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The debate on the correct application of the terms race and ethnicity continues while community care takes place in a multicultural society. The impact of mental illness and mental handicap (currently referred to as learning disability2) on different ethnic groups partly depends on societai influences which also deter mine the policy for service organisation. As the treatment and support of the mentally handicapped has moved away from the custodial care of yesteryear, professionals must ensure that their practice is sensitive to the religion, ethnicity and languages of the communities they serve. This paper describes examples of psychiatric clinical practice with two families of Greek and Kuwaiti background, in the setting of a community learning disability team.

BackgroundThe aim of the study was to conduct the first systematic review investigating the prevalence of loneliness in people with intellectual developmental disabilities (IDD) and the interventions targeting loneliness.MethodA search across five databases was conducted (May 2016–June 2016). One reviewer (A. P.) selected the articles for inclusion and assessed their risk of bias using a standardized tool. The second reviewer (A. H.) examined the list of included/excluded articles and the ratings of the studies.ResultsFive prevalence studies met the inclusion criteria and provided an average loneliness prevalence of 44.74%. Only one intervention study was included, and it demonstrated that there was not any significant group difference for loneliness outcomes (p = .21). The majority of the studies had a weak quality rating.ConclusionThe systematic review evidenced that loneliness is a common experience in people with IDD and there is a need to extend current research.

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.

AbstractPeople with intellectual disability (ID) form one of the most underserved/stigmatized groups in society. Published data have documented stigma toward this population group in different countries. However, this phenomenon has received scant attention in South American countries. The aim of this work is to conduct a systematic search of published and gray literature in the area of stigma toward persons with ID within the 12 countries of the region to explore expression of stigma toward people with ID in the region. Systematic research of published data and gray literature, based on a previous published protocol, was run in this work. The search strategy included terms related to IDs being combined with stigma, prejudice, attitudes and stereotypes, and with the names of all the South American countries. Due to the known relationship between ID and Autism Spectrum Disorder, this term was included in the search. The search was conducted in English, Spanish, and Portuguese. A narrative approach to results is presented. Available information is organized by stakeholder groups, including persons with ID, families, caregivers, and mental health workers. The quality of the studies was analyzed based on the Mixed Method Appraisal Tool Version 2018, and results are variable. The results of the narrative review are indicative of the limited scientific study of stigma toward people with ID in South American countries and the clear sense that people with ID living in those countries report experience of stigmatizing attitudes. Future research, at population level, is needed in the region to ensure improvements in the quality of life and in the civil participation of people with ID.

AbstractBackgroundIndividuals with intellectual disability (ID) may benefit from befriending services, which can help to widen their social networks and reduce social isolation. This study examined the characteristics and challenges encountered by befriending services in the United Kingdom and motivations and experiences of volunteers working with people with ID.MethodsThis is a cross‐sectional study using two separate online surveys, one for befriending services and one for volunteers.ResultsEight services and 58 volunteers (aged 15 to 72) responded to the survey. The two major issues faced by befriending services were related to funding and recruitment of volunteers. The most common volunteering motivation was "To give something back" (75.9%). While unemployed volunteers were more likely to be motivated by wanting to do something useful with their spare time (OR 3.62, 95% CI 1.09–12.05), young volunteers expressed wanting to gain work experience through volunteering (OR 11.37, 95% CI 1.31–98.59). Most volunteers reported that volunteering had a positive impact on them and would like to continue volunteering in the future. Both positive and negative volunteer experiences were explored.DiscussionVolunteers experienced unique difficulties in interacting with service users with ID due to physical and cognitive barriers. More training and support could be provided to volunteers to help them manage these difficulties and to improve outcomes and experiences of both volunteers and individuals with ID. Policy guidance should be developed on how to set up high‐quality befriending services for this group.

This study aimed to explore key professionals' attitudes towards people with intellectual disability (ID) and inclusion of said people in the community. Eighteen participants from three professional groups, comprising health practitioners (medical doctors, psychologists), mainstream/special education teachers, and religious leaders (Islam, Catholicism, Protestantism, Hinduism, and Buddhism) were recruited. Semistructured interviews, aided by two vignettes depicting mild and severe ID, were conducted. Thematic analysis was used to analyse the data. Seven themes were identified exploring: perceived causes; use of terminology; attitudes towards people with ID; attitudes towards inclusion, religion and ID; family-centric support; and challenges faced by people with ID in a wider context. Perceived capabilities of persons with ID were found to influence attitudes towards people with ID and their inclusion. Availability and accessibility of good quality services were also found to influence attitudes towards the inclusion of people with ID. Cultural factors related to attitudes towards ID are discussed.

AbstractBackgroundObesity is higher in people with intellectual disabilities.AimsThere are two aims of this explorative paper. Firstly, using a realist lens, to go beyond 'what works' and examine the 'context, mechanisms and outcomes' (CMO) of lifestyle/obesity programmes for this population. Second, using a logic model framework to inform how these programmes could be implemented within practice.MethodWe explored six‐review papers and the individual lifestyle/obesity programmes that these papers reviewed using the CMO framework.ResultsThere were few theoretically underpinned, multi‐component programmes that were effective in the short to long‐term and many failed to explore the 'context and mechanisms'. We developed a logic model and engaged in two co‐production workshops to refine this model.DiscussionUsing a realist approach, programmes need to be underpinned by both individual and systems change theories, be multi‐component, have a closer understanding of the interplay of the 'context and mechanisms', and co‐designed using a logic model framework.

BackgroundCo‐research with people with intellectual disability is a distinct form of patient and public involvement (PPI). This systematic review summarize published studies and protocols to report on the process of co‐research in social and healthcare research.MethodRelevant studies were identified using electronic searches on ASSIA, PsycInfo and MedLine. Study quality was assessed, and information relevant to the process of working with co‐researchers was extracted and thematically analysed.ResultsThirteen studies were retrieved. Data are reported under three themes: (i) challenges of co‐research; (ii) facilitators of co‐research; (iii) benefits of co‐research. Best practice is presented as a model of co‐research. Content analysis on 12 research protocols identified four themes related to PPI.ConclusionsAll stakeholders involved in co‐research with people with intellectual disability can benefit, providing there is adequate infrastructure to accommodate and empower the co‐researchers. Many current intellectual disability research projects still lack systematic involvement of PPI members.

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.

AbstractResearch shows that people with intellectual disability (ID) face public stigma. However, a recently published narrative review suggests that this phenomenon has not been explored in a Latin American country. This study fills the gap in our understanding of public stigma towards people with intellectual disability in Chile. 395 adults from the general population (18 to 78 years) participated in the survey. Using the Intellectual Disability Literacy Scale, adapted for Chile, we explored the participants' literacy about ID, their causal beliefs, and desire of social distance. Only 1.3% of the sample identified intellectual disability in the instrument's vignette. The most common causal attribution for the condition was environmental, followed by biomedical factors. Participants showed a high desire of social distance, with higher scores associated with more educated participants. Our findings show that low literacy about intellectual disability and a high desire for social distance are significant factors contributing to public stigma in Chile. These are tangible targets for change that can lead to increased social inclusion and participation of people with intellectual disability in Chile. Any such approaches are likely to be transferable to other Latin American countries and could help reduce public stigma for this population.

AbstractBackgroundDemand for formal social services support for adults with intellectual disabilities is increasing internationally. Initiatives which empower individuals with intellectual disabilities to improve their health, develop living skills or manage chronic illnesses may promote independence and reduce unnecessary dependency on social services.MethodsA "preventative framework" to managing demand comprising several domains was developed from existing literature to guide the search strategy.ResultsFourteen papers related to three domains in the predetermined preventative framework were selected for inclusion in the review, including twelve economic studies. Outcomes included measurement of care needs, and cost‐comparison between social care models or cost‐effectiveness of interventions. Due to the heterogeneity, the present authors were not able to quantitatively synthesize findings.ConclusionsThe present authors conclude that evidence linking initiatives across sectors to demand for adult social care is lacking. The present authors identify several gaps in the literature and make recommendations for future research and data recording in practice.

AbstractBackgroundStepping Stones Triple P (SSTP) is a complex parent‐mediated intervention aimed to reduce behaviours that challenge in children with moderate to severe intellectual disabilities, aged 30–59 months.MethodsTo formulate a comprehensive understanding of SSTP implementation in the UK, we conducted a process evaluation collecting stakeholder views and considering intervention fidelity, dose, reach, delivery adaptations, and acceptability.ResultsFidelity and quality of delivery ratings were high. Parents perceived SSTP as valuable, reporting increased parental confidence and understanding of the child's behaviours. However, only 30% of families received an adequate dose of the intervention. Parents who only received treatment as usual described feeling abandoned by current services. Service managers emphasised the importance of availability of resources and therapist training for successful intervention delivery.ConclusionsSSTP supports effective management of early‐onset behaviours that challenge. Further work is needed to ensure equitable access to the intervention across health and social care services.Trial RegistrationNCT03086876 – https://www.clinicaltrials.gov/ct2/show/NCT03086876?term=Hassiotis+Angela&draw=1&rank=1.

AbstractStigma is a form of negative social stereotype characterized by a lack of respect toward an individual or a group of people. It is defined as a personal attribute that triggers negative stereotypes, leading to adverse effects on the individuals concerned. This study aims to explore the self‐perceived stigma experienced by adolescents with intellectual disabilities in Chile. We explored self‐perceived stigma in 139 Chilean adolescents, using the Perceived Stigma of Intellectual Disability Scale, which was translated and adapted for the Chilean population as part of this project. We calculated total stigma scores as well as scores for various subscales. Additionally, we conducted analyses of variance, independent t tests, and chi‐square tests to identify differences in self‐stigma based on various sociodemographic factors. The total self‐perceived stigma score was relatively low among Chilean adolescents with intellectual disabilities compared to previously published reports from other countries. Some variations in reactions to discrimination were observed based on the type of schooling, particularly strong negative reactions associated with attending special schools. The low self‐perceived stigma reported by Chilean adolescents with intellectual disabilities may be attributed to social and cultural factors, as well as the availability of social opportunities and their intensity. Future studies should further investigate the impact of special schools on individuals with intellectual disabilities in Chile.