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Background: The provision of unscheduled healthcare for children with intellectual disability is less researched than that focused on hospital settings or for adult services. The aim of the scoping review was to map the evidence base in this area and identify areas for future study. Method: A five‐stage scoping review framework was adopted. CINAHL, PubMed, SCOPUS, PsycINFO, Embase, ProQuest Dissertation & Theses and Google Scholar were searched. Studies published in English after 1/1/2000 were considered eligible for inclusion. Results: A total of 3158 titles and abstracts were screened, 137 full‐text articles were reviewed, and 25 papers met the inclusion criteria. Descriptive themes focused on inequities, needs and experiences of families', poor GP training, and limitations of existing evidence. Conclusion: Describing trends in healthcare utilisation by this population is valuable for monitoring quality of healthcare, however, addressing observed inequities will require approaches that recognise specific issues within the health system that result in inequities. [ABSTRACT FROM AUTHOR]

Background: Research on training direct support professionals to address challenging behaviour exhibited by adults with intellectual disabilities is essential in generating effective training approaches for this sector. This systematic review's objective was to evaluate the effects of training types and whether specific training delivery components influenced outcomes. Methods: Following PRISMA (2020) guidelines, 16 single‐case design studies were included that directly evaluated behaviour change of service providers training for adults with intellectual disabilities in community settings. Study quality was assessed using Horner et al. (Exceptional Children, 2005, 71(2), 165–180) criteria. The database searched included Academic Search Complete, CINAHL, Embase, ERIC, Psych Info, and Web of Science. Results: Descriptive analysis of effect size outcomes suggested that all training types were associated with improved outcomes. Further, in situ training was associated with improved service provider performance. Interestingly, feedback was associated with poorer service provider performance. Conclusions: We provide possible explanations for this surprising outcome and propose future research. [ABSTRACT FROM AUTHOR]

Background Transition to adulthood might be a risk period for poor health in people with intellectual disabilities. However, the present authors could find no synthesis of evidence on health and well-being outcomes during transition in this population. This review aimed to answer this question. Method PRISMA/ MOOSE guidelines were followed. Search terms were defined, electronic searches of six databases were conducted, reference lists and key journals were reviewed, and grey literature was searched. Papers were selected based on clear inclusion criteria. Data were extracted from the selected papers, and their quality was systematically reviewed. The review was prospectively registered on PROSPERO: CRD42015016905. Results A total of 15 985 articles were extracted; of these, 17 met the inclusion criteria. The results of these articles were mixed but suggested the presence of some health and well-being issues in this population during transition to adulthood, including obesity and sexual health issues. Conclusion This review reveals a gap in the literature on transition and health and points to the need for future work in this area. [ABSTRACT FROM AUTHOR]

Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included. Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs. Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development. [ABSTRACT FROM AUTHOR]

Background: Concerns have been expressed regarding the impact of Transforming Care (TC) an English deinstitutionalisation mandate, on forensic services. With nursing staff positioned as significant in delivering TC; this research explored nursing experiences. Method: Nine face‐to‐face semi‐structured interviews were completed with nursing staff working in either inpatient or community forensic teams. Multi‐perspectival interpretive phenomenological analysis was used to explore participants' experiences. Interviews were analysed independently, prior to a mini meta‐synthesis. Results: Participants from the inpatient group experienced TC as a threat, which resulted in consistency of perspective and practice. Participants from the community group viewed TC as a worthwhile challenge, which presented opportunity. The community infrastructure was experienced as inadequate by both groups, with the needs of people in forensic services needing more consideration, leading to widespread frustration. Conclusions: The blanket approach of TC may not be suitable for this population, with those leading TC perceived as naïve. [ABSTRACT FROM AUTHOR]

There is an increasing interest in the notion of health disparities, inequities and inequalities in Canada and elsewhere. In Canada, individuals with disabilities represent one of six groups identified as particularly vulnerable to health disparities.This paper combines the literature related to the concepts of inequity and inequality with the body of knowledge on health disparities faced by individuals with intellectual disabilities.The value of distinguishing inequity from inequality, particularly as it relates to the experience of individuals with intellectual disabilities, is highlighted.A framework for the study of health inequities based on intellectual impairment is proposed. [ABSTRACT FROM AUTHOR]

Background: Early intervention (EI) can improve a range of outcomes for families of children with developmental disabilities. However, research indicates the level of access does not always match the level of need. To address disparities, it is essential to identify factors influencing access. Method: We propose a framework where access to EI is conceptualised as a process that includes three main phases. A narrative review examined potential barriers, facilitators and modifiers of access for each phase. Results: The process of access to EI includes the following: 1) recognition of need, 2) identification or diagnosis and 3) EI provision or receipt. Several factors affecting access to EI for each phase were identified, related to the family, services, the intersection between family and services, and the context. Conclusion: A broad range of factors appear to influence the process of access to EI for this population. Our framework can be used in future research investigating access. Broad implications for policy, practice and future research to improve access to EI are discussed. [ABSTRACT FROM AUTHOR]

Background Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving highquality health care. Aims This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. Conclusions The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to participate in and contribute to the social and economic life of communities. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability (ID) have few role models for sexual expression and behaviour, and those who identify as LGBTQ experience dual marginalization. The aim of this study is to explore knowledge and attitudes concerning patients with both ID and norm‐breaking sexuality and/or gender identity among healthcare professionals in habilitation centres. Method: Data were collected from four focus group interviews that included 19 healthcare professionals from child and adult teams at two Swedish habilitation centres. Data were analysed using thematic analysis. Results: Three themes were identified as follows: heteronormative treatment in health care, barriers for inclusion and possibilities for inclusion. Conclusions: Norm‐breaking sexuality and gender identity are still relatively invisible in habilitation centres. People with ID are still predominately desexualized and perceptions regarding their sexuality are lagging behind the rest of society. Conditions that allow for more LGBTQ‐affirmative practice were described by the teams that have undergone LGBTQ training. [ABSTRACT FROM AUTHOR]

Background: This research is about people who have intellectual disabilities and live in a secure hospital. It is about a group of people who meet at a support group. The support group is for people who are lesbian, gay, bisexual or transgender. Methods: These people with intellectual disabilities helped with planning, doing, and telling other people about the research. They told their stories about going to the support group. Results: Their stories were joined together into a group story. The story said that the group helped people in lots of different ways. For some people going to the group was difficult at first because it was ?coming out'. This means telling other people you are lesbian, gay, bisexual, or transgender. Then it got easier and people started to feel better about themselves. Then they wanted to help others and this was important in their lives. Conclusions: This group seemed to help people get better. We have given some ideas for setting up other groups and doing more research. [ABSTRACT FROM AUTHOR]

There is an enduring association between socioeconomic position and health, both over time and across major causes of death. Children and adults with intellectual disabilities are disproportionately represented among the poorer and less healthy sections of the population. But research on health inequalities, and on the broader societal influences on health, has yet to be integrated into perspectives and policy for people with intellectual disabilities.The paper reviews evidence on the patterns and causes of socioeconomic inequalities in health.It points to evidence that socioeconomic position is the fundamental determinant of health, drawing on longitudinal studies to highlight how it exerts its influence on health from before birth and across the lifecourse. The factors shaping an individual's socioeconomic position are also discussed.The paper concludes by identifying research and policy challenges. [ABSTRACT FROM AUTHOR]

Objectives: To understand the views of qualified medical practitioners regarding "reasonable adjustments" and the quality of the care and treatment provided to adults with intellectual disabilities when admitted to acute hospitals as inpatients. Methods: Semi‐structured interviews took place with 14 medical practitioners, seven from each of two acute hospitals, with a thematic analysis of the resulting data. Results: All 14 medical practitioners reported problems in the diagnosis and treatment of patients with intellectual disabilities. Most participants attributed these difficulties to communication problems and/or behaviours that, in the context of a hospital ward, were non‐conforming. However, a minority reported that, because they were likely to have multiple comorbid health conditions, patients with intellectual disabilities were more complex. In addition, half of all these respondents reported making little use of "reasonable adjustments" introduced to improve the quality of the care received by this group of patients. Conclusions: Medical practitioners should make better use of the "reasonable adjustments" introduced in the UK to address inequities in care and treatment received by patients with intellectual disabilities. However, training should also focus on the biomedical complexities often presented by these men and women. [ABSTRACT FROM AUTHOR]

Background: This study investigated the psychocultural perspectives concerning family quality of life among Brazilian families with children who have severe or profound intellectual disability. Methods: Individual in‐depth semi‐structured interviews conducted with 15 mothers, selected by convenience, were analysed using a categorical thematic analysis technique. The themes were examined to allow for an interpretative approach of the results. Results: Mothers revealed that their children with disabilities had insufficient access to services and support related to health care, transportation and recreation. Family quality of life was negatively affected by financial restrictions and social interaction difficulties. Caring for a child with disabilities seemed to be centred on the mother and religious coping appeared as a common psychological adjustment strategy. Conclusions: Improving emotional and psychological cares, as well as social and practical measures comprising income support and access to appropriate health care, were inferred to be the mothers' priorities to improve their families' quality of life. [ABSTRACT FROM AUTHOR]

Background: The psychological status of caregivers of individuals with intellectual disability and psychiatric illness (PI) is important for effective management. The aim of this study was to examine the psychological status and its relationship with coping styles among these caregivers. Materials & Methods: Caregivers (N = 80) of individuals with intellectual disability (n = 40) and PI (n = 40) were administered a socio‐demographic questionnaire, depression, anxiety and stress scale and COPE Inventory. Results: Caregivers experienced depression, anxiety and stress symptoms. These symptoms were found to be significantly higher among caregivers of individuals with intellectual disability than those with PI. The most common coping style used was religious coping. Use of positive reinterpretation and growth was associated with lower levels of depression and stress symptoms. Conclusion: Caregivers' mental health plays an important role in the quality of care delivery and outcome. Use of appropriate coping styles can reduce the impact of these symptoms. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background There is a paucity of literature detailing cognitive-behavioural therapy (CBT) for psychosis in people with intellectual disability. Of the available literature, only two case studies involve people with command hallucinations and these do not address specific issues of intervention indicated in the wider literature for this type of presentation. Methods The present paper reports a case study documenting the successful application of CBT targeting the treatment of command hallucinations for mild intellectual disability. Results A range of measures (including positive and negative syndrome scale, beliefs about voices questionnaire and psychotic symptom rating scale for auditory hallucinations) collected at pre- and post-intervention indicates successful reduction in positive symptoms, with 3- and 6-month follow-up data indicating maintenance of improvements. Critically, positive clinical changes in core beliefs regarding the power of the hallucinatory voice are also observed. Conclusions Cognitive-behavioural therapy for command hallucinations can be successfully adapted and applied to people with a mild disability. [ABSTRACT FROM AUTHOR]

The Assessment of Basic Learning Abilities (ABLA) test requires a tester to attempt to teach to a person, using standard prompting and reinforcement procedures, six tasks that are hierarchically ordered in difficulty. Performance on the test provides valuable information for teachers and rehabilitation workers to match the difficulty of training tasks with the learning ability of persons with profound, severe and moderate intellectual disabilities. This paper summarizes the characteristics of the test, outlines the testing procedures, and reviews supporting data and practical guidelines for clinicians. [ABSTRACT FROM AUTHOR]

In this paper, we first describe the current state of health across the world. We then note that despite general good health, it is not everyone's experience and that differences in health among people frequently appear to be unfair. Health promotion is a movement committed to prevention and to creating opportunities for all people to live healthy lives. We examine the application of health promotion to people with intellectual disability. Finally, we bring equity, health promotion and intellectual disability together and ask to what extent people with these problems are victims of inequity. If they are– as seems likely– societies that have built their health services on humane values should assume greater responsibility for meeting their special needs, promoting their opportunities for health as well as managing their illnesses. [ABSTRACT FROM AUTHOR]

Persons with an intellectual and developmental disability frequently face barriers in accessing preventive services in community-based health care systems. As they age into middle years, they are at increased risk for functional decline. This paper presents a description of an advanced practice nurse (APN) intervention used in a pilot study that explored the feasibility of using an in-home preventive model based on a comprehensive geriatric assessment with persons ageing with an intellectual and developmental disability.The APN intervention was fully provided to a sub-sample (n = 70) of 201 participants with an intellectual and developmental disability enrolled in a programme called‘Stay Well and Healthy!’ The APN intervention included an initial home visit for a comprehensive geriatric assessment with follow-up home visits to review health status and assess adherence with recommendations and provide education and support to promote health and prevent functional decline.Advanced practice nurses identified a number of active health-related problems for persons ageing with an intellectual and developmental disability (mean 5.2; range 1–14) that had potential effects on function and survival. The majority of recommendations (mean 14.4; range 6–35) were for clinical preventive services (42.2%) and self-care for health-related issues (36.8%).This study showed that there were problems consistent with persons ageing with an intellectual and developmental disability and older adults without disability. The in-home preventive APN intervention to promote healthy ageing and reduce health disparities in this population is feasible, needed, and warrants further study. [ABSTRACT FROM AUTHOR]

Background: Transforming Care is making mixed progress in supporting people with intellectual and developmental disabilities, and complex needs, move to more appropriate specialist accommodations closer to home. Community support staff often spend greatest amounts of time with service‐users, yet are some of the least heard voices about why placements succeed and fail to varying extents. Method: Managers and support staff (n = 13), working in ostensibly "specialist" community placements, were interviewed about perceived barriers and facilitators to implementing Transforming Care. Transcripts were subjected to thematic analysis. Results: Participants identified difficulties balancing people's rights, safety and quality of life needs, and felt the system's expectations of them are hard to deliver within the resources, legislation, values and support models provided them. Multidisciplinary expertise was highly valued for both emotional and practical support, but was least valued when perceived as overly blaming or inspectorial. Specialist health input was seen to withdraw prematurely for this particular client group. Conclusion: Recommendations are provided for how staff perspectives should inform Transforming Care in interests of service‐users. [ABSTRACT FROM AUTHOR]

Background: The literature emphasizes that friendships are essential to youths' successful transition to and adjustment in adulthood. Few studies have explored the friendships of transition‐aged youths with intellectual and developmental disabilities (IDD), and even fewer include youths' own perspectives. This qualitative study explored the perspectives of transition‐aged youths with IDD regarding their own experiences of friendship. Method: A subset of video‐recorded data of 21 interviews with seven participants (20–24 years) was extracted from a larger study for secondary analysis. Data were analysed using thematic analysis, informed by constructivist grounded theory methods. Results: Three themes were revealed: meanings of friends and friendship, deepening self‐knowledge and negotiating in(ter)dependence. Conclusions: The findings expand existing knowledge about friendships of transition‐aged youths with IDD. Findings can potentially inform development of new services or enhancement of existing services aimed at facilitating transition to adulthood for youths with IDD and point to key areas for future research. [ABSTRACT FROM AUTHOR]

Background: In the general population, the transition from adolescence to adulthood has been identified as a "high‐risk" period for weight gain. There has been no research examining health behaviours over this transition in adults with intellectual disabilities. Methods/design: The feasibility of recruitment, retention and relevant health behaviours were measured in 31 adolescents with mild‐moderate intellectual disabilities. Anthropometric, objective physical activity, dietary and self‐determination measures were collected over a 12‐month transitional period from school to adulthood. Results: Key results suggest weight and BMI increased significantly from month 6 to month 12 (p = 0.044 and p = 0.043). Waist circumference increased significantly from baseline to month 12 (p = 0.049), and from month 6 to month 12 (p = 0.03). Discussion: Recruiting and retaining young adults with intellectual disabilities over a 12‐month health behaviour study is feasible. The data indicate the transition from school to adulthood may be the start of a high‐risk period for weight gain. [ABSTRACT FROM AUTHOR]

Background: Despite strong evidence for cognitive behaviour therapy (CBT) in treating mental health, its use, thus far, has been limited for people with intellectual disabilities. This study describes a CBT‐based guided self‐help (CBT‐GSH) manual for individuals with intellectual disability, and focus groups explore the views of clinicians, therapists, support staff and managers. Material and methods: Using a qualitative methodology, an expert team adapted the manual. Focus groups provided feedback, followed by thematic content analysis for modifications. Results: Participants supported using the manual, with varying views about the delivery. Quality of relationships and competence of the administrator determined the best person to deliver the treatment. Heterogeneity in the intellectual disability population was a challenge to delivering manual‐based interventions. Participants made suggestions about language and organization. Conclusions: Amendments were made to the manual in line with expert feedback. An evaluation is warranted to test for feasibility, delivery, acceptability and efficacy. [ABSTRACT FROM AUTHOR]

Background: Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. Method: A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. Results: An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. Conclusions: More people will have to continue living with their families and for longer if funding for new places remains curtailed. [ABSTRACT FROM AUTHOR]

Background There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. Method A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Results Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer’s role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. Conclusion More research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services. [ABSTRACT FROM AUTHOR]

Background Systematic reviews are important in evaluating evidence concerning the health of people with intellectual disabilities. This study conducts a systematic review to identify strengths and gaps in this evidence. Method Electronic literature searches and email requests identified systematic reviews published in English from 2008 to 2013 on the health or health care of people with intellectual disabilities. Reviews were categorized using ICD-10 chapter headings and information extracted regarding methods, number of studies reviewed and findings. Results Ninety-four reviews were identified: 52 related to ICD-10 Chapter V: Mental or behavioural disorders, 28 to Chapter XXI: Factors influencing health status and contact with services, and 14 related to other chapters or encompassed multiple chapters. Nine reviews were 'empty'. No reviews were found for many ICD-10 chapter headings. Conclusions Systematic reviews are heavily weighted towards mental health, with little coverage of several areas important to the health and mortality of people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background Care and service trajectories for people with intellectual disabilities are routes within the health care delivery system that consist of all the steps that people with intellectual disability and their families have to take in order to realize needed care and services. In contrast to the growing body of system-orientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific user-orientated knowledge is still largely lacking. Aim This article aims to describe the development and the preliminary validation of a user-orientated questionnaire for parents and/or relatives of people with intellectual disability (QUALITRA-ID-P) to assess the quality of care and service trajectories of their children/relatives with intellectual disability. Methods First, the phenomenon 'care and service trajectories' was conceptualized on the basis of document analysis and semi-structured interviews with key informants. Second, quality of care and service trajectories were operationalized using focus group discussions with parents and relatives as well as an extensive literature review. Third, the QUALITRA-ID-P was constructed using the results of the conceptualization and operationalization. Fourth, the QUALITRA-ID-P was refined in two stages: examination of (i) feasibility, understandability and completeness and (ii) preliminary validation. Results The final QUALITRA-ID-P is a 49-item scale with good reliability and validity. An exploratory factor analysis resulted in a 3-factor solution with Cronbach's alpha coefficients of 0.98, 0.83 and 0.91. Organizations in the disability sector can use the QUALITRA-ID-P to understand better the experiences of quality of their clients' relatives and as a result improve the quality of trajectories. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability who live in the community often have poor health and healthcare, partly as a consequence of poor communication, recall difficulties and incomplete patient health information. Materials and Methods A cluster randomized-controlled trial with 2 × 2 factorial design was conducted with adults with intellectual disability to investigate two interventions to enhance interactions among adults with intellectual disability, their care providers and general practitioners (GPs). The interventions were the Comprehensive Health Assessment Program (CHAP), a one-off health review tool, and the Ask health diary, designed for ongoing use. Follow-up was for 12 months post-intervention. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Results Increased health promotion, disease prevention and case-finding activity were found in the intervention groups using the CHAP. It had a positive impact on Pneumococcus vaccination (OR 7.4; 95% CI: 1.5–37.1), hearing testing (4.5; 1.9–10.7), Hepatitis A vaccinations (5.4; 1.8–16.3), vision testing (3.4; 1.4–8.3), and weight measurement (3.1; 1.5–6.4). There were no strong changes in the measured outcomes in the group who used the Ask health diary alone. Conclusions The use of the CHAP increased health promotion, disease prevention and case-finding activity in adults with intellectual disability living in the community and confirms the previously demonstrated benefits of the CHAP can be extended to less formal residential settings. The use of the Ask health diary did not improve the measured healthcare activity, at least in the short term, although it may contribute in other ways towards better health. [ABSTRACT FROM AUTHOR]

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face-to-face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person-centred practices and active partnership with intellectual disability services. [ABSTRACT FROM AUTHOR]

Background Staff in intellectual disability services can experience high levels of violence, which may lead to burnout. Staff burnout may result in poorer quality services. Previous research has suggested that factors such as fear of violence, self-efficacy and staff support moderate the impact of violence on burnout. Aims The research explores the relationship between levels of violence, with fear of violence, self-efficacy, staff support and burnout. Method A survey exploring levels of violence, fear of violence, burnout, self-efficacy and staff support was completed by 44 care staff in a medium-secure setting with a high incidence of violence, and 38 care staff in community settings with a low incidence of violence. Results Medium-secure staff reported significantly lower fear of violence and higher self-efficacy compared with community staff. Increased burnout significantly correlated with increased perceived exposure to physical violence and reduced staff support. Self-efficacy demonstrated a significant moderator relationship with levels of violence and burnout. Higher threats of violence significantly correlated with lower fear of violence. Conclusion Services which are organized to manage violence may be better placed to support staff experiencing violence. Fear of violence may decrease with exposure to violence, perhaps due to increased self-efficacy. Training and support for staff may increase self-efficacy, thus reducing burnout. Longitudinal research is needed to increase understanding of the relationship between violence and burnout. [ABSTRACT FROM AUTHOR]

Background Research into self-harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self-harm, such as cutting or burning the skin, found in those with mild intellectual disabilities; especially those living in secure accommodation, has largely been neglected, although there has been recognition of its impact on individuals and staff working in this field. This study aimed to address this issue through exploration of the experiences and understanding of self-harm among people with intellectual disabilities living in secure accommodation. A second aim was to explore experiences of interventions associated with this behaviour. Method and Results Semi-structured interviews were carried out with nine people who self harm, have intellectual disabilities and had been placed in secure accommodation. Interpretative Phenomenological Analysis yielded three master themes. The first related to the interpersonal context of self-harm and included sub themes relating to past experiences of abuse and loss, and current issues of control and protection. The second master theme related to the emotional experience of self-harm, which varied throughout the process of self-harm and was characterized by anger, frustration, hopelessness, relief, guilt and regret. The third master theme related to the management of self-harm. Participants had experience of helpful individual and collaborative strategies, as well as interventions that were experienced as controlling, unhelpful or ridiculing. Conclusion Emerging themes are considered in relation to the wider-self-harm literature and current psychotherapeutic models. A number of limitations to the study are noted and the use of this methodology with people with intellectual disabilities was discussed. [ABSTRACT FROM AUTHOR]

Background Previous research on psychiatric and health disparities according to level of cognitive functioning has focused on adults within an American healthcare context. The current study compares children with and without cognitive and developmental delays in Quebec, Canada, using physician billing data from a longitudinal study of low-income, francophone families. Canada is an ideal context for studying medical billing data as its equal access healthcare system removes many socioeconomic biases. Methods A large sample ( n = 1050) of children is used to describe psychiatric and health disparities, as well as differences in Ambulatory Care Sensitive (ACS) conditions and primary healthcare, between children with ( n = 107) and without ( n = 943) diagnoses in their billing history indicative of delays. Results The findings demonstrated a relatively high level of psychiatric diagnoses for children with delays. However, no difference was found between children with and without delays in regard to emergency room visits and hospitalizations for ACS conditions and primary healthcare. Conclusions The findings suggest that, within a universal healthcare system, disparities in primary healthcare may not emerge until adulthood in individuals with delay status. [ABSTRACT FROM AUTHOR]

Background Physiotherapists for adults with intellectual disabilities often work in day centres, relying on care staff to support programmes. This study investigates factors affecting physiotherapy delivery in 4 day centres in one London borough. Materials and Method Semi-structured interviews were carried out with day centre care staff, managers and physiotherapists. Results Service users’ needs were reported not to be met at three of the four centres. Barriers included low staffing levels, high absences and use of agency staff. Relevant variables included level of physiotherapist attendance, management priorities for care staff time, care staff confidence and whether a consistent team support delivery. Discrepancies emerged between staff and physiotherapists’ views on training needs. Conclusions Physiotherapy delivered in day centres is an important part of a complex care package. It requires effective multiagency working to meet the known – and potentially unidentified – needs of individuals and to ensure that care staff are adequately supported. [ABSTRACT FROM AUTHOR]

Background The idea that raising a child with disabilities has a negative impact on the parents’ relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method Family demographics were collected at two stages during the childhood of children with physical, intellectual or multiple disabilities born 1993–1995 (1999, n = 603 and 2003, n = 489). These figures were compared with the corresponding data for all children (Statistics Norway, Children Statistics). Results The family structures of children with disabilities were fairly similar to those of the typical family. Slightly fewer children with disabilities had siblings and a higher proportion of the parents of children with disabilities were married or cohabiting. The type or degree of impairment was not found to have any impact on family structure. Conclusions The results suggest that family structure in families raising a child with a disability is similar to other families. Whether this should only be seen as positive is discussed, as is whether the disability may produce a stronger feeling of obligation to stay together. [ABSTRACT FROM AUTHOR]

Background National minimum standards for residential care homes were introduced following the Care Standards Act 2000 in response to concern about the lack of consistency and poor quality services. These standards are intended to reflect outcomes for service users and to be comprehensive in scope. Method This study compared ratings made by care standards inspectors with research measures for 52 homes for people with intellectual disabilities serving 299 people. The research measures focused on the lived experience of residential care, including engagement in meaningful activity, choice and participation in activities of daily living. They also included measures of related care practices and organizational arrangements. Results The research measures were in general significantly correlated with each other. Most of the care standards ratings were also correlated with each other. However, only two of 108 correlations between care standards and research measures were significant. Possible reasons for this are discussed. Conclusions This study confirms that the review of national minimum standards and modernization of inspection methods recently announced by the Department of Health and the Commission for Social Care Inspection are timely and appropriate. [ABSTRACT FROM AUTHOR]

Background It has long been appreciated that people with intellectual disabilities experience mental health problems. Studies into the prevalence of personality disorder in the population of people with an intellectual disability indicate significant variations, which have no clear explanation. Method Work on personality disorder and personality is reviewed. Results This article will outline some of the reasons for the variations in the reported prevalence figures including the impact of diagnostic overshadowing, problems inherent within the diagnostic classification systems and instruments that have a significant impact upon the reliability of a diagnosis. It will also argue that there are some fundamental issues relating to the validity of the construct of personality disorder and its application to the population of people with intellectual disabilities. The article notes that the model of personality, which in itself is not without critics, is derived from research on the general population and has not been integrated with personality research conducted within the population of people with an intellectual disability. Conclusion It is suggested that the current diagnostic systems need to be reviewed in the context of an existing evidence base from within the field of intellectual disabilities. There are grounds to be cautious with the current diagnostic process and to question its clinical utility. Furthermore, diagnosis may only serve as an intermediate step and as part of a more detailed nomothetic approach. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Intensive Interaction is an approach to developing the pre-verbal communication and sociability of people with severe or profound and multiple learning disabilities and autism. Previous research has indicated many potential benefits; however, the approach is not consistently used in social care. Aim To report on the significant and influential issues for care staff when adopting Intensive Interaction as a novel approach in the social care setting for clients with profound and multiple learning disabilities. Materials and Methods Twenty-nine care staff from four residential settings were trained and supported in the use of Intensive Interaction over a 6-month period. Interviews with staff members and researcher field-notes were analysed using a Grounded Theory methodology. Results and Conclusions Increased and novel client responses were reported which were consistent with previous research. However, some practical and philosophical difficulties were highlighted by staff regarding their adoption of the approach. Consideration of care staff's experiences and perspective could enable future Intensive Interaction interventions to be more successfully planned and supported. [ABSTRACT FROM AUTHOR]

Background There is a history of over-prescription of antipsychotics to individuals with intellectual disability (ID), while antidepressants may be under-prescribed. However, appropriate treatment is best supported when the diagnosis of psychosis or depression is valid and carries good predictive validity. The present authors report a study examining one aspect of validity, namely whether skilled clinicians can agree on whether an individual with an ID is psychotic or depressed. Materials and Methods Pairs of clinicians assessed 52 individuals. Agreement was assessed using Cohen’s kappa statistic and agreement proportion. Results Overall agreement was high for both psychosis and depression. Whether the individual had mild ID or moderate/severe ID did not have a significant impact on agreement. Conclusions Experienced clinicians achieved a high level of agreement as to whether a person with ID was psychotic or depressed similar to that found for those without ID. The findings provide some support for treatment interventions based on diagnosis. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Although there is an established body of evidence attesting to the dose–effect relationship in psychotherapy with non-disabled adults, the issue as to whether such a relationship exists for persons with intellectual disabilities has not been previously examined. Dose–effect essentially concerns the amount of psychotherapy required to produce positive results. Method The current study used a naturalistic design to examine and compare the outcomes of three groups of participants with co-morbid psychological problems undergoing treatments of differing lengths (i.e. ‘doses’) with psychodynamic psychotherapy. Three measures of psychopathology were completed at assessment and at subsequent eight-session intervals until the conclusion of treatment. Each patient received a 3-month follow-up appointment, at which time the measures were again completed. Three treatment duration groups were subsequently constructed and compared viaanova: eight sessions ( n = 8), 16 sessions ( n = 5) and 24 plus sessions ( n = 7). Results Results were supportive of a dose–effect relationship, in that outcomes were generally equivalent regardless of treatment duration. Conclusion In short, most change appears to occur in the first eight sessions of treatment, with subsequent outcomes trailing off over time. The clinical implications of the study are discussed in the context of the methodological limitations identified. [ABSTRACT FROM AUTHOR]

Background Although research is starting to identify those factors that predict contact with mental health services in individuals with intellectual disabilities, very little is known about the patterns of service use following referral. Yet, this information is vital for effective service planning and development. We therefore examined the factors associated with service consumption. Methods We constructed a service consumption index based on the number of outpatient clinics attended, contacts with the community psychiatric nurses, home visits by a psychiatrist and the number of admissions. This consumption index was used to divide the sample ( n = 115) into two groups: heavy and light service users. Results and conclusions Logistic regression analysis indicated that, after controlling for the length of service contact, individuals with a diagnosis of schizophrenia spectrum disorder and those with a greater number of affective/neurotic symptoms were more likely to be heavy service users. Age, living situation and the degree of intellectual disabilities were not found to be significant predictors of service consumption. The results also suggest that a small proportion of service users consumed almost half of the service resources. [ABSTRACT FROM AUTHOR]

The article presents abstracts of medical research. They include "Symposium: Health Care and Morbidity Access to Dental Care for Adults With Intellectual Disabilities," "Economic and Personal Safety Nets of Older Women With Intellectual Disabilities: Policy Implications," and "Determinants of Functional Capacity Among Ageing Adults With Down Syndrome."

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. 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). 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. 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. [ABSTRACT FROM AUTHOR]

The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education.The medical files, the daily records and daily communication records between parents and professionals were reviewed for 48 children with profound intellectual and multiple disabilities in three centres for special education in the Netherlands. In addition, interviews were held with direct service professionals and medical doctors to complete the data collection.Not only do major medical conditions, such as hospital admissions, but also minor medical conditions, such as an increase in body temperature or the drowsy state a child is in as a result of a seizure, have an impact on performing activities and therapies in a child's educational centre.As a result of the prevalence of the medical conditions, professionals may decide not to carry on actions that were planned or do not offer an alternative programme. The risk of many‘empty’ hours despite the presence of highly specialized professional support is high. [ABSTRACT FROM AUTHOR]

It has been suggested that persons with an intellectual disability consume a disproportionate amount of hospital services. Policy changes in Ontario in the 1970s and 1980s made it necessary for community health services to accommodate this population that formerly received most of its medical care in the institutions where they lived. It is frequently suggested that community health services are currently inadequate to care for this population.The study was a retrospective analysis of routinely collected hospitalization data for persons living in Ontario with an intellectual disability, between 1995 and 2001.A substantial proportion of hospitalizations of persons with an intellectual disability were for mental disorders and dental diseases. Of all in-hospital stays, one-third were for mental disorders such as schizophrenia and depression. Of all day-surgery admissions, almost 40% were for dental diseases corresponding to a high rate of dental procedures. The study also identified high ambulatory care-sensitive condition hospitalization rates. In-hospital surgical procedure rates, however, were low.This study is the first to fully describe patterns of hospitalization for persons with an intellectual disability in Ontario, Canada. A recurring finding is the large discrepancy between statistics for persons with an intellectual disability and published data for the general population. The study limitations mean further research is required to confirm the results and to determine if persons with an intellectual disability are receiving the health care they are entitled to in Ontario. [ABSTRACT FROM AUTHOR]

The aims were to: (i) explore the association between age and size of setting and staffing per resident; and (ii) report resident and setting characteristics, and indicators of service process and resident activity for a national random sample of staffed housing provision. Sixty settings were selected randomly from those accommodating six or fewer adults with intellectual disabilities in Wales. Nine settings subsequently withdrew. Information from the remaining 51 was obtained on resident ages, gender, adaptive behaviour, physical and sensory disabilities, social impairment and challenging behaviour, the number and working hours of staff, staff:resident ratios at different times of the day, working practices, resident receipt of attention and assistance from staff and resident activity. The sample of 51 residences was divided into four groups of 12, 13, 13 and 13 settings each, according to ascending average adaptive behaviour scale scores. Age of residence was associated with larger size of residence and fewer staff hours per resident. Higher staffing per resident was associated with smaller setting size. Staffing per resident differed across adaptive behaviour groups to a limited extent. Size and age of residence, working practices, resident receipt of attention and assistance from staff did not differ across groups but resident engagement in activity did. Considerable within-group variation was found. The data illustrate trends in provision over time. In addition, they give a picture of recent practice and raise questions about whether staff input, on one hand, and staff training and performance, on the other hand, are well enough matched to the different needs of residents at different points of the adaptive behaviour spectrum. [ABSTRACT FROM AUTHOR]

Introduces articles published in the "Journal of Applied Research in Intellectual Disabilities." Indication of health inequality among people with intellectual disabilities; Disparity in health outcomes between people with intellectual disabilities and their non-disabled peers; Association between disability and poor health.

Abstract The increasing analysis of quality of life issues for people with disabilities has not been paralleled in relation to people with profound intellectual and multiple disabilities (PIMDs). This is nowhere more the case than with regard to the impact of health status on their quality of life. In addition, people with PIMDs, and the interventions which they require, have not been included within wider considerations of the economics of healthcare and its relation to rational decision-making regarding medical provision. The present exploratory study considered the impact of a wide range of surgical and orthotic interventions on the quality of life of 27 children and adults with PIMDs. These were explored on a pre–post-test basis with respect to: (1) the economic costs associated with surgical and orthotic interventions; (2) clinical assessment of function and behaviour; (3) the participants' and carers' quality of life; and (4) carer satisfaction with the interventions. The results are presented with respect to these individual areas and the extent to which the findings are congruent. The need for the development of these measures to meet the specific requirements of this population and the development of a more formal model integrating these steps are considered. [ABSTRACT FROM AUTHOR]

Background The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. Materials and methods The paper draws on a UK-wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Results Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. Conclusions The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control. [ABSTRACT FROM AUTHOR]