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Adults with intellectual disability experience increased rates of mental health disorders and adverse mental health outcomes.
Aim
Explore childhood risk factors associated with adverse mental health outcomes during adulthood as defined by high cost of care, use of psychotropic medication without a severe mental illness and psychiatric hospital admissions.
Method
Data on 137 adults with intellectual disability were collected through an intellectual disability community service in an inner London borough. Childhood modifiable and non-modifiable risk factors were extracted from records to map onto variables identified as potential risk factors. Logistic and linear regression models were employed to analyse their associations with adverse outcomes.
Results
We showed that the co-occurrence of intellectual disability with autism spectrum disorder and/or attention-deficit hyperactivity disorder (ADHD) were associated with psychotropic medication use and high-cost care packages. However, when challenging behaviour during childhood was added, ADHD and autism spectrum disorder were no longer significant and challenging behaviour better explained medication prescribing and higher cost care. In addition, the severity of intellectual disability was associated with higher cost care packages. Ethnicity (Black and mixed) also predicted higher cost of care.
Conclusions
Challenging behaviour during childhood emerged as a critical variable affecting outcomes in young adulthood and mediated the association between adult adverse mental health outcomes and co-occurring neurodevelopmental conditions, that is, ADHD and autism. These findings emphasise the need for effective early intervention strategies to address challenging behaviour during childhood. Such interventions for challenging behaviour will need to take into consideration autism and ADHD.
An introduction and overview of the mental health conditions relevant to people with intellectual disability. The chapter focuses on the evidence base to support or refute whether they suffer greater rates of mental health problems, Psychiatric classification and prescribing; Comparison tables of international classification of diseases (ICD) versions 10 and 11; and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) 4 and 5 and DC-LD.
Autism Spectrum Disorders (ASDs) are a group of severe developmental and neuropsychiatric disorders usually apparent by the age of three. Autism, referred to as autism spectrum disorder in the 11th revision of the International Classification of Diseases (ICD-11), is a neurodevelopmental condition characterised by persistent deficits in social interaction and social communication, as well as a range of restricted, repetitive behaviours (World Health Organization 2018). The onset of autism is in the developmental period (0–18 years of age), though for some autistic persons the symptoms may manifest later in life, at a time of increased social demands (World Health Organization 2018). In addition to the aforementioned core autistic features, many autistic people have associated symptoms, including hypo- or hypersensitivities to sensory stimuli, difficulties describing their emotional state (alexithymia), and problems with gross motor co-ordination The chapter will discuss the interface between autism spectrum disorder and intellectual disability and the potential management of the disorder. It will also cover the gender variations in presentation.
Well documented in the lives of people with intellectual disability are greatly increased occurrences of adverse life events, exposure to abuse (emotional, physical, sexual), neglect, exploitation, victimisation, and hate crimes, in contrast to the general population. Shockingly, abuse has been reported in developmental service systems at even higher rates and in specialist treatment units such as Winterbourne View and Whorlton Hall. People with intellectual disability also experience trauma associated with physical restraint to manage behaviours that challenge services, negative consequences of psychotropic medication, greater exposure to painful medical procedures consequent to health issues, particularly in early and late stages of life and greater than typical discontinuities in care related to hospital admissions, respite, and staff turnover in group and institutional living. The evidence to support medication treatment in post-traumatic stress disorder is reviewed.
Edited by
Roland Dix, Gloucestershire Health and Care NHS Foundation Trust, Gloucester,Stephen Dye, Norfolk and Suffolk Foundation Trust, Ipswich,Stephen M. Pereira, Keats House, London
Working within psychiatric intensive or low secure care requires effective multidisciplinary teamwork. This chapter outlines factors that contribute to the essential makeup as well as cohesion of such a team. This is especially pertinent within what can be a demanding and emotionally fraught environment. Management of challenging behaviour displayed by patients can prove difficult for both individual team members and the whole team. Resilience is needed, and this chapter highlights valuable aspects to positively improve team functioning within difficult clinical situations.
Edited by
Roland Dix, Gloucestershire Health and Care NHS Foundation Trust, Gloucester,Stephen Dye, Norfolk and Suffolk Foundation Trust, Ipswich,Stephen M. Pereira, Keats House, London
Patients with borderline personality disorder often pose challenges in various inpatient settings. It is becoming more common for the patients that exhibit severe disturbed or high-risk behaviour within the context of this diagnosis to be transferred to psychiatric intensive care units (PICUs). The role of the PICU is widely regarded as one which can provide focused, short-term interventions for high-risk patients with mental illness; therefore, the very nature of borderline personality disorder contradicts such admission criteria. This chapter provides an overview of the common presentation and complexities of this patient demographic in a PICU and provides suggestions for management strategies. The chapter also advocates an emphasis on professionals being mindful of the patient pathway from PICU to discharge, with the aim to avoid a counterproductive admission which results in containment and overly restrictive practices.
Edited by
Roland Dix, Gloucestershire Health and Care NHS Foundation Trust, Gloucester,Stephen Dye, Norfolk and Suffolk Foundation Trust, Ipswich,Stephen M. Pereira, Keats House, London
De-escalation is a term that is often used by psychiatric professionals yet if they asked for a definition of it, there would be differing responses. This chapter outlines not only a definition but the essential elements within its practice and how de-escalation fits into the spectrum of management of challenging and disturbed behaviour.
Edited by
Roland Dix, Gloucestershire Health and Care NHS Foundation Trust, Gloucester,Stephen Dye, Norfolk and Suffolk Foundation Trust, Ipswich,Stephen M. Pereira, Keats House, London
This chapter proposes that a psychological model based on disturbed internal cognitive appraisals and social reinforcement has sufficient flexibility to formulate challenging behaviour within the ward environment. Disturbance of appraisals is likely to have a traumatic basis which has solidified into powerful beliefs which influence the transferential projections of the patient to the treating team and ward situation. It is the patient’s distorted view of the ‘social -emotional situation’ that drives behaviour – rationale within the context of distorted beliefs. Tools for analysing and formulating the challenging behaviour and suggested treatments are taken up over a number of case studies.
NHS England recommends the commissioning of intensive support teams (ISTs) to provide effective support to people with intellectual disability (ID) when in crisis. However, there is a paucity of evidence regarding how these services should be organised. This exploratory secondary analysis of data from the IST-ID study aimed to investigate IST characteristics that relate to clinical outcomes. The primary outcome was mean change in the total score on the Aberrant Behavior Checklist and its subscales.
Results
A measure of mental illness severity was the only variable associated with our primary outcome of reduction in challenging behaviour. Accommodation type, affective status and gender were associated with the subdomains of irritability, hyperactivity and lethargy in unadjusted and adjusted analyses.
Clinical implications
Our findings indicate that variation in clinical outcomes is influenced by individual rather than organisational factors. Further research on the theoretical fidelity of the IST-ID model is needed.
In this study, we examined 535 primary classroom teachers’ causal attributions about challenging behaviour in West Bengal, India. The participants completed a questionnaire that collected information about their perceptions, causal attribution, and proposed strategies to address a range of challenging behaviours that were presented through five vignettes. The participants identified student-related and family-related factors as the main causes of challenging behaviour more frequently compared to teacher-related causes. They reported using proactive strategies more often than reactive strategies to address challenging behaviours in their classrooms. The findings provided insight into teachers’ causal attributions influencing their choice of classroom-management strategies, which helped to understand teaching practices and how they affect students. The implications of the study are presented to improve professional learning and practice for teachers and guide them to adopt strength-based strategies to address challenging behaviour in primary schools in West Bengal, India.
This chapter provides an overview of clinical practice pertaining to offenders with intellectual disability. It covers the ‘offending journey’ of people with intellectual disability whose behaviour reaches the threshold for criminal justice system involvem’nt. This includes being accused of a crime, interactions with the police, decisions regarding prosecution and the processes involved in court cases. Though much of this account is based on the law in England and Wales, the chapter also reviews key research in this area, examining the risk factors for offending, characteristics of this population, models of treatment and treatment outcomes.
Antiseizure medications (ASMs) are the second most widely prescribed psychotropic for people with intellectual disabilities in England. Multiple psychotropic prescribing is prevalent in almost half of people with intellectual disabilities on ASMs. This analysis identifies limited evidence of ASM benefit in challenging behaviour management and suggests improvements needed to inform clinical practice.
Children with genetic conditions may experience significant mental health difficulties such as anxiety and challenging behaviour. However, understanding of the feasibility and effectiveness of psychological interventions for emotional and behavioural problems in the context of genetic conditions is limited. Low-intensity psychological interventions have demonstrated promise in paediatric populations and may be able to address their mental health difficulties. A case series design was used to assess the feasibility of low-intensity interventions for emotional and behavioural difficulties in children and young people with genetic conditions recruited from a mental health drop-in centre at a tertiary hospital. Participants received seven weekly sessions with a trained practitioner. The intervention was based on existing modular treatments and evidence-based self-help materials. Feasibility and treatment satisfaction were assessed, as well as measures of symptoms of anxiety and challenging behaviour, treatment goals and quality of life, at baseline, during treatment and 6-month follow-up. Five participants received treatment for challenging behaviour, one for anxiety, and one for obsessive compulsive disorder. All participants completed treatment. Clinically significant change in the SDQ Total score was found in three participants. All participants demonstrated progress in goals and symptoms of emotional and behavioural difficulties over the course of treatment. Low-intensity psychological interventions for emotional and behavioural difficulties in children and young people with genetic conditions is feasible, acceptable and potentially beneficial. Further research is warranted to examine the effectiveness of the intervention and its use in clinical paediatric settings.
Key learning aims
(1) To gain a basic understanding of low-intensity psychological intervention in children and young people with genetic conditions.
(2) To enhance understanding of the practicalities and acceptability of delivering low-intensity psychological intervention to children and young people with genetic conditions and co-morbid emotional and behavioural difficulties.
(3) To learn about the potential clinical benefits of delivering low-intensity psychological intervention to children and young people with genetic conditions in the context of stepped care.
Challenging behaviours often co-occur at high rates among those with autism spectrum disorder and intellectual disability. Challenging behaviours, including self-injury, aggression and property destruction, can be associated with social impairment and increased caregiver demands and stress. These behaviours often arise from and are maintained by a combination of biological and environmental risk factors throughout the lifespan. Given the impact of challenging behaviours on development, function-based assessment and intervention approaches are crucial. The prevalence, risk factors, assessment tools and evidence-based treatment options utilised for individuals with developmental disorders are discussed.
Mental disorders and ADHD in people with ID are higher than in the general population.Clinicians may be reluctant to diagnose ADHD in people with ID. They could be denied effective treatment.
Objectives
The purpose of the study was to ascertain antipsychotic use in people with ID before and after the a diagnosis of ADHD.
Methods
A casenote review in an ID service for aduls with ADHD. Data collected on psychotropic use before and after the diagnosis.
Results
Forty-eight aduls with ADHD-ID were identified. 38(79%) were male and 10(21%) were female. 19 to 58 years of age. Four (8%) had mild ID; 44 (92%) had moderate to severe ID. 27(56%) had anxiety, mood disorders or psychosis. 21(44%) had ADHD only. Challenging behaviour was reported in 24 (50%) of cases. Thirty-three (68%) used psychotropic medication prior to the diagnosis of ADHD and after the diagnosis. Post-diagnosis, 20(60%) continued to use antipsychotic medication indicating the elimiation of antipsychotic use in 13(40%) of people. The level of medication use remained the same in spite of the reduction of antipsychotic medication. The diagnoses of challenging behaviour was not affected by the reduction in antipsychotic medication and the increase in ADHD medication use.
Conclusions
The use of antipsychotic medication in people with intellectual disaibilities and ADHD is high. ADHD should be considered when people present wtih challenging behaviour. ADHD medication can be effective in treating ADHD-ID and can lead to a significant reduction in the use of antipsychotic medication.
Attention-deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder with a higher prevalence rate in people with intellectual disability compared with their peers without such disability. The classic presentation is that of inattention and/or hyperactivity and impulsivity, but these symptoms can manifest differently in people with intellectual disability. Despite a higher prevalence, the rate of diagnosis and treatment of ADHD in intellectual disability remains low. This article discusses the clinical presentation of ADHD in people with intellectual disability and the relationship between ADHD and other comorbid conditions, such as autism and bipolar disorder. Pharmacological and non-pharmacological interventions are discussed from a practical and a clinical point of view.
Restrictive interventions (seclusion, restraint and special observations) are used on psychiatric wards when there are no other means available to keep a patient or others safe. These measures can be traumatic, and the Mental Health Commission and the Health Service Executive are focused on minimising their use. We set out to determine whether, following a COVID related reduction in bed numbers on a high dependency psychiatric ward in St John of God Hospital in Dublin, there was a change in their incidence.
Methods:
Data on restrictive interventions and challenging behaviours were gathered for 9-month periods before and after March 2020 when COVID related ward changes took place. Figures were also collected on seclusion and restraint for the previous 18 months for a longer-term view. Ward and hospital occupancy levels were also recorded.
Results:
Between the two time periods, episodes of seclusion fell by 53% and episodes of restraint by 56%. The hours devoted to special observation declined by 30% and incidents of challenging behaviours fell by 26%. Ward occupancy levels fell by only 5%. The longer-term comparison of figures for seclusion and restraint point towards a downward trend from mid-2019 that was accentuated in the post-COVID period.
Conclusions:
The changes found may relate to reduced crowding on the ward or other COVID related factors such as the emphasis on social distancing and a shared sense of purpose on the ward. The longer-term trend points towards an emerging cultural shift. The challenge now is to sustain and build upon these changes.
The Pyramid Model (PM) is an evidence-based, early educational framework designed to promote all young children’s social-emotional-behavioural (SEB) learning. The tiered PM early education practice framework, developed in North America, embeds strategies for children with exceptional needs naturally and coherently integrates apparently divergent approaches to promoting young children’s SEB skills. Responsive teaching, which is fundamental to early education practice, is shown to link with positive behaviour support practices by means of incidental and planned intentional teaching. These early education PM practices are intended to promote children’s SEB skills when used together purposefully, consistently, and intensively. The PM’s potential application in Australia was investigated with 4–5-year-olds in 4 Victorian preschools. Quantitative data from the study suggested that after training and subsequent coaching in the PM, there was significant change in intervention educators’ behaviour, which was independently observed and rated using the Teaching Pyramid Observation Tool. Concurrently, the SEB skills of the children in the intervention groups were shown to have developed at a significantly greater rate than the children in the contrast groups as assessed using the Social Skills Improvement System Rating Scales.
Services were first based on providing mental deficiency colonies, then called hospitals by 1960. The 1970s saw the start of a recognition of a right to live in the community as equals. It took thirty years to close the old hospitals and develop an entirely community-based service. This needed changes to policy, funding agencies and the benefit system. This also involved changing the skills of previous staff and changing skills and attitudes in mainstream services. We now have a rights-based system, which is more fragmented and more challenging for people with learning disability to negotiate.
Previous systematic reviews showed no significant association between epilepsy and challenging behaviours in adults with intellectual disabilities.
Aims
To identify whether there is an association between epilepsy and challenging behaviour in adults with intellectual disabilities by carrying out a systematic review of published data. PROSPERO registration number: CRD42020178092.
Method
We searched five databases and hand-searched six journals. Two authors independently screened titles, abstracts and full articles using a standardised eligibility checklist. Several meta-analyses were carried out.
Results
The narrative analysis of data from 34 included articles (14 168 adults with intellectual disabilities, 4781 of whom also had epilepsy) showed no significant association between epilepsy and challenging behaviour. Meta-analysis was possible on data from 16 controlled studies. This showed no significant intergroup difference but after sensitivity analysis meta-analysis of 10 studies showed a significantly higher rate of overall challenging behaviour in the epilepsy group (effect size: 0.16) compared with the non-epilepsy group. Aggression and self-injurious behaviour both showed a statistically significant higher rate in the epilepsy group, with very small effect sizes (0.16 and 0.28 respectively). No significant intergroup difference was observed in the rate of stereotypy.
Conclusions
The findings are contradictory and must be interpreted with caution because of the difficulty in pooling data from varied studies, which is likely to introduce confounding. Where significant differences were found, effect sizes are small and may not be clinically significant, and there are major methodological flaws in the included studies, which should be addressed in future large-scale properly controlled studies.