‘Diagnostic Overshadowing’ Amongst Clinicians Working with People with Intellectual Disabilities in the UK

Background Mental health problems are known to be hard to recognize in people with intellectual disabilities. One factor that may contribute to this is the diagnostic overshadowing bias, which describes the tendency of the clinicians to overlook symptoms of mental health problems in this client group and attribute them to being part of ‘having an intellectual disability’. Although a small amount of research has investigated this in the USA, very little has taken place in the UK. Materials and methods Two clinical vignettes were produced. Both described identical clinical problems, except that one vignette described a man with an IQ of 58 and impaired social functioning (i.e. an intellectual disability) and one a man with an IQ of 108 and normal social functioning (i.e. non‐intellectually impaired). Psychiatrists (n = 274) and clinical psychologists (n = 412) throughout UK were randomly assigned to either the low IQ or normal IQ condition, and sent a corresponding clinical vignette. Results One hundred and thirty‐three psychologists and 90 psychiatrists responded. Diagnostic overshadowing did appear to be present. Clinicians were more likely to recognize a range of symptoms in those with IQs in the normal range than those with intellectual disabilities. Furthermore, psychiatrists appeared more likely to make this error under some circumstances than clinical psychologists. Conclusions Diagnostic overshadowing may contribute to the difficulties that mental health professionals commonly experience in identifying mental health problems in people with intellectual disabilities. However, the methodology commonly used in this type of research has a number of weaknesses, and would benefit from an alternative approach.     

Supported Employment: a Route to Social Networks

Background Evidence suggests that social networks mediate social functioning, self‐esteem, mental health and quality of life. This paper presents findings concerning changes in the social lives, skills, behaviour and life experiences of a group of people with intellectual disabilities (n = 18), who gained support from an employment agency to find paid work. Method The composition and quality of individuals’ social networks were mapped using a Social Network Guide. Changes in skills, behaviour and life experiences were assessed using standardized measures. Results The social network size of participants increased over time, with most social contacts being drawn from community contexts. This linked to improvements in life experiences, particularly in relation to leisure activities. Some improvements in adaptive behaviour were also found over time but no significant relationship between social network size and changes in adaptive behaviour were evident. Conclusions Whilst work will not guarantee social relationships, it can help maintain network size and provides a good opportunity for people with intellectual disabilities to meet others who are not associated with intellectual disability services.     

The Prevalence,Incidence, and Factors Predictive of Mental Ill‐Health in Adults with Profound Intellectual Disabilities

Background There are no previous studies of the prevalence and incidence of mental ill‐health in adults with profound intellectual disabilities. Method In this population‐based prospective cohort study, adults with profound intellectual disabilities underwent psychiatric assessment (n = 184), with further assessment after 2 years (n = 131). Results Point prevalence of mental ill‐health was 52.2% by clinical, 45.1% by Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities (DC‐LD), 10.9% by the ICD‐10 Classification of Mental and Behavioural Disorders Diagnostic Criteria for Research (1993) (DCR‐ICD‐10) and 11.4% by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (2004) (DSM‐IV‐TR) criteria. The highest 2‐year incidence rates were for affective disorders (6.1%) and problem behaviours (6.1%). Type of accommodation/support, and the number of preceding life events were predictive of incidents of mental ill‐health, but age, gender, living in areas of greatest deprivation, and having special communication needs were not. Conclusions Mental ill‐health is more commonly experienced by adults with profound intellectual disabilities than the general population, or other adults with intellectual disabilities, warranting proactive supports/interventions. Predictive factors differ, compared with the general population.     

Physical Fitness and Fatness in Adolescents with Intellectual Disabilities

Background This study investigated health‐related fitness in adolescents with intellectual disabilities and analysed the various performances in physical fitness tests according to degrees of obesity. Materials and Methods Eighty‐seven French intellectual disabilities adolescents (14.24 ± 1.48 years) performed the EUROFIT physical fitness test battery. Height, weight and waist circumference were assessed, and BMI and waist‐to‐height ratio were calculated. ‘Bio‐impedancemetry’ evaluated body fat (BF) percentage. Results Ninety‐four per cent of the adolescents completed the aerobic running test, 52% of which had low VO_2max. Thirty‐seven per cent were obese (%BF), and 32% had excess visceral adipose tissue. Adolescents with the lowest cardiorespiratory fitness had the highest BF percentages (P < 0.001). Conclusions Intellectual disabilities adolescents showed low physical fitness and high prevalence of obesity. Both could further worsen social participation and health status.     

Patterns of Obesity among Children and Adolescents with Intellectual Disabilities in Taiwan

Background Obesity and the health problems associated with it have substantial economic consequences for health care systems. Little information is available concerning obesity‐related problems among people with intellectual disabilities. The aims of this study were to analyse patterns of obesity among children and adolescents with intellectual disabilities in Taiwan and to compare these data with existing national norms in an attempt to identify the scale of the problem of obesity among this population. Methods Information was collected by postal questionnaire on a total of 279 children and adolescents with intellectual disabilities (age 4–18 years). Results Sixty‐four per cent of participants in the study had multiple disabilities and 40% had additional health needs. In terms of general health status, most of the persons with intellectual disabilities were reported to be in fair or good health, with 9% of them being reported to be unhealthy or very unhealthy. Body mass index (BMI) was related to age, but not to gender, morbidity or prescribed medication at the time of the survey. However, average BMI was higher than relevant population norms reported in Taiwan's Third National Nutrition and Health Survey (1993–1996). The overall prevalence of obesity was 18%, with 14% of participants aged 4–6 years, 22% of participants aged 7–12 years and 16% of participants aged 13–18 years being obese. In a multiple regression analysis of BMI, age was the only significant predictor of obesity, accounting for 8% of variation. Conclusions The findings suggest that the problem of obesity among children and adolescents with intellectual disabilities should be considered a major public health concern that warrants further attention in health care systems.     

Participation in Sports by People with Intellectual Disabilities in England: A Brief Report

Background Participation in sports has been linked to a range of physical, social and mental health benefits. Little is known about the extent to which people with intellectual disabilities take part in sports. This study looks at participation in sports and factors associated with participation by people with intellectual disabilities in England. Method Data on participation in sports and measures of personal characteristics, living situation, social participation, and socioeconomic status associated with participation were analysed based on a sample of 2784 people with intellectual disabilities in England. Results Overall, 41% of participants had taken part in sports in the past month, nearly all of whom had enjoyed it. Of those who did not take part, 34% said they would like to. Participation in sport was associated with some personal characteristics but not with support needs, and was also associated with indicators of socioeconomic status. Conclusions Targeting interventions to increase participation in sports by people with intellectual disabilities may make a significant contribution to improving their health and well‐being.     

Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey

Background People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods A 30‐item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.     

基于WHO-FICs架构智力残疾儿童青少年身体活动与运动康复的健康结局：系统综述的系统综述

目的 基于世界卫生组织国际分类家族(WHO-FICs)构建智力残疾儿童青少年参与身体活动和运动康复的健康和功能结局的研究架构,系统分析智力残疾儿童青少年的主要健康与功能障碍表现、参与身体活动的方案以及健康和功能结局。 方法 运用《国际疾病分类第十一次修订本》(ICD-11)和《国际功能、残疾和健康分类》(ICF),对智力残疾儿童青少年身体活动干预方案以及健康与功能结局进行系统分析,构建智力残疾儿童青少年健康与功能状况、身体活动干预方案以及健康与功能结局架构。检索Scopus、PubMed、Embase、Web of Science、中国知网、维普、万方数据,收集建库至2022年8月18日公开发表的智力残疾儿童青少年参与身体活动与运动康复的健康及功能结局的系统综述,进行系统综述。 结果 最终纳入系统综述8篇,来自5个国家,包括190项随机对照试验和7 011例参与者,研究领域主要涉及智力障碍、儿童神经病学、康复科学、残疾与健康、适应性体育、特殊教育等,发表时间集中在2018年至2022年。常见的健康状况主要有唐氏综合征、孤独症谱系障碍、脆性X综合征、Prade-Willi综合征、智力障碍、认知障碍;身体活动干预形式分为体适能类、技能类和活动类3类,活动频率每周1~5次,活动强度为中-高强度,持续时间1周~1.5年;健康结局体现在智力功能和适应性行为、身体活动、心理行为健康与社会适应、整体生活质量和福祉方面。 结论 基于WHO-FICs构建了智力残疾儿童青少年参与身体活动和运动康复的健康效果的理论架构。智力残疾儿童青少年主要功能障碍表现为智力功能和适应性行为、活动和心理健康、生活质量和福祉3个层面。其中智力功能和适应性行为层面涉及概念性技能、社交性技能和实践性技能,活动和参与层面表现为低体育活动参与度、久坐和肥胖,活动能力低,没有发展基本运动能力和身体素质。生活质量和福祉层面涉及情绪和情感、自尊、一般自我概念、幸福感、友谊、与他人的关系或社会成熟度、生活质量和福祉等。身体活动方式可以分为体适能类、技能类和运动项目类。主要健康和功能结局主要表现在三个领域：智力功能与适应性行为,活动和参与以及心理行为健康与社会适应、生活质量和福祉。在智力功能和适应性行为领域,主要健康结局涉及认知功能(执行功能、认知可塑性、工作记忆等)、心理功能(情绪自我控制、自我价值和自尊)。在活动和参与领域,主要健康结局涉及体适能(肌力和肌耐力、速度、灵敏性)和动作技能(基本动作技能、平衡、核心稳定性),提高体育活动参与度,促进其更好地适应与赋能(社交、亲社会行为等),达成健康目标(降低疾病风险、缓解焦虑和抑郁、肥胖管理)。在心理行为健康与社会适应、生活质量和福祉领域,参与身体活动与运动康复可以提升儿童青少年整体的生活质量和福祉。     

Individual Characteristics and Service Expenditure on Challenging Behaviour for Adults with Intellectual Disabilities

Background English policy argues that people with intellectual disabilities should be supported in their local communities. There is considerable evidence that this aspiration is not being achieved. This paper seeks to look at the subsection of people with intellectual disabilities who have expensive care needs because of challenging behaviour, to identify the decision‐making processes that have led to current service provision and expenditure and to suggest improvements. Materials and Methods We carried out a survey within five North London boroughs to investigate the characteristics of a cohort of people with intellectual disabilities and challenging behaviour in high‐cost accommodation (over £70 000/annum). Postal questionnaires and face‐to‐face interviews were conducted with stakeholders with intellectual disabilities and patterns of current costs were estimated from existing data provided by the commissioning authorities in the five boroughs. Results Two hundred and five individuals with intellectual disabilities and challenging behaviour were identified. They were accommodated in placements provided by 97 separate providers, both in and out‐of‐area. Those more likely to be placed out‐of‐area were younger, had multiple health problems, significant challenging behaviour and mental health problems including autistic spectrum disorders. The local community intellectual disabilities teams identified a number of difficulties in meeting the needs of those service users. Conclusions Expenditure on all placements for service users with intellectual disabilities is significant. There is a notable lack of investment in local service development. A coherent approach is required, often across service boundaries. The authors suggest a model for targeted investment aimed at supporting effective local services, and reducing the need for and expense of out‐of‐area placements.     

Health in People with Intellectual Disabilities: Current Knowledge and Gaps in Knowledge

Background The health needs of people with intellectual disabilities have recently received increasing attention. Method Based on a review of the 2003 literature, this paper presents an overview of our knowledge on physical, mental and social well‐being in this group. Results Physical well‐being is threatened by handicap‐related conditions, syndrome‐related health problems and lifestyle characteristics. Conclusion Gaps in knowledge include insufficient evidence on health disparities, the lack of comparability of data on the prevalence of ill heath, lack of expertise in relation to communication problems and the fact that all knowledge is based on research in developed countries, while people with intellectual disabilities in developing countries face the same or even greater health problems. Recommendations concerning evidence, education and empowerment are formulated.     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

Mental Health Problems in Young People with Intellectual Disabilities: The Impact on Parents

Background Young people with intellectual disabilities seem to be at increased risk of developing mental health problems. The present study set out to examine the impact such difficulties can have on parents. Method Semi‐structured in‐depth interviews were carried out with 13 parents and one adult sibling of 11 young people with intellectual disabilities and additional mental health problems. Results Parents described far reaching negative consequences of the young person’s mental health problems. In many parents these re‐evoked intense past feelings of grief and triggered feelings of helplessness and despair. Conclusions Parents’ experiences appear to be characterized by confusion, loss and hardship. Services do not seem to be attuned to the high level of emotional and practical needs of these parents.     

The Relationship between Participating in the Community,Significant Support Needs,and Emergency Department Utilization

Community integration is preferred by people with intellectual and developmental disabilities; community integration is also associated with positive outcomes. Yet, many people with intellectual and developmental disabilities, especially with higher support needs, remain isolated. This exploratory study examined the relationship between community integration, significant support needs, and emergency department utilization of people with intellectual and developmental disabilities (n?=?251) by analyzing secondary Personal Outcome Measures^® interview data. We found an interaction between community integration and comprehensive behavior support needs, wherein people with intellectual and developmental disabilities with comprehensive behavior support needs who participated in the life of the community had 78% fewer emergency department visits than those people with comprehensive behavior support needs who did not participate in the community. Not only is community integration preferred by people with intellectual and developmental disabilities, our research suggests it can also produce improved health outcomes for those with comprehensive behavior support needs.

     

Mental Health and Social Care Needs of Older People with Intellectual Disabilities

Background Older people with intellectual disabilities (ID) are a growing population but their age‐related needs are rarely considered and community services are still geared towards the younger age group. We aimed to examine the mental health and social care needs of this new service user group. Methods We identified all adults with ID without Down syndrome (DS) aged 65+ living in the London boroughs of Camden and Islington. The Psychiatric Assessment Schedule for Adults with a Developmental Disability (PASADD) checklist was used to detect psychiatric disorder, the Vineland behaviour scale (maladaptive domain) for problem behaviours and the Dementia Questionnaire for persons with Mental Retardation (DMR) to screen for dementia. Carers reported health problems and disability. Needs were measured with the Camberwell Assessment of Need for adults with Intellectual Disabilities (CANDID‐S). Results A total of 23 older people with ID (13 had mild ID and nine more severe ID) and their carers participated in the survey. In which, 74% had one or more psychiatric symptoms; 30% were previously known with a diagnosis of mental illness. One‐third of the older people screened positive for dementia (range: 17–44%, depending on sensitivity of DMR scores used). Three quarters of the group had physical health problems, 74% had poor sight, 22% had hearing loss and 30% had mobility problems. Carers rated unmet needs for accommodation (22%), day activities, and eyesight and hearing. The people with ID rated unmet needs to be social relationships (44%), information and physical health. Conclusion Older people with ID without DS have considerable prevalence of health problems and psychiatric disorders, including symptoms of functional decline and dementia. Such symptoms are often not recognised and further research into their needs is a priority.     

Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities

Background Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.     

A Randomized Controlled Trial of a Specialist Liaison Worker Model for Young People with Intellectual Disabilities with Challenging Behaviour and Mental Health Needs

Background Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9‐month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out post‐treatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.     

Efficacy of a Peer‐Guided Exercise Programme for Adolescents with Intellectual Disability

Background Peer support is strongly associated with physical activity of adolescents. This study examined the efficacy of a YMCA‐based, peer‐guided exercise training programme for increasing health‐related physical fitness among adolescents with intellectual disabilities. Materials and Methods Adolescents with intellectual disabilities and typically developing peer partners provided reciprocal support during 1‐h exercise sessions that included aerobic exercise, weight training and stretching activities. The programme was conducted 2 days/week for 15 weeks and pre‐ and post‐test fitness testing was conducted. Results Participants demonstrated significant improvements in curl‐ups, 6‐min walk and BMI. Exercise session attendance was high and participants typically completed all of the prescribed aerobic and stretching exercises, whereas weight training exercises were completed less consistently. Conclusions This peer‐guided model integrates social and instructional support for adolescents with intellectual disabilities and may encourage exercise participation in community settings.     

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities: Distinctions and challenges

Purpose

The purpose of this article is to provide the reader with insight and enhanced understanding of the health care transition planning process for adolescents and emerging adults with intellectual disabilities and developmental disabilities. There are distinctly different programmatic considerations that need to be addressed in advancing their transfer of care to adult providers and promoting their transition to adulthood. These differences are due in part to the federal and state legislative initiatives that were established in the education, rehabilitation, employment, and developmental disabilities service systems. In contrast, no comparable federal and state mandates exist in the system of health care. The legislative mandates in education, rehabilitation, and employment are presented and discussed as well as the federal legislation on rights and protections for individuals with intellectual disabilities and developmental disabilities. Consequently, health care transition (HCT) planning involves application of a framework of care that is characteristically different than the planning efforts undertaken for adolescents and emerging adults (AEA) with special health care needs (SHCN)/disabilities and for typically developing AEA. The best practice HCT recommendations are discussed in the context of this intellectual disabilities and developmental disabilities framework of care.

Conclusions

Health care transition planning for adolescents and emerging adults with intellectual disabilities and developmental disabilities involves additional and distinctly clinical and programmatic models of care.

Practice Implications

Health care transition planning guidance for adolescents and emerging adults with intellectual disabilities and developmental disabilities are provided based upon best practice recommendations.     

The Prevalence and Determinants of Obesity in Adults with Intellectual Disabilities

Background Obesity is a major public health concern internationally and this study aimed to measure the prevalence of obesity in adults with intellectual disabilities in comparison with general population data, and examine the factors associated with obesity. Methods This was a cross‐sectional study of all adults with intellectual disabilities, in a defined geographical area, in the context of a primary care health screening programme. A total of 945 adults with intellectual disabilities were involved, all of whom were living in the community. Body mass index (BMI), demographic characteristics, socio‐economic deprivation, level of intellectual disabilities and various health parameters were measured. Results Overall, 39.3% of women and 27.8% of men were obese, compared with 25.1% of women and 22.7% of men in the comparison general population. The mean BMI of women with intellectual disabilities (28.8, range 12.3–59, SD 7.8) was significantly greater than the mean BMI of men with intellectual disabilities (26.7, range 12.6–49, SD 5.9), and women were more likely to be obese than men with intellectual disabilities (χ² = 29.6, P < 0.001). Regression analyses showed that for both women and men, the risk of overweight and obesity reduced as the severity of intellectual disabilities increased, and Down syndrome was associated with an increased risk of overweight and obesity. Conclusions There is a need to carry out research to further our understanding of the reasons behind the increased prevalence of obesity in adults with intellectual disabilities. Effective weight management interventions and accessible clinical services are required to reduce the health inequalities experienced by adults with intellectual disabilities.