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Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. Methods: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. Results: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. Conclusions: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves. [ABSTRACT FROM AUTHOR]

Accessible summary We talked to people with intellectual disabilities and their carers about being healthy., Sometimes it was difficult for people with intellectual disabilities to take part in activities that would help keep them healthy., Being active is not just about doing special sports and activities. It can be part of everyday life., People with intellectual disabilities could become more active and be healthier with help from their carers., Abstract Background: The prevalence of obesity, inactivity and related morbidity and mortality is higher amongst people with intellectual disabilities than in the population in general, an issue of global concern. This research examined the perspectives of people with intellectual disabilities and their carers, on exercise and activity. Materials and Methods: Qualitative data were collected via interviews and a focus group with people with intellectual disabilities and their paid and family carers, recruited via state-funded community-based day centres in Scotland. Results: Three barriers hindered service users with intellectual disabilities from regular involvement in physical activity: (i) acceptance of an inactive lifestyle by carers; (ii) restrictions on activity due to paid carer preferences and resource limitations; (iii) communication issues between family carers and paid carers. Barriers were based on assumptions made by paid and family carers, so there is potential to increase activity by changing attitudes, improving communication and reconceptualising activity as integral to everyday living, rather than as additional exercise requiring special resources. Conclusions: Carers should be supported to promote physical activity in a variety of ways to enhance the motivation of service users, to encourage them to engage with physical activity as an integral part of a healthy lifestyle and to transfer this to their lives beyond day care. [ABSTRACT FROM AUTHOR]

Background: Little is known about the population prevalence of co‐occurring intellectual disabilities and autism, and its impact on general health status. The study aimed to investigate this, in comparison with the general population. Method: Whole country data from Scotland's Census, 2011, were analysed. Descriptive statistics were generated; chi‐squared tests were undertaken; and logistic regressions were undertaken both with the whole general population data, adjusted for age and gender, and within the population with co‐occurring intellectual disabilities and autism. Results: A total of 5709/5 295 403 (1.08/1000) people had co‐occurring intellectual disabilities and autism; 2.58/1000 children/young people and 0.74/1000 adults. The peak reported prevalence was at age 10 years (3.78/1000); 66.0% were male. Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day‐to‐day activities. Co‐occurring intellectual disabilities and autism had odds ratio = 48.8 (45.0–53.0) in statistically predicting poor health. Conclusion: This is the first study to report the population prevalence of coexisting intellectual disabilities and autism, and the substantial influence this double disadvantage has on general health status, apparent across the entire life course. This highlights a group in need of wider recognition for whom resources should be focused on and planned for, informed by evidence. Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities. [ABSTRACT FROM AUTHOR]

Accessible summary: People with severe and profound intellectual disabilities need others to support them in most areas of their life. It can be difficult to communicate with people about change and transitions have been identified as an area of concern.As part of this research, we spent time with six adults with severe and profound intellectual disabilities. We talked to their families and professionals about their transitions and how they were involved in decisions that were made. Relationships people had with family members and key staff facilitated their engagement and experiences of the world.Our findings show that it is important that those who know the person well are closely involved in the planning of transitions. There should be a greater focus on maintaining the relationships that people have so that we can build bridges between settings and improve transitions for people with intellectual disabilities. Background: Within the current literature, there is a focus on early transition experiences, such as people's school years, while adulthood remains a lesser researched chapter in the lives of people with intellectual disabilities. Furthermore, most studies focus on those with mild or moderate intellectual disabilities and people with severe or profound intellectual disabilities are often excluded from research. Methods: This article explores the transition journeys of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. Data collection involved observations, document reviews and interviews with families and professionals in Scotland. Taking an ethics of care perspective, our focus was to explore in how far each person had people in their lives able to listen to them and if, in turn, those close to them were listened to during times of transition. Findings: Our findings demonstrate that transitions are complex processes that occur across different systems. Additionally, our findings emphasise the importance to consider relationships that are available to people within their adult lives when planning and supporting transitions. Combining interviews with observations helped us to see how the six adults showed agency and were communicating their preferences through the relationships they had with people within their immediate environment. Conclusions: The need to reconceptualise participation from a relational and interdependent perspective is stressed to facilitate the involvement of people with severe intellectual disabilities within decision‐making processes. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities remain at high risk of developing type 2 diabetes (T2D) due to lifestyle‐associated risk factors. Educational programmes have been adapted for people with intellectual disabilities targeting ongoing T2D self‐management. However, there are no adapted programmes which aim to prevent T2D through reducing risk factors. The present study initiates addressing this gap. Methods: Further education (FE) colleges in Scotland were recruited for feasibility study using the Walking Away (WA) from Diabetes programme. Process evaluation assessed recruitment, retention, baseline physical activity levels, and acceptability and accessibility using focus groups. Results: Ninety six percent of invited students agreed to participate. WA was positively received, and some short‐term impact was described. Suggestions for further adaptations regarding materials, delivery and content were provided, including delivery embedded within FE college curriculum. Conclusions: Recruitment, retention and acceptability provide rationale for further research on T2D prevention in FE colleges. [ABSTRACT FROM AUTHOR]

Background Transition to adulthood may be a period of vulnerability for health for individuals with intellectual disabilities. No large-scale studies have compared the health of individuals with and without intellectual disabilities undergoing transition. The aims of this study were (1) to compare health during transition for individuals with and without intellectual disabilities across a whole country population and (2) to establish whether transition is associated with health in the population with intellectual disabilities. Methods Data were drawn from Scotland's Census, 2011. Frequency data were calculated for young people with and without intellectual disabilities. Logistic regressions were used to determine the extent to which intellectual disabilities account for seven health outcomes (general health, mental health, physical disabilities, hearing impairment, visual impairment, long-term illness and day-to-day activity limitations), adjusted for age and gender. Within the intellectual disabilities population, logistic regressions were then used to determine whether age group (13-18 or 19-24 years) is associated with the seven health outcomes, adjusted by gender. Results A total of 5556/815 889 young people aged 13-24 years had intellectual disabilities. Those with intellectual disabilities were 9.6-125.0 times more likely to have poor health on the seven outcomes. Within the population with intellectual disabilities, the 19- to 24-year-olds with intellectual disabilities were more likely to have mental health problems than the 13- to 18-year-olds, but did not have poorer health on the other outcomes. The difference between age groups for mental health problems was greater for young people who did not have intellectual disabilities, but their overall level of mental health problems was substantially lower than for the young people with intellectual disabilities. Conclusions This largest-to-date study quantifies the extent of the substantial health disparities experienced by young people with intellectual disabilities compared with people without intellectual disabilities. The young population with intellectual disabilities have substantial health problems; therefore, transition between child and adult services must be carefully planned in order to ensure that existing health conditions are managed and emerging problems minimised. [ABSTRACT FROM AUTHOR]

A national census was undertaken for the first time to establish number of patients with ID in secure forensic in‐patient services in Scotland and identify their treatment needs. All forensic mental health units were identified and contacted with a request to contribute. Response rate was 100%. Initial results in 2013 revealed 89 patients with ID, 83 male and six female. This group contributes to 17% of the overall forensic in patient population (n = 522). A higher proportion are from the North of Scotland. Key characteristics include an average age of 22 at first admission, history of violent offending, drug and alcohol abuse and self‐harm. Patients with ID in high secure services had significantly higher risk and total Historical Clinical Risk‐20 scores than those in a lower level. A range of significant health needs were identified enabling clinicians to build a profile of the population. A variety of medical, psychological and occupational interventions were utilised. Delivery seemed consistent across services, although poor recording made accurate assessment difficult. Nine percent were re‐admitted to a higher level of security within a 5‐year period (2013–2018). Repeated annual census findings revealed a slight decline in in‐patient numbers over a 5‐year period, although the proportion of ID patients (17%) remains constant. Data for 2018 indicate 85 people with ID, from a total in‐patient population of 490; female population increased to 10 (12%). Forty one (46%) patients either moved to a lower level of security or were discharged to community within a 5‐year period, indicating treatment success. This census provides unique evidence highlighting modest numbers of patients with ID, the majority of whom are cared for in low secure services. The populations' needs are considerable, but it is unclear if individual needs are being addressed. This requires further exploration, as does efficacy of interventions, in order to address the burden of psychological morbidity. [ABSTRACT FROM AUTHOR]

Background Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face-to-face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co-morbidities. Results A representative sample of adults with ID from rural ( n = 39) and urban ( n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3-51.5] including employment (OR = 22.1, 95% CI = 5.7-85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6-17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9-60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann-Whitney U = 7826, Z = −3.675, P ≤ 0.001). Conclusions These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion. [ABSTRACT FROM AUTHOR]

Background Employment is viewed by policy makers as both a human right and as a means of changing the marginalized status of people with intellectual disabilities, with important social and emotional benefits. However, there has been little longitudinal research examining the experience of people with intellectual disabilities in the workplace. Methods Thirty-five individuals with mild to borderline intellectual disabilities participated in this study. They were recruited from supported employment agencies in Scotland. A longitudinal approach was adopted, with the participants being interviewed around the time of starting their jobs, and again 9–12 months later. Results The content analyses of the semi-structured interviews indicated that the participants perceived continuing benefits from entering mainstream employment, including more purposeful lives and increased social status. However, over the follow-up period the participants reported few social opportunities that extended beyond the workplace, and an anxiety about their competence to meet employers’ demands remained a concern for some. Conclusions The discussion addresses the importance of understanding work in relation to the participants’ wider lives, along with the longer-term role for supported employment agencies to help people achieve their social and emotional goals in a vocational context. [ABSTRACT FROM AUTHOR]

The structuring of daytime activities for older people with intellectual disabilities (ID) is often at odds with the views or needs of the people involved with these activities. The aim of this study was to understand the perceptions of people with ID with respect to retirement-that is, the mandatory transition from attending day centers in two Scottish localities. Semi-structured interviews were conducted with 16 older adults and the resultant transcripts subjected to interpretive phenomenological analysis. Five themes emerged from the analysis: the importance of activity, the day center as a social hub, confusion concerning retirement, desire for continuity, and the value of independence. The older adults placed great value on participation in daytime activity and on attendance at local authority-run day centers. They wished to remain active well into old age and wished to contribute to their local communities. Disconcertingly, the participants highlighted the difficulties with their understanding of 'retirement' and those who demonstrated a level of understanding felt that they had a disconnected role in the process. The study revealed some important implications for service provision and development. The authors suggest that the provision of daytime activity for older people with ID should be scrutinized closely with respect to what people do as retirees and how they prepare for a change in lifestyle. [ABSTRACT FROM AUTHOR]

Background: Intellectual disabilities and autism are lifelong and often co‐occur. Little is known on their extent of independent association with sensory impairments and physical disability. Methods: For Scotland's population, logistic regressions investigated age–gender‐adjusted odds ratios (OR) of associations, independently, of intellectual disabilities and autism with sensory impairments and physical disability. Results: 1,548,819 children/youth, and 3,746,584 adults. In children/youth, the effect size of intellectual disabilities and autism, respectively, was as follows: blindness (OR = 30.12; OR = 2.63), deafness (OR = 13.98; OR = 2.31), and physical disability (OR = 43.72; OR = 5.62). For adults, the effect size of intellectual disabilities and autism, respectively, was as follows: blindness (OR = 16.89; OR = 3.29), deafness (OR = 7.47; OR = 2.36), and physical disability (OR = 6.04; OR = 3.16). Conclusions: Intellectual disabilities have greater association with the population burden of sensory impairments/physical disability, but autism is also associated regardless of overlap with intellectual disabilities. These may impact further on communication limitations due to autism and intellectual disabilities, increasing complexity of assessments/management of other health conditions. Clinicians need to be aware of these important issues. [ABSTRACT FROM AUTHOR]

Background: Following the global financial crisis in 2007/08, the UK implemented an austerity programme which may impact on services. Scotland comprises both densely populated urban conurbations and highly dispersed remote rural and island communities. Method: Expenditure data were extracted from Scottish Government statistics. Per capita expenditure was calculated using adjusted Scotland's 2011 census data. Results: There was a 3.41% decrease in real term expenditure on adult intellectual disabilities services between 2012/13 and 2014/15 (>£32 million). In 2014/15, per capita expenditure on adult intellectual disabilities health care ranged from £1,211 to £17,595; social care from £21,147 to £83,831; and combined health and social care expenditures from £37,703 to £85,929. Per capita expenditure on combined health and social care was greater in rural areas, with more on intellectual disabilities social care, though less on health care. Conclusions: Scottish expenditure on adult intellectual disabilities services has not kept abreast of rising living costs. It varies considerably across the country: a postcode lottery. [ABSTRACT FROM AUTHOR]

The Camphill Movement is one of the largest independent providers of social care for people with a learning disability: there are 119 communities located throughout the world. From the start, the principal aim of the Movement—co‐founded by Dr. Karl König and his wife Tilla (née Maasberg) in Aberdeen—was to build communities in which children and adults with a learning disability could live, learn, and work with others in healthy social relationships. Karl König was born in Leopoldstadt, Vienna on the 25 September 1902 and died on the 27 March 1966 in a Camphill community in Brachenreuthe, Germany. Mathilde Maasberg was born in Gnadenfrei, Silesia, on the 9 March 1902 and died on the 17 September 1983 in the Camphill community of Fairways in South Africa. The paper focuses primarily on the lives of Karl and Tilla König and highlights the key points in their respective biographies. Whilst it is usually the name of Dr. Karl König that is associated with the Camphill Movement, a case is presented here that his wife significantly shaped the essential character of the Camphill way of life. She had been born into a Moravian Brethren settlement and latterly wove a strong, discernible and enduring element of Moravian practice into the fabric of Camphill life and work. Since the deaths of Karl and Tilla König Camphill communities have continued to seek the creation of environments where the economic, social and spiritual aspects of the community life complement one another. The paper identifies six key constituents that it is argued are central to the essence of Camphillness: mutuality, rhythmicity, spirituality, tranquillity, ecological sensitivity and economic sustainability. The paper ends with reflections on the 21st Century relevance of Camphill communities. Accessible summary: This paper is about the life of Karl and Tilla König.It discusses the influence of the Moravian Brethren.The characteristics of Camphill communities.I conclude by reflecting on the 21st Century relevance of Camphill communities. [ABSTRACT FROM AUTHOR]

A correction to the article "Risk of anticholinergic burden in adults with intellectual disabilities: A Scottish retrospective cohort study of n = 17 200" in an issue is presented.

Background Important work has been carried out adapting cognitive behavioural therapy for people with intellectual disabilities. However, there is a lack of alternative psychological therapies available for people with intellectual disabilities and emotional difficulties. Behavioural activation for depression is less reliant on verbal communication and focuses on increasing purposeful activity and reducing avoidance. Method This feasibility study involved the development and piloting of an adapted manual of behavioural activation for people with intellectual disabilities. The intervention consisted of 10-12 sessions and a key adaptation was that the therapist worked with the clients alongside a significant other in their life, either a paid carer or family member. Baseline, post-intervention (3 months after entering the study) and 6-month quantitative follow-up data were obtained. Primary outcome data were gathered, concerning depressive symptoms, participants' levels of activity and general well-being. Results Twenty-three adults with intellectual disabilities with symptoms of depression were recruited from specialist health services. In terms of acceptability, the behavioural activation intervention was well received and only two individuals dropped out, with a further two lost to follow-up. The main measures of depression appeared to be sensitive to change. Pre- to post-intervention data showed a significant reduction in self-report of depressive symptoms with a strong effect size ( r = 0.78), that was maintained at follow-up ( r = 0.86). Positive change was also obtained for informant reports of depressive symptoms from pre- to post-intervention, with a strong effect size ( r = 0.7). Once again, this positive change was maintained at follow-up ( r = 0.72). Conclusions The study suggested that behavioural activation may be a feasible and worthwhile approach to tackling depression in people with intellectual disabilities. However, a randomised controlled trial would be required to establish its effectiveness, with more sensitive measurement of change in activity. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities experience high rates of falls. Balance and gait problems are common in people with intellectual disabilities, increasing the likelihood of falls; thus, tailored exercise interventions to improve gait and balance are recommended. The present authors set up a physiotherapy-led falls pathway service (FPS) for clients with intellectual disabilities to promote exercise and prevent falls. Method Fifty clients with intellectual disabilities were referred in an 18-month period, 35 (70%) were prescribed exercise and 27 (54%) completed the exercise programme. The FPS was evaluated using the following outcome measures: Tinetti score, number of falls, clinician's judgement and carer's judgement. Results Improvement in balance and mobility and a decrease in the number of falls were reported postexercise intervention. Conclusion Physiotherapists have a key role to play in promoting exercise to prevent falls in services for people with intellectual disabilities. This evaluation suggests positive outcomes for these clients to reduce or prevent further falls. [ABSTRACT FROM AUTHOR]

Background Providers of supported living services to adults with intellectual disabilities ( IDs) in the United Kingdom have procedures in place to monitor injuries; this provides opportunity to learn about the injuries being reported and recorded. The aim was to determine the incidence, causes and types of injuries experienced by 593 adults with intellectual disabilities who live with paid support in a 12-month period. Method Injury data, collected via a standard electronic injury monitoring system, were compared with data collected for a matched sample of the general population in the same year. Results The adults with intellectual disabilities experienced a higher rate of injury. Falls were the commonest cause of injury for both samples, but significantly more so for the adults with intellectual disabilities. Conclusions The higher rate of injuries, particularly minor injuries, being reported suggests a culture of injury reporting and recording within these supported living services. Electronic injury monitoring is recommended for organizations providing supported living services for adults with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Abstract: Background: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. Method: The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. Results: The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre‐existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co‐morbidity, including particular attention to late‐onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co‐morbidities, immobility and neuropathological deterioration. Conclusions: The Summit recommended an investment in research to more clearly identify measures of person‐specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre‐existing intellectual impairment. [ABSTRACT FROM AUTHOR]

Abstract: Background: Adults with intellectual disabilities (IDs) have consistently poorer health outcomes than the general population. There is evidence that routine health checks in primary care may improve outcomes. We conducted a randomised controlled trial of practice nurse led health checks. Here, we report findings from the nested qualitative study. Aim: To explore practice nurse perceptions and experience of delivering an anticipatory health check for adults with IDs. Design and Setting: Qualitative study in General Practices located in NHS Greater Glasgow and Clyde, Scotland, UK. Method: Eleven practice nurses from 11 intervention practices participated in a semi‐structured interview. Analysis was guided by a framework approach. Results: Practice nurses reported initially feeling ‘swamped’ and ‘baffled’ by the prospect of the intervention, but early misgivings were not realised. Health checks were incorporated into daily routines with relative ease, but this was largely contingent on existing patient engagement. The intervention was thought most successful with patients already well known to the practice. Chronic disease management models are commonly used by practice nurses and participants tailored health checks to existing practice. It emerged that few of the nurses utilised the breadth of the check instead modifying the check to respond to individual patients' needs. As such, already recognised ‘problems’ or issues dominated the health check process. Engaging with the health checks in this way appeared to increase the acceptability and feasibility of the check for nurses. There was universal support for the health check ethos, although some questioned whether all adults with IDs would access the health checks, and as a consequence, the long‐term benefits of checks. Conclusion: While the trial found the intervention to be dominant over standard health care, the adjustments nurses made may not have maximised potential benefits to patients. Increasing training could further improve the benefits that health checks provide for people with IDs. [ABSTRACT FROM AUTHOR]

Accessible Summary Summary Although co-production of research with people who access support services is increasingly common, details about how people who access support services can take more of an assertive role in developing research proposals and method design remains sketchy. This article reflects on the development of a research project on adult protection practice in Scotland. We start by giving an overview of what the policy on adult protection is in Scotland, how we did our research on this topic and what people who may be affected told us they wanted. Then, we examine how our team talked through key words used in adult protection, namely, 'risk' and 'abuse'. Coming to a shared understanding of the words and the concerns around them meant thinking about how words are used in many ways, from decisions about which words were used, to how these words were part of relating experience in stories, to how these stories fit into the work we were doing and how all of this shaped how we present our research to those who make and carry out services. Through doing a literature review together, we have gained a better understanding of how words are used as tools. We conclude that those who make, carry out and research services should consider using a wider range of tools than just words to help people have a say in how work to help people is done. [ABSTRACT FROM AUTHOR]

People with an intellectual disability (ID) face significant health inequalities and barriers to accessing appropriate support, which are made worse if the person is also homeless. An important barrier is that services may not recognise that the person has ID. This qualitative study explored the views of staff members and service users about the identification and support needs of homeless people with ID and the role of an ID screening questionnaire as a way to help improve service provision. Semi‐structured interviews were conducted with 16 staff members and 8 service users from homeless services in the South East of Scotland between March 2017 and 2018. Thematic analysis identified four themes: 'not diagnosed or declared', which explored the barriers to support due to the person's ID not being identified by others or disclosed by the person; 'It will crumble men', which reported on the additional challenges faced by homeless people with ID; 'disabling environment' which identified the ways in which organisations can make support difficult for people with ID to access; and 'It's not against them, it's to help them' which explored the benefits and issues associated with screening for ID in homeless services. The results identified the complex support needs likely to be experienced by many homeless people with ID and suggested a number of implications for practice. First, the screening tool was seen as having a number of benefits, if used where there is a process to provide the person with further specialist assessment and support. Second, staff members identified a need for training in relation to identifying and supporting this group of people. Third, the screening tool was seen as a way to help provide information about the prevalence and needs of people with ID, in order to inform and shape policy, service development, and delivery. [ABSTRACT FROM AUTHOR]

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Background People with intellectual disabilities ( ID) have high rates of psychiatric illness and are known to live in more deprived areas than the general population. This study investigated the relationship between area deprivation and contact with ID psychiatry. Method Psychiatric case notes and electronic records were used to identify all patients who had face-to-face contact with community ID psychiatric services over 1 year in the North East Community Health Partnership of Greater Glasgow and Clyde (estimated population 177 867). The Scottish Index of Multiple Deprivation ( SIMD) were determined for the patient sample and for the general population living in the same area. Results Between 1 June 2012 and 1 June 2013, 184 patients were seen by ID psychiatry over a total of 553 contacts, with valid SIMD data for 179 patients and 543 contacts. Fifty-two per cent of patients ( n = 93) lived in the most deprived SIMD decile, and 90.5% ( n = 152) in the lowest 5 deciles. Compared with the general population, there were significantly more patients than expected living in the most deprived decile ( Fisher's Exact test, P = 0.009) and in the most deprived 5 deciles ( Fisher's Exact test, P = 0.001). The median number of contacts was 2 (interquartile range = 1-3). There was no significant association between the number of contacts and SIMD decile. Forty-eight point one per cent ( n = 261) of all contacts were with patients living in the most deprived decile and 88.6% ( n = 481) in the most deprived 5 deciles. This was significantly more than expected compared with general population data ( Fisher's Exact test, P = 0.008 and Fisher's Exact test, P ≤ 0.001). Conclusions In the area under study, contact with ID psychiatry was greater in more deprived areas. Given the high psychiatric morbidity of people with ID, if services do not adjust for deprivation, this may lead to further discrimination in an already disadvantaged population. [ABSTRACT FROM AUTHOR]

Accessible summary The government suggests to the NHS what talking psychological therapies should be given to people when they have worries or problems., This study examined a service for people with learning disabilities in Scotland. It tried to find out whether the service was doing what the government suggests., The study found that the people who were seen by the service often had more than one difficulty, and the service gave extra talking psychological therapy to them., We think that this study shows that people with learning disabilities should have more treatments available for them to meet their needs., Abstract Background For services across the UK, increasing emphasis is placed on the use of evidence-based psychological treatments. In this context, the Scottish Government published the MATRIX, a best-practice clinical governance document, with a brief section on therapies for people with learning disabilities. As with most clinical guidelines, randomised controlled trials were considered the 'gold standard.' However, within the learning disability field, the existing evidence base is relatively limited, resulting in a narrow guidance for services. Methods This study evaluated the use of best-practice guidance (the MATRIX), in a psychology service for adults with learning disabilities, covering one of the largest NHS Boards in Scotland. A randomly selected 50% ( N = 73) of case notes opened since October 2011 (publication date for the MATRIX) was reviewed. Eight case notes were second-rated by an independent clinician. Results Findings showed that service users typically presented with multiple psychological difficulties, and clinicians offered a range of therapies additional to those suggested in the guidance. This was particularly evident in cases managed by clinical psychologists. Conclusions Applying rigid therapeutic recommendations may limit opportunities for integrative practice. The potential impact of inflexibly adopting clinical guidelines on service planning and resources is discussed. [ABSTRACT FROM AUTHOR]

The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the children had significant psychiatric morbidity. By contrast, the overall level of distress in carers was not that different from probable community prevalence figures. Nevertheless, distress among carers was consistently associated with increased disability in the child. Although respite care is a valuable resource for many carers, its use is indicative of underlying distress in the carer. [ABSTRACT FROM AUTHOR]

The case of a 50-year-old man with severe intellectual disability is described. After 20 years of institutional care, the subject was moved to a newly opened community group home. His physical and mental health deteriorated at this location after unproven allegations of sexual abuse which had taken place whilst he had been living in the institution. Although the subject's health continued to deteriorate, there was resistance to his re-admission to the same hospital for assessment. He had always needed to be cajoled into eating, but this approach had not been followed by the home which had contributed towards his weight loss. The situation the subject, the carers and the health personnel found themselves in illustrates how problematic it is to find the right balance between restrictive practices and respect for an individual's choice. [ABSTRACT FROM AUTHOR]

Background Leaving school is an important time for adolescents, with increasing autonomy and developing adult identities. The present study sought to shed light on the content and emotional impact of worries amongst adolescents with and without intellectual disabilities (IDs) at this time of change. Methods Twenty-five adolescents with mild to moderate IDs and 27 adolescents without IDs, aged 15 to 18 years, took part in the study. Participants' worries were elicited using a structured interview. The levels of rumination and distress related to their most salient worries were also examined, along with their self-reported levels of anxiety. Results Content analysis of the interviews identified differences between the worries of the two groups of participants, with the adolescents with IDs expressing more general worries about failure and personal threat. Level of distress about worries was positively correlated with anxiety in both groups. The adolescents with IDs were significantly more anxious than their non-disabled peers. Conclusions The differences between the groups' worries may be linked to differences in life experience and expectations. Consideration should be given to the specific worries of adolescents at the stage of leaving school. Doing so may allow solutions for their concerns to be identified, thus easing distress and leading to a less stressful transition. [ABSTRACT FROM AUTHOR]

The aim of this research was to investigate the incidence, types, and causes of injury experienced by a community-based cohort of family and paid carers of adults with ID ( n = 446) in Scotland over a 12-month period, compared with the age and sex-matched general population in the same geographical area ( n = 1,225). We hypothesized that they would be at an increased risk of injury due to their caring/support role, and particularly as a consequence of caring for adults with ID who present physical aggression. Young and middle-aged female and older-aged male carers experienced more injuries in the previous 12 months than did the matched general population, but not significantly so. Contrary to our hypothesis, young and middle-aged male and older female carers experienced fewer injuries, but this was also not significant. Carers were significantly less likely to experience injury from the use of a tool, implement or equipment ( p = .045), and, contrary to our expectations, the carers were not more likely to experience injury from another person's physical aggression ( p = .065). Types and causes differed between the carers and the general population. Injuries occur commonly among carers of adults with ID. While carers were not more likely to experience harmful injury from another person's physical aggression, we speculate that the underlying causes of injury are likely to differ between carers and the general population, with the carers being injured due to their carer role. This requires further in-depth study. [ABSTRACT FROM AUTHOR]

Background The negative health impacts of prolonged caregiving are widely reported. However, there is a paucity of evidence concerning the impacts of a lifetime of caring on older parents of offspring with learning disabilities. Design and Methods An exploratory postal survey including the Medical Outcome Study (Short Form) 36 version 2 (SF-36v2) was completed by 100 older parent carers. The reported survey is part of a larger mixed method study including in-depth interviews. Results The majority of respondents (n = 91) reported caring for 50 h or more per week with multiple caregiving duties. While the SF-36v2 reported physical health of older parent carers to be similar to UK norms, their mental health was significantly reduced. Implications for practice These important findings highlight the vulnerability of ageing parents of offspring with learning disabilities. This previously underreported situation warrants further investigation and urgent attention from health and social care agencies and professionals. [ABSTRACT FROM AUTHOR]

Accessible summary People with a learning disability have a special risk of developing certain problems with their health. Heart disease can also happen to people with a learning disability., We do not know how we should help people with a learning disability stay healthy and not develop heart disease., We trained staff using a programme designed to improve what they know about heart disease. This programme also helps staff learn ways to help people improve their health., After training, staff knew a lot more about heart disease and felt more confident about being able to improve the health of people with a learning disability., Summary People with learning disabilities are at increased risk of coronary heart disease ( CHD). Research suggests this may be due to inequalities in health status and inequities in the way health services respond to need. Little is known about the most effective way to improve health outcomes for people with learning disabilities. A previously developed CHD educational resource was piloted within residential community support organisations working closely with adults with complex learning disabilities. Following the training, improvements in knowledge of CHD-related topics were noted. Improvements were also seen in skills and confidence relating to working with others. Participant satisfaction with the training was demonstrated in terms of the acceptability and effectiveness of the training. Systematic training of this nature could lead to increased awareness of and attention to the cardiac health requirements of individuals, thereby improving the health outcomes, health literacy and ultimately self-management of people with learning disabilities. [ABSTRACT FROM AUTHOR]

Background Clinicians working with clients who have mild intellectual disabilities (IDs) have shown growing enthusiasm for using a cognitive behavioural approach, amid increasing evidence of good treatment outcomes for this client group. However, very little is known about the views and experiences of clients with IDs who have undergone cognitive behavioural therapy. This study aims to explore the perspective of these clients. Methods Fifteen participants with borderline to mild IDs and problems of anxiety, depression and anger were interviewed regarding their experience of cognitive behavioural therapy (CBT). Two semi-structured interviews were carried out in the first phase of therapy between session four and session nine. An interpretive phenomenological approach was taken to seek out themes from participants' own personal accounts. Results Participants valued the opportunity to talk about problems with their therapist and benefitted from therapeutic relationships characterised by warmth, empathy and validation. Participants identified areas of positive change; however, many thought that this may be short lived or not maintained beyond discharge. Conclusions The supportive aspects of therapeutic relationships were particularly important to participants undergoing CBT. The clinical implications are considered. [ABSTRACT FROM AUTHOR]

People with learning disabilities have fewer choice opportunities than the general population. Existing research provides some insight, but the choice-making experiences of those who do not always utilise available healthcare remains under-explored. This research explored the choice-making experiences of two groups of individuals with a learning disability: (Group 1 – Irregular attenders) those who had opted out of healthcare appointments for avoidable reasons; and (Group 2 – Regular attenders) those who had attended all appointments or not attended for unavoidable reasons. Interviews were carried out with people with learning disabilities (N = 4) and/or their primary carer (N = 13). In addition to these interviews, Physiotherapy staff participated in a focus group (Group 3). The interviewed individuals with learning disabilities described experiences of and opportunities for making everyday choices but generally identified ‘others’ as being responsible for making their healthcare choices. Greater understanding of the healthcare expectations and experiences of individuals with learning disabilities, carers and healthcare staff is required to support people with learning disabilities as active healthcare decision-makers. [ABSTRACT FROM AUTHOR]

Adults with intellectual disabilities (IDs) experience health inequalities and are more likely to live in deprived areas. The aim of this study was to determine whether the extent of deprivation of the area a person lives in affects their access to services, hence contributing to health inequalities. A cross-sectional study design was used. Interviews were conducted with all adults with IDs within a defined location ( n = 1023), and their medical records were reviewed. The extent of area deprivation was defined by postcode, using Carstairs scores. Area deprivation did not influence access to social supports, daytime primary health-care services or hospital admissions, but people in more deprived areas made less use of secondary outpatient health care [first contacts ( P = 0.0007); follow-ups ( P = 0.0002)], and more use of accident and emergency care ( P = 0.02). Women in more deprived areas were more likely to have had a cervical smear; there was little association with other health promotion uptake. Area deprivation was not associated with access to paid employment, daytime occupation, nor respite care. These results were essentially unchanged after adjusting for type of accommodation and level of ability. Deprivation may not contribute to health inequality in the population with IDs in the same way as in the general population. Focusing health promotion initiatives within areas of greatest deprivation would be predicted to introduce a further access inequality. [ABSTRACT FROM AUTHOR]

Anxiety disorders are known to be common in the general population. Previous studies with adults with intellectual disabilities (IDs) report a prevalence of general anxiety disorder ranging from <2% to 17.4%. Little is known about associated factors in this population. This study investigates point prevalence of anxiety disorders and determines the factors independently associated with them. Information was collected with 1023 adults with IDs who participated in a large-scale, population-based study. All had a comprehensive physical and mental health assessment. The point prevalence of anxiety disorders according to different diagnostic criteria was determined, as were independently associated factors by using logistic regression analysis. Three point eight per cent (95% CI = 2.7-5.2%) of the cohort had an anxiety disorder at the time of assessment. Generalised anxiety disorder was the most common (1.7%), then agoraphobia (0.7%). Factors independently associated with having an anxiety disorder were not having any daytime employment, and having a recent history of life events. Having previously been a long-term hospital resident was independently associated with not having an anxiety disorder. Anxiety disorders are common in the ID population. At times of significant life events, it might be sensible for carers to consider proactively providing additional support and being vigilant to seek early health-care interventions should there be any suggestion of emerging mental ill-health. The study further highlights the range of mental ill-health that is experienced by the population with IDs, and therefore the need for appropriate care, supports and development of effective interventions. [ABSTRACT FROM AUTHOR]

This article evaluates an assertive outreach team which aimed to help support people with a learning disability who displayed challenging behaviour in their own environment. The service was evaluated using Maxwell’s Multi-dimensional Quality Evaluation Model (Maxwell 1984), which recognises that different stakeholders in a service are likely to focus on different indices of quality including effectiveness, efficiency, economy, equity, access to services, appropriateness and social acceptability. The main strengths of the team were staff skills and professionalism, whereas the most frequently cited weaknesses centered around issues of liaison, communication and the role and remit of the team. [ABSTRACT FROM AUTHOR]

Injuries are among the leading causes of death and disability in the world and a major public health concern. Falls are a common cause. Young persons with intellectual disabilities (ID) have a higher rate and different pattern of injuries than the general population, but little is known regarding adults. The aim of this study was to determine the incidence and types of injuries experienced by a community-based cohort of adults with ID ( n = 511) in a 12-month period. Face-to-face interviews were conducted with participants 2 years after they had first been recruited into a longitudinal study. Incidence of at least one injury in a 12-month period was 20.5% (105), of which 12.1% (62) was because of falls. Incident injury was predicted by having epilepsy and not having autism. Incident fall injury was predicted by urinary incontinence, while Down syndrome reduced risk. Adults with ID do experience a higher rate of injuries and falls when compared with the general population. The results of this study highlight this, and hence the need to work towards the development of interventions for injury and falls prevention in this population. [ABSTRACT FROM AUTHOR]