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People with intellectual disabilities (IDs) have very high rates of osteoporosis and fractures, to which their widespread vitamin D deficiency and other factors could contribute. We aimed to assess in people with IDs previously treated for vitamin D deficiency (1) long-term adherence to vitamin D supplementation and (2) bone mineral density (BMD), as an indicator for risk of fractures, according to vitamin D supplementation and other factors.We recorded height, weight, medical, pharmacological, dietary and lifestyle assessment. Blood sample were taken for vitamin D and related analytes. dual-energy X-ray absorptiometry for BMD was performed.Of 51 study participants (mean [standard deviation, SD] age 51.5 [13.6] years, 57% male), 41 (80.4%) were taking vitamin D and 10 were not. Mean [SD] serum vitamin D was 81.3 [21.3] vs. 25.2 [10.2] nmol/L (P 0.0001), respectively. Thirty-six participants underwent a dual-energy X-ray absorptiometry scan, which showed osteoporosis in 23.7% and osteopenia in 52.6%. Participants on vitamin D had higher BMD than those who were not, a statistically significant difference when confounders (lack of mobility and hypogonadism) were removed. BMD was significantly different according to mobility, particularly in wheelchair users, in whom hip BMD was 33% lower (P 0.0001) than in participants with normal mobility. Participants still taking vitamin D showed a 6.1% increase in BMD at the spine (P = 0.003) after mean [SD] 7.4 [1.5] years vitamin D treatment.In people with IDs and previous vitamin D deficiency, BMD increases on long-term vitamin D supplementation. However, additional strategies must be considered for osteoporosis and fracture prevention in this population.

BACKGROUND: The Annual Health Check (AHC) program, as part of a Directed Enhanced Service (DES), offers an incentive to general practitioners (GPs) in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on healthcare costs of AHCs in primary care to the NHS in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network (THIN). METHODS: Two hundred and eight records of people with ID from THIN database were analysed. Baseline healthcare resource use was captured at the time the first AHC was recorded (i.e., index date), or the earliest date after 1(st) of April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on healthcare costs. RESULTS: The average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary healthcare costs increased significantly after the index date in the no AHC group due to higher increase in resource utilisation. Regression analysis showed that the expected healthcare cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected healthcare cost. CONCLUSION: The level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities.

Background Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS.

The World Health Organisation has launched a programme to promote Global Cooperation on Assistive Technology. Its aim is to increase access to high-quality affordable assistive products (AP) for everybody in need. People with intellectual disabilities (ID) are a specific group that could benefit from AP, but use less AP compared to their non-intellectual disabled peers.A systematic literature search was carried out to identify barriers and potential facilitators for access to AP for people with ID globally. The search strategy terms were 'Intellectual Disability' and 'Assistive Technology' with the following electronic literature databases PubMed, Embase, ASSIA, Web of Science, Medline, CINAHL complete, PsycInfo, Scopus and ERIC. The quality and relevance of the studies were assessed. Factors associated with access were identified thematically, categorised into barriers and facilitators and mapped into themes.In all, 22 key studies were retrieved, describing 77 barriers and 56 facilitators. The most frequently reported barriers were related to lack of funding and cost of AP, lack of awareness about AP and inadequate assessment. An increase of knowledge and awareness about AP and the need of AP for people with ID were most often extracted as factors that could potentially facilitate access.This review proposes actions linked to the barriers and facilitators that have a particular importance for people with ID to access AP. Yet, only limited research is available describing factors that influence access to AP for people with ID in low and middle income countries and rural areas.

To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the 'know-do-gap'. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID.A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines.In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)).Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).

Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members.Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler; Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters.The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs.A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities; this should be further explored.

Individuals with intellectual disability (ID) are at greater risk of exposure to traumatic life events compared with the non-ID population. Yet no study to date has examined the role of multiple traumatisation and subsequent psychopathology in people with ID. The aim of this study was to explore the association between multiple traumatisation and subsequent mental health.A preliminary cross-sectional study involving 33 participants with DSM-5 post-traumatic stress disorder completed self-report questionnaires on exposure to traumatic life events and post-traumatic stress disorder symptoms, anxiety, depression and general distress.A proportion of 42.4% of the sample reported multiple traumatisation, including exposure to life events in both childhood and adulthood. Those who reported exposure to life events in childhood and adulthood reported significantly higher risk of harm, depression and general psychological distress compared with those who reported exposure to life events only in adulthood.Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood.

There are different instruments to measure energy expenditure in general population, but we do not know whether these instruments can be used in people with intellectual disability.A sample of 33 participants was invited to wear a triaxial accelerometer during seven consecutive days. Energy expenditure was measured with the International Physical Activity Questionnaire Short Version (IPAQ-S) to gather data regarding the participant's descriptions of the physical activity performed.Agreement between the accelerometers and IPAQ-S in terms of energy expenditure measurements was not reached (P 0.05). A significant correlation was found between moderate metabolic equivalent of tasks measured with accelerometers and vigorous metabolic equivalent of tasks measured with the IPAQ-S (r = -0.351 [P = 0.045]).The main conclusion of this study was a level of discrepancy between measurements taken using the IPAQ-S and the accelerometers in people with intellectual disability.

Most staff working in intellectual disability services will be confronted with people with intellectual disabilities who need support around death, dying and bereavement. Previous studies suggest that intellectual disability staff tend to protect clients from knowing about death and avoid communication about death. The aims of this study were to gain further insight into the individual, organisational and contextual factors that affect the communication of death-related bad news to people with intellectual disabilities by intellectual disability staff and to develop guidelines for services to enable appropriate communication with clients about death and dying.Semi-structured interviews were held with 20 social care staff working in intellectual disability residential or supported living services in London, who had supported a client affected by death-related bad news in the past 6 months.Staff found supporting people with intellectual disabilities around death and dying extremely difficult and tended to avoid communication about death. The following factors had a particularly strong influence on staff practice around communicating death-related bad news: fear and distress around death; life and work experience; and organisational culture. Staff attitudes to death communication had a stronger influence than their client's level of cognitive or communicative abilities. Managers were important role models.Service managers should ensure not only that all their staff receive training in death, loss and communication but also that staff are enabled to reflect on their practice, through emotional support, supervision and team discussions. Future work should focus on the development and testing of strategies to enable intellectual disability staff to support their clients in the areas of dying, death and bereavement.

The Psychiatric Assessment Schedule for Adult with Developmental Disability (PAS-ADD) is an international reference tool for the diagnosis and assessment of mental health problems and behavioural disorders among people with intellectual disabilities. Although the original PAS-ADD instrument has been validated in the Spanish language, the shorter PAS-ADD Checklist has yet not been validated. The aim of this study is to validate the PAS-ADD Checklist for the Spanish population.The PAS-ADD Checklist Questionnaire was administered to 208 adults with intellectual disabilities at a vocational centre in Madrid, Spain. The psychometric analyses included internal consistency, inter-rater and test-retest reliability, Varimax rotation factor analysis for construct validity, criterion validity and feasibility.The Cronbach's alpha was 0.80 for the overall questionnaire and between 0.40 and 0.79 for the subscales. The Kappa coefficients for test-retest and inter-rater reliability were between 0.66 and 0.80. Varimax rotation factor analysis showed five well-defined factors. The Kappa coefficients for criterion validity were between 0.30 and 0.70. Feasibility was also good.The PAS-ADD Checklist is a feasible and reliable instrument for carrying out initial assessment of the mental health status of adults with intellectual disabilities, referring cases to more specialised diagnosis and treatment.

Providing safe, high-quality admitted-patient care for people with intellectual disabilities (IDs) requires consideration for their special needs particularly in relation to communication and consent. To make allowance for these special requirements, it would be helpful for hospitals to know how often they are likely to arise. This study set out to identify the amount and patterns of use of acute, non-psychiatric hospital admitted-patient care in England by people with ID. Patterns are considered in relation to clinical specialties, modes of admission (emergency or planned) and life stages (children and young people, working age and older adults). In each case, patterns for people with ID are compared with patterns for those without.Descriptive observational study using a major general practitioner (GP) research database (Clinical Practice Research Datalink GOLD) linked to routine national statistical records of admitted-patient care.Overall people identified by their GP as having ID had higher rates of admitted-patient care episodes and longer durations of stay than those without. Differences varied considerably between clinical specialties with rates more elevated in medical and paediatric than surgical specialties. Admitted-patient care rates for women with ID in obstetrics and gynaecology were lower than for other women, while rates for admitted-patient dental care were much higher for both men and women with ID. In an average English health administrative area with a local population of 250 000 people, at any time, there are likely to be approximately 670 people receiving acute admitted-patient care. Approximately six of these are likely to have been identified by their GP as having ID. At 0.9% of hospital in-patients, this is just under twice the proportion in the population.Our figures are likely to be an underestimate as GP identification of people with ID is known to be far from complete. However, they indicate that the number of people with ID in acute hospital settings is likely to be substantially more than a recent survey of English health services indicated they were aware of. The study is intended to help guide expectations for acute hospitals seeking to audit the completeness of their identification of people with ID and to indicate their likely distribution between clinical specialties.

Sexual rights and sexuality are important aspects of quality of life, also for people with intellectual disabilities (IDs). However, providing support in this area to people with ID poses some challenges. In this study, the content of individual support plan (ISP) documents was analysed to determine the extent to which sexuality and sexual rights are addressed in part of the ISP documents.Content analysis was carried out on a sample of 187 ISP documents from seven different service provider organisations in the Netherlands. First, we conducted a lexical search using terms related to sexuality and sexual health. The retrieved segments were then analysed.A total of 159 ISP documents (85%) of 60 men and 99 women contained some reference to aspects of sexuality. However, these references were mostly descriptive and offered little guidance in terms of providing support. Moreover, these notations mostly described negative or problematic aspects of sexuality. References to sexual education, treatment, intervention programs or support strategies were rarely found in the ISP documents.Although sexuality is addressed in most ISP documents, there is little information available about the provision of professional support in this area that would give people the opportunity to exert sexual rights. As sexuality and exerting sexual rights are important for people with ID as well as for other people, it is recommended that issues surrounding proactive sex education, shared decision-making and the implementation of sexual healthcare plans are addressed in the ISP.

People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England.We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause.Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA.National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.

The transition to adulthood is a major developmental milestone; a time of self-discovery and increased independence. For young adults (YA) with intellectual disabilities (ID), however, this period is especially challenging. The increased incidence of mental health disorders in this population, such as depression and anxiety, make this transition even more difficult, increasing caregiver burden at a time when the young adult would traditionally be gaining independence. It is not clear, however, why YA with ID are more susceptible and what factors may predict mental health symptoms.Potential risk and protective factors (demographic variables, coping styles, sense of hopelessness, unmet achievement of adulthood milestones, self-reflection and insight) of anxiety and depression symptoms were assessed in 55 YA with ID and a sample of age-matched controls.Insight was the strongest predictor of anxiety (with gender in the controls) for YA with and without ID, with increased insight predicting fewer anxiety symptoms. However, YA with ID had significantly less insight than their aged-matched counterparts and significantly higher levels of anxiety. They were also less likely to have achieved traditional adulthood milestones. Maladaptive coping was the strongest predictor of depression for YA with ID. In comparison, both maladaptive coping and insight predicted depression in controls. More maladaptive coping predicted increased depressive symptoms in both populations, whilst increased insight predicted fewer depressive symptoms in controls.Insight and maladaptive coping are potential targets in the treatment of anxiety and depression among YA with ID. Longitudinal intervention studies exploring the efficacy of such targeted programmes in reducing mental health symptoms and improving the transition to adulthood for these young people are recommended.

Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners.A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes.Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care.The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if 'reasonable adjustments' are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID.Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social-psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results.The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy.Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of 'equal' treatment that means reasonable adjustments instead of undifferentiated treatment.

Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians.This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures.The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians.The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

The construct of self-determination has received considerable attention in the international field of intellectual disabilities (ID). Recently, there has been a rapid development of this construct in Chinese societies including Hong Kong. However, there is no locally validated instrument to measure self-determination in people with ID. This article explains the validation process of the AIR Self-Determination Scale - Chinese version (AIR SDS-C) adapted from the 24-item AIR Self-Determination Scale, developed by Wolman and his colleagues, which is used in school setting.People with mild/moderate ID aged 15 years or above were recruited from special schools and social services units in different regions of Hong Kong. Factor analysis and reliability tests were conducted.Data for a total of 356 participants were used for the analysis. A confirmatory factor analysis was performed to test the factorial construct, and Mplus 7.0 was used for the analysis. The factor structure proposed in the original English version was supported by the data, and all factor loadings were between 0.42 and 0.76. The whole scale achieved good reliability (Cronbach's α = 0.88 and ω = 0.90).The AIR SDS-C appears to be a valid and reliable scale. This study examined adult groups as well as student groups. The application of the scale can thus be extended to a wider population. The implications for theory building and practice are discussed.

Goals and objectives as mentioned in Individual Support Plans (ISPs) were analysed to explore what domains of quality of life they are associated with, what support resources are referenced for achieving the goals, and how domains and resources are related to clients age, gender and intellectual disability (ID) level.A total of 209 ISPs for persons with ID from eight residential Dutch service provider organisations were analysed. Mixed linear regression analyses were conducted to examine the relations between client characteristics and the content of goals and support resources.Results showed that ISPs of people with mild and moderate ID had significantly more goals related to independence and social participation as compared to the ISPs of people with severe and profound ID. ISPs of clients with profound ID addressed quality of life factors related to 'well-being' more than ISPs of all other clients. ISPs of people aged 20-34 years had significantly more goals on independence than the two other age groups. ISPs of people under the age of 50 had significantly fewer goals with respect to well-being than found in ISPs of older people. Regarding the use of resources, 42.6% of the ISP goals were associated with resources from specialised services, 31.5% associated with natural resources and 25.9% associated with a combination of both natural and specialised services. In ISPs of people with mild ID, natural resources are more often mentioned, and specialised service-based resources are less often mentioned than for other people.This study offers empirical feedback on ISP practices in the field of ID in the Netherlands. In light of current ISP practices, results suggest that attention should be paid to: (1) distinguishing between a 'service contract' and an ISP; (2) keeping a focus on the whole person in all age groups and levels of functioning and (3) involving the service recipient in ISP development and implementation.

Despite a lack of consensus regarding prevalence rates of substance abuse, people with intellectual disabilities (ID) on average use substances slightly less often than their non-disabled peers. However, their use of substances is more often problematic. Avoidance of treatment is a crucial problem among substance-abusing people with ID. This study tested a motivational intervention to facilitate autonomous motivation (i.e. wanting to change substance abuse because of a sense of free choice and volition) for engaging with a subsequent addiction treatment.A multiple-case experimental design (N = 6) was conducted to measure day-to-day motivation to change substance abuse among individuals with mild ID (N = 3) and borderline level of intellectual functioning (N = 3) in the Netherlands. The participants (five men, one woman) lived in the community (except one, he lived in a residential facility) and abused cannabis, alcohol or hashish. During the intervention phase, the 10-session treatment programme 'Beat the kick' was delivered by an experienced psychologist, based on motivational interviewing techniques adapted for people with mild to borderline ID. Participants completed an adaptive self-reported inventory based on self-determination theory (SDT) two to three times a week during baseline, intervention and 1-month follow-up.The results of five of the six participants (one dropped out) showed that the type of motivation changed from more controlled types of motivation (i.e. external motivation and introjected motivation) at baseline to more autonomous types of motivation after completion of the intervention. In addition, the participants reported a significant increase in overall need satisfaction and autonomy satisfaction and a significant decrease of overall need frustration.The implementation of SDT and motivational interviewing principles in the treatment programme 'Beat the kick' reliably changed the type of motivation. In addition, the experimental effects provide initial proof of the use and applicability of SDT among people with ID.

The population of people with intellectual disabilities (ID) is increasing and their health needs impact on primary and secondary healthcare specialities. One important aspect of their physical health is bone health as people with ID have increased risk factors associated with osteoporosis. It has been identified that this population has an increased prevalence of low bone mineral density (BMD), osteoporosis and osteopenia. The main contributory factors for low BMD are age, use of antiepileptics, immobility and diagnosis of Down's syndrome.A literature search of electronic databases was undertaken. Studies that included people with ID were reviewed for the prevalence of osteoporosis and osteopenia. A cross-sectional survey was conducted in a community sample (n = 149) to screen for risk factors for osteoporosis.The majority of studies identified increased prevalence of osteoporosis and osteopenia with associated low BMD. In most studies individuals with ID presented with more than two risk factors. In our survey, we identified an increased prevalence of risk factors associated with osteoporosis, namely use of antiepileptics (64%), immobility (23%), history of falls (20%) and fractures (11%). We found that 54% of our sample fulfilled the criteria for screening. Of those who went on to have scans, 55% had osteoporosis and 33% had osteopenia.We conclude that we should be screening for the risk factors associated with low BMD in adults with ID. If these are present further investigations should take place and those found to have osteoporosis and osteopenia should have treatment at an early stage to prevent morbidity and improve their quality of life.

Staff attitudes may affect choices available to persons with intellectual disabilities (ID). This study examined attitudes towards people with ID among staff working with people with ID in Japan and the United States.Attitudes of staff working with people with ID in Japan and the United States were compared using the Community Living Attitudes Scale, Intellectual Disabilities Form. Responses were examined via multivariate analysis of variance.In unadjusted analyses, Japanese staff exhibited a greater tendency towards Sheltering and Exclusion of people with ID and lower endorsement of Empowerment and Similarity of people with ID. After controlling for covariates, the country effect was no longer significant for Sheltering and Exclusion. Age and education were significantly associated with attitudes in the adjusted model.While attitudes in Japan appeared less supportive of community inclusion of people with ID, some of the differences between countries were attributable to other staff characteristics such as age and education. Findings provide new information about how attitudes of staff in each country compare with each other.

People with intellectual disabilities have poorer health than their non-disabled peers. They are also more likely to be exposed to a wide range of environmental adversities in childhood. Research undertaken in the general population has demonstrated that exposure to environmental adversity in childhood can have an adverse impact on health and well-being across the life course. Recently, research in this area has added new breadth and depth to our understanding of: (1) the extent to which cumulative exposure to environmental adversities across the life course, but especially in early childhood, can reduce health and well-being; (2) the social, psychological and biological mediating pathways through which environmental adversities may impair health; (3) the processes associated with resilience and vulnerability in the face of exposure to adversity; and (4) the social significance of these effects in accounting for the magnitude of the inequalities in health that are apparent both between and within populations. This new knowledge is making a significant contribution to the development of social policies that seek to combine health gain with the reduction in health inequalities. This paper attempts to apply this knowledge to research aimed at understanding and improving the health and well-being of people with intellectual disabilities.

The aim of this review is to summarise current understanding of the neurobiology of aggression and within this context to consider the evidence base for the pharmacotherapy of aggressive challenging behaviour by people with intellectual disabilities (ID).Aggressive encounters involve a variety of psychological processes and progress has been made in understanding the brain mechanisms involved. However, the role in aggression of the neurotransmitters serotonin, dopamine and γ-aminobutyric acid is no longer as clear as it once appeared, with the result that predictions cannot be made with confidence about drug effects on aggression. There have been relatively few controlled trials of pharmacotherapy for aggression in people with ID, or, indeed, in the general population, and their outcomes have largely been negative.With the possible exception of risperidone, there is no reliable evidence that antidepressant, neuroleptic or anticonvulsant drugs are effective treatments for aggression by people with ID.

We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support.Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons.There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support.A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.

The problem of mobbing has attracted a great deal of attention over the past few years. This concern has increased the study of the phenomena, which has resulted in many scientific publications. Mobbing has been characterised as an emerging risk at work. The aim of this longitudinal study was to analyse the influence of mobbing on depressive symptoms in a sample of employees working with people with intellectual disabilities (ID).The sample consisted of 372 Spanish employees working with people with ID at 61 job centres in the Valencian Community (Spain). Seventy-nine (21.2%) participants were men, and 293 were (78.8%) women. Mobbing was evaluated by the Mobbing-UNIPSICO scale, and depressive symptoms were measured using the Zung Self Rating Depression Scale. Using analyses of variance (anova), we tested the differences in depressive symptoms according to the mobbing criteria indicated by Leymann, that is, frequency and duration at Time 1 and Time 2.Employees who met the mobbing criteria: frequency (at least once a week) and duration (at least 6 months) at the two study times presented significantly higher levels of depressive symptoms than employees who met mobbing criteria at Time 1, but did not meet any criteria for mobbing at Time 2, and employees who did not meet any criteria for mobbing at Time 1 or Time 2.We conclude that permanence of mobbing from Time 1 to Time 2 increases depressive symptoms.

The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail.Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made.Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia.When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST.

The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics.This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively.Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas.If caregivers and relatives embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work.

Background Although about 15 to 50 percent of people with intellectual disabilities (ID) living in residential settings suffer from sleep problems, scant attention is paid to these problems. Most available studies focus on pharmaceutical solutions. In this study we focus on improving sleep in people with intellectual disabilities living in residential settings by non-pharmaceutical interventions. Method The design is a multiple case study using actigraphy. Following a baseline measurement of people with ID, we recommended an intervention such as bedtime scheduling.This was followed by an effect measurement. Results Sleep efficiency, sleep latency and rising latency improved significantly.The time spent in bed also decreased significantly and the hours of sleep while in bed increased significantly. Conclusion For people with ID, sleep can be improved by non-pharmaceutical interventions. A multidisciplinary approach is helpful in selecting an adequate intervention.

People with intellectual disabilities (ID) are at a higher risk of developing diabetes compared with the non-intellectually disabled population, as a consequence of genetic syndromes and because this cohort are more exposed to many of the identified risk factors. However, little is known about the management of diabetes in this population. The aim of this study was to examine the demographics, health and the diabetes quality of care indicators used with people with ID in one region of the UK.This was a quantitative study using a postal survey design. An anonymised questionnaire was posted to all community ID teams and supported living/residential facilities requesting information on the demographics, health and quality of care indicators for people with ID who have diabetes on their caseloads.In total 186 questionnaires were returned. Results showed that 125 people with ID had Type 2 diabetes (67%) and 61 people had Type 1 (33%). Significantly more people with Down syndrome and Autistic Spectrum Disorder had Type 1 diabetes. This study found that 6% had glycossylated glucose levels (HbA1c) greater than 9.5% and for 52% the levels were between 6.5% and 9.4%. Individuals reported to have poor glycaemic control were statistically more likely to have Type 1 diabetes and be younger, live with parents or independently and be obese. Results also illustrate that the national standards for good diabetes management were only partially met.Because of their enhanced predisposition for the development of diabetes this population merits particular attention with regards to screening for the onset of diabetes. The extent to which the quality of diabetes care indicators were achieved was variable but results suggest that for many people the indices were not met, that glycaemic control was poor, that only a quarter were of normal weight, that many were hypertensive and that almost a quarter had no record of their lipid levels. These findings provoke two important questions: first, who should be responsible for promoting diabetes management in this client group and second, how can service provision be tailored to better meet their needs? Greater collaborative working and education is required between ID services, primary healthcare and diabetes clinicians in order to promote the health and meet the quality indicators of diabetes care among this population.

Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the controllability beliefs scale (CBS), a 15-item measure of beliefs regarding the controllability of challenging behaviour when used with carers of people with IDs.Two hundred and sixty-four carers of people with IDs completed the CBS, 74 people also completed the modified attributional style questionnaire and the self-injury behavioural understanding questionnaire scale to determine concurrent and convergent validity and 34 people completed the scale twice within a 2- to 4-week period to determine test-retest reliability.The scale has a two-factor structure and has adequate internal reliable. The scale is significantly correlated with the controllability, internality and stability items from the Modified Attributional Style Questionnaire, showed expected associations with behavioural and internal emotional understanding items from the self-injury behavioural understanding questionnaire. The scale has good test-retest reliability.The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs.

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.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.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).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.

In the context of a health intervention among people with intellectual disabilities (ID), there was a need to assess satisfaction with some aspects of life, in order to monitor both potential positive and negative effects of the intervention. The aim of the present study was to develop and evaluate an easily administered scale for assessing satisfaction with home environment and leisure time among people with mild or moderate ID, living in community residences.A number of questions were constructed to measure satisfaction with home environment and leisure time. The questions were answered by 132 adults with mild or moderate ID, living in community residences in Sweden. The dimensionality of the scale was evaluated by factor analysis, and the reliability was estimated using Cronbach's alpha coefficients.The analysis supported a four-factor solution with 12 items. The four factors were: (I) Satisfaction with housing environment; (II) Satisfaction with life; (III) Satisfaction with meals; and (IV) Satisfaction with recreational activity. The four factors explained almost 70% of the variance in the data set. Cronbach alpha coefficients for all scales were above 0.70, indicating that the reliabilities of the scales were satisfactory. Correlations between the four sub-scales ranged from 0.06 to 0.52, indicating low to moderate inter-correlations between the four sub-scales.The scale has fairly good psychometric properties and is easy to administer. The scale, which can be further improved, can be an important resource in health intervention studies.

Patient experience of those accessing mental health services has been found to be different between ethnic groups. Although the needs of people with intellectual disabilities (ID) from different ethnic communities are being increasingly recognised, little has been published about their experiences of mental health services. The aim of this study was to establish whether there are any differences in the experiences of people with ID and mental health problems from two ethnic communities in South London.A two-round Delphi process was utilised. White British and Black or Black British service users from a specialist community-based mental health service for adults with ID completed a specially compiled questionnaire. Statements on participants' experiences, including satisfaction with care, staff members' attitudes, cultural awareness and level of support, were rated using a Likert scale.Twenty-four out of 32 participants (75%) completed both rounds of the Delphi consultation. Consensus (≥80% agreement with the group median) was reached for 20 items in the White group and five items in the Black group. All responses that reached consensus were positive about the services that were being received. The Black group were less positive about a range of their experiences, including the use of medication.People with ID from two ethnic groups were able to successfully complete a Delphi consultation regarding their experiences of mental health services. Broad consensus on positive experiences of services was reached in the White group but not for the Black participants.

Health checks for people with intellectual disabilities (ID) have been recommended as one component of health policy responses to the poorer health of people with ID. This review summarises evidence on the impact of health checks on the health and well-being of people with ID.Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with ID.A total of 38 publications were identified. These involved checking the health of over 5000 people with ID from a range of countries including a full range of people with ID. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs.Health checks are effective in identifying previously unrecognised health needs, including life-threatening conditions. Future research should consider strategies for optimising the cost-effectiveness or efficiency of health checks.

As people with intellectual disabilities (ID) today live integrated in society and use different technological artefacts and services in their everyday life, more in-depth evaluation methods are crucial to detect strengths and limitations of their everyday technology use. The Everyday Technology Use Questionnaire (ETUQ) was originally designed to investigate the extent to which older adults with cognitive limitations can use the everyday technology that is of relevance to them. The purpose of this study was to explore and evaluate evidence of the validity of ETUQ among adult persons with ID.The original 93-item ETUQ was used to interview 120 adult participants with ID, recruited from a region in northern Sweden. A Rasch model was used to analyse the psychometric properties of the rating scale, scale validity, person response validity and person separation.The ETUQ rating scale displayed sound psychometric properties when used with this sample. The goodness-of-fit statistics showed that 15 (16%) of the 93 items demonstrated higher values than expected. A step-by-step removal process of items not demonstrating fit to the model resulted in an ETUQ version with 46 items (49%) that met all the criteria for scale validity. Fifteen participants (12%), primarily with mild ID, still demonstrated a higher number of unexpected responses included in ETUQ.The results of this study indicate that the ETUQ generates a valid measure of perceived difficulty in using everyday technology including adult persons with ID.

Persons with intellectual disabilities (ID) constitute a special-needs population at high risk of falling. This is the first study to evaluate whether obstacle course training can improve mobility and prevent falls in this population.The intervention was implemented as part of an institution-wide health care improvement plan aimed at reducing falls at a residential facility for people with ID. It comprised an annual screening of each resident for his or her individual fall risk. Subsequently, the group of ambulatory persons with a moderate to high fall risk (n = 39) were offered 10-session obstacle course training to improve their balance and gait abilities. Mobility was assessed pre-intervention, mid-term and post-intervention with the Performance Oriented Mobility Assessment (POMA), the Timed Up and Go (TUG) and the 10-meter walking test. The number of falls was compared between the year before and after intervention.The number of falls decreased by 82% (P0.001). POMA scores significantly improved from pre-intervention to mid-term (mean difference ± SD, 1.8 ± 2.9, P = 0.001), from mid-term to post-intervention (2.0 ± 2.9, P0.001), and from pre-intervention to post-intervention (3.8 ± 4.3, P0.001). Participants completed the 10-meter walking test faster at the post-intervention compared with the pre-intervention assessment (difference ± SD, 2.1 ± 5.1 s, P = 0.022). TUG scores did not improve significantly.The present study provides preliminary evidence for the effectiveness of obstacle course training in improving mobility and preventing falls in people with ID. As falls are a significant health concern in this population, further research is advocated to provide conclusive evidence for the suggested beneficial effects of exercise interventions.

Sexual development plays a vital part in young people's emotional adjustment.This study compared the sexual understanding of 30 adolescents with mild intellectual disabilities (ID) and 30 non-disabled adolescents, along with their reports of where they obtained sexual information, and the nature of their social networks and support.As expected, the non-disabled young people had superior levels of knowledge. However, an interaction was found between group and gender. The non-disabled young women had a better grasp of sexual matters than men, whereas the opposite was the case for those with ID. The non-disabled young people reported more formal and informal sources of sexual information and described larger social networks than those with ID.These findings highlight the need to tackle the barriers to sexual knowledge faced by young people with ID, and the need to take account of the broader social context of their lives when doing so. This includes the attitudes to the developing sexuality of young women with ID in particular.

Solution-Focused Brief Therapy (SFBT) is a form of behaviour therapy that focuses on evoking desired behaviour rather than on diminishing existing problem behaviour. SFBT has a number of advantages that makes it attractive for use with people who have intellectual disabilities (ID). These advantages include: focus on empowerment for the person, unique intervention strategies for each person based on their particular skills, and recognition of the expert status of the individual identified as the patient resulting in a sense of self-efficacy.To investigate the effects of SFBT, we conducted a controlled pre- and post-test and follow-up study with 20 people with mild ID (MID) receiving SFBT and 18 people with MID receiving care as usual (CAU). We expected that SFBT could help people with MID with (1) reaching treatment goals; (2) improving quality of life (i.e. psychological and social functioning); (3) reducing maladaptive behaviour; and (4) increasing resilience (autonomy and social optimism).Two of the 20 clients terminated SFBT prematurely. Most clients receiving SFBT (13 of 18 clients) showed clinically relevant progressions (more than two points on a 1 to 10 scale) towards their treatment goals after SFBT and at follow-up, an additional client showed clinically relevant progress (total of 14 of 18 clients). Directly after therapy, the SFBT group performed statistically significantly better than the CAU group on psychological functioning, social functioning, maladaptive behaviour, autonomy and social optimism. The effect sizes of these improvements were medium to large. At 6-week follow-up, the improvements in psychological functioning, social functioning and maladaptive behaviour in the treatment group were still statistically significant compared with CAU, with medium to large effect sizes.Although the study had limitations because of the short follow-up period and the non-random selection of participants, the statistically significant differences between the SFBT and CAU groups and the medium to large effect sizes, indicate the potential effectiveness of SFBT for people with MID.

As people with intellectual disabilities (ID) are living longer, their chances of developing cancer also increases. However, recognising the early signs and symptoms of cancer in a population with cognitive impairment and communication difficulties poses difficulties for both family carers and professional care staff. Engagement in health promotion and cancer prevention activities is also a challenge; yet, people with ID have an equal right to these important public services as other members of the population.The aim of this study was to examine how care staff engaged in cancer prevention and health promotion activities on behalf of people with ID.This was an exploratory descriptive study using a postal survey design employing a questionnaire. Fifteen residential facilities for adults with ID were targeted within one geographic region of the UK. In total, 40 residential staff completed a questionnaire about their knowledge of the risk and protective factors of stomach, breast, cervical and testicular cancer. Staff then completed questionnaires regarding 90 adults with ID, recording details about body mass index (BMI), lifestyle choices (i.e. smoking, dietary intake), Helicobacter pylori testing, family history of cancer and staff's health promotion and cancer prevention activities with these individuals.The women with ID were reported to have significantly higher BMIs than the men with ID and only two people with ID had been tested for the H. pylori infection: potential risk factors for developing breast and stomach cancer, respectively. The majority of the staff reported that they did not receive training in cancer prevention. Likewise, the majority of the staff reported that they were unaware of the family histories of the people with ID in their care. Reports varied with how staff engaged with people with ID regarding stomach, breast, cervical and testicular cancer health promotion activities and cancer screening opportunities.Findings of this study show that health promotion and cancer prevention activities for people with ID may be less than optimal. The importance of staff training in order to raise knowledge and awareness is highlighted. Educating both staff and people with ID about the early signs and symptoms of cancer and the importance of a healthy lifestyle as a protective factor may help lead to more informed healthier lifestyle choices and lower cancer risk and morbidity.

Executive functioning (EF) is an important concept in cognitive psychology that has rarely been studied in people with intellectual disabilities (IDs). The aim of this study was to examine the validity of two test batteries and the structure of EF in this client group.We administered the children's version of the Behavioural Assessment of the Dysexecutive Syndrome (BADS-C) and the Cambridge Executive Functioning Assessment (CEFA) for people with ID, to 40 participants who attended day centres for people with mild to moderate learning disabilities [mean full-scale intelligence quotient (IQ) = 59]. The BADS-C consists of six EF subtests while the CEFA contains eight EF (including two executive memory) subtests and four memory subtests. IQ and receptive language ability were also assessed. The results were subjected to principal components analysis, and regression analysis was used to examine the relationship of the ensuing factors to other cognitive variables.Scores on both sets of EF tests were only weakly related to receptive language ability, and even more weakly related to IQ. Scores on the BADS-C were substantially lower than predicted from the published norms for people in higher IQ ranges, and many participants scored zero on three of the six subtests. This potential floor effect was less evident with scores on the CEFA. Principal components analyses produced one usable factor for the BADS-C, and two factors for the CEFA that differed in both the extent of involvement of working memory and the predominant sensory modality. A combined analysis of the subtests retained from both analyses produced three factors that related uniquely to aspects of IQ and memory.The CEFA is suitable for use with people with mild to moderate learning disabilities, whereas the BADS-C is at the lower limit of usability with this client group. The lower-than-expected scores observed on the BADS-C may indicate that people known to learning disability services may be more impaired than people of comparable IQ not known to services. The structure of EF seen in people with IDs closely resembles a model of EF in the general population that has received a broad level of support.

While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs.A retrospective study of medical files of people who died between January 2002 and July 2007.One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision.This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.

Staff explanations about challenging behaviours of people with intellectual disabilities are purported to play a significant role in the way they respond to them. Despite attempts made in research to understand the mechanisms of causality, a lack of association between attributions, emotions and behaviours is reported. This study investigates these relationships within a broader framework including attributions in the transactional stress model of Lazarus and Folkman.A qualitative design has been selected; semi-structured interview format was used in order to investigate implication of attributions in stress regarding Weiner's model of helping behaviour. A case study method has been adopted to allow consideration of ecological data, a case study representing a special encounter with a challenging behaviour. Categorical analysis was conducted.The results suggest three main issues. First, it appears that Weiner's model is too restrictive in order to explain the complexity of contextualised encounters. Second, a need to differentiate types of attributions within a temporal perspective is highlighted. Finally, consideration of the coping role of attributions is suggested.A need to extent the research concerning attribution is suggested. The insertion of research into ecological contexts and the introduction of coping concept regarding staff attributions of challenging behaviours would allow a broader view of the role of attributions.

The general aim of this thesis is to describe mortality, health and living conditions in an administratively defined county population of people with intellectual disabilities born between 1959 and 1974 (N=213). The living conditions of persons with intellectual disabilities were compared with those of the general population. Moreover, the reports of relatives and staff were compared on the living conditions of people with intellectual disabilities. Information on the living conditions of persons with intellectual disabilities was provided by proxy (relative and staff) questionnaire reports and national welfare statistics conducted by Statistics Sweden (SCB). Medical examination and medical case records were used to obtain data on health and medical services. People with intellectual disabilities lived in the community and took part in numerous common recreational and cultural activities. However, the comparison with the general population indicated clear differences in living conditions, particularly regarding employment and social life. In contrast, surprisingly little variation in living conditions was found in people with intellectual disabilities, despite varying ages and a wide range of level of disabilities. In addition, gender related differences of persons with intellectual disabilities were few when compared with those found in the general population. A wide range of physical and mental health problems were identified in the group with intellectual disabilities. Although a majority of persons with intellectual disabilities had access to a family doctor and attended regular health checks, a number of needs of specialist examinations were identified indicating shortcomings in the quality of health care. Analyses indicated differences in the reports of relatives and staff on living conditions of most domains included in the questionnaire. In general, disagreement was higher on subjective than on objective items. Relative and staff responders contribute dissimilar information that is related to varying viewpoints and different types of information.

Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID.In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID.In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families' desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety.Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

Psychological therapies with a proven efficacy in the general population are being adapted for use with people who have intellectual disabilities in community settings.A systematic review of peer-reviewed literature published between 1980 and 2010 was carried out, to identify the evidence base for effective psychological interventions in challenging behaviour. Relevant databases were searched using applied key terms. Evidence was graded, according to the quality of the research. A best-evidence Matrix was produced to improve guidance for service providers and practitioners in the range, volume and quality of psychological interventions.There is a limited amount of efficacy research that meets the most stringent standards of empirical evidence.It is important to broaden the evidence base and consider the context of psychological interventions, alongside the values underpinning care and treatment.

According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP.Data were gathered through semi-structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts.Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID.The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives.

School leavers with intellectual disabilities (ID) often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with ID and their families as it often results in the loss of friendships, relationships and social networks.The aim of this study was to explore the family carers' views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty-three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and one Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1 (T1) and Time 2 (T2), T2 being a year later to observe any changes during transition.The findings indicate that although transition planning occurred it was relatively later in the young person's school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion.The majority of families lacked knowledge and awareness of formal services and the transition process. Socio-economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion and assumptions by service providers.

Dietary assessment is a challenge in general, and specifically in individuals with intellectual disabilities (ID). This study aimed to evaluate personal digital photography as a method of assessing different aspects of dietary quality in this target group.Eighteen adults with ID were recruited from community residences and activity centres in Stockholm County. Participants were instructed to photograph all foods and beverages consumed during 1 day, while observed. Photographs were coded by two raters. Observations and photographs of meal frequency, intake occasions of four specific food and beverage items, meal quality and dietary diversity were compared. Evaluation of inter-rater reliability and validity of the method was performed by intra-class correlation analysis.With reminders from staff, 85% of all observed eating or drinking occasions were photographed. The inter-rater reliability was excellent for all assessed variables (ICC ≥ 0.88), except for meal quality where ICC was 0.66. The correlations between items assessed in photos and observations were strong to almost perfect with ICC values ranging from 0.71 to 0.92 and all were statistically significant.Personal digital photography appears to be a feasible, reliable and valid method for assessing dietary quality in people with mild to moderate ID, who have daily staff support.