with ID. In particular, we aimed to examine the association between the amount of time parents and children spend together in leisure activities and parent-child relationship quality. METHODS AND PROCEDURES: The sample was drawn from the 1000 Families Study, a survey including parent-reported data from families of children with ID aged 4-16 years. Measures of parent-child relationship quality and shared parent-child time were available. OUTCOMES: Regression analyses showed that parental investment in shared leisure time was significantly associated with parent-child closeness and conflict, even after controlling for a number of factors related to relationship quality. Parental psychological distress was also associated with parent-child relationship quality. CONCLUSIONS AND IMPLICATIONS: Interventions that aim to improve parent-child relationship quality may want to investigate the role of shared parent-child time in leisure activities as one of the mechanisms of change.

The impact of the COVID pandemic on working age adults with disability: Meta-analysis of evidence from four national surveys.

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID-19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID-19. We sought to compare the impact of the early stages of the COVID-19 pandemic and associated government responses among working age adults with and without disabilities in the UK on; COVID-19 outcomes, health and wellbeing, employment and financial security, health behaviours, and conflict and trust. We undertook secondary analysis of data collected in four UK longitudinal surveys; the Millennium Cohort Study, Next Steps, the British Cohort Study and the National Child Development Study. Combining analyses across surveys with random effects meta-analysis, there was evidence that people with disabilities were significantly more likely to report having had COVID-19 and had significantly increased levels of stress, less exercise, poorer sleep patterns, more conflict with their partner and others in their local area, and to have less trust in the government. While most outcomes did not differ significantly between participants with and without disability, the findings suggest that in the early days of COVID-19 a detrimental impact emerges for those with disabilities which is more pronounced among older people with disabilities. Future research is needed to determine the longer-term impact of the pandemic.

Analysing trends of psychiatric disorders, treatment and service use across time in adults with borderline intellectual impairment: A cross-sectional study of private households.

While there is evidence that mental health problems are more prevalent in people with borderline intellectual functioning (BIF) compared to the general population, it is not known to what extent this has varied or changed over time and whether there have been changes in access to services. This paper compares the prevalence rates of psychiatric disorders and monitors trends in treatment and services in this population compared to the general population. We conducted secondary analysis on the Adult Psychiatric Morbidity Surveys carried out in England in 2000, 2007 and 2014. The total sample analysed included 21,796 participants, with 12.8% of individuals identified with BIF (n = 2786). Regression models were used to examine trends in psychiatric disorders, treatment and service use across the three datasets. People with BIF had significantly higher odds of developing mood and anxiety disorders, psychosis, drug dependence and suicidal behaviour than the general population, increasing at each subsequent timepoint. They received significantly more pharmacological treatments than the general population but have had increasingly more access to general practitioners, community care and daycare services over time. This study shows increasing prevalence rates of several mental disorders in people with BIF. Access to day-care, community care and healthcare services has increased over time for this group but not formal psychiatric care. These changes over time underline some of the problems this population faces, emphasizing a need to recognize that this is a population often overlooked in research and clinical practice.

Health and healthcare for people with disabilities in the UK during the COVID-19 pandemic.

BACKGROUND: While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. OBJECTIVE: This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without disability. METHODS: Longitudinal analysis of 12,703 adults (16-64 years) who participated in W9 (2017-2019) and the April and/or May COVID-19 special surveys of the UK Understanding Society study. Descriptive analyses and Poisson regression (adjusted for age, gender, ethnicity and financial stress) were conducted to estimate associations between disability (measured at Wave 9) and a number of different COVID-19-related health and health care outcomes (COVID-19 symptoms, testing and hospitalisation), mental health and loneliness, and non-COVID-19 related health care (e.g. outpatient and inpatient hospital care, prescription medications). RESULTS: Results from the fully-adjusted regression models found that people with disability were more likely: to be hospitalised if symptomatic (adjusted PRR 3.0 95% 1.07-8.43); to experience current symptoms of psychological distress (PRR 1.15, 95% CI 1.05-1.26) and to report being lonely (PRR 1.75, 95% CI 1.46-2.09) compared to non-disabled people. People with disability reported much higher levels of comorbidities than people without disability. However, inability to access health care and treatment were similar. CONCLUSIONS: As the UK opens up, it is important that health care services and social policy address the poor mental health and social isolation of people with disability so that the inequalities occurring early in the pandemic do not become further entrenched.

Effects of the COVID-19 pandemic on mental healthcare and services: results of a UK survey of front-line staff working with people with intellectual disability and/or autism.

AIMS AND METHOD: Mental health services have changed the way they operate during the COVID-19 pandemic. We investigated the challenges and innovations reported by staff working in services for people with intellectual disability and/or autism in National Health Service (NHS) and non-NHS sectors, and in in-patient and community settings. RESULTS: Data were drawn from 648 staff who participated in a UK-wide online survey. Issues around infection risk and mitigation were more important to those working in the NHS and in-patient settings. Community staff were more likely to express concern about the practicalities of a rapid shift to remote working and engaging patients remotely. Qualitative data revealed support for maintaining remote staff working and remote service provision post-pandemic. CLINICAL IMPLICATIONS: Given the current emphasis on community support for people with intellectual disability and/or autism, the focus of research and clinical practice should be the development of accessible and effective models of remote service provision.

The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. METHODS: Secondary analysis of data collected in Wave 9 and the special April, May and June COVID-19 monthly surveys of 'Understanding Society', the UK's main annual household panel study. RESULTS: During the first 3 months of the introduction of the COVID-19 lockdown in the UK, respondents with disability were more likely than their peers to be working reduced hours and experience higher levels of financial stress. These differences were attenuated, but not eliminated, when estimates were adjusted to take account of pre-lockdown financial status. CONCLUSIONS: Working age adults with disability were particularly disadvantaged by the financial impact of the COVID-19 lockdown in the UK. The UN Secretary-General António Guterres has stated the need for a disability-inclusive COVID-19 government response. The results of our analysis suggest that these pleas have either not been heeded, or if measures have been implemented, they have so far been ineffectual in the UK.

Early Positive Approaches to Support (E-PAtS) for Families of Young Children With Intellectual Disability: A Feasibility Randomised Controlled Trial.

Background: Parents of children with intellectual disabilities are likely to experience poorer mental well-being and face challenges accessing support. Early Positive Approaches to Support (E-PAtS) is a group-based programme, co-produced with parents and professionals, based on existing research evidence and a developmental systems approach to support parental mental well-being. The aim of this study was to assess the feasibility of community service provider organisations delivering E-PAtS to parents/family caregivers of young children with intellectual disability, to inform a potential definitive randomised controlled trial of the effectiveness and cost-effectiveness of E-PAtS. Methods: This study was a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to two parents/family caregivers of a child (18 months to <6 years old) with intellectual disability were recruited at research sites and allocated to intervention (E-PAtS and usual practise) or control (usual practise) on a 1:1 basis at cluster (family) level. Data were collected at baseline and 3 and 12 months' post-randomisation. The following feasibility outcomes were assessed: participant recruitment rates and effectiveness of recruitment pathways; retention rates; intervention adherence and fidelity; service provider recruitment rates and willingness to participate in a future trial; barriers and facilitating factors for recruitment, engagement, and intervention delivery; and feasibility of collecting outcome measures. Results: Seventy-four families were randomised to intervention or control (n = 37). Retention rates were 72% at 12 months post-randomisation, and completion of the proposed primary outcome measure (WEMWBS) was 51%. Recruitment of service provider organisations and facilitators was feasible and intervention implementation acceptable. Adherence to the intervention was 76% and the intervention was well-received by participants; exploratory analyses suggest that adherence and attendance may be associated with improved well-being. Health economic outcome measures were collected successfully and evidence indicates that linkage with routine data would be feasible in a future trial. Conclusions: The E-PAtS Feasibility RCT has demonstrated that the research design and methods of intervention implementation are generally feasible. Consideration of the limitations of this feasibility trial and any barriers to conducting a future definitive trial, do however, need to be considered by researchers. Clinical Trial Registration: https://www.isrctn.com, identifier: ISRCTN70419473.

The Early Positive Approaches to Support (E-PAtS) study: study protocol for a feasibility cluster randomised controlled trial of a group programme (E-PAtS) for family caregivers of young children with intellectual disability.

BACKGROUND: Children with intellectual disability have an IQ < 70, associated deficits in adaptive skills and are at increased risk of having clinically concerning levels of behaviour problems. In addition, parents of children with intellectual disability are likely to report high levels of mental health and other psychological problems. The Early Positive Approaches to Support (E-PAtS) programme for family caregivers of young children (5 years and under) with intellectual and developmental disabilities is a group-based intervention which aims to enhance parental psychosocial wellbeing and service access and support positive development for children. The aim of this study is to assess the feasibility of delivering E-PAtS to family caregivers of children with intellectual disability by community parenting support service provider organisations. The study will inform a potential, definitive RCT of the effectiveness and cost-effectiveness of E-PAtS. METHODS: This study is a feasibility cluster randomised controlled trial, with embedded process evaluation. Up to 2 family caregivers will be recruited from 64 families with a child (18 months to 5 years) with intellectual disability at research sites in the UK. Participating families will be allocated to intervention: control on a 1:1 basis; intervention families will be offered the E-PAtS programme immediately, continuing to receive usual practice, and control participants will be offered the opportunity to attend the E-PAtS programme at the end of the follow-up period and will continue to receive usual practice. Data will be collected at baseline, 3 months post-randomisation and 12 months post-randomisation. The primary aim is to assess feasibility via the assessment of: recruitment of service provider organisations; participant recruitment; randomisation; retention; intervention adherence; intervention fidelity and the views of participants, intervention facilitators and service provider organisations regarding intervention delivery and study processes. The secondary aim is preliminary evaluation of a range of established outcome measures for individual family members, subsystem relationships and overall family functioning, plus additional health economic outcomes for inclusion in a future definitive trial. DISCUSSION: The results of this study will inform a potential future definitive trial, to evaluate the effectiveness and cost-effectiveness of the E-PAtS intervention to improve parental psychosocial wellbeing. Such a trial would have significant scientific impact internationally in the intellectual disability field. TRIAL REGISTRATION: ISRCTN70419473.

Social support and coping as mediators or moderators of the impact of work stressors on burnout in intellectual disability support staff.

Theories applied to work stress predict that coping will mediate and support will moderate the impact of work demands on worker well-being. We explored the mediating and moderating effects of coping and support on the relationship between perceived work demands and burnout in support staff working with adults with intellectual disabilities. Ninety-six support staff completed questionnaires that measured demographic factors, perceived work demands, coping, support, and burnout. A sub-sample participated in a follow-up 22 months later. Cross-sectional regression analyses revealed a relationship between work demands and emotional exhaustion burnout that reduced when wishful thinking coping was introduced as a predictor. Exploration of multiple mediator effects using bootstrap methods revealed that wishful thinking partially mediated the relationship between work demands and emotional exhaustion but practical coping did not. Practical coping had a main effect relationship with personal accomplishment, and there was evidence that support moderated the impact of work demands on personal accomplishment (although not fully consistent with theory). Study variables, other than personal accomplishment, were stable over 22 months but no longitudinal relationships between coping and burnout was found. These findings emphasise the importance of coping in managing work demands and for the development of burnout in support staff.