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The value of experts by experience within the field of intellectual disabilities is receiving greater recognition. This study explored the experiences of peer trainers regarding the impact of being a (1) trainee in a train the trainer course (n = 9), and (2) peer trainer in a Dutch training course (n = 6) aimed towards the self‐growth of people with intellectual disabilities. In addition to examining the experiences of peer trainers themselves, we investigated the perspective of coaches (n = 4) regarding the experiences of peer trainers. Peer trainers and coaches were questioned using individual and group interviews. Data were analysed using thematic analysis. Three themes were identified: (1) Growing and flourishing, (2) Performing a meaningful role for your peer and (3) Experiencing reciprocity and a sense of belonging. Working as a peer trainer was valuable and produced several benefits, ranging from increased self‐confidence to feelings of belonging and reciprocity. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities (ID) experience complex medical care needs and high levels of multimorbidity. In mainstream healthcare, these needs might remain undetected leading to unmanaged health problems and avoidable deaths. In the Netherlands, general practitioners (GPs) can refer to specialized ID physicians when ID‐specific expertise is required. Little is known about the characteristics of specialized medical care for people with ID. This study explores the characteristics of specialized medical care for people with ID, including the interplay between medical‐, psychological‐, and context‐related problems. A retrospective cohort study using medical records of patients with ID who had visited the outpatient ID practice in Nijmegen, the Netherlands. Medical records (n = 128) were analyzed using descriptive statistics, focusing on (1) reasons for initial consultation, (2) health‐related problems identified during initial consultation, and (3) disciplines involved following initial consultation. Analyses were performed separately for patients who were referred by a medical professional and patients who visited the practice for proactive health checks related to the etiological diagnosis. Patients often initially visit the outpatient ID practice for one type of complaint, most often psychological. Diverse, multiple, and interconnected problems were identified during specialized medical ID consultation. A range of specialist professionals (n = 25) were involved by the ID physician. The health‐related problems of people with ID seen at the outpatient ID practice are diverse and interconnected, and originate from an interplay between medical‐, psychological‐, and context‐related problems. This complexity is not mirrored in the reasons for referring to the outpatient ID practice. It is essential to go beyond medical views and assess health complaints in an integrated way, including the way ID can influence all levels (physical, mental, contextual) of the experienced health issue within the context of everyday life. [ABSTRACT FROM AUTHOR]

Background: Implementation issues often hinder reaching the potential of care technology to improve daily lives of people with intellectual disabilities. We investigated barriers to and facilitators of implementing different technology modalities (app/social robot/sensor/domotics) in long‐term care. Method: Care professionals (N = 83) from 12 Dutch disability care organisations completed a customised measurement instrument for determinants of innovations (MIDI) questionnaire. Results: Out of 27 determinants, 20 were identified as facilitators and 16 as barriers. We highlight common barriers: few colleagues who work with the technology; no (awareness of) formal ratification of technology use; no arrangements regarding turnover of staff using the technology; unsettling organisational changes; technological defects and limited IT preconditions. Conclusions: The results, which could be combined and compared across study sites, provide insight into which implementation determinants were already well addressed, and where there is ground to gain when implementing care technology in disability care organisations. [ABSTRACT FROM AUTHOR]

Background: In people with intellectual disabilities and mental disorders and/or challenging behaviours, rates of psychotropic drug prescription are high. In clinical treatments and evaluations, all stakeholders should be involved in a process of shared decision‐making (SDM). We aimed to investigate the perspectives of clients and their carers on clients' treatments with psychotropic drugs. Methods: We conducted a survey among adults with intellectual disabilities in a Dutch mental healthcare centre providing community, outpatient and inpatient care. Data were collected between January and June 2022. Questions focused on experiences with the provision of information, treatment involvement and SDM and participants' wishes in this regard. Findings: Respondents (57 clients and 21 carers) were largely satisfied with the overall care from their clinicians, and with how information on the pharmacological treatment was provided verbally, but written information was insufficient or not provided. Seventy per cent of clients and 60% of carers reported being involved in medication decision‐making. However, over 75% of participants desired greater involvement in SDM and over 60% in medication reviews. Conclusions: Service users and representatives were satisfied about the treatment and verbal information on their psychotropic drug use. The provision of written information, the SDM process and ongoing evaluation of psychotropic medication use could be improved. Accessible summaries: People with intellectual disabilities are often prescribed medication for mental or behavioural disorders.It is important that healthcare professionals listen to the views of people who are prescribed this medication.However, people may not be involved enough when decisions are made about their medication. They might not have enough information about their medication in a way that they understand. We wanted to know the views of clients with intellectual disability about their psychotropic medication use. We invited clients, their representatives and paid carers of a specialist mental healthcare centre to take part in a survey. Questions were about: (1)The relationship with their doctor.(2)If they were given the right information.(3)Involvement in medication evaluations.(4)Involvement in decisions regarding their medications. Seventy‐eight service users (57 clients and 21 carers) completed the questionnaire. Answers were that: (1)Service users were satisfied with the overall care from their doctor.(2)Service users were satisfied with the information about the prescription of medication that was provided verbally.They were less satisfied about written information that they received about their psychotropic medication.(3)Most service users reported being involved in medication decision‐making, but fewer than half were completely satisfied with this.(4)Most service users wanted to be more involved in decisions about their medication. Our findings mean that healthcare professionals need to do more to involve service users with learning disabilities in decisions about their medication. [ABSTRACT FROM AUTHOR]

In this article, we describe the healthcare system for people with intellectual disabilities (ID) in the Netherlands. The general background about healthcare for people with ID is the same worldwide: their health needs are often unrecognized and unmet. We delineate, from a historical perspective, the steps the Netherlands has taken to change the situation for them. The Netherlands crossed a milestone in 2016 when it ratified the UN Convention on the Rights of Persons with Disabilities. Despite challenges in establishing numbers, an estimated ID prevalence of 1.45% was determined. The Dutch healthcare system has different levels, is funded through six distinct laws, and is complicated. The Netherlands has a spectrum of disability care services that increasingly collaborate in shaping the care of people with ID. People with ID and their representatives are increasingly involved in the process of shaping this care. The general practitioner plays a central role in the Dutch healthcare system, serving as the gatekeeper to medical specialists. Furthermore, the Netherlands recognizes the role of a physician for people with ID as a medical specialization. The core competencies of the ID physician include knowledge of the etiology and consequences of ID and associated health problems. The ID physician also knows how to deal with diagnostic and therapeutic barriers. Key challenges facing ID healthcare in the Netherlands include difficulties supporting people with ID due to the increasing complexity of society, concerns about continuity of care at the transition age (18−/18+), inadequate reach of population screening programs for people with ID, and limited availability of (routine) data for research on the ID population. The Dutch government encourages research in the ID field to overcome these challenges by financially supporting academic collaboratives. Substantial progress has been made, but key challenges remain, showing that there is still great room for improvement. [ABSTRACT FROM AUTHOR]

Background: We investigated the prevalence of swallowing difficulties and associated factors in people with intellectual disability. Methods: We included people aged 50+ receiving care for people with intellectual disabilities. The Dysphagia Disorder Survey (DDS) was used to assess swallowing difficulties. We determined the agreement between the DDS and swallowing difficulties in medical records. We used logistic regression analyses to explore associated factors. Results: One thousand and fifty people were included. The prevalence of swallowing difficulties was 43.8%. Swallowing difficulties were not reported in the medical records of 83.3% of these cases. Frailty (odds ratio (OR) = 4.22, 95% CI = 2.05–8.71), mobility impairment (OR = 2.50, 95% CI = 1.01–6.19), and mealtime dependency (OR = 3.05, 95% CI = 1.10–8.47) were independently associated with swallowing difficulties. Conclusion: Swallowing difficulties are prevalent in older people with intellectual disability but may be under‐recognised. Frailty may be a good indicator for population‐based screening for swallowing difficulties. [ABSTRACT FROM AUTHOR]

Background: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. Methods: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54–89 years, with mild to moderate intellectual disabilities (IQ <70) and low social–emotional development levels. We combined participant observations and qualitative interviews. Results: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. Conclusion: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited. [ABSTRACT FROM AUTHOR]

Background: Concerns have been raised about access to cancer screening and the timely receipt of cancer care for people with an intellectual disability (ID). However, knowledge about cancer mortality as a potential consequence of these disparities is still limited. This study, therefore, compared cancer‐related mortality patterns between people with and without ID. Methods: A historical cohort study (2015‐2019) linked the Dutch adult population (approximately 12 million people with an ID prevalence of 1.45%) and mortality registries. Cancer‐related mortality was identified by the underlying cause of death (according to the chapter on neoplasms in the International Classification of Diseases, Tenth Revision). Observed mortality and calculated age‐ and sex‐standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were reported. Results: There were 11,102 deaths in the ID population (21.7% cancer‐related; n = 2408) and 730,405 deaths in the general population (31.2%; n = 228,120) available for analysis. Cancer was noted as the cause of death more often among people with ID in comparison with the general population (SMR, 1.48; 95% CI, 1.42‐1.54), particularly in the young age groups. High‐mortality cancers included cancers within the national screening program (SMRs, 1.43‐1.94), digestive cancers (SMRs, 1.24‐2.56), bladder cancer (SMR, 2.07; 95% CI, 1.61‐2.54), and cancers of unknown primary (SMR, 2.48; 95% CI, 2.06‐2.89). Conclusions: Cancer was reported as the cause of death approximately 1.5 times more often in people with ID compared with the general population. This mortality disparity may indicate adverse effects from inequalities in screening and cancer care experienced by people with ID. Lay Summary: People with an intellectual disability (ID) may find it challenging to participate in cancer screening or to receive timely cancer care.To understand potential consequences in terms of mortality, this study compared cancer‐related mortality between people with and without ID in the Netherlands.Cancer was reported as the cause of death approximately 1.5 times more often among people with ID than others.Because large differences were found that were related to screening cancers and cancers for which the primary tumor was unknown, this study's results raise concerns about equality in screening practices and cancer care for people with ID. Cancer is reported as the cause of death approximately 1.5 times more often in people with an intellectual disability compared with those without one. Differences are particularly noted for deaths related to cancers within the national screening program and cancers of unknown primary. [ABSTRACT FROM AUTHOR]

Abstract: Policies limit the use of coercive measures as a measure of last resort to protect people from danger. Success of policies can only be determined by registering the use of coercive measures. The reliability of 57 standardized coercive measures was tested. In addition, implementation was investigated of improved registration in a residential care setting. This mixed methods study within a residential care organization for people with intellectual disabilities in the Netherlands included 55 living units and 269 residents. Reliability of 57 standardized coercive measures was tested against other informants (colleague staff, trained outside observer) and results were validated by a panel of stakeholders. Second, the implementation of a mandatory routine registration system was investigated by comparing registration of coercive measures to personal files of 30 residents. Registration of coercive measures yielded reliable data for at least 25 out of 57 types of coercive measures. The second part of the study showed widely varying explanations of unreliable data by stakeholders, including knowledge and awareness of coercive measures of support staff and the influence of contextual factors on the encoding of coercive measures. After implementation, 46% of the coercive measures were registered in the registration system. Comprehensive registration of coercive measures by staff neither appeared feasible nor yielded reliable data. Clearly, multidisciplinary discussion among support staff and professionals is needed to decide whether care practices are restrictive or not. Further research should focus on how these considerations can lead to a reliable and meaningful registration. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to explore the experiences of psychologists working with people with intellectual disabilities during the initial stage of the COVID‐19 lockdown in the Netherlands. Method: Five psychologists, who were affiliated with three intellectual disability services, participated in this descriptive qualitative study. Overall, they recorded 22 audio messages during the period under examination, which were analysed using thematic analysis. Results: Three themes were identified: (a) Working from home; (b) Adapting to the new reality; and (c) Advising and coaching support staff. Conclusions: This study provides critical insights into the experiences of psychologists working with people with intellectual disabilities during the initial stage of the COVID‐19 lockdown. These insights can help policymakers and practitioners to prepare for either a potential second wave of COVID‐19 or a future pandemic. [ABSTRACT FROM AUTHOR]

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: Earlier studies show that to gain more understanding of the concept of social inclusion, the views and experiences of people with intellectual disabilities are needed. The aim of this study was to investigate their perspective on neighbourhood social inclusion from an ecological point of view. Method: We carried out a photovoice study with 18 people with intellectual disabilities in three neighbourhoods in the Netherlands. Participants took photographs in their neighbourhood they considered relevant, and these photographs were discussed during an interview. Results: Six themes emerged from qualitative analysis: attractiveness of the neighbourhood, social contacts in the neighbourhood, activities in the neighbourhood, social roles in the neighbourhood, independence and public familiarity. Conclusions: As regards neighbourhood social inclusion, participants were often focused on small and informal activities and situations. Public familiarity proved very important. Framing the concept of neighbourhood social inclusion within an ecological approach may help to better understand processes of social inclusion. [ABSTRACT FROM AUTHOR]

Introduction: Experience‐based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long‐term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods: Through a participatory research approach, EBCD was adjusted to long‐term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results: The participatory research resulted in the development of 'Ask us!'—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long‐term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo‐voice and involving experts‐by‐experiences as co‐ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo‐elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts‐by‐experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. Conclusion: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long‐term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions. [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: The present study aimed to explore the experiences and needs of direct support staff during the initial stage of the COVID‐19 lockdown in the Netherlands. Method: Overall, eleven direct support staff were recruited from five intellectual disability services to participate in this descriptive qualitative study. They recorded 34 audio messages during the considered period. Thematic analysis was used to analyse these audio recordings. Results: Four themes emerged: (1) Emotional impact, which pertained to various emotions they experienced in their work; (2) Cognitive impact, which referred to challenges and changes they had undergone in their work; (3) Practical impact, which centred on the practical impact of the pandemic on their work; and (4) Professional impact, which concerned their experiences with other professionals. Conclusions: This study provides valuable insights into the experiences and needs of direct support staff during the COVID‐19 pandemic, which, in turn, can help inform practice in preparation for a second wave of COVID‐19 or another future pandemic. [ABSTRACT FROM AUTHOR]

Background: Person‐centred care and co‐creation of care (productive interactions between clients and professionals) are expected to lead to better outcomes for clients. Professionals play a prominent role in the care of people with intellectual disabilities at residential care facilities. Thus, person‐centred care and co‐creation of care may be argued to lead to better outcomes for professionals as well. This study aimed to identify relationships of person‐centred care and co‐creation of care with the well‐being and job satisfaction of professionals working with people with intellectual disabilities (PWID). Methods: A cross‐sectional survey was conducted in 2015 among professionals working at a disability care organisation in the Netherlands. All 1146 professionals involved in the care of people with intellectual disabilities who required 24‐hours care were invited to participate. The response rate was 41% (n = 466). Results: Most respondents (87%) were female, and the mean age was 42.8 ± 11.5 years (22–65). The majority of respondents (70%) worked ≥22 hours per week and had worked for the organisation for ≥5 years (88%). Most of the respondents (76.8%) were direct care workers either in residential homes (59.3%) or in day activities (17.5%). After controlling for background variables, person‐centred care and co‐creation of care were associated positively with job satisfaction and well‐being of professionals. Conclusions: The provision of person‐centred care and co‐creation of care may lead to better well‐being and job satisfaction among professionals working with PWID. This finding is important, as such professionals often experience significant levels of work stress and burnout. [ABSTRACT FROM AUTHOR]

Background: We examined the influence of the organizational environment on challenging behaviour in people with intellectual disabilities to increase understanding of the quality of support services for people with intellectual disabilities. Method: Twenty‐one professionals and managers from four specialized Dutch disability service organizations were interviewed. Data were analysed with a grounded theory approach, using Bronfenbrenner's ecological theory as a sensitizing frame. Results: The organizational environment (i.e., vision, values, sufficient resources) is related via the support service (i.e., providing stability, constant awareness) to residents' challenging behaviour and is also linked directly to challenging behaviour (e.g., living environment, values). Organizations are restricted by national regulations, negative media attention and changing societal values, which negatively influence quality of support. Conclusions: The creation of a supportive organizational environment for staff, who in turn can provide quality support services to residents with demanding care needs, was found to prevent challenging behaviour in people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: For a healthy lifestyle, people with moderate, severe, and profound intellectual disabilities living in residential facilities and/or participating in day activity centers are dependent on their direct support professionals. However, it is unclear what knowledge and skills these direct support professionals require to support these individuals in living a healthy lifestyle. Therefore, the aim of this study was to identify the needs of direct support professionals for supporting these people with moderate to profound intellectual disabilities to achieve and maintain a healthy lifestyle. Method: Direct support professionals (n = 28) were interviewed with the use of a semi‐structured protocol based on the theoretical domains framework. The interviews were analyzed with a theory‐driven content analysis. Results: The most frequently mentioned needs referred to the following domains of the theoretical domains framework: environmental context and resources (n = 27), social/professional role and identity (n = 25), social influence (n = 25), skills (n = 24), and knowledge (n = 23). Conclusion: To support people with moderate to profound intellectual disabilities in leading a healthy lifestyle, direct support professionals (DSPs) primarily needed support related to the domain environmental context and resources. Within this domain available time, dealing with different seasons, and a healthy lifestyle policy in the organization need attention. Development of interventions targeting these DSPs needs is required. [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: The ageing of people with intellectual disabilities, involving consequences like dementia, creates a need for methods to support care staff. One promising method is Dementia Care Mapping (DCM). This study examined the effect of DCM on job satisfaction and care skills of ID‐care staff. Methods: We performed a quasi‐experimental study in 23 group homes for older people with intellectual disabilities in the Netherlands. Among staff, we assessed job satisfaction and care skills as primary outcomes and work experience measures as secondary outcomes (N = 227). Results: Dementia Care Mapping achieved no significantly better effect than care as usual (CAU) for primary outcomes on job satisfaction (MWSS‐HC) and working skills (P‐CAT). Effect sizes varied from −0.18 to −0.66. We also found no differences for any of the secondary outcomes. Conclusion: Dementia Care Mapping does not increase job satisfaction and care skills of staff caring for older people with intellectual disabilities. This result differs from previous findings and deserves further study. [ABSTRACT FROM AUTHOR]

Paying attention to job satisfaction of people with intellectual disabilities, in either integrated or sheltered employment, is important, to increase individual as well as organizational functioning and well-being. Nevertheless, little is known about job satisfaction of employees with intellectual disabilities and the factors increasing or hindering this. The aim of this study was to explore existing research evidence regarding job satisfaction of people with intellectual disabilities in integrated and sheltered employment settings, and its associated factors. A systematic and comprehensive literature search revealed 13 relevant studies that were examined. Results indicated that people with intellectual disabilities in integrated employment and sheltered employment generally report satisfaction with their jobs. Satisfaction levels appear to be higher in integrated employment. Furthermore it was found that characteristics of the employee and of the employment setting were associated with job satisfaction, as well as social relations, support, and the fit between the employees' needs and the work environment. Advancements can be made with respect to policy and practice of employment of people with intellectual disabilities. To improve their job satisfaction we suggest an integrative approach, taking into account that job satisfaction is an interplay between personal, situational, and social-cognitive characteristics. This is reflected in current theoretical frameworks in general job satisfaction literature. Future research on job satisfaction of people with intellectual disabilities could profit from developments in general job satisfaction literature and in addition take account of factors particularly relevant to people with intellectual disabilities, the possible impact of comparison processes, and the development of sound measurement methods. Finally, we advocate for greater insight and involvement of people with intellectual disabilities in career related matters, to enhance their self-determination and motivation and increase satisfaction. [ABSTRACT FROM AUTHOR]

Background: Challenging behaviour is a common problem among people with ID and in services for people with ID. This paper aims to provide an overview of the views and preferences of people with ID on challenging behaviour. Method: Semi‐structured interviews were conducted with thirteen adults with mild to moderate ID and seven proxies (family or close associates of adults with ID who were unable to communicate and/or with severe or profound ID) in the Netherlands. The interviews were audio‐recorded, transcribed and analysed thematically. Results: People with ID and (a history of) challenging behaviour have clear views and preferences on factors related to challenging behaviour, assessments, non‐pharmacological and pharmacological interventions and health professionals' approach. Conclusions: The identified views and preferences of people with ID are not always in accordance with current procedures and treatments for challenging behaviour and should be included in future care processes and research. [ABSTRACT FROM AUTHOR]

Background: Professional support for people with intellectual disabilities is increasingly provided remotely. This study explores what support staff of the Dutch remote support service DigiContact experience as distinctive aspects of their job as a remote support professional. Method: Semi‐structured interviews were held with 10 DigiContact support workers. The transcripts were analysed through a qualitative content analysis process. Results: Six themes were identified that reflect distinct aspects of the participants' work within the DigiContact remote support context: being encouraged to adopt a solution‐oriented coaching support style; being limited in one's support options; facing considerable diversity; providing support as one team; dealing with unpredictability; and navigating the dynamic within work shifts. Conclusions: The way support is organised and delivered can have substantial implications for support professionals. Working at a service like DigiContact seems to call for specific skills, knowledge, affinities and experience, and for appropriate support and facilitation from organisations. [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]

The sharing and application of knowledge in intellectual disabilities care are vital and challenging. Therefore, organizations providing care and support for people with intellectual disabilities use strategies to stimulate these processes. To optimize these strategies, we investigated the contextual factors that influence their execution. We conducted individual, in‐depth, semi‐structured interviews with 11 CEOs of organizations providing care for people with intellectual disabilities in the Netherlands. A thematic data analysis was conducted in which a deductive approach was followed by a bottom‐up clustering. We thus identified factors related to both the internal and the external context. The internal context involves persons within the organization and the organizational structures. The external context involves the organization's socio‐political environment and collaborative partnerships. We concluded that the execution of strategies to improve the sharing and application of knowledge is influenced by contextual factors which appear to be interconnected. These contextual factors point to the key role played by care professionals. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. Materials and Methods A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. Results The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Conclusions Working with the 'Diagnostic Guideline for Anxiety and CB' leads to improved diagnoses and treatment plans compared with care as usual. [ABSTRACT FROM AUTHOR]

Direct support professionals (DSPs) play an important role in the process of integration of people with intellectual disabilities. Nevertheless, little is currently known about what determines the level of effort exerted by DSPs to enable the social integration of their clients. The aim of this study was to investigate three different psychological determinants (attitudes, social norms, and meta-evaluations) of the behavioral intentions of DSPs to facilitate the social integration of their clients. Semistructured interviews were conducted with 28 DSPs working in a setting of 'reversed integration,' as well as 25 family members and 25 neighbors. The DSPs' perceived social norms and meta-evaluations of neighbors and family members were compared with their actual social norms and evaluations. The authors found that half of the DSPs interviewed were positive about integration, whereas the other half were negative or neutral. Concerning social norms, the DSPs expect neighbors to have neutral attitudes toward the integration of people with intellectual disabilities, while in reality the neighbors are very positive. More than half of the DSPs were uncertain about the family members' opinions about integration. Asking the family members themselves, there was some variation in their attitudes toward integration. Regarding the meta-evaluation, DSPs had a realistic idea about how their work would be evaluated by family members and neighbors; both groups were positive. It is evident that this group of DSPs had an overly negative idea of neighbors' opinions about integration and contact with people with intellectual disabilities. Creating awareness of a supportive social norm in the neighborhood could help and encourage DSPs to strive for social contact between their clients and neighbors. [ABSTRACT FROM AUTHOR]

Background: Physical integration is believed to be a precondition for social integration. One might expect that in so-called reversed integration, where people without intellectual disabilities (ID) actively choose to live next to people with ID, conditions for physical integration are more optimal, and social integration is enhanced. If this hypothesized benefit of reversed integration settings indeed holds, however, is yet unknown. Specific aims: The aim of the present study is to examine barriers for social integration of people with ID. In this context, the present article focuses on the role of safety and safety concerns. Method: A semi structured interview was conducted with 28 direct support professionals (DSPs), 25 family members, and 25 neighbors, aimed at their attitude toward social integration in a reversed integration neighborhood. Several topics were dealt with, like the neighborhood and contact between people with ID and neighbors. There were no explicit questions about safety in the interview. Findings: The topic of safety was spontaneously mentioned 90 times by 26 DSPs, 15 times by 9 neighbors, and 36 times by 18 family members. Three main themes were found in the total group of statements touching upon the issue of safety: environmental aspects, client characteristics, and working conditions. The most often mentioned subthemes were the openness of the neighborhood and the traffic. Discussion: In reversed integration, safety is still a highly relevant topic and of great concern for the DSPs and the family members. DSPs are more concerned with controlling risks and keeping everybody safe than looking at the opportunities the new environment offers, like enhancing social integration. [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: Epilepsy prevalence is over 20% for those with ID. It is difficult to diagnose and treat and more likely to be treatment resistant. The evidence informing prescribing is sparse, particularly for new drugs such as perampanel (PMP). Aims of the Study: This study seeks to strengthen the research evidence regarding PMP for people with ID by pooling information from two isolated and separately conducted studies: the UK‐based Epilepsy Database Register (Ep‐ID) and the data from the Kempenhaeghe clinic in the Netherlands. Methods: A single data set of comparable data was created and analysed under agreement and supervision of a UK statistician. Results: Seizure reduction within twelve months was evident in 62% of Dutch and 47% of UK patients. Retention rates were higher for those in the UK (P =.01) and for patients with moderate to profound ID, whilst side effects were more prominent in the Dutch cohort. Conclusions: Comparable rates of seizure reduction are in line with estimates for non‐ID patients, adding to the evidence suggesting that PMP has a similar impact on those with ID. Taking a European perspective and sharing data across centres can help strengthen the evidence for prescribing antiepileptic drugs in the ID population. [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: Professional caregivers are important in the daily support of lifestyle change for adults with mild intellectual disabilities; however, little is known about which behaviour change techniques (BCTs) are actually used. This study aims to gain insight in their use for lifestyle behaviour change using video observations. Methods: Professional caregivers (N = 14) were observed in daily work supporting adults with mild intellectual disabilities. Videos were analysed using the Coventry Aberdeen London Refined (CALO‐RE‐NL) taxonomy and BCTs utilised were coded. Results: Twenty one out of 40 BCTs were used by professional caregivers. The BCTs 'Information about others' approval', 'Identification as role model', 'Rewards on successful behaviour', 'Review behavioural goals' and 'Instructions on how to perform the behaviour' were most employed. Conclusion: Professional caregivers used BCTs to support healthier lifestyle behaviour of adults with mild intellectual disabilities. However, most promising of them as defined previous by professionals were rarely used by professional caregivers. [ABSTRACT FROM AUTHOR]

Background: This study aimed to examine the associations between individual staff and staff team characteristics and quality of life of individuals with intellectual disabilities and challenging behaviours. Method: With multilevel analyses, we examined educational level, experience, attitudes and behaviours of 240 staff members, in relation to their perception of quality of life of 152 individuals with intellectual disabilities and challenging behaviours they cared for. Results: Two individual staff characteristics were related to better quality of life: higher educational and self‐reflection levels. Of the team characteristics, higher educational level, higher self‐efficacy and more friendly behaviour were associated with better quality of life. Unexpectedly, higher staff‐individual ratio was related to lower quality of life. Conclusions: Both individual staff and staff team characteristics are associated with quality of life, indicating the need to take staff team characteristics into account when examining quality of life. [ABSTRACT FROM AUTHOR]

Background People with intellectual disabilities face barriers that affect their sexual health. Sex education programmes have been developed by professionals working in the field of intellectual disabilities with the aim to overcome these barriers. The aim of this study was to explore the development of these programmes. Methods Sex education programmes geared to people with intellectual disabilities were examined in the context of the Intervention Mapping protocol. Data were obtained via interviews with the programme developers. Results All programmes lack specific programme outcomes, do not have a theoretical basis, did not involve members of relevant groups in the development process and lack systematic evaluation. Conclusions Based on our findings and the literature, we conclude that these programmes are unlikely to be effective. Future programmes should be developed using a more systematic and theory- and evidence-based approach. [ABSTRACT FROM AUTHOR]

In the Netherlands, physical/mechanical restraints in the care provided to people with intellectual disabilities are still in use, with the case of 'Brandon' being a recent and illustrative example. The public debate that this case triggered raised questions concerning the policy proposal in the Care and Coercion Bill ( Wetsvoorstel Zorg en dwang) and efforts to reduce the use of restraints. Thus, the authors undertook an inventory of government legislation and institutional regulations in order to obtain an insight into practices applying in other countries and to provide recommendations for developing policy on reducing the use of restraints in the care of people with intellectual disabilities in the Netherlands. Using a literature study, they observed that although the use of restraints in the care for people with intellectual disabilities is internationally regulated by the criterion of ultimum remedium, policy is clearly not always in line with practice. Various studies of best practices have identified some common elements in seeking to limit restrictive interventions, including strong leadership in care facilities based on national policy, trained staff, a strict monitoring system, and changes in attitudes on the use of restraints, with restraints being identified as treatment failure. The authors noted that the use of restraints, and efforts to reduce their use, is a dilemma internationally. In the Netherlands, the public debate on the use of restraints has not so far led to any significant political action. While decisions on a new legal framework still have to be made, it would be advisable to include a section on jurisdiction in the policy framework and to ratify the UN Convention on the Rights of Persons with Disabilities, which has many implications for both policy and practice. In the meantime, care facilities can start working on implementation plans, including the best practices described in this study. [ABSTRACT FROM AUTHOR]

The prevalence of underweight status is relatively high in persons with intellectual disabilities. However, it is not clear whether this is due to malnourishment. The authors sought to examine the awareness and knowledge of physicians, dieticians, and direct care staff regarding malnutrition in people with intellectual disabilities. They also sought to obtain information about their experience with problems and possible solutions. Semi-structured interviews were held with a cross-section of physicians, dieticians, and direct care staff working with people with intellectual disabilities at six different service providers in the Netherlands. Dieticians and physicians noted that malnutrition is prevalent in persons with intellectual disabilities that they see, but they were uncertain about why this is the case. On the contrary, direct care staff were convinced that malnutrition was not present. Screening of high-risk persons for the presence of malnutrition is advised. In addition, the authors recommended education of direct care staff about healthy nutrition and weight and the development of a screening instrument for malnutrition specifically for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: At the start of the COVID‐19 pandemic, some parents in the Netherlands decided to bring their offspring with intellectual disabilities, who normally live in residential care, home. The present study explored why the mothers decided to bring their offspring home. Method: Interviews were carried out with seven mothers of adults with intellectual disabilities. An interpretative phenomenological approach was used to establish in‐depth accounts of the mothers' experiences. Results: The analysis yielded three overarching themes: (a) Families are indispensable; (b) the complex role of being a mother of a child with intellectual disabilities; and (c) Who is looking out for our offspring during COVID‐19? Conclusions: The mothers experienced a strong sense of wanting to do what was best for their offspring with intellectual disabilities during COVID‐19. The study provides insight into why mothers remain involved in the care for their offspring and the complexity of navigating lifelong care responsibilities. [ABSTRACT FROM AUTHOR]

Background: Girls with a mild intellectual disability generally receive less sexuality education than their non‐disabled peers, while their needs for sexual knowledge are possibly greater. This study aimed to evaluate the effect and process of a new sexuality education programme (Girls' Talk+), focused on sexual health among girls with a mild intellectual disability in the Netherlands. Methods: A mixed methods approach was applied, using participant questionnaires (n = 249), logs written by trainers (n = 17) and interviews with trainers (n = 10). Descriptive statistics and linear regression models were used to analyse the quantitative data. Several coding phases were used to analyse the interviews. Results and conclusions: This study provides some indication that Girls' Talk+ has positive results on improving knowledge, attitude, and self‐efficacy in relation to sexual health as well as trainer and participant satisfaction with the programme. [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: People with intellectual disabilities have worse health outcomes compared to their peers without. However, regarding oral health parameters, recent systematic reviews reported conflicting evidence. The aim was to assess whether adolescents with MBID differ from their peers in oral health and oral health behaviour. Methods: Ninety seven adolescents with MBID participated in this comparative study. Outcomes were compared to data of 17‐year‐old Dutch adolescents (n = 581) from a national epidemiological study on oral health and oral health behaviour. Results: Adolescents with MBID showed worse oral health outcomes and poorer oral hygiene than their peers from the general population. Furthermore, they visit the dentist less regularly, brush less frequently, eat main‐dishes less frequently and have higher levels of dental anxiety. Conclusion: Adolescents with MBID have poorer oral health and show worse oral health‐promoting behaviours than their peers in the general population. Targeted interventions to reach this vulnerable group are necessary. [ABSTRACT FROM AUTHOR]

While sleep problems in people with intellectual disabilities (ID) living in residential settings are very common, scant attention is paid to them. This study examined how to improve the knowledge and understanding of sleep quality and sleep problems in people with ID among care staff at a residential facility and, consequently, to reduce extrinsic sleep problems. Using a variation on a crossover design with two groups, sleep efficiency and sleep latency in people with ID (not suspected of having sleep problems) were measured four times. One group (Group A) of staff was offered a lecture after the first measurement and a workshop after the second one. A second group (Group B) of staff was only offered a lecture, between the second and third measurements. In both groups, sleep efficiency rose significantly. The time spent in bed by residents overseen by Group A was reduced significantly, and there was a significant reduction of daily napping time among group A's residents. In Group B, there was a significant increase of daily napping time and in the number of naps. The application of educational techniques, such as lectures and workshops, provided to staff can lead to significant improvements in residents' sleep efficiency. [ABSTRACT FROM AUTHOR]

Care and service trajectories are identifiable routes through service systems that consist of all steps that people with intellectual disabilities (ID) and their families have to take to realize the care and services they need. Trajectories are especially prominent during the transitions from children's services to adult services. Within a service system in Noord-Brabant (in the Netherlands), the authors examined the course of such trajectories and their main bottlenecks and sought to identify their quality determinants. The first research question was addressed by an exercise in document analysis and the holding of semistructured interviews with key informants within the healthcare sector specialized for serving people with ID. A second research question was addressed by means of a literature review on integrated care. The authors observe that trajectories generally follow a “model route” consisting of five phases but may vary according to age category, degree of disability, and life domain. With respect to “bottlenecks,” the authors noted that a lack of suitable supply and long waiting lists are good examples. They found that the literature on integrated care revealed that continuity, accessibility, availability, and flexibility of care and services, together with the seamlessness of transitions, are all important quality determinants for people with ID when judging their service trajectories. Bottlenecks and quality determinants of trajectories are strongly interrelated. The authors concluded that the literature and the key informants agree as to which factors are most important in realizing high-quality trajectories for individual clients. They recommend asking which criteria people with ID and their families value most when judging the quality of trajectories. [ABSTRACT FROM AUTHOR]

In the Netherlands, a public policy shift has led to a movement of people with intellectual disabilities (ID) from residential congregate care facilities to normative housing in their communities. Along with these physical transfers, medical care has also been transferred from specialty intellectual disability physicians (IDPs) associated with the residential facilities to general practitioners (GPs) native to the community. To facilitate these changes, the authors created a set of guidelines for the transfer of ID medical care. In developing these guidelines, the authors queried: (1) What elements have to be included in the draft guidelines? (2) What are the barriers to using the draft guidelines in practice and how can these barriers be overcome? and (3) What elements have to be included in the final form of the guidelines? Data for the draft guidelines were drawn from information gathered during interviews and discussions with physicians and allied workers. The guidelines call for a feasible working agreement between IDPs and GPs regarding handing over patient files containing problem lists and histories and arrangements of out-of-hours house calls, practice visits, medication delivery, and paramedical treatments. Inherent barriers to the implementation of the guidelines might be communication difficulties among persons involved in the transfer of care and governmental rules that fail to overcome organizational barriers. [ABSTRACT FROM AUTHOR]

Individuals with mild intellectual disabilities (MID) or borderline intellectual functioning (BIF) and mental health problems or challenging behavior are difficult to reach by mainstream healthcare facilities and support organizations and frequently avoid the care they need. To improve the care for this client group in the Netherlands, the (Flexible) Assertive Community Treatment (ACT) model—originally developed for people with severe mental illness—was adapted and implemented by five organizations specialized in the care for people with MID/BIF and mental health problems or challenging behavior. After an introduction of the original ACT model and a description of the international state of the art of ACT for people with (M)ID/BIF, this paper describes the (Flexible) ACT‐MID/BIF model as developed and implemented in the Netherlands. Professionals' and clients' experiences with this new type of care are reported as well. Implications for clinical practice, policy and research are discussed. [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]

The active involvement of people with intellectual disabilities (ID) in research is expected to lead to relevant research outcomes, increased quality of life, improved healthcare, reduction of health inequities, and empowerment of people with ID. Despite the developments in inclusive health research, a lack of transparency remains with regard to how the partnership between researchers with and without ID is shaped and structural study of inclusive health research is needed. This study aims to gain insight into the experiences of inclusive research teams in practice regarding (1) reasons, (2) attributes, and (3) outcomes of inclusive health research. A structural study of four inclusive research teams was conducted in Ireland, Northern Ireland, and the Netherlands using case study methodology. Data were triangulated through documents and individual and group interviews. Data were analyzed and synthesized using domain and taxonomic analysis. Reasons for conducting inclusive research ranged from personal to practical. Having an inclusive ethos was found to be crucial in conducting inclusive research meaningfully in practice. Based on data analysis, attributes of inclusive research consist of three interrelated themes, one focusing on methodological aspects and two focusing on active involvement and partnerships. Outcomes of inclusive research across cases were found within three categories relating to research practice, inclusion itself, and interpersonal outcomes. Empowerment was found to be important. Although empowerment is not new to inclusive research, its positive effect on research quality appears to be new and needs further research. This study's results and the literature indicate that developing inclusive research policy and practice requires a realistic perspective, with a balance between maximum collaboration and using researchers' strengths. The results of this study are transferrable to inclusive research using similar methods with other groups. When the aim is to share learning in groups, a shared language is needed. [ABSTRACT FROM AUTHOR]

In 2018, the authors published their analysis of nine online case reports by the Euthanasia Review Committee in the Netherlands, involving people with intellectual disability and/or autism spectrum disorder who were given euthanasia. In this commentary, they reflect further on the challenges of assessing "unbearable suffering without prospect of improvement," which is one of the Dutch legal due care criteria. Two more recent case reports are presented in detail, where doctors struggled to assess and sometimes came to divergent conclusions. In both cases, limitations resulting from the intellectual disability and autism spectrum disorder were seen by physicians as causes of unbearable suffering, leading them to agreeing to the patient's euthanasia request. The authors discuss their concern about the implications of accepting the effects of lifelong disability as reasons for euthanasia, not only for individuals but for society as a whole. [ABSTRACT FROM AUTHOR]