Endings in therapy are discussed widely in mainstream literature, however, there is only a small amount of research that considers endings in therapy for people with intellectual disabilities.

Eight therapists were interviewed about their experience of ending therapy with people with intellectual disabilities. Interviews were analysed using Interpretative Phenomenological Analysis (IPA).

Four superordinate themes associated with endings that go well were identified: 'recognising', 'readying', 'reframing' and reflecting', with a fifth theme reflecting endings that were less successful. Participants worked hard to offer transformative experiences of endings and an overarching 'super-superordinate' theme of 'facilitating transformative endings' encompassed the findings.

Endings are a multi-faceted component of psychological therapy with people with intellectual disabilities and are significant for both client and therapist. We discuss implications for therapy adaptations and future research.

Williams syndrome (WS-OMIM 194050, orphaned number: Orpha 904) is a rare condition mostly associated with intellectual disability. People with Williams syndrome are 8 times more likely to have anxiety disorders than the general population. Therapeutic solutions to treat the anxiety remain limited, particularly nonpharmacological therapy. However, cognitive behavioral therapy (CBT) has been found efficacious in managing anxiety disorders and can be used for people with intellectual disability.

This paper describes a protocol to assess the efficiency of a CBT program based on digital support for people with Williams syndrome and anxiety based on a research methodology designed for rare diseases.

We will recruit 5 individuals with Williams syndrome and anxiety. They will participate in 9 CBT sessions. Participants will perform daily self-assessments of anxiety using a digital app, which will allow for ecological and repeated evaluation of their anxiety. This digital app will provide support for each therapy session. Anxiety and quality of life will be externally assessed before and after the program and at a 3-month follow-up. This is a single-case intervention research design with multiple baselines implying repeated measures of judgment criteria. The present protocol ensures high internal validity and will help identify encouraging contributions for later clinical trials.

Participant recruitment and data collection began in September 2019, and we project that the study findings will be available for dissemination by spring 2023.

This study will allow the assessment of the efficiency of a CBT program based on digital support to treat anxiety in people with Williams syndrome. Finally, the program could be used as an example of nonpharmacological therapy for rare diseases.

ClinicalTrials.gov ID: NCT03827525; https://clinicaltrials.gov/ct2/show/NCT03827525.

DERR1-10.2196/44393.

This paper reviews the current state of knowledge on psychological interventions with empirical evidence of efficacy in treating common psychiatric and behavioral disorders in people with intellectual disability (ID) at all stages of their life. We begin with a brief presentation of what is meant by psychiatric and behavioral disorders in this population, along with an explanation of some of the factors that contribute to the increased psychosocial vulnerability of this group to present with these problems. We then conduct a review of empirically supported psychological therapies used to treat psychiatric and behavioral disorders in people with ID. The review is structured around the three generations of therapies: Applied behavior analysis (e.g., positive behavior support), cognitive behavioral therapies (e.g., mindfulness-based cognitive therapy), and contextual therapies (e.g., dialectical behavior therapy). We conclude with some recommendations for professional practice in the fields of ID and psychiatry.

The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.

Non-pharmacological interventions are recommended for the treatment of challenging behaviours in individuals with intellectual disabilities by clinical guidelines. However, evidence for their effectiveness is ambiguous. The aim of the current meta-analysis is to update the existing evidence, to investigate long-term outcome, and to examine whether intervention type, delivery mode, and study design were associated with differences in effectiveness.

An electronic search was conducted using the databases Medline, Eric, PsychINFO and Cinahl. Studies with experimental or quasi-experimental designs were included. We performed an overall random-effect meta-analysis and subgroup analyses.

We found a significant moderate overall effect of non-pharmacological interventions on challenging behaviours (d = 0.573, 95% CI [0.352-0.795]), and this effect appears to be longlasting. Interventions combining mindfulness and behavioural techniques showed to be more effective than other interventions. However, this result should be interpreted with care due to possible overestimation of the subgroup analysis. No differences in effectiveness were found across assessment times, delivery modes or study designs.

Non-pharmacological interventions appear to be moderately effective on the short and long term in reducing challenging behaviours in adults with intellectual disabilities.

Severe behavioural problems (SBP) are a major contributor to morbidity in children with intellectual disability (ID). Medications used to treat SBP in ID are associated with a high risk of side effects. Cannabidiol has potential therapeutic effects in SBP. This pilot study aimed to investigate the feasibility of conducting a randomised placebo-controlled trial of cannabidiol to reduce SBP in children with ID.

This is a double-blind, placebo-controlled, two-armed, parallel-design, randomised controlled trial of cannabidiol in children aged 8-16 years with ID and SBP. Participants were randomised 1:1 to receive either 98% cannabidiol in oil (Tilray, Canada) or placebo orally for 8 weeks. The dose was up-titrated over 9 days to 20 mg/kg/day in two divided doses, with a maximum dose of 500 mg twice/day. The feasibility and acceptability of all study components were assessed.

Eight children were randomised, and all completed the full study protocol. There were no serious adverse events or drop-outs. Protocol adherence for key study components was excellent: study visits 100%, medication adherence 100%, blood tests 92% and questionnaire completion 88%. Parents reported a high degree of acceptability with the study design. All parents reported they would recommend the study to other families with children with similar problems. There was an efficacy signal in favour of active drug.

The findings suggest that the study protocol is feasible and acceptable to patients with ID and SBP and their families.

Severe behavioural problems (SBPs) are a common contributor to morbidity and reduced quality of life in children with intellectual disability (ID). Current medication treatment for SBP is associated with a high risk of side effects. Innovative and safe interventions are urgently needed. Anecdotal reports and preliminary research suggest that medicinal cannabis may be effective in managing SBP in children with developmental disabilities. In particular, cannabidiol (CBD) may be a plausible and safe alternative to current medications. Families who are in urgent need of solutions are seeking cannabis for their ID children with SBP. However there is no evidence from randomised controlled trials to support the use of CBD for SBP. This pilot study aims to investigate the feasibility of conducting a randomised placebo-controlled trial of CBD to improve SBP in children with ID.

This is a single-site, double-blind, parallel-group, randomised, placebo-controlled pilot study of 10 participants comparing 98% CBD oil with placebo in reducing SBP in children aged 8-16 years with ID. Eligible participants will be randomised 1:1 to receive either CBD 20 mg/kg/day or placebo for 8 weeks. Data will be collected regarding the feasibility and acceptability of all study components, including recruitment, drop-out rate, study visit attendance, protocol adherence and the time burden of parent questionnaires. Safety outcomes and adverse events will be recorded. All data will be reported using descriptive statistics. These data will inform the design of a full scale randomised controlled trial to evaluate the efficacy of CBD in this patient group.

This protocol has received ethics approval from the Royal Children's Hospital ethics committee (Human Research Ethics Committee no. 38236). Results will be disseminated through peer-reviewed journals, professional networks, conferences and social media.

ACTRN12618001852246.

The psychotropic medication and psychotherapeutic treatment of adults with intellectual disabilities study is a cross-sectional, epidemiological study carried out in Saxony, Germany. The main aim of the study is, among others, to assess the prevalence and quality of psychotropic medication in adults with ID.

Inclusion criteria are mild to profound forms of ID and an age of 18 years or older. A representative sample is realised by a two-stage sampling procedure. Study participants will be recruited from sheltered workshops (SW) and sheltered housings (SH). The stratified cluster sampling is realised by a random selection of service providing institutions followed by a random selection of adults with ID. An estimated total number of n=200 study participants via SW and n=400 via SH will be contacted to obtain data of approximately n=131 study participants recruited through SW and n=232 participants through SH. Thus, based on a psychotropic medication prevalence of 30%, an estimated number of n=109 in-depth interviews about psychotropic prescription practice will be carried out. Data collection is realised through interviews with key carers in the living environment. If psychotropics are prescribed currently, basic information (eg, dosage, treatment duration) are obtained, and a newly developed interview targeting the quality of the psychotropic medication treatment is conducted both with the carers and with the prescribing physicians. In addition to the prevalence and quality of psychotropic treatment, other parameters (eg, mental healthcare utilisation, psychiatric symptomatology, problem behaviour, institutional factors and parameters of the provision area) are assessed using well-established instruments.

Approval of the responsible ethics committee was obtained. Findings will be disseminated to participating institutions, published in journals and conferences and fill the lack of representative data that is urgently needed in this often criticised health service area. They shall help to improve mental health services in adults with ID prospectively.

NCT03558815; Pre-results.

Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning.

Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files.

Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services.

The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals.

People who identify as lesbian, gay, bisexual and transgender (LGBT) can face many challenges in society including accessing education, care and support appropriate to individual needs. However, there is a growing and evolving evidence base about the specific needs of people with intellectual disabilities (ID) in this regard.

The aim of this review was to explore the experiences of people with ID who identified as LGBT through an examination of studies that addressed their views and highlighted specific issues, concerns and service responses.

A comprehensive search of relevant databases from February 1995 to February 2015 was conducted. Studies were identified that met specific criteria that included: empirical peer reviewed studies, the use of recognised research methods and focused on people with ID whom identified as LGBT. The search yielded 161 papers in total. The search was narrowed and 37 papers were screened using rigorous inclusion and exclusion criteria. Finally, 14 papers were considered suitable for the review.

The data were analysed and key themes identified that included accessing health services, gender and sexual identity, attitudes of people with ID regarding their LGBT status, and education, supports and therapeutic interventions.

There is a need for service providers and carers to be more responsive to the concerns of people with ID who identify as LGBT to improve their health and well-being by reducing stigma and discrimination and by increasing awareness of their care and support needs. The implications are discussed in terms of policy, education, research and practice developments.

Attachment and attachment-related psychopathology has increasingly gained focus since Bowlby introduced the concept into the clinical repertoire. However, little has been done to explore attachment, or attachment-based interventions, within the context of intellectual disability. Clinical experience, however, has demonstrated significant attachment-related problems in children with intellectual disability. This article explores one such case of a 13-year-old girl with moderate intellectual disability and severe and persistent externalizing behavioural difficulties - biting, in particular. Once the severity of the behaviour was formulated within the framework of attachment, a structured attachment-focused parent-child intervention was designed in order to repair the damaged attachment between mother and daughter as a way of addressing the problematic behaviour. Outcomes demonstrated a sustained - immediately, at 3- and 6-month follow-up - positive impact of the intervention not only on the presenting problem but also on the quality of the relationship between mother and daughter. Research and clinical implications are discussed.

Many people with intellectual disability present with challenging behaviour which often has serious consequences such as the prescription of long term medication, in-patient admissions and disruption of normal daily activities. Small scale studies of Positive Behaviour Support (PBS) delivered by paid carers suggest that it reduces challenging behaviour and costs of care and improves quality of life. This study aims to investigate whether professionals training in the delivery of PBS as part of routine practice is clinically and cost effective compared to treatment as usual in community intellectual disability services.

The study is a multi-centre cluster randomised controlled trial involving community intellectual disability services in England and service users with mild to severe intellectual disability and challenging behaviour. The teams will be randomly allocated into one of two conditions, either training and support to deliver PBS or treatment as usual. We will carry out assessments of challenging behaviour, use of services, quality of life, mental health, and family and paid carer burden at six and 12 months. We will monitor treatment fidelity and we will interview a sample of paid and family carers, service users, staff and managers about what they think of the treatment and how best we can deliver it in routine care. The main outcome is reduction in challenging behaviour at one year after randomisation. We will also carry out a health economic evaluation to examine the costs and consequences of staff training in PBS.

The study findings will have significant implications for the delivery of PBS in community based services with the potential for reducing inpatient admissions and out-of-area placements for adults with intellectual disability and challenging behaviour.

This trial is registered with Clinical Trials.gov (Ref NCT01680276 ). Clinical Trials Unit: PRIMENT https://www.ucl.ac.uk/priment/ .

Psychological therapies with a proven efficacy in the general population are being adapted for use with people who have intellectual disabilities in community settings.

A systematic review of peer-reviewed literature published between 1980 and 2010 was carried out, to identify the evidence base for effective psychological interventions in challenging behaviour. Relevant databases were searched using applied key terms. Evidence was graded, according to the quality of the research. A best-evidence Matrix was produced to improve guidance for service providers and practitioners in the range, volume and quality of psychological interventions.

There is a limited amount of efficacy research that meets the most stringent standards of empirical evidence.

It is important to broaden the evidence base and consider the context of psychological interventions, alongside the values underpinning care and treatment.

Purpose. To investigate the reasons behind difficulties in recruiting patients to randomized controlled trials (RCTs) in psychiatry and to examine a database of RCTs for differences between studies in mental health and other specialities. Methods. A discussion of recent changes in research governance in the UK and Europe followed by an examination of the database of all trials supported by the Health Technology Assessment programme of the National Institute of Health Research in the UK between 1993 and 2007 to determine if three different measures, (i) time between grant approval and study start date, (ii) percentage of additional time given to extend recruitment and (iii) percentage of planned recruitment achieved, changed over the time period studied and differed between mental health, cancer and other medical disciplines. Findings. Despite attempts in the UK to accelerate the process of clinical trials in recent years, there was a significant increase in the extension time for trials to be completed (p = 0.038) and the percentage of planned recruitment to mental health studies (71%) was significantly less than for cancer (90.3%) and other studies (86.1%) (p = 0.032). Summary. These results suggest that, despite the priority afforded to the advancement of RCTs in healthcare, such studies are encountering increasing difficulty in recruiting to time and target. We suggest that this difficulty can be attributed, at least in part, to the excessively byzantine regulation and governance processes for health research in the UK, and unnecessary bureaucracy in the current National Health Service system. Mental health studies appear particularly vulnerable to delay and better systems to facilitate recruitment are required urgently for the evidence base to be improved and facilitate new cost-effective interventions.

The aim of this study was to evaluate the efficacy of psychological therapies for people with intellectual disabilities (IDs) through a systematic review and meta-analysis of the current literature. A comprehensive literature search identified 143 intervention studies. Twenty-two trials were eligible for review, and 14 of these were subsequently included in the meta-analysis. Many studies did not include adequate information about their participants, especially the nature of their IDs; information about masked assessment, and therapy fidelity was also lacking. The meta-analysis yielded an overall moderate between-group effect size, g=.682, while group-based interventions had a moderate but smaller treatment effect than individual-based interventions. Cognitive-behaviour therapy (CBT) was efficacious for both anger and depression, while interventions aimed at improving interpersonal functioning were not effectual. When CBT was excluded, there was insufficient evidence regarding the efficacy of other psychological therapies, or psychological therapies intended to treat mental health problems in children and young people with IDs. Adults with IDs and concurrent mental health problems appear to benefit from psychological therapies. However, clinical trials need to make use of improved reporting standards and larger samples.

The present study aimed to examine differences between American juvenile offenders with and without intellectual disability (ID) in offense type and risk factors. The sample consisted of adolescents with ID (n=102) and without ID (n=526) who appeared before the courts for a criminal act and for whom the Washington State Juvenile Court Assessment (WSJCA) was completed. Results showed that adolescents with ID had committed more offenses against persons compared to adolescents without ID. Few differences in risk factors were found between juvenile offenders with and without ID in the domains of school, family and use of free time. Juvenile offenders without ID more often had problems in the relationship and alcohol/drugs domain, whereas juveniles with ID more often experienced problems in the domains of attitude, aggression and skills.

This article summarizes research and commentaries on psychotherapy for adults with intellectual disabilities published since 2008.

There have been very few empirical studies of the effectiveness of psychotherapy in this context over recent years despite a strong perception that such approaches are not only necessary but also of great value. There have been some interesting, though so far only suggestive, findings concerning the relationship between intellectual level and suitability for treatment, primarily with cognitive behavioural therapy. Therapies based on mindfulness are emerging as important new developments. Despite their heritage, psychodynamic approaches continue to rely on opinion over evidence to support their use.

Research on both processes in therapy and its outcomes needs to be undertaken with renewed vigour if specialist psychotherapy for people with intellectual disability is to flourish, or indeed survive, in the public healthcare system. However, it may have much a broader value for people with intellectual disability, especially those in residential services, than can be easily quantified.

To provide an update on the mental health needs of children and adolescents with learning disabilities, by examining salient studies published predominantly in the last 12-18 months.

There have been further articles published supporting the findings of earlier landmark studies demonstrating an increased prevalence of mental health disorders in young people with learning disabilities. These articles suggest higher rates of comorbidity than were previously recognized. There are few published studies pertaining to the effectiveness of psychological and pharmacological treatments, although there is a recognition that the latter are more routinely and perhaps inappropriately administered. Antipsychotics are the most commonly prescribed group of medications and, despite a lack of evidence, continue to be prescribed more to address challenging behaviours rather than in the treatment of an identified psychiatric disorder. Reviews examining services and policies in other countries further highlight that the health and social care needs of individuals with learning disabilities are receiving more attention, with a shared vision that services should be inclusive and preferably community based.

Although there is improved knowledge of the rates of mental health disorders in young people with learning disabilities, in clinical practice these mental health needs continue to be underrecognized and untreated.