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Background: 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. Methods: 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: 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. Conclusions: 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. (Contains 2 tables and 1 figure.)

Background: 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. Method: A retrospective study of medical files of people who died between January 2002 and July 2007. Results: 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. Conclusion: 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.

Background 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. Method 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. Results 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background 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. Methods 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. Results 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. Conclusion 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. [ABSTRACT FROM AUTHOR]

Background 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. Method 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 selfdetermination theory (SDT) two to three times a week during baseline, intervention and 1-month follow-up. Results 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background 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. Methods 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). Results 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background: Data on the development of Covid‐19 among people with intellectual disabilities (IDs) are scarce and it is uncertain to what extent general population data applies to people with ID. To give an indication of possible implications, this study investigated excess mortality patterns during a previous influenza epidemic. Methods: Using Dutch population and mortality registers, a historical cohort study was designed to compare mortality during the 2017–2018 influenza epidemic with mortality in the same period in the three previous years. People with ID were identified by entitlements to residential ID‐care services as retrieved from a national database. Results: Data covered the entire adult Dutch population (12.6 million; GenPop), of which 91 064 individuals were identified with an ID. During the influenza epidemic, mortality among people with ID increased almost three times as much than in the GenPop (15.2% vs. 5.4%), and more among male individuals with ID (+19.5%) than among female individuals with ID (+10.6%), as compared with baseline. In both cohorts, comparable increases in mortality within older age groups and due to respiratory causes were seen. Particularly in the ID‐cohort, excess deaths also occurred in younger age groups, due to endocrine diseases and ID‐specific causes. Conclusions: During the 2017–2018 influenza epidemic, excess mortality among people with ID was three times higher than in the general Dutch population, appeared more often at young age and with a broader range of underlying causes. These findings suggest that a pandemic may disproportionally affect people with ID while population data may not immediately raise warnings. Early detection of diverging patterns and faster implementation of tailored strategies therefore require collection of good quality data. [ABSTRACT FROM AUTHOR]

Background 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. Method 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 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background The aim of this article was to investigate the beliefs and considerations of professionals concerning an appropriate environment for end-of-life care for people with intellectual disabilities ( ID). Method A survey questionnaire was composed based on a scan of relevant literature and the results of group interviews with professionals, family members and people with ID. The questionnaire focused on the respondents' general beliefs about an appropriate environment for end-of-life care and their specific considerations regarding the place of care of the last client for whom the respondent provided end-of-life care. The questionnaire was sent to 294 care staff members recruited from a nationally representative panel of nurses and social workers, 273 ID physicians recruited from the members list of the Dutch professional association of ID physicians, and 1000 general practitioners ( GPs) recruited from a nationally representative sample from a national registration of GPs. Results The overall response was 46%. Professionals predominantly believe that all efforts should be made to ensure that a person with ID receives end-of-life care in their own home environment, and that 24/7 care is available. Respondents indicated that most of the clients (79%) who had last received end-of-life care from an ID care service were able to stay in their own home environment. Decisions to keep the client in their own home environment were primarily based on the familiarity of the environment and the expertise of the team in end-of-life care. Insufficient expertise and a lack of adequate equipment were the main considerations in decisions to move a client. Despite the belief of care staff in particular that the wishes of the person with ID should always be leading when deciding on the place of end-of-life care, only 8% of the care staff and ID physicians explicitly mentioned that the client's wishes were taken into account in actual decision-making. Conclusions Professionals agree that end-of-life care for people with ID should preferably take place in the client's home environment, even when nursing expertise, experience and adequate equipment are not (yet) in place. Nonetheless, a lack of expertise in end-of-life care is the foremost consideration in decisions to move a client. If ID care services want to promote end-of-life care in the client's own home, we recommend formulating a policy on how to realise end-of-life care in the client's own home environment and provide sufficient training and support for staff. To involve people with ID as much as possible, we recommend that professionals integrate more collaborative principles in decision-making about the place of end-of-life care. [ABSTRACT FROM AUTHOR]

Background 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. Method 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. Results 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background: This study examined the psychometric properties of the Group Climate Instrument (GCI) in a sample of N = 189 adults (79% men) with mild intellectual disability or borderline intellectual functioning who were residents of a treatment facility in the Netherlands. Method: Construct validity of the GCI was examined by means of confirmatory factor analysis. Also, reliability and convergent validity of the GCI were examined. We also examined the variability in perception of the living group climate between and within living groups by computing intraclass correlation coefficients. Results: The model contained four first‐order factors (support, growth, group atmosphere and repression) and a second‐order factor overall climate, providing preliminary support for construct validity of the GCI. Reliability coefficients were good for all factors. Preliminary evidence for convergent validity was found in significant moderate associations between subscales and single item ratings for the factors of group climate. The intraclass correlation coefficients indicated that a considerate proportion of variance can be attributed to between‐group differences. Conclusions: The GCI might be used to assess perception of the living group climate for individuals with mild intellectual disability or borderline intellectual functioning in psychiatric and forensic care settings, although further development of the GCI and replication of our findings seem necessary. [ABSTRACT FROM AUTHOR]

Background 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. Method 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. Results 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. Conclusions 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. [ABSTRACT FROM AUTHOR]

Background: During the first COVID‐19 lockdown period, various restrictions led to diminished access to both educational and professional support systems for children with an intellectual disability and their families. The aim of this study was to explore the experiences and needs of parents caring for a child with an intellectual disability during the first lockdown period in the Netherlands. Method: Five mothers caring for a child with an intellectual disability participated in this qualitative study. The participants were interviewed using a semi‐structured interview guide. The interviews lasted between 26 and 48 min. The interview recordings were transcribed verbatim, and the transcripts were analysed thematically. Results: Three overarching themes emerged: (1) We need to stay healthy, which centres on the mother's urge to protect their child's well‐being; (2) We make it work, which provides insight into how the mothers were handling the drastic changes in their family; and (3) My child's and family's place in the world, which focuses on the mothers' experienced position in the world around them. Conclusions: The current study provides valuable insights into the experiences and needs of mothers caring for a child with an intellectual disability during the COVID‐19 pandemic. [ABSTRACT FROM AUTHOR]

Background Among persons with a mild intellectual disability or borderline intellectual functioning, differences in their characteristics imply that a differentiated approach is required to meet their needs. This retrospective study examined whether the history of support/treatment programs and the type of healthcare providers involved matched the specific support needs of persons with a mild intellectual disability or borderline intellectual functioning. Method Five (previously identified) profiles of persons with a mild intellectual disability or borderline intellectual functioning were used to investigate to what extent the support needs of this group had been met. For the 250 persons with mild intellectual disability or borderline intellectual functioning who matched these five profiles, data were collected retrospectively from their case files. Results Persons with mild intellectual disability or borderline intellectual functioning received a very similar amount and type of support/treatment programs. Differences between the profiles were found for non-verbal therapy, residential treatment and contacts with social work. Regarding the type of healthcare providers involved, differences between the profiles emerged for specialised intellectual disability services, youth services and specialised addiction services. Conclusions The support programs for a heterogeneous population of persons with mild intellectual disability or borderline intellectual functioning seem to be suboptimal, indicating that more differentiation is required in the services offered to these individuals. [ABSTRACT FROM AUTHOR]

Background: Poor working memory, lower IQ and maladaptive behaviour form a triple disability known to have negative effects on the academic and social development of children with borderline intellectual functioning (BIF; IQ: 70 < IQ < 85) and neuropsychiatric disorders [attention‐deficit hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD)]. Treatment possibilities for these children are scarce and hardly evidence based. This study primarily investigated whether adaptive computerised working memory training (WMT) may lead to significantly more improvement on a non‐trained visuospatial WM task compared with a non‐adaptive control WMT (placebo) in children with BIF and neuropsychiatric disorders. As secondary outcome measures, we used the scores on several non‐trained neuropsychological near‐transfer and far‐transfer tasks as well as behavioural measures. Method: We conducted a triple‐blind placebo‐controlled randomised clinical trial in 72 children (aged 10;0–13;11 years, 53 boys, 19 girls) with BIF and comorbid neuropsychiatric disorders (ADHD = 37, ASD = 21, both = 14) that were referred to child and adolescent psychiatry care, between May 2012 and March 2019. Children completed the Dutch version of Cogmed WMT, either the adaptive training version or the non‐adaptive placebo version, 25 sessions (30–45 min a day), for 5 weeks. The primary outcome measure was the score on a non‐trained visuospatial working memory task. The primary outcome was measured before and directly after 5 weeks of WMT and again 6 months after training. Results: A total of 375 children were screened for eligibility and 72 were randomised. No significantly higher levels of improvement over time were found on our primary outcome measure in the experimental WMT group compared with the placebo control WMT, nor in the secondary (near‐transfer and far‐transfer tasks) or tertiary (behavioural measures) outcome measures. However, this study did show changes over time for these measurements for both the experimental and placebo conditions. Conclusions: This study was unable to document superior training effects over time of an adaptive WMT in children with BIF and neuropsychiatric disorders, compared with a placebo (non‐adaptive) WMT. The objectively documented changes over time in the non‐adaptive WMT arm suggest that these children with persistent impairments in WM may benefit from a structured learning environment that is associated with improvement of neurocognitive functioning and coping strategies. Further research is needed to examine which elements of cognitive training may be useful for which specific patients and to study long‐term effects of training. [ABSTRACT FROM AUTHOR]

Background: Long‐term use of antiseizure drugs is associated with a low bone mineral density (BMD) and an increased fracture risk. The literature regarding institutionalised children on chronic antiseizure drugs is limited. Therefore, the aim of this cross‐sectional study is to evaluate the prevalence of low BMD and the history of fractures in institutionalised children with epilepsy and intellectual disability (ID). Methods: A dual‐energy X‐ray absorptiometry of lumbar spine (L1–L4) and hip was performed in 24 children, residing in a long‐stay care facility in the Netherlands. Additionally, serum concentrations of albumin, calcium and 25‐hydroxyvitamin D were determined. Data on fractures were retrospectively extracted from the medical files. Results: Ages of the children (14 male and 10 female) ranged from 5 to 17 years with a mean age of 13.0 (±3.2). The criteria of the International Society for Clinical Densitometry (ISCD) were used for classification of bone mineral disorders. Eight (33.3%) children had a normal BMD (Z‐score > − 2.0). Of the 16 children with a low BMD (Z‐score ≤ − 2.0), three were diagnosed as osteoporotic, based on their fracture history. Ten children (41.7%) were reported to have at least one fracture in their medical history. Serum concentrations of albumin‐corrected calcium (2.28–2.50 mmol/L) and (supplemented) vitamin D (16–137 nmol/L) were within the normal range. Conclusions: This study demonstrated that 67% of institutionalised children with epilepsy and ID had low BMD and 42% had a history of at least one fracture, despite supplementation of calcium and vitamin D in accordance with the Dutch guidelines. [ABSTRACT FROM AUTHOR]

Background: Light exposure affects mood and sleep regulation. Sleep problems and mood complaints are common in elderly with intellectual disabilities (ID) living in care facilities. Insufficient light exposure is hypothesised to contribute to the high prevalence of these problems. The current study is the first to describe the personal light exposure pattern during the waking day in elderly with ID. Methods: The study sample consists of 82 elderly with ID (aged 62.3 ± 9.4 years) living in 16 residential homes of three care organisations in the Netherlands. Personal light exposure was measured continuously for 7–10 days using a HOBO data logger light sensor, measuring illuminance at chest height. Participants wore a wrist‐worn accelerometer (Actiwatch or Geneactiv) to indicate the bedtimes to determine the waking day. Results: The variation in illuminance is small during the waking day. Elderly with ID spend most of their waking day (mean duration = 14:32:43 h) in dim light (1–500 lux) environment and spend a median of 32 min in light > 1000 lux. Within participants, the threshold associated with better sleep (>50 min of light > 1000 lux) was reached for 34% of the days, and the threshold associated with less depressive symptoms (>30 min of light > 1000 lux) was reached in 46% of the days. Exposure > 1000 lux was lower during weekends than during weekdays. Conclusion: Elderly with ID spend most of their waking day in low light levels and did not meet the proposed values associated with better sleep and mood. Given the importance of adequate light exposure for regulation of sleep and mood, and the prevalence of sleep and mood problems in elderly with ID, the current study suggests that the lit environment for this already frail population should be given more attention. [ABSTRACT FROM AUTHOR]

Background: The lockdown‐measures in response to COVID‐19 taken by long‐term care organisations might have impacted problem behaviour and behavioural functioning of people with intellectual disability. This study tested changes in reported incidents, in particular regarding aggression, unexplained absence and, for contrast, medication errors. Methods: Metadata on weekly incident and near‐incident reports from 2016 to June 2020 involving over 14 000 clients with mild to serious intellectual disability of 's Heeren Loo, a long‐term care organisation for people with intellectual disability, were subjected to interrupted time series analysis, comparing the COVID‐19 with the pre‐COVID‐19 period. Results: The imposition of lockdown‐measures coincided with a significant drop in incidents (total, P <.001; aggression, P =.008; unexplained absences, P =.008; and medication errors, P <.001). Incidents in total (P =.001) and with aggression (P <.001) then climbed from this initial low level, while medication errors remained stably low (P =.94). Conclusion: The rise in incidents involving aggression, against the background of generally lowered reporting, underlines the need for pandemic control measures that are suitable for people with intellectual disability in long‐term care. [ABSTRACT FROM AUTHOR]

Background: Assertive community treatment (ACT) and Flexible assertive community treatment (FACT) are organisation models for intensive assertive outreach that were originally developed for individuals with severe mental illness. The models are increasingly applied to people with mild intellectual disability (MID) or borderline intellectual functioning (BIF) and challenging behaviour or mental illness. Research on these types of care for this population is limited. To gain experience in FACT MID/BIF in the Netherlands and to obtain insight in its outcomes, four organisations specialised in the treatment of individuals with MID/BIF and challenging behaviour participated in a 6‐year implementation and research project. Methods: A longitudinal study was set up to investigate outcomes over time. Outcome measures concerned admissions to (mental) health care, social and psychological functioning, (risk of) challenging and criminal behaviour, social participation and client satisfaction. Data were analysed using descriptive statistics and linear mixed models. Results: Over time, clients showed improvement in their social and psychiatric functioning and living circumstances. The number of admissions to (mental) health care diminished as well as the number of contacts with police and justice, the level of social disturbance and the risk factors for challenging and criminal behaviour. Problems related to finances, work and substance abuse remained unchanged. Conclusions: The results are encouraging and give rise to continued development of and broader research on FACT MID/BIF. [ABSTRACT FROM AUTHOR]

Background The aim of this study is to explore the prevalence and influencing factors of metabolic syndrome (MetS) in people with intellectual disabilities (IDs) and behavioural problems in a Dutch special healthcare institution. Methods This observational study was conducted from medical records of physical examinations, laboratory results, medication (history), ethnicity and length of stay, as well as from questionnaires about lifestyle and smoking habits. MetS was defined by using the criteria of the 2009 consensus guidelines. The questions in this study were about the prevalence of MetS over a 1-year period and exploration of the differences between the people with and without MetS to determine the factors associated with it. Results The overall prevalence of MetS in the selected population of people with IDs and behavioural problems was 46%. The factors 'use of conventional antipsychotics', 'age', and a ' low nutrition score' increased the risk of developing MetS. Together, these variables determine 19% of the variance in the incidence of MetS. Conclusions The study indicates a firm prevalence of MetS in a vulnerable population, whereby a minority of contributing factors was determined. Professionals should be particularly alert during the provision of antipsychotics, diet and exercise habits to prevent MetS when treating people with IDs and behavioural problems, and further studies are needed to explore the factors that contribute to the nascence and prevalence of MetS. [ABSTRACT FROM AUTHOR]

Background Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care. Method In this study, 81 physicians for people with ID and 16 general practitioners completed a retrospective survey about their last case of a patient with ID with a non-sudden death. Results More than 20% of all physicians foresaw death not until the last week of life. In 30% of all patients, the physician did not discuss the start of the palliative care phase until the last week. The most reported information sources based on which physicians foresaw death were the physicians themselves and professional caregivers. We found 40 different signals that lead to physicians' foreseeing death. These were not only medical signals but also behavioural and physical signals. Conclusions Results indicate that the physicians' ability to foresee death is a result of a process of growing awareness in which multiple signals from different information sources converge. This demands continuous multi-disciplinary communication because people involved have their own unique interactions with the patient and can therefore contribute to a growing and timely awareness of patients' death in the future. [ABSTRACT FROM AUTHOR]

Background It is difficult to diagnose autism spectrum disorder (ASD) in people with a combination of intellectual and sensory disabilities because of overlap in behaviour. The ASD typical behaviours of people with combined intellectual and sensory disabilities are often caused by their disabilities and not by ASD. Current diagnostic tools are inadequate to differentiate between people with and without ASD when they have these combined disabilities, because tools lack norms for this population or are subjective, indirect or unable to adapt to the variety of disabilities that these people may have. Because giving a correct diagnosis is necessary for treatment and support, a new observational tool was developed to diagnose ASD in people with multiple disabilities, observation of autism in people with sensory and intellectual disabilities (OASID). Method Observation of autism in people with sensory and intellectual disabilities was tested on 18 participants with moderate to profound intellectual disabilities, one or dual sensory impairment, with and without ASD. Two independent experts diagnosed these participants as well in order to test the psychometric properties and differentiating abilities of OASID. Results Observation of autism in people with sensory and intellectual disabilities showed high inter-rater reliability, internal consistency of scales and content and construct validity. OASID could differentiate people with and without ASD without overlap. Conclusions Observation of autism in people with sensory and intellectual disabilities could differentiate people with intellectual disabilities combined with sensory impairments, who clearly had or did not have signs of ASD. People with unclear signs of ADS scored in between those two groups with regard to their OASID scores. Psychometric properties of OASID are promising. [ABSTRACT FROM AUTHOR]

Background A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life ( QOL) for people with intellectual disabilities ( ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. Method Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. Results The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection - especially towards family and professionals - was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. Conclusions The significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves. [ABSTRACT FROM AUTHOR]

Background People with intellectual disability (ID) frequently use antipsychotic drugs on an off-label base, often for many years. Physicians' decisions to discontinue these drugs not only depend on patient characteristics, like the presence of mental or behavioural disorders, but also on environmental factors, such as inappropriate living circumstances, and on attitudes, knowledge and beliefs of staff, clients and their representatives towards the effects of antipsychotic drug use. In this study, we therefore investigated the influence of participant and setting-related factors on decisions of physicians not to discontinue off-label prescribed antipsychotics. Methods The study took place in living facilities of six service providers for people with ID spread over the Netherlands and staffed with support professionals, nurses, behavioural scientist and physicians and was part of an antipsychotics discontinuation trial. ID physicians had to decide whether the off-label use of antipsychotics could be discontinued. Medical and pharmaceutical records were used to establish the prevalence of antipsychotic drug use in the study population, along with duration of use and whether the use was off-label. Reasons of physicians not to discontinue the prescription of antipsychotics in those participants who used off-label antipsychotics for more than a year were collected and categorised as related to participant or setting characteristics, including lack of consent to discontinue, and staff members, participants or their legal representatives. Results Of the 3299 clients of the service providers, 977 used one or more antipsychotic drugs. The prevalence of antipsychotic drug use was 30%. Reasons for use were in 5% of cases, a chronic psychotic disorder classified according to Diagnostic System Mental Disorders, Fourth Edition, criteria, in 25%, present or past (suspected) non-schizophrenia-related psychotic symptoms and in 69%, challenging behaviours. Overall, physicians were willing to discontinue their prescriptions in 51% of cases, varying from 22% to 87% per service provider. The odds for decisions of physicians to discontinue off-label prescriptions varied from 0.19 to 13.95 per service provider. The variables 'a living situation with care and support' and 'challenging behaviour' were associated with a higher chance of discontinuation. The main reasons for decisions not to discontinue were concerns for symptoms of restlessness, the presence of an autism spectrum disorder, previously unsuccessful attempts to discontinue and objections against discontinuation of legal representatives. Reasons for physicians' decisions not to discontinue the off-label use of antipsychotics varied largely between the service providers. Conclusions The prevalence of antipsychotic drug use for off-label indications in people with ID remains high. The results of this study indicate that there is a large variation in clinical practice of physicians regarding discontinuation of long-term antipsychotic drug prescriptions, which may be partially related to environmental factors as setting culture and attitudes of staff towards off-label antipsychotic drug use in persons with ID. [ABSTRACT FROM AUTHOR]

One of the causes of osteoporosis is immobility. The present study examined osteoporosis in 23 bedridden adults with intellectual disability. It was found that the bone mineral density of the subjects was low, even though their calcium intake was more than adequate. Vertebral and other fractures were concentrated mainly in the elderly subjects (> 50 years). Very low vitamin D levels were also found in the subjects despite good nutritional levels. It is concluded that people with intellectual disability and mobility disorders are at risk of metabolic bone disease. [ABSTRACT FROM AUTHOR]

Background Depression, anxiety, diabetes and cardiovascular risk factors are frequent health problems among older people with intellectual disability ( ID). These conditions may be bidirectionally related. Depression and anxiety may have biological effects causing glucose intolerance, fat accumulation and also lifestyle changes causing metabolic syndrome. But also the effects of diabetes, metabolic syndrome and subsequent cardiovascular disease may affect mood and anxiety. This study investigated the association between depression, anxiety and diabetes and cardiovascular risk factors in older people with ID. Methods The healthy ageing in intellectual disability-study ( HA- ID study) is a cross-sectional study among people aged 50 years and over with ID, receiving formal ID care. Screening instruments for symptoms of anxiety and depression were completed and physical examination and vena-puncture were performed to establish components of the metabolic syndrome, peripheral arterial disease and c-reactive protein. Results Of the 990 people who participated, 17% had symptoms of depression and 16% had symptoms of anxiety. Type I diabetes was present in 1%, type II diabetes in 13% of the study population. Metabolic syndrome, central obesity, hypercholesterolemia and hypertension were present in 45%, 48%, 23% and 53% respectively. In a multivariate logistic regression analysis a significant association was found between increased anxiety symptoms and diabetes only ( OR 2.4, 95% CI 1.2-4.9). Conclusions Increased anxiety symptoms and diabetes are related in older people with ID. This association may be bidirectional. No other associations of depression and anxiety symptoms with cardiovascular risk factors could be proven to be significant. Therefore, more research is needed to unravel the mechanisms of stress, mood disorders and cardiovascular disease in older people with ID. To provide comprehensive care for older people with ID, screening for diabetes and components of the metabolic syndrome in people with anxiety or mood disorders, and screening for symptoms of anxiety or depression in people with diabetes is warranted. [ABSTRACT FROM AUTHOR]

Background In the Netherlands, no self-report screening questionnaire for anxiety in people with intellectual disabilities ( ID) was available yet. Therefore, we have translated the Glasgow Anxiety Scale for people with an Intellectual Disability ( GAS-ID) into Dutch and studied its reliability and validity in adults with borderline, mild or moderate ID. Method Test-retest reliability was studied in 66 participants, convergent validity against the Anxiety sub-scale of the Hospital, Anxiety and Depression Scale ( HADS-A) in 96, and criterion validity against psychiatric diagnosis in 195 participants. Results Internal consistency was α = 0.86 and test-retest reliability ICC = 0.89 (95% CI: 0.82-0.93). Correlation with the HADS-A was r = 0.61 (95% CI: 0.47-0.72); sensitivity was 83.9% (95% CI: 72.2-91.2) and specificity was 51.8% (95% CI: 43.6-59.9) using a cut-off score of 17. Missed diagnoses (false-negatives) were mostly specific phobias. Of the false-positives, 38 of 66 participants (58%) had another psychiatric diagnosis. Conclusions The Dutch version of the GAS-ID is a reliable screening instrument with satisfactory sensitivity, but moderate specificity for anxiety disorders. Although specificity for anxiety disorders is only moderate, high scores appear to be indicative of other psychiatric problems too, justifying referral for psychiatric assessment of false-positives. [ABSTRACT FROM AUTHOR]

Background The aim of this study was to investigate the process of end-of-life decision-making regarding people with intellectual disabilities (ID) in the Netherlands, from the perspective of physicians. Methods This qualitative study involved nine semi-structured interviews with ID physicians in the Netherlands after the deaths of patients with ID that involved end-of-life decisions. The interviews were transcribed verbatim and analysed using Grounded Theory procedures. Results Four main contributory factors to the physicians decision-making process were identified, three of which are related to the importance of relatives' wishes and opinions: (1) Involving relatives in decision-making. As they had assessed their patients as lacking capacity, the physicians gave very great weight to the opinions and wishes of the relatives and tended to follow these wishes. (2) Delegating quality of life assessments to relatives. Physicians justified their end-of-life decisions based on their medical assessment, but left the assessment of the patients' quality of life to relatives, despite having their own implicit opinion about quality of life. (3) Good working relationships. Physicians sought consensus with relatives and paid care staff, often giving greater weight to the importance of good working relationships than to their own assessment of the patient's best interest. (4) Knowledge of the patient's vulnerabilities. Physicians used their intimate, long-standing knowledge of the patient's fragile health. Conclusions In order to take a more balanced decision, physicians should seek possibilities to involve patients with ID themselves and other stakeholders which are important for the patients. Physicians who have known the patient over time should rely more on their own knowledge of the patient's needs and preferences, seek the input of others, and openly take the lead in the decision-making process. [ABSTRACT FROM AUTHOR]

Background The physical activity level of older adults with intellectual disabilities (ID) is extremely low, and their fitness levels are far beneath accepted norms for older people with normal intelligence and comparable with frail older people. A physical activity programme, including an education programme, was developed for older adults with ID using behaviour change techniques. The programme aimed at improving or maintaining adequate levels of physical activity (primary outcome measure) and motor fitness, cardio respiratory fitness, morphologic and metabolic fitness, activities of daily living, cognitive functioning and depressive symptoms (secondary outcome measures). Method The programme's efficacy was evaluated in a cluster-randomised clinical trial among people aged 43 years and over with mild-moderate levels of ID. Five day-activity centres were randomised to the participation group. In these centres, 81 older adults participated in groups of 8 to 10 in the programme, three times a week during 8 months. The programme was executed by physical activity instructors and staff of day-activity centres. Five other day-activity centres were randomised to the control group; 70 older adults in these centres received care as usual. The generalised linear model with mixed effects was used to test the programme's effectiveness. Results Significant effects were found on physical activity, muscle strength, systolic and diastolic blood pressure, serum cholesterol level and cognitive functioning, in favour of the programme's participants. No significant improvements were found on balance, serum glucose, weight, waist circumference, walking speed, mobility, depression or instrumental activities of daily living. Conclusions The physical activity and fitness programme has established small but significant effects in this sample, but generalising the findings to other settings is difficult due to significant participant dropout. Implementation of evidence-based physical activity programmes among older adults with ID is recommended. Further research is needed to investigate the effectiveness of physical activity on daily life functioning and the development on chronic diseases in the long run. [ABSTRACT FROM AUTHOR]

Background People with severe or profound intellectual and motor disabilities (SPIMD) encounter several risk factors associated with higher mortality rates. They are also likely to experience a cluster of health problems related to the severe brain damage/dysfunction. In order to earlier detect physical health problems in people with SPIMD, first of all, knowledge regarding the prevalence of physical health problems is necessary. The aim of this systematic review was to methodically review cross-sectional studies on the prevalence of various types of physical health problems in adults with SPIMD. Method MedLine/PubMed, CINAHL, Embase, PsycINFO and Web of Science were searched for studies published between 2004 and 2015. The quality of the incorporated studies was assessed utilising an adjusted 'risk of bias tool' for cross-sectional studies. To estimate the prevalence of the health problems, the proportion and corresponding confidence interval were calculated. A random effect meta-analysis was performed when at least three studies on a specific health problem were available. Results In total, 20 studies were included and analysed. In the meta-analysis, a homogeneous prevalence rate of 70% (CI 65-75%) was determined for epilepsy. Heterogeneous results were ascertained in the meta-analysis for pulmonary/respiratory problems, hearing problems, dysphagia, reflux disease and visual problems. For the health problems identified in two studies or in a single study, the degree of evidence was low. As expected, higher prevalence rates were found in the current review compared with people with ID for visual problems, epilepsy and spasticity. Conclusion This review provides an overview of the current state of the art research on the prevalence of health problems in adults with SPIMD. There is a substantial need for comprehensive epidemiological data in order to find clusters of health problems specific for people with SPIMD. This would provide insight into the excess morbidity associated with SPIMD. [ABSTRACT FROM AUTHOR]

Background Diagnostics and care for people with intellectual disabilities (ID) and psychiatric disorders need to be improved. This can be done by using assessment instruments to routinely measure the nature and severity of psychiatric symptoms. Up until now, in the Netherlands, assessment measures are seldom used in the psychiatric care for this population. The objective of the present paper is to evaluate the use of the Brief Symptom Inventory (BSI), a widely used standardised questionnaire in general psychiatry, in a well-defined sample of people with borderline intellectual functioning or mild ID diagnosed with one or more psychiatric disorders. Methods A total of 224 psychiatric outpatients with either borderline intellectual functioning or mild ID participated in this study. All participants were new patients of Kristal, Centre for Psychiatry and Intellectual Disability in the Netherlands, in the period between 1 April 2008 and 1 October 2009. All participants were assessed by a multidisciplinary team, including a certified psychiatrist. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) criteria were applied. The mean total intelligence quotient was measured with the Wechsler Adult Intelligence Scale (WAIS-III). The BSI was administered in an assisted fashion. Utility and psychometric properties of the BSI were investigated. Internal consistency coefficients (Cronbach's alphas) were computed. Bivariate correlations between the sub-scales were computed to assess differentiation between the scales. Mean sub-scale scores were compared between different DSM-IV-TR subgroups to investigate the discriminant abilities of the scales. A confirmatory factor analysis was conducted. Results The results suggest that the BSI is practically useful. Internal consistencies ranged from 0.70 to 0.96 and thus are considered good to adequate. Sub-scale inter-correlations showed there is a degree of differentiation between the sub-scales. Discriminant validity was shown for the sub-scales depression, anxiety and phobic anxiety. Confirmatory factor analysis showed that the underlying structure of the BSI could be described by the same nine-factor model as reported in previous studies. Conclusions As a result of the psychometric properties illustrated, this study supports the use of the BSI as a screener for psychopathology and a general outcome measure in people with ID. [ABSTRACT FROM AUTHOR]

Background People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans. Method We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded. Results The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux. Conclusions The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction. [ABSTRACT FROM AUTHOR]

Background Substance use disorders (SUD) are associated with several neurobiological disruptions, including biases in attention and approach/avoidance behaviour. The aims of this study were to compare the strength of cognitive biases between light and problematic drinkers, to explore the role of IQ on the cognitive biases and to study the psychometric qualities of the measures. Method Participants ( N = 130) were divided into four groups based on IQ and severity of alcohol use-related problems: light ( n = 28) and problematic drinkers ( n = 25) with (sub)average IQ and light ( n = 33) and problematic drinkers ( n = 44) with mild to borderline intellectual disability (MBID). All participants performed the visual dot probe task and the approach avoidance task to measure the strength of cognitive biases. Results In contrast with the hypothesis, no cognitive biases were found in problematic drinkers. Full scale IQ nor level of craving influenced the strength of the cognitive biases in light and problematic drinkers, although IQ did influence task performance (i.e. large intra-individual, trial-to-trial variation in reaction time). The internal consistency of the visual dot probe task was good, whereas the internal consistency of the approach avoidance task was poor. Conclusion Cognitive biases seem to vary within the group of problematic drinkers as a whole. The psychometric qualities of the measures are problematic, especially in relation to the intra-individual variability in reaction time found in participants with MBID. Until the implications of this variability on the validity of implicit measures and establishing bias scores are more clear, the use of these measures in individuals with MBID calls for scrutiny. [ABSTRACT FROM AUTHOR]

Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting. The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents. The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research. The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID. [ABSTRACT FROM AUTHOR]

Background Problematic drinkers favour the processing of alcohol-related stimuli at the cost of other stimuli and also find it difficult to disengage their attention from these stimuli. This is indicative of an attentional bias towards alcohol. The goal of this study was to examine this bias in problematic drinkers with and without mild to borderline intellectual disability (MBID) using both eye tracking methodology and behavioural data (i.e. reaction time (RT) data). Method Participants ( N = 133) were divided into four groups based on (estimated) full scale intelligence quotient (IQ) and severity of alcohol use-related problems. The severity of substance use-related problems was assessed with the Alcohol Use Disorder Identification Test (AUDIT). The visual dot probe task was used to measure the attentional bias. We analysed both eye tracking data and behavioural data (i.e. RT data) of the visual dot probe task. Results Problematic drinkers were not more likely than light drinkers to direct their attention towards pictures of alcoholic beverages, did not look at these pictures longer than light drinkers and did also not respond faster than light drinkers to probes replacing pictures of alcoholic beverages. However, the strength of the attentional bias varied profusely. Conclusion Taking the large variability in the strength of the attentional bias and the poor psychometric qualities of the measures into consideration, it is concluded that the use of these measures for clinical purposes is discouraged. [ABSTRACT FROM AUTHOR]

Background Recent research addressed the relationship between staff behaviour and challenging behaviour of individuals with an intellectual disability ( ID). Consequently, research on interventions aimed at staff is warranted. The present study focused on the effectiveness of a staff training aimed at emotional intelligence and interactions between staff and clients. The effects of the training on emotional intelligence, coping style and emotions of support staff were investigated. Method Participants were 214 support staff working within residential settings for individuals with ID and challenging behaviour. The experimental group consisted of 76 staff members, 138 staff members participated in two different control groups. A pre-test, post-test, follow-up control group design was used. Effectiveness was assessed using questionnaires addressing emotional intelligence, coping and emotions. Results Emotional intelligence of the experimental group changed significantly more than that of the two control groups. The experimental group showed an increase in task-oriented coping, whereas one control group did not. The results with regard to emotions were mixed. Follow-up data revealed that effects within the experimental group were still present four months after the training ended. Conclusions A staff training aimed at emotional intelligence and staff-client interactions is effective in improving emotional intelligence and coping styles of support staff. However, the need for more research aiming at the relationship between staff characteristics, organisational factors and their mediating role in the effectiveness of staff training is emphasised. [ABSTRACT FROM AUTHOR]

Background Empirical research on homosexuality among people with an intellectual disability (ID) is limited and, to date, very little is known regarding the personal experiences of gay and lesbian people with an ID. This study set out to answer the question: What are the lived experiences of a specific cohort of homosexual people with an intellectual disability living in the Netherlands? Method To answer this question, a qualitative study was performed in which 21 people with a mild ID were interviewed via semi-structured interviews. In this study, 19 participants were men and two were women (average age = 40.5 years). Results Participants reported positive and negative experiences, and talked about their gay or lesbian identity. Almost half of the participants ( n = 10) reported that they had experienced sexual abuse including partner violence ( n = 6). Additionally, they indicated that there was a lack of support for homosexual people with an ID. Conclusion Specific problems impact the lives of homosexual people with ID, namely the high prevalence of negative sexual experiences, the lack of support, training and sex education, and their search for a suitable partner. [ABSTRACT FROM AUTHOR]

The objective of this study was to determine the prevalence and incidence of the most frequent chronic health problems in relation to age in people with intellectual disabilities living in residential facilities in the Netherlands. A prospective cohort study was done with four data collections, each with an interval of one year. Data were collected by means of questionnaires which were completed by each person's physician. Striking results included the reported high prevalence and incidence of visual and hearing impairment, which was even more pronounced in people with Down's syndrome than in people with intellectual disability resulting from other causes. Gastrointestinal problems also appeared to have high incidence rates. Dementia was frequently reported in people with Down's syndrome aged 40 years and older. The results reflect the need for a more predictive policy which can anticipate health problems in people with intellectual disability. [ABSTRACT FROM AUTHOR]

Background Prevalence rates of challenging behaviour are high in children and adults with profound intellectual and multiple disabilities (PIMD). Moreover, many of these behaviours are observed daily. Direct support staff report that most challenging behaviour identified has little impact on the person with PIMD and attribute challenging behaviour in children and adults with PIMD mainly to a biomedical model. The purpose of this study was to evaluate whether an intervention (psycho-education) had any effect on direct support staff's assessment of challenging behaviour in terms of its severity and their biomedical causal explanations (attributions) for this behaviour. Method A stepped wedge study design was used to evaluate the effects of a psycho-education intervention on the perceived severity and the attributions offered for challenging behaviour of people with PIMD by 198 direct support staff. We used questionnaires assessing the perceived severity of challenging behaviour and staff views of its causes. Data on the dependent variables were collected at four 1-month intervals. Results The intervention was found to have an effect on the perceived severity of challenging behaviour identified in people with PIMD in the sense that staff generally scored challenging behaviour as more severe in its consequences after the intervention. However, this effect was very small. No significant effects were found in terms of reduction in the biomedical scale scores. Conclusion No evidence for the effectiveness of a psycho-educational approach on the assessment of challenging behaviour in terms of severity and the biomedical attributions for behaviour was found. More research is required to explore further the effects of more elaborate training using methods to enable direct support staff to reflect on the behaviour of people with PIMD and on their own behaviour. [ABSTRACT FROM AUTHOR]

Background Multi-sensory storytelling (MSST) was developed to include persons with profound intellectual and multiple disabilities in storytelling culture. In order to increase the listeners' attention, MSST stories are individualised and use multiple sensory stimuli to support the verbal text. In order to determine the value of MSST, this study compared listeners' attention under two conditions: ( 1) being read MSST books and ( 2) being read regular stories. Method A non-randomised control study was executed in which the intervention group read MSST books ( n = 45) and a comparison group ( n = 31) read regular books. Books were read 10 times during a 5-week period. The 1st, 5th and 10th storytelling sessions were recorded on video in both groups, and the percentage of attention directed to the book and/or stimuli and to the storyteller was scored by a trained and independent rater. Two repeated measure analyses (with the storytelling condition as a between-subject factor and the three measurements as factor) were performed to determine the difference between the groups in terms of attention directed to the book/stimuli (first analysis) and storyteller (second analysis). A further analysis established whether the level of attention changed between the reading sessions and whether there was an interaction effect between the repetition of the book and the storytelling condition. Results The attention directed to the book and/or the stimuli was significantly higher in the MSST group than in the comparison group. No significant difference between the two groups was found in the attention directed to the storyteller. For MSST stories, most attention was observed during the fifth reading session, while for regular stories, the fifth session gained least attentiveness from the listener. Conclusion The persons with profound intellectual and multiple disabilities paid more attention to the book and/or stimuli in the MSST condition compared with the regular story telling group. Being more attentive towards the book and stimuli might give persons with PIMD the opportunity to apprehend the story and to be included in storytelling culture. [ABSTRACT FROM AUTHOR]

Background Little is known about the role of behavioural executive functioning (EF) skills and level of intelligence (IQ) on math abilities in children with mild to borderline intellectual disabilities. Method Teachers of 63 children attending a school for special education (age: 10 to 13 years; IQ: 50 to 85) filled out a Behaviour Rating Inventory for Executive Function for each student. Furthermore, students took a standardised national composite math test and a specific math test on measurement and time problems. Information on level of intelligence was gathered through school records. Multiple regression analyses were performed to test direct, moderating and mediating effects of EF and IQ on math performance. Results Behavioural problems with working memory and flexibility had a direct negative effect on math outcome, while concurrently, level of intelligence had a positive effect. The effect of IQ on math skills was moderated by problems with inhibition: in children with a clinical level of inhibition problems, there was no effect of level of intelligence on math performance. Conclusions Findings suggest that in students with mild to borderline intellectual disabilities and math difficulties, it is important to address their strengths and weaknesses with respect to EF and adjust instruction and remedial intervention accordingly. [ABSTRACT FROM AUTHOR]

Background This study aimed to compare developmental courses of structural and pragmatic language skills in school-aged children with Williams syndrome (WS) and children with idiopathic intellectual disability (IID). Comparison of these language trajectories could highlight syndrome-specific developmental features. Method Twelve monolingual Dutch-speaking children with WS aged 5.10 to 13.3 years were assessed by means of standardised structural language tests measuring receptive and expressive vocabulary and sentence comprehension and production. Pragmatic language was evaluated by means of an expressive referential communication task and a retelling test. All of these language abilities were re-evaluated with the same measures after a period of 18 to 24 months. Performance was compared to 12 children with IID pairwise matched for chronological age (CA) and non-verbal fluid reasoning (G f) at Time 1. Non-verbal mental age (NVMA) was taken into account when delineating developmental trajectories. Results Children with WS outperformed children with IID on expressive vocabulary development. In contrast, sentence comprehension was significantly poorer than in children with IID at the second time point. Increased variability and rather poor performance on pragmatic language tasks were demonstrated in the WS group. Irrelevant and off-topic extraneous information transfer continued to be a syndrome-specific characteristic of children with WS. Conclusion The data provide new insights into diverging developmental trajectories across language domains. Expressive structural language skills tend to progress more rapidly than receptive language skills in children with WS causing more distinctive language profiles over time. Some children with WS seem to benefit from the growth in expressive structural language abilities to enhance their expressive pragmatic language skills, while in some others these abilities remain challenging. This study highlights the need for continued follow-up of language challenges in WS and for a dynamic and individualised interventional approach. [ABSTRACT FROM AUTHOR]

Background Relationships between support staff and clients with intellectual disability ( ID) are important for quality of care, especially when dealing with challenging behaviour. Building upon an interpersonal model, this study investigates the influence of client challenging behaviour, staff attitude and staff emotional intelligence on interactive behaviour of one of these relationship partners, being support staff. Method A total of 158 support staff members completed a questionnaire on staff interactive behaviour for 158 clients with ID and challenging behaviour, as well as two questionnaires on staff interpersonal attitude and emotional intelligence. Results Confronted with challenging behaviour as opposed to no challenging behaviour, staff reported less friendly, more assertive control and less support-seeking interpersonal behaviour. Also, staff used more proactive thinking and more self-reflection in dealing with challenging behaviour. Staff interpersonal attitude in general, mainly a harsh-dominant-resentful attitude, had a significant influence on most staff interactive behaviours towards an individual client with challenging behaviour. The influence of staff emotional intelligence, specifically intrapersonal abilities, on staff interactive behaviour towards an individual client with challenging behaviour was somewhat limited. Conclusions This research supports the necessity for training staff in general interpersonal attitudes towards clients as well as training in intrapersonal emotional intelligence, when confronted with challenging behaviour. Future research should focus more on the bidirectional dynamics of staff and client interactions. [ABSTRACT FROM AUTHOR]

Background Research has shown that care staff are not always able to offer quality care. Commercialisation and market forces within the care sector are often pointed to as an explanation for this shortcoming. In the present study, insight is gained into the possible connections between the commercialisation of care, on the one hand, and the shrinkage of possibilities and motivation to offer professional loving care, on the other hand, from the perspective of care staff working with people with mild intellectual disabilities. Method Semi-structured qualitative interviews were conducted with 28 care staff working with people with mild intellectual disabilities. Scientific research methods were combined with normative ethical reflection to examine the internal morals of the care staff. Results According to participating care staff, an affiliation with and recognition of the client form the basis for professional loving care. Care staff recognise that their profession is increasingly being built upon manageability and accountability, and this is making their jobs more difficult. Conclusion We conclude that care staff perceive the precedence given to the smooth running of production processes over investment in direct contact with clients to be a real threat to the quality of care. Concerns about declining motivation and loss of work satisfaction as a result of the commercialisation of care are only partly acknowledged by care staff. While shrinkage of space for professional loving care is recognised, one can hardly speak of declining motivation. [ABSTRACT FROM AUTHOR]

Background The complex disabilities of children with profound intellectual and multiple disabilities (PIMD) impede their presentation of peer directed behaviours. Interactions with typically developing peers have been observed to be more frequent than those with peers with PIMD. The typically developing peers with whom people with PIMD have frequent contact are their siblings. In this study, the amount of peer directed behaviours was compared between an interaction with a sibling and an interaction with a peer with PIMD. In addition, the attention directing strategies of the siblings, and how these affect the presentation of peer directed behaviours, were examined. Method Thirteen children and young people with PIMD, who had a typically developing sibling, were identified. For each of these thirteen children, a peer with PIMD and a sibling were selected. The child with PIMD was observed together with a peer with PIMD and together with a sibling. In both conditions, video observations were conducted. A coding scheme for the peer directed behaviours of the children and young people with PIMD and a coding scheme for the attention directing behaviours of the siblings were used. Descriptive, comparative and sequential analyses were conducted. Results Significantly, more peer directed behaviours of the children with PIMD were observed in the condition with the sibling (30.76%) compared with that of the condition with the peer with PIMD (13.73%). The siblings presented attention directing behaviours in 30% of the time; the most frequently used was nonverbal behaviour. When the siblings presented a combination of verbal and nonverbal attention directing behaviours, they elicited multiple peer directed behaviours in the children and young people with PIMD. Conclusions Persons with PIMD interact more with their siblings compared with their peers with PIMD. Interacting with siblings may probably be more motivating and encouraging. Presenting a combination of verbal and nonverbal behaviours attracts more attention of the persons with PIMD. [ABSTRACT FROM AUTHOR]

Background Parents with intellectual disabilities ( ID) are at risk for high levels of parenting stress. The present study evaluated resources, including parental adaptive functioning, financial resources and access to a support network, as moderators of the association between child behaviour problems and parenting stress. Method A total of 134 parents with ID and their children (ages 1-7 years) were recruited from 10 Dutch care organisations. Questionnaires were administered to the parents to obtain information on parenting stress in the parent and child domain, financial resources and their support network. Teachers and care workers reported on child behaviour problems and parental adaptive functioning, respectively. Results Parents experienced more stress with regard to their children than towards their own functioning and situation. Parenting stress was less in parents who were not experiencing financial hardship. Child behaviour problems were associated with high child-related parenting stress, not parent-related parenting stress. Large support networks decreased the association between child behaviour problems and child-related parenting stress. Financial resources did not significantly moderate the association. Conclusions Parenting stress among parents with ID is focused on problems with the child, especially when little social support is available. [ABSTRACT FROM AUTHOR]

Background Children with intellectual disability ( ID) are at risk for maladaptive development of social relatedness. Controversy exists whether Pervasive Developmental Disorder ( PDD) takes precedence over disordered attachment for describing maladaptive social behaviour. The aim of this study was to assess the prevalence of disordered attachment symptoms in children with ID referred for mental health diagnosis, and to study the potential diagnostic overlap between symptoms of disordered attachment and PDD symptoms. Method Children ( n = 102) in the age of 5-11 with IDs (borderline or mild; IQ 50-85) referred for psychiatric consultation were recruited. Parents were administered a screening interview for disturbances of attachment and teachers were administered a screening questionnaire for PDD. Results Behavioural symptoms of disordered attachment were reported for 42% of the children, with 16% showing symptoms of inhibited and 37% showing symptoms of disinhibited attachment disorder. In 11% both types of symptoms were noted. Attachment disorder symptoms were not significantly associated with gender, ethnic background or age. Positive screening for PDD occurred for 27%. Positive screening for PDD was not significantly associated with symptoms of attachment disorder. Conclusions Among children with ID referred for psychiatric consultation, Reactive Attachment Disorder ( RAD) and PDD symptoms were both highly prevalent. RAD and PDD symptoms appear as distinct, but sometimes comorbid, forms of aberrant social relatedness. [ABSTRACT FROM AUTHOR]

Background Antipsychotics are frequently and often long-term used for challenging behaviour in persons with intellectual disability ( ID), but the evidence base for this is meagre. As these agents may cause harmful side effects, discontinuation should be considered. Previous studies regarding discontinuation of long-term used antipsychotics mostly were uncontrolled and involved small numbers. The primary objective was to investigate the effects of controlled discontinuation of antipsychotics prescribed for challenging behaviour. Secondary objectives were to compare the results of two discontinuation time schedules, to compare groups of participants who had and had not achieved complete discontinuation, and to identify patient and medication characteristics that might predict the outcomes. Our hypothesis was that discontinuation of antipsychotics used for behavioural symptoms would not lead to worsening in behaviour. Methods This was a multi-centre parallel-group study comparing two discontinuation schedules of 14 and 28 weeks. Allocation to the two discontinuation schedules took place in a 1:1 ratio. Antipsychotics were tapered off every 2 or 4 weeks with approximately 12.5% of the initial dosage. Follow-up was 12 weeks after the scheduled complete discontinuation, that is, 26 or 40 weeks after the first dose reduction, respectively. Discontinuation was stopped in case of significant behavioural worsening. Participants were 98 residents with ID of three care providing organisations in the Netherlands, aged 15-66 year, who had used for more than 1 year one or more of the six most frequently prescribed antipsychotics for challenging behaviour. Main outcome measure was the total score of the Aberrant Behaviour Checklist ( ABC); also ABC sub-scales were used. Results Of 98 participants, 43 achieved complete discontinuation; at follow-up 7 had resumed use of antipsychotics. Mean ABC ratings improved significantly for those who achieved complete discontinuation (directly after discontinuation, P < 0.01 and at follow-up, P = 0.03), and at follow-up ( P = 0.03) for those who had not achieved complete discontinuation. Similar results were found with respect to most ABC sub-scales, including the 'irritability' sub-scale. There were no significant differences in improvement of ABC ratings between both discontinuation schedules. Higher ratings of extrapyramidal and autonomic symptoms at baseline were associated with less improvement of behavioural symptoms after discontinuation; higher baseline ABC rating predicted higher odds of incomplete discontinuation. Conclusions Discontinuation of antipsychotics prescribed for challenging behaviour in patients with ID is associated with improved behavioural functioning. There is no need to taper off in a time frame longer than 14 weeks. [ABSTRACT FROM AUTHOR]

Background Epidemiological information on age-related cardiovascular disease in people with intellectual disability (ID) is scarce and inconclusive. We compared prevalence and incidence of cerebrovascular accident and myocardial infarction over age 50 in a residential population with ID to that in a general practice population. Method A retrospective descriptive study was conducted, based on medical records of 510 persons with ID and 823 general practice patients, aged 50 years and over. Results Lifetime prevalences after age 50 were similar in both populations: 5.7% (95% CI 4.0-8.1%) in persons with ID and 4.4% (95% CI 3.1-6.0%) in the general population (Pearson chi-square 1.17, P = 0.279). Incidence per gender was similar between cohorts (men P = 0.86, women P = 0.36). There was no difference in incidence rates between the ID and control groups [relative risk = 1.5 (95% CI 0.9-2.4)]. Conclusion Prevalence and incidence of myocardial infarction and cerebrovascular accident in ageing persons with ID do not appear different from those in the general population. It has to be taken into account that underdiagnosis and selection bias towards a more disabled group may have lead to underestimation of age-related cardiovascular morbidity, and the higher age and underrepresentation of Down syndrome to overestimation. [ABSTRACT FROM AUTHOR]

Background The measurement of subjective well-being in people with severe and profound intellectual disabilities ( ID) is a difficult challenge. As they cannot self-report about their life satisfaction, because of severe communicative and cognitive limitations, behavioural observations of their emotions and moods are important in the measurement of their subjective well-being. It is, however, not known if observations of mood and emotion can be differentiated in people with severe and profound ID and if mood and emotions can give unique information about their affect. Therefore, the aim of this study is to examine the relationship between mood and emotions in people with severe and profound ID, using behavioural observations. As recommended in the literature, we investigated the frequency and intensity of the emotion separately. Method In a period of 3 weeks 27 participants with severe and profound ID were presented with four staff-selected negative and four staff-selected positive stimuli. During the presentation participants were videotaped using the observational method of Petry & Maes where each behaviour is coded on a 5-point scale, ranging from indicating a very negative emotion to indicating a very positive emotion. As a measure of mood, the staff completed the MIPQ in the beginning of the 3 weeks. Results We found a positive relationship between mood and respectively the total emotion score and the frequency of the emotion when the stimuli were positive but not when the stimuli were negative. There was no relationship between mood and the intensity of the emotion. Conclusions Our results indicate that mood and emotions can be distinguished from each other using behavioural observations. Both can give specific information about the affective life of people with severe or profound ID. Moreover, if further research could replicate the results of this study, an implication is that the direct support workers should be aware of a decline in the frequency of their clients reactions to positive stimuli as this could indicate a decline in their mood. [ABSTRACT FROM AUTHOR]