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Background: Relationships and sexuality education (RSE) programmes are widely taught in schools, however for children and young people with intellectual disabilities, these programmes appear to be limited regarding information on relationships, informed choices and decision making. The purpose of this study was to seek the views and understanding of children and young people with intellectual disabilities, and those involved in their care and education, to identify best practice and approaches to the delivery on relationships and sexuality education. Methods: This study used a qualitative design with 37 pupils from five special schools from across the United Kingdom (UK) participating. In-depth semi-structured interviews were held online, or in person. All interviews were recorded and transcribed verbatim. Transcripts were anonymised, assigned a pseudonym and subjected to inductive thematic analysis. Findings: Four themes emerged from the data: (i) enthusiasm and inquisitiveness to acquire knowledge; (ii) dynamics of positive friendships; (iii) experiences and understanding of supportive relationships and sexuality; and (iv) valuing the exchange of knowledge and information. The findings highlight that children and young people with intellectual disabilities want education, support and information on matters relating to their relationships and sexuality. Conclusions: This is the largest study to date providing a voice to children and young people with intellectual disabilities regarding their relationships and sexuality. While special schools provide relationships and sexuality education, there is a requirement for a programme and resources specific to the needs of pupils with intellectual disabilities to be developed and evaluated. Such education should continue beyond school and be embedded in adult services. [ABSTRACT FROM AUTHOR]

Background: There is a critical need for the development of dependable and valid anxiety assessment tools suitable for people with moderate to severe intellectual disabilities, particularly those who speak few or no words. Distinguishing anxiety from distress caused by physical discomfort (pain) or characteristics associated with autism, prevalent in this population, necessitates specialised assessment tools. This study (a) developed a parent-report anxiety questionnaire tailored for individuals with severe to moderate intellectual disabilities, potentially with a co-diagnosis of autism, and (b) evaluated the psychometric attributes of this novel measure., Methods: A comprehensive approach involving literature reviews, inspection of existing tools, and interviews with clinicians and parents guided the creation of the Clinical Anxiety Scale for People with Intellectual Disabilities. The tool was completed by parents or caregivers (N = 311) reporting on individuals aged 4 or older with intellectual disabilities., Results: Exploratory factor analysis indicated a four-factor structure encompassing anxiety, pain, low energy/withdrawal, and consolability. The anxiety factor explained the most variance in scores (26.3%). The anxiety, pain, low energy/withdrawal subscales demonstrated robust internal consistency (α = 0.81-0.92), and convergent, divergent, and discriminant validity. Robustness of these subscales was further evidenced by test-retest reliability (ICC = 0.79-0.88) and inter-rater reliability (ICC = 0.64-0.71). Subgroup analyses consistently demonstrated strong psychometric properties among individuals diagnosed with non-syndromic autism (N = 98), children (N = 135), adults (N = 175), and across diverse communication abilities within the sample. Moreover, individuals diagnosed with both autism and anxiety exhibited significantly higher scores on the anxiety subscale compared to those without an anxiety diagnosis, while showing no difference in autism characteristic scores., Conclusions: The findings indicate that the Clinical Anxiety Scale for People with Intellectual Disabilities is a promising measure for use across diverse diagnostic groups, varying communication abilities, and with people with moderate to severe intellectual disabilities., (© 2024. The Author(s).)

Objective: Japan has a system of occupational therapy programs known as self-reliance training (training for daily living), which helps people with various disabilities lead more meaningful lives. Recently, it has been shown that green care farms are beneficial for dementia care and that agricultural and horticultural work has a positive impact on people with intellectual disabilities and mental disorders. This study examined the health-improving effects of farm activities and developed an attractive program for adolescents with developmental and intellectual disabilities who use independent training facilities. The program comprised agricultural and horticultural activities such as vegetable cultivation and management, flower planting, and flower arrangement. Results: No significant differences were observed in any of the measures for positive mood before and after the usual program (UP). However, anger-hostility and depression-dejection improved significantly after the farm program (FP) (p <.05). Self-efficacy improved significantly after both UP and FP (p <.10). Free responses were obtained from UP (131 responses) and FP (126 responses) participants; thematic analysis of FP participants' statements revealed that positive comments included "confidence in accomplishing tasks," "anticipation and joy of growing plants," and "motivation for gardening activities." [ABSTRACT FROM AUTHOR]

Background: User involvement and participation in the supervision of the quality of care is an important topic for many healthcare inspectorates. It offers regulators an additional view on quality, increases the legitimacy and accountability of the inspectorate, empowers users and enhancing the public's trust in the inspectorate. To assess the accessibility of the local governmental social domain services the Joint Inspectorate Social Domain in the Netherlands worked together with people with intellectual disabilities performing as 'mystery guests' in an innovative project. This paper describes the findings of the evaluation of this project. Methods: People with intellectual disabilities living at home on their own may need some help with daily activities such as administrative tasks, raising children, household tasks, managing debts or finding work. In the Netherlands they have to arrange this help at their municipality. The goal of this project was to find out how easily people with intellectual disabilities could get help from their municipality. The participants were equal partners with the JISD inspectors from the beginning: in constructing an inspection framework, in acting as mystery guest with a fictive support request, reported back the results by storytelling. Results: The evaluation of the project showed that the JISD succeeded in their key aspect of the project: the goal to involve people with intellectual disabilities in a leading role from the beginning until the end. Their perspectives and preferences were the starting point of supervision. Pain points in accessibility became clear straight away and gave important insights for both inspectors as municipality professionals. Municipalities started to improve their services and evaluated the improvements with the clients. Furthermore, the impact on the participants themselves was also huge: they felt being taken seriously, valued and empowered. Conclusion: Involving people with intellectual disabilities as participants in all phases of supervision processes contributes to more relevant and useful outcomes, creates mutual understanding of perspectives, as affirmed by both municipalities and inspectors, and creates empowerment of the participants. Furthermore, it fits perfectly within the United Nation Convention on the rights of persons with disabilities and the current development of 'value driven regulation'. [ABSTRACT FROM AUTHOR]

Background: Rates of aggression in inpatient secure care are higher than in other psychiatric inpatient settings. People with intellectual disabilities in secure care require adapted psychological treatments. Interpersonal art psychotherapy incorporates the use of creative art making approaches by participants, thus reducing sole reliance upon verbal interactions during psychotherapy for people who may have communication difficulties. During interpersonal art psychotherapy, participants are individually supported by their therapist to consider how they conduct relationships. This includes the influence and impact of interpersonal issues resulting in repeated patterns of conflict. The key feasibility objectives were to assess recruitment and retention rates, follow-up rates and trial procedures such as randomisation, allocation and identifying any practical or ethical problems. In addition, a preliminary 'signal' for the intervention was considered and an indicative sample size calculation completed. The acceptability of a potential third trial arm attentional control condition, mindful colouring-in, was assessed using four single-case design studies and a UK trial capacity survey was conducted. Methods: Adult patients with intellectual disabilities in secure care were recruited and randomised to either interpersonal art psychotherapy or delayed treatment in this multi-site study. Outcomes were assessed using weekly observations via the Modified Overt Aggression Scale and a range of self-report measures. Within study reporting processes, qualitative interviews and a survey were completed to inform trial feasibility. Results: Recruitment procedures were successful. The target of recruiting 20 participants to the trial from multiple sites was achieved within 8 months of the study opening. All participants recruited to the treatment arm completed interpersonal art psychotherapy. Between-group differences of interpersonal art psychotherapy versus the delayed treatment control showed a 'signal' effect-size of.65 for total scores and.93 in the verbal aggression sub-scale. There were no amendments to the published protocol. The assessment of key feasibility objectives were met and the trial procedures were acceptable to all involved in the research. Conclusion: This study suggested that a randomised controlled trial of interpersonal art psychotherapy is acceptable and feasible. Trial registration: ISRCTN14326119 (Retrospectively Registered). [ABSTRACT FROM AUTHOR]

Background: Adequate implementation of infection prevention and control (IPC) in residential care facilities (RCFs) for people with intellectual and developmental disabilities (IDDs) is crucial to safeguarding this vulnerable population. Studies in this field are scarce. This study aimed to identify perceived barriers to and facilitators of IPC among professionals working in these settings, along with recommendations to improve IPC, to inform the development of targeted interventions. Methods: We administered an online questionnaire to 319 professionals from 16 Dutch RCFs for people with IDDs (March 2021-March 2022). Perceived multilevel barriers and facilitators (guideline, client, interpersonal, organisational, care sector, and policy level) were measured on a 5-point Likert scale (totally disagree-totally agree). Recommendations were assessed using a 5-point Likert scale (not at all helpful-extremely helpful), supplemented by an open-ended question. Barriers, facilitators, and recommendations were analysed by descriptive statistics. Open answers to recommendations were analysed through thematic coding. Results: Barriers to IPC implementation included the client group (e.g., lack of hygiene awareness) (63%), competing values between IPC and the home-like environment (42%), high work pressure (39%), and the overwhelming quantity of IPC guidelines/protocols (33%). Facilitators included perceived social support on IPC between professionals and from supervisors (90% and 80%, respectively), procedural clarity of IPC guidelines/protocols (83%), and the sense of urgency for IPC in the organisation (74%). Main recommendations included the implementation of clear IPC policies and regulations (86%), the development of a practical IPC guideline (84%), and the introduction of structural IPC education and training programmes (for new staff members) (85%). Professionals also emphasised the need for IPC improvement efforts to be tailored to the local care context, and to involve clients and their relatives. Conclusions: To improve IPC in disability care settings, multifaceted strategies should be adopted. Initial efforts should involve clients (and relatives), develop a practical and context-specific IPC guideline, encourage social support among colleagues through interprofessional coaching, reduce workload, and foster an IPC culture including shared responsibility within the organisation. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability have a poorer health status than the general population. In The Netherlands, support workers play a key role in meeting health support needs of people with intellectual disability. Research on how people with intellectual disability and their support workers experience the support worker's role in preventing, identifying, and following up health needs of people with intellectual disability is scarce. To enhance health support of people with intellectual disability it is crucial that we understand how health support is delivered in everyday practice. Therefore, this study investigated experiences of people with intellectual disability and support workers with the health support of people with intellectual disability. Method: Data collection consisted of six focus group (FG) discussions with between four and six participants (N = 27). The FGs consisted of three groups with support workers (n = 15), two groups with participants with mild to moderate intellectual disability (n = 8), and one group with family members as proxy informants who represented their relative with severe to profound intellectual disability (n = 4). The data was analysed thematically on aspects relating to health support. Results: We identified three main themes relevant to the health support of people with intellectual disability: 1) dependence on health support, 2) communication practices in health support, and 3) organizational context of health support. Dependence on health support adresses the way in which support workers meet a need that people with intellectual disability cannot meet themselves, and communication practices and organizational context are identified as systems in which health support takes place. Conclusion: This study investigated experiences with the health support of people with intellectual disability from the perspectives of people with intellectual disability and support workers. We discuss the dependence of people with intellectual disability and the complexity of health support in everyday practice. We provide practical implications that can strengthen support workers in the provision of health support for people with intellectual disability in everyday practice. The findings of this study emphasize the need for intellectual disability care-provider organizations to establish policies around consistency in support staff to make it easier to identify and follow up health needs, and an environment where support staff can develop their expertise concerning communication practices, lifestyle choices, and identifying and following up health needs. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disabilities have a higher prevalence of unhealthy eating habits, stress, low levels of mobility, and comparable drug consumption as the general population. Consequently, they suffer from several chronic diseases earlier and more often, but there are fewer prevention and health promotion services including this population. The goal of this study is to determine if an advanced practice nursing approach in the community with home visits is an effective way to improve the health status of adults with intellectual disabilities. Methods: We will conduct a randomized-controlled trial with waiting list design in Hamburg, Germany. Inclusion criteria are diagnosis ICD F70-F79 and exclusion criteria are care level > 3 according to the German Social Code XI or being at the end-of-life. Participants will be block randomized. The intervention consists of advanced practice nurses performing case management, social space analysis, prevention planning, and counseling through four outreach home visits on nutrition, mobility, addiction, and stress. Comparison is usual care. The primary outcome is health status (WHODAS) after 12 months. Secondary outcomes are health-related quality of life (EQ-5D) and resilience (RS-11) after 6 and 12 months. The calculated sample size is 256 with an estimated dropout of 30%. Raters and analysts will be blinded. Analysis will be performed using ANCOVAs. Discussion: By providing case management and utilizing their nursing expertise, advanced practice nurses will provide valuable input and guidance on prevention and health promotion for people with intellectual disabilities. They will close the gap between health and social care, which is prominent in Germany, through cooperation between the existing care sectors. The findings will be disseminated in peer-reviewed journals and presented at national and international conferences. Trial registration: German Clinical Trials Register, DRKS00028771, registered 4 July 2022, Universal Trial Number: U1111-1277–0595. [ABSTRACT FROM AUTHOR]

Background: Medical trainees (medical students, residents, and fellows) are playing an active role in the development of new curricular initiatives; however, examinations of their advocacy efforts are rarely reported. The purpose of this study was to understand the experiences of trainees advocating for improved medical education on the care of people with intellectual and/or developmental disabilities. Methods: In 2022–23, the authors conducted an explanatory, sequential, mixed methods study using a constructivist paradigm to analyze the experiences of trainee advocates. They used descriptive statistics to analyze quantitative data collected through surveys. Participant interviews then yielded qualitative data that they examined using team-based deductive and inductive thematic analysis. The authors applied Kern's six-step approach to curriculum development as a framework for analyzing and reporting results. Results: A total of 24 participants completed the surveys, of whom 12 volunteered to be interviewed. Most survey participants were medical students who reported successful advocacy efforts despite administrative challenges. Several themes were identified that mapped to Steps 2, 4, and 5 of the Kern framework: "Utilizing Trainee Feedback" related to Needs Assessment of Targeted Learners (Kern Step 2); "Inclusion" related to Educational Strategies (Kern Step 4); and "Obstacles", "Catalysts", and "Sustainability" related to Curriculum Implementation (Kern Step 5). Conclusions: Trainee advocates are influencing the development and implementation of medical education related to the care of people with intellectual and/or developmental disabilities. Their successes are influenced by engaged mentors, patient partners, and receptive institutions and their experiences provide a novel insight into the process of trainee-driven curriculum advocacy. [ABSTRACT FROM AUTHOR]

Background: Hospitals and long-term care facilities, which are key institutions to serve health and well-being, have an important exemplary role in providing supportive food environments to encourage healthy and sustainable food choices. The objective of this study is to characterize the physical, socio-cultural, political and economic dimensions of the food environment for health care receivers, health workforce and visitors in healthcare settings, and make comparisons between the food environment of hospitals and long-term care facilities. Methods: To characterize the food environment in healthcare settings, two sub-studies were conducted. In sub-study 1, semi-structured interviews were held with staff members (n = 46) representing 11 hospitals and 26 long-term care facilities (rehabilitation centres, nursing homes, institutions for people with intellectual disabilities and mental healthcare institutions). In sub-study 2, staff members audited the food environment in hospitals (n = 28) and long-term care facilities (n = 36) using a predefined checklist. Results: The food environment in Dutch healthcare settings varies substantially between locations although noticeable differences between hospitals and long-term care facilities were identified. Hospitals and larger long-term care facilities featured more often restaurants and utilized central spaces for preparation of meals, while smaller long-term care facilities often operated as household-like settings. Type of healthcare shaped the socio-cultural food environment, with hospitals primarily emphasizing nutrition for fast recovery, while long-term care facilities more often as an instrument (i.e., to structure the day). Participants highlighted the importance of food policies and broad organizational support for realizing and regulating improvement of the food environment. Yet, long-term care facilities were less familiar with national guidelines for food environments compared to hospitals. Several economical aspects, like profit motives, strict budgets and contracts with external parties affected and shaped the food available within all healthcare settings. Conclusions: This study characterized the food environment in Dutch healthcare settings. Disclosed differences between hospitals and long-term care facilities should be incorporated in strategies for a transition of the food environment. Future research should investigate the underlying mechanisms of the healthcare food environment attaining all healthcare stakeholders - health care receivers, staff and visitors - while prioritizing sustainability alongside healthiness. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are a marginalized group whose health experiences and outcomes are poor. Lack of skill and knowledge in the healthcare workforce is a contributing factor. In England, there is a new legislative requirement for mandatory intellectual disability training to be given to the existing healthcare workforce, including doctors. There is a lack of evidence about effective models of educational delivery of such training in medical schools. We undertook a scoping review to assess the range of intellectual disabilities educational interventions and their effectiveness. Methods: We included any study from 1980 onwards which reported an educational intervention on intellectual disability, or intellectual disability and autism, for medical students from any year group. Databases searched included PUBMED, ERIC, Scopus and Web of Science as well as searches of grey literature and hand searching two journals (Medical Education and Journal of Learning Disabilities). 2,020 records were extracted, with 1,992 excluded from initial screening, and a further 12 excluded from full-text review, leaving 16 studies for inclusion. Data was extracted, quality assessed, and findings collated using narrative analysis. Results: We found a variety of intervention types: classroom-based teaching, simulation, placement, home visits, and panel discussions. There was substantial variation in content. Most studies involved lived experience input. Across studies, interventions had different learning outcomes which made it difficult to assess effectiveness. Overall study quality was poor, with high use of non-validated measures, making further assessment of effectiveness problematic. Conclusions: There is a need for more consistency in intervention design, and higher quality evaluation of teaching in this area. Our review has drawn attention to the variety in teaching on this topic area and further research should focus on updating this review as curriculum changes are implemented over time. [ABSTRACT FROM AUTHOR]

Background: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. Methods: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. Results: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. Conclusions: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities may face a disproportionate risk of experiencing high anticholinergic burden, and its negative sequalae, from a range of medications, and at younger ages than the general population, but there has been little previous study. Our aim was to determine the source of anticholinergic burden from prescribed medication. Methods: Retrospective matched observational study using record linkage. Adults with (n = 4,305), and without (n = 12,915), intellectual disabilities matched by age-, sex- and neighbourhood deprivation. The main outcome measure was the prescription of long-term (approximately 12 months use) anticholinergic medications overall (classified according to the Anticholinergic Risk Scale [ARS]), by drug class, individual drugs, and polypharmacy. Results: Adults with n = 1,654 (38.4%), and without n = 3,047 (23.6%), intellectual disabilities were prescribed medications long-term with anticholinergic effects. Of those on such drugs, adults with intellectual disabilities were most likely to be on central nervous system (62.6%), gastrointestinal (46.7%), and cardiovascular (28.4%) medications. They were prescribed more central nervous system, gynaecological/urinary tract, musculoskeletal, and respiratory medications, and less cardiovascular, infection, and endocrine medications than their matched comparators. Regardless of age, sex, or neighbourhood deprivation, adults with intellectual disabilities had greater odds of being prescribed antipsychotics (OR = 5.37 [4.40–6.57], p < 0.001), antiepileptics (OR = 2.57 [2.22–2.99], p < 0.001), and anxiolytics/hypnotics (OR = 1.28 [1.06–1.56], p = 0.012). Compared to the general population, adults with intellectual disabilities were more likely to be exposed to overall anticholinergic polypharmacy (OR = 1.48 [1.33–1.66], p < 0.001), and to psychotropic polypharmacy (OR = 2.79 [2.41–3.23], p < 0.001). Conclusions: Adults with intellectual disabilities are exposed to a greater risk of having very high anticholinergic burden through polypharmacy from several classes of medications, which may be prescribed by several different prescribers. There is a need for evidence-based recommendations specifically about people with intellectual disabilities with multiple physical and mental ill-health conditions to optimise medication use, reduce inappropriate prescribing and adverse anticholinergic effects. [ABSTRACT FROM AUTHOR]

Background: Co-creation is a method to develop acceptable, contextually appropriate and potentially more effective interventions. Adolescents with intellectual disabilities (ID) seldomly participate in research and program development due to the assumption that they lack the capacity to understand and discuss the related topics. Objective: This study describes reflections on a co-creation process with adolescents with ID from the point of view of the researchers in developing an intervention to increase physical activity. It was the aim to highlight elements that must be considered when implementing co-creation and consequently formulate important lessons learned. Methods: Twenty-three adolescents (14–22 y) with mild to moderate ID participated in six co-creation sessions at their school. The objectives and working methods in each session are described. Inductive thematic analysis was conducted on the researchers' reflection forms, which were completed after each session. Results: Seven main themes could be distinguished from the data: experiences related to assistance (i.e., teacher presence) during sessions, the importance of building rapport, co-decision making power, the impact of different group dynamics, the relevance of adapted questioning, the influence of co-creative working methods and required characteristics of a co-creation researcher. Conclusion: Seven lessons learned were formulated when preparing and conducting co-creation with adolescents with ID. Innovative, concrete (non-abstract) and creative working methods are highly needed. Describing the entire process transparently could be a first step to turn co-creative research into an evidence-based methodology. Plain English summary: Studies show that people with intellectual disabilities are less physically active than the general population. This is a problem, since people with intellectual disabilities experience more health problems, and physical activity might be an important angle to reduce these health problems. However, current interventions to promote physical activity in this target group do not appear to work because they do not match their needs and preferences. Therefore, it is important to develop interventions together with them, in collaboration, what is called "co-creation". This has not happened much in research with people with intellectual disabilities before (and especially not with adolescents having intellectual disabilities), because researchers often have the perception that they do not have the capabilities to understand and discuss research related topics. This study elaborates on the researchers' experiences in conducting co-creative research with adolescents and young adults with mild to moderate intellectual disabilities, and formulates 'lessons learned' so that future researchers can start from these findings when they themselves want to engage in a co-creation process with this target group. The results showed that co-creation is feasible with this target group, if co-creation methods are selected that fit the target group (e.g. making use of visuals, asking concrete (non-abstract) questions and providing clear but short instructions). We suggest that (standardized) innovative and creative working methods are needed when conducting co-creation with this target group. Moreover, to be better armed against the enormous flexibility expected of a co-creative researcher, it might be helpful to make an assessment of the group dynamics before conducting co-creation. The presence and contribution of the physical education teacher in these co-creation sessions was seen as an added value for several reasons. By describing this entire process transparently and in detail, this could be a first step in making co-creation an evidence-based methodology, also for vulnerable populations. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities (ID) experience high rates of lifestyle related morbidities, in part due to lack of access to tailored health promotion programmes. This study aimed to assess the feasibility and preliminary efficacy of a tailored healthy lifestyle intervention, Get Healthy! Methods: Get Healthy! is a 12-week physical activity and healthy eating programme designed to address lifestyle-related risks for adults with mild-moderate ID. The feasibility pilot was designed to assess subjective participant experience and programme feasibility across: recruitment and screening, retention, session attendance and engagement, adverse events, and practicality and reliability of outcome procedures. Exploratory programme efficacy was assessed across the following measures: anthropometry (body mass index, weight, waist circumference), cardiovascular fitness, physical strength, dietary intake, healthy literacy, and quality of life. Results: Six participants with moderate ID and two carer participants completed the feasibility trial, representing a 100% retention rate. Qualitative data indicated the programme was well received. Participants with ID attended 75% of sessions offered and displayed a high level of engagement in sessions attended (91% mean engagement score). While most data collection procedures were feasible to implement, several measures were either not feasible for our participants, or required a higher level of support to implement than was provided in the existing trial protocol. Participants with ID displayed decreases in mean waist circumference between baseline and endpoint (95% CI: − 3.20, − 0.17 cm) and some improvements in measures of cardiovascular fitness and physical strength. No changes in weight, body mass index, or objectively measured knowledge of nutrition and exercise or quality of life were detected from baseline to programme endpoint. Dietary intake results were mixed. Discussion: The Get Healthy! programme was feasible to implement and well received by participants with moderate ID and their carers. Exploratory efficacy data indicates the programme has potential to positively impact important cardiometabolic risk factors such as waist circumference, cardiovascular fitness, and physical strength. Several of the proposed data collection instruments will require modification or replacement prior to use in a sufficiently powered efficacy trial. Trial registration: ACTRN: ACTRN12618000349246. Registered March 8th 2018—retrospectively registered, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=374497 UTN: U1111-1209–3132. [ABSTRACT FROM AUTHOR]

Background: Patient/Person Centred Care (PCC) has achieved widespread attention which resulted in the identification of eight dimensions of PCC: Respect for the patients' values, preferences and expressed needs; information and education; access to care; emotional support to relieve fear and anxiety; involvement of family and friends; continuity and secure transition between healthcare settings; physical comfort; coordination of care. An instrument to assess patient centeredness of care delivery according to these eight dimensions among professionals is however lacking. The main objective of this study is therefore to develop and validate an instrument to assess the eight PCC dimensions among professionals providing care to institutionalized People With Intellectual Disabilities (PWIDs).Methods: This cross-sectional survey study was conducted in a disability care centre in the region Twente in the Netherlands, the Twentse Zorgcentra. All professionals delivering care to institutionalized PWIDs (n = 1146) were invited to participate. An instrument was developed to assess the eight dimensions of PCC, which was tested among 464 professionals (response rate = 40%). We tested the instrument by means of structural equation modelling, and examined its validity and reliability.Results: Indices of the 35-item PCC version are satisfactory but showed that the model left room for improvement and shortening of the instrument (RMSEA >0.06 and CFI < 0.95). Confirmatory factor analyses revealed good indices of fit with the 24-item PCC-instrument among professionals. Internal consistency of the overall instrument was also good.Conclusions: The psychometric properties of the 24-item PCC-instrument were satisfactory, rendering it a valid and reliable instrument for assessing the eight dimensions of PCC among professionals providing care to institutionalized PWIDs. [ABSTRACT FROM AUTHOR]

Background: Diagnostic overshadowing can prevent the treatment of comfort eating in people with intellectual disabilities, and the published literature contains few therapeutic examples. This case study reports a relatively novel, promising, and accessible, remote cognitive behavioural intervention. Case presentation: This case study documents a therapeutic intervention for comfort eating with a client, Sarah, in a National Health Service adult Community Learning Disabilities Service. Sarah is a white, British woman in her late thirties, with a diagnosis of Down syndrome who experienced significant problems with comfort eating and subsequent weight management. Despite dieting and exercising, Sarah was clinically obese and experienced weight related pain and psychological distress. Systemic intervention between Sarah, her mother, and the therapist formulated Sarah's eating difficulties using a cognitive behavioural framework. This hypothesised how comfort-eating met her emotional needs and maintained her health difficulties. Remote cognitive behavioural therapy interventions included collaborative behavioural experiments, coping strategies, and homework tasks. Conclusions: The Maslow Assessment of Needs Scale-Learning Disabilities, Glasgow Depression Scale for people with a Learning Disability, Glasgow Anxiety Scale for people with an Intellectual Disability, qualitative feedback from family, as well as frequency data showed significant improvement. Additionally, the case considers the evidence base, assessment, formulation and intervention, before reflecting on its various strengths and limitations. It reflects on the intersectionality of sexuality and intellectual disabilities, and the desire for romantic attachment, which was additionally complicated by the context of coronavirus and social isolation. The environmental influences on comfort eating regarding this case, and in general, the experiences of people with intellectual disabilities are also considered. The potential clinical impact of this case study includes exemplifying an effective comfort eating therapeutic intervention in an often overlooked client group. [ABSTRACT FROM AUTHOR]

Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to protocols and analyses. In turn, most research regarding people with intellectual and developmental disabilities is not carried out by researchers with disabilities themselves. We developed a co-research training program where individuals with intellectual and developmental disabilities were taught about research. The program was designed using best practices and existing materials resources. We recruited four participants from Special Olympics Massachusetts and conducted the training in the Fall of 2021. We evaluated the program with surveys, qualitative interviews, and tracking continued involvement of co-researchers in research projects. Participants were partners in the evaluation process. The training program was six sessions and included lessons about why research is important, how to conduct research, and an experiential learning project where co-researchers conducted a study of their coaches. The program was well received by participants, and one year later they were still involved with research projects. A co-researcher training focused on public health for Special Olympics athletes is feasible and beneficial for athletes, researchers, and Special Olympics programs. However, there are still barriers like a lack of funding and time, that need to be addressed to ensure wide program success. Plain English summary: Co-research offers people with intellectual and developmental disabilities an opportunity to conduct research, rather than be the subjects. We developed a six-session co-researcher training in 2021 focused on public health for Special Olympics athletes. We found that co-research is feasible and rewarding for people with intellectual and developmental disabilities. Additional co-research activities and evaluation are needed. Special Olympics already conducts public health research activities and co-research training could be incorporated. [ABSTRACT FROM AUTHOR]

Background: Despite the increasing global population of individuals with intellectual and developmental disabilities (IDD), this population remains especially vulnerable to health disparities through several factors such as a lack of access to sufficient medical care and poor determinants of health. To add, numerous studies have shown that healthcare professionals are still insufficiently prepared to support this population of patients. This review synthesizes the literature on current pre-graduate IDD training programs across healthcare professions with the goal of informing the creation of evidence-based curricula. Methods: Four major databases were searched for current pre-graduate IDD training interventions for healthcare professionals. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram and the Best Evidence Medical Educations systematic review guide were used to frame our collection and analysis. Results: Of the 8601 studies screened, 32 studies were identified, with most studies involving medical students (50%). Of note, 35% of studies were interprofessional. Most interventions utilized multiple pedagogical methods with a majority including clinical experiences (63%) followed by theoretical teaching (59%). Kirkpatrick levels showed 9% were level 0, 6% were level 1, 31% were level 2A, 31% were level 2B, 19% were level 3, 3% were level 4A, and none were level 4B. Conclusions: There is a paucity of formally evaluated studies in pre-graduate health professional IDD education. As well, there are a lack of longitudinal learning opportunities and integration into formal curriculum. Strengths identified were the use of multimodal approaches to teaching, including interprofessional approaches to optimize team competencies. [ABSTRACT FROM AUTHOR]

Background: Adolescents with intellectual disabilities are probably twice as many people without intellectual disabilities to be sexually abused by family members, caregivers, close relatives, and others in the community. Sex education and training are essential components of children's and teenagers' education and human rights, as well as a source of worry for parents and society. While the parents are thought to be the most accessible choice as sexual educators, they often do not fulfill this role. Therefore, professional teachers and trainers who have undergone sex education courses for mentally retarded adolescents are more reliable sources to provide the sexual information in terms of their educational role. This study aimed to determine the experiences of teachers, educators, and school counselor parents regarding the sexual and reproductive health of educable intellectually disabled adolescent girls. Methods: This was a qualitative content analysis study. 35 participants were selected via purposive sampling with maximum variation, and data were collected through in-depth individual interviews, focus group discussions and field notes, and analyzed using the conventional qualitative content analysis method simultaneously. Results: Three subcategories have emerged: "knowledge and professional experience of teachers, educators, and school counselors with how to educate and care for adolescent sexual health", "proficiency of teachers, educators, and school counselors in guiding families in solving their child's sexual problems", "attitude of teachers, educators, and school counselors towards sexual behaviors and sexual education of adolescents" which formed the main category of "teachers, educators, and school counselors' inefficiency in maintaining ID adolescent girls' sexual and reproductive health". Conclusions: Teachers, educators, and school counselors encounter a variety of issues related to the sexual and reproductive health of intellectually impaired teenage females, as a consequence of the findings. As a result, efforts should be made to enhance knowledge and skill development, as well as the evolution of negative attitudes. Therefore, the teaching of sexual guidelines for teenagers with mental impairments should be included in the agenda of the country's educational policies. Teachers and educators should be taught by health experts via the holding of in-service training courses. Plain English summary: Achieving sexual health is a key task to develop health for all people including adolescents. Adolescents with intellectual disabilities are probably twice as many as people without intellectual disabilities to be sexually abused by family members, caregivers, close relatives, and others in the community. The role of schools and educators to manage children's sexual behaviors and provide appropriate training in this field was accepted by most societies. This research aimed to ascertain instructors', educators', and school counselors' perceptions on teenage females with educable ID's sexual health. Participants in the present study were mothers, teachers, educators, and school counselors who were selected via purposive sampling in Isfahan from July 2017 to April 2018. Data were collected from via semi‑structured interviews, focus group discussions, and field notes, and analyzed using conventional content analysis. The results showed that teachers, educators, and school counselors face different challenges about the sexual and reproductive health of intellectually disabled adolescent girls. Therefore, it should be attempted to promote knowledge and skill and eliminate negative attitudes and make them aware of the sexual rights of intellectually disabled adolescent girls to protect themselves in different situations. [ABSTRACT FROM AUTHOR]

Background: Professionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID. This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts. Methods: A qualitative design was used to reconstruct the cases of twelve recently deceased people with ID. Relatives and professionals who were closest to the person at the end of their life were interviewed. Interviews were transcribed verbatim and data were analyzed inductively, using elements of thematic analysis. Results: Five shifts were found: 1) adapting to a new strategy of comforting care, taking over tasks and symptom relief, 2) interweaving of emotional and professional involvement, 3) stronger reliance on the joint interpretation of signals expressing distress and pain, 4) magnified feeling of responsibility in medical decisions, 5) intensified caring relationship between ‘two families': relatives and care staff. Six relational values were behind these shifts: ‘being there’ for the person with ID, ‘being responsive’ to the person's needs, ‘reflection' on their own emotions and caring relationships, ‘attentiveness' to the ID person's wishes and expressions of distress, ‘responsibility' for taking joint decisions in the best interests of the person, and ‘openness to cooperation and sharing' the care with others. Conclusions: End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision making. Three caring relationships need to be fostered: the relationship with the person with ID, relationships among professionals and the relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals. [ABSTRACT FROM AUTHOR]

Mental health problems (MHP) have a considerable negative impact on health-related quality of life (HRQoL) in children and their families. A low threshold Health Coaching (HC) program has been introduced to bring MH services to primary care and strengthen the role of pediatricians. It comprised training concepts as a hands-on approach for pediatricians, standardization of diagnosis and treatment, and extended consultations. The aim of this study was to evaluate the potential effects of the HC on HRQoL in children with MHP and their parents. We used data from the PrimA-QuO cohort study conducted in Bavaria, Germany from November 2018 until November 2019, with two assessments one year apart. We included children aged 17 years or younger with developmental disorder of speech and language, non-organic enuresis, head and abdominal pain, and conduct disorder. All included children were already part of the Starke Kids (SK) program, a more general preventive care program, which includes additional developmental check-ups for children enrolled in the program. In addition, treatment according to the HC guidelines can be offered to children and adolescents with mental health problems, who are already enrolled in the SK program. These children form the intervention group; while all others (members of BKK and SK but not HC) served as controls. HRQoL in children was assessed using the KINDL questionnaire. Parental HRQoL was measured by the visual analogue scale. To analyze the effects of the intervention on children´s HRQoL over the 1-year follow-up period, we used linear mixed effects models. We compared 342 children receiving HC with 767 control patients. We could not detect any effects of the HC on HRQoL in children and their parents. This may be attributed to the relatively high levels of children´s HRQoL at baseline, or because of highly motivated pediatricians for the controls because of the selection of only participant within the Starke Kids program. Generally, HRQoL was lower in older children (-0.42 points; 95% CI [-0.73; -0.11]) and in boys (-1.73 points; 95% CI [-3.11; -0.36]) when reported by proxy. Parental HRQoL improved significantly over time (2.59 points; 95% CI [1.29; 3.88]). Although this study was not able to quantitatively verify the positive impact of this HC that had been reported by a qualitative study with parents and other stakeholders, and a cost-effectiveness study, the approach of the HC may still be valid and improve health care of children with MHP and should be evaluated in a more general population. [ABSTRACT FROM AUTHOR]

Background: The BMI index cannot always be used in people with intellectual disabilities due to neuromuscular coordination disorders and psychological barriers that may hinder conventional body weight measurement. The study aimed to assess the usefulness of BMI and BAI in estimating obesity and body fat in people with intellectual disabilities.Methods: The first stage of the research involved 161 people with profound intellectual disabilities. Somatic parameters (BM, BH, WC, HC) were measured and BMI, BAI, WHR were calculated. Fifty seven persons with above-normal BMI and BAI were included in the second stage of the study and biochemical parameters were determined (TC, LDL-cholesterol, HDL-cholesterol, TG, GL).Results: According to both BMI and BAI classifications, most people were overweight or obese. A high correlation of %BF with BMI and BAI indices was observed (r = 0.78). The sensitivity of both indices was 95.65%. In groups with above-normal BMI and BAI, an upward trend was found for mean values of TC, LDL, TG, and GL, with a simultaneous downward trend for HDL. Statistically significant intergroup differences were recorded for TG and GL (p < 0.05) for both indices (BMI and BAI).Conclusions: Our research demonstrated that BAI is complementary to BMI and can be recommended for the estimation of body fat and cardiometabolic risks in people with intellectual disabilities. Due to the ease of measurement, BAI has high utility value. [ABSTRACT FROM AUTHOR]

Background: There is inconsistent evidence for a clear pattern of association between 'camouflaging' (strategies used to mask and/or compensate for autism characteristics during social interactions) and mental health. Methods: This study explored the relationship between self-reported camouflaging and generalised anxiety, depression, and social anxiety in a large sample of autistic adults and, for the first time, explored the moderating effect of gender, in an online survey. Results: Overall, camouflaging was associated with greater symptoms of generalised anxiety, depression, and social anxiety, although only to a small extent beyond the contribution of autistic traits and age. Camouflaging more strongly predicted generalised and social anxiety than depression. No interaction between camouflaging and gender was found. Limitations: These results cannot be generalised to autistic people with intellectual disability, or autistic children and young people. The sample did not include sufficient numbers of non-binary people to run separate analyses; therefore, it is possible that camouflaging impacts mental health differently in this population. Conclusions: The findings suggest that camouflaging is a risk factor for mental health problems in autistic adults without intellectual disability, regardless of gender. We also identified levels of camouflaging at which risk of mental health problems is highest, suggesting clinicians should be particularly aware of mental health problems in those who score at or above these levels. [ABSTRACT FROM AUTHOR]

Background: While there are known risk factors for suicidality in autistic adults, these are often unconnected from theoretical frameworks that might explain why risk is elevated and guide clinical interventions. The present study investigated the relevance of constructs from the Interpersonal Theory of Suicide (ITS), including perceived burdensomeness, thwarted belongingness and acquired capability for suicide, and explored mechanisms through which certain risk factors (relationship status, age at diagnosis) might elevate suicide risk. Methods: Autistic adults (n = 314) completed an online study including measures of depression, anxiety and constructs from the ITS. Linear and multinomial regression analysis disentangled contributions of ITS variables from effects of depression and anxiety for past-year suicide ideation, past-year and lifetime suicide attempts. Mediation analyses examined associations between risk factors and these suicide outcomes via mechanisms proposed by the ITS. Results: Past-year suicide ideation was associated with burdensomeness, mental rehearsal of suicide plans (a facet of acquired capability), and depression. Greater feelings of burdensomeness, and reduced fear of death, marked out participants who had attempted suicide in comparison to those who had experienced suicide ideation in the past year. Relationship status was indirectly associated with past-year suicide ideation via the mediators of depression and burdensomeness, and was associated with past-year attempts via its effect on ideation. Age at diagnosis was unrelated to any variables. Limitations: Cross-sectional research is insensitive to causality and temporal dynamics, which is likely why interaction hypotheses from the ITS were unsupported. Normative measures may be invalid in autistic samples. There was no control group. The autistic sample was unrepresentative of the whole population, particularly autistic people with intellectual disabilities, ethnic/racial minorities, and gender minorities. Conclusions: Perceived burdensomeness and acquired capability appear potentially important to suicide in autistic people, and may mediate the effects of some risk factors. Future research should explore the temporal dynamics of suicide trajectories in longitudinal, prospective designs. [ABSTRACT FROM AUTHOR]

Background: Approximately 10-20 % of adults with intellectual disabilities engage in challenging behaviours such as aggression, destructiveness, and self-injury, which are often accompanied by feelings of anger. The inability to manage anger can reduce quality of life. For example, aggression is a strong predictor of out-of-area placements and is a risk variable for abuse. Recent research suggests that mindfulness-based therapies (specifically, Singh's Soles of the Feet meditation) can help people with intellectual disabilities manage angry emotions, with resultant reductions in challenging behaviour. However, previous research has been single-case design studies, and no group studies have been published with people with intellectual disabilities and aggressive behaviour., Methods/design: For this feasibility study, a UK protocol will be developed for use by health professionals within National Health Service (NHS) Intellectual Disability (ID) teams, based upon Singh's Soles of the Feet manual. Twenty adults with intellectual disabilities and identified problems with anger control will be recruited and six sessions will be delivered by a trained ID clinician. The study will monitor participant's aggressive behaviour, health-related quality of life, anxiety, depression, and use of support services (medication, hospital appointments etc.). These will be measured at three time points: (1) Baseline (within 2 weeks prior to the first session of the intervention), (2) 2 months post-baseline, and (3) 6 months post-baseline. Qualitative interviews will be conducted with participants, their carers, and the therapists who delivered the intervention. In order to help design an economic evaluation alongside a future full trial, we will cost the intervention and test the acceptability and validity of health economics measures to record resource use and health-related quality of life outcomes., Discussion: The data from this study will inform the feasibility of the project protocol and intervention, which will help develop future research and to determine whether a larger, randomised controlled trial with concurrent economic evaluation is feasible., Trial Registration: UKCERN: 16743.

Background: The COVID-19 pandemic has exacerbated the psychological burden on young people around the world and may have disproportionately large impacts for young people with disabilities. This review aims to systematically review the quantitative evidence on the impact of the COVID-19 pandemic on the mental health of young people with disabilities and evaluate the quality of included studies. Methods: A systematic search was conducted using 5 electronic databases. The quality of the studies was assessed using the SIGN risk of bias assessment tool. A narrative synthesis was performed to synthesize the results of included studies. Results: The initial search yielded 1935 studies, of which two met the eligibility criteria, one longitudinal study and one cross-sectional study, both assessed to be of low quality. In the cross-sectional study, young people with intellectual and developmental disabilities self-reported an increase in mental health symptoms. The longitudinal study found no evidence of a change in mental health symptoms from pre-pandemic to during the pandemic among young people with autism spectrum disorder, although these individuals reported negative impacts of the COVID-19 pandemic on their emotional or mental health. Conclusions: The findings of this review provide some weak evidence of a negative impact of the COVID-19 pandemic on the mental health of young people with disabilities. Importantly, the findings highlight the lack of research in this area. More research is needed to investigate the impact of the pandemic on the mental health of young disabled people, in order for governments to develop emergency preparedness plans to safeguard the well-being of this population. [ABSTRACT FROM AUTHOR]

Background: The relationships between specific genetic aetiology and phenotype in neurodevelopmental disorders are complex and hotly contested. Genes associated with intellectual disability (ID) can be grouped into networks according to gene function. This study explored whether individuals with ID show differences in autism spectrum characteristics (ASC), depending on the functional network membership of their rare, pathogenic de novo genetic variants. Methods: Children and young people with ID of known genetic origin were allocated to two broad functional network groups: synaptic physiology (n = 29) or chromatin regulation (n = 23). We applied principle components analysis to the Social Responsiveness Scale to map the structure of ASC in this population and identified three components—Inflexibility, Social Understanding and Social Motivation. We then used Akaike information criterion to test the best fitting models for predicting ASC components, including demographic factors (age, gender), non-ASC behavioural factors (global adaptive function, anxiety, hyperactivity, inattention), and gene functional networks. Results: We found that, when other factors are accounted for, the chromatin regulation group showed higher levels of Inflexibility. We also observed contrasting predictors of ASC within each network group. Within the chromatin regulation group, Social Understanding was associated with inattention, and Social Motivation was predicted by hyperactivity. Within the synaptic group, Social Understanding was associated with hyperactivity, and Social Motivation was linked to anxiety. Limitations: Functional network definitions were manually curated based on multiple sources of evidence, but a data-driven approach to classification may be more robust. Sample sizes for rare genetic diagnoses remain small, mitigated by our network-based approach to group comparisons. This is a cross-sectional study across a wide age range, and longitudinal data within focused age groups will be informative of developmental trajectories across network groups. Conclusion: We report that gene functional networks can predict Inflexibility, but not other ASC dimensions. Contrasting behavioural associations within each group suggest network-specific developmental pathways from genomic variation to autism. Simple classification of neurodevelopmental disorder genes as high risk or low risk for autism is unlikely to be valid or useful. [ABSTRACT FROM AUTHOR]

Background: Employment is recognised as facilitating the personal and clinical recovery of people with psychosocial disability. Yet this group continue to experience considerable barriers to work, and, constitute a significant proportion of individuals engaged with Disability Employment Services (DES). Recognition of the role of recovery-oriented practice within DES remains limited, despite these approaches being widely promoted as best-practice within the field of mental health.Methods: The Improving Disability Employment Study (IDES) aims to gather evidence on factors influencing employment outcomes for Australians with disability. Descriptive analysis and linear regression of IDES survey data from 369 DES participants, alongside narrative analysis of data collected through 56 in-depth interviews with 30 DES participants with psychosocial disability, allowed us to explore factors influencing mental health, well-being and personal recovery within the context of DES.Results: Psychosocial disability was reported as the main disability by 48% of IDES respondents. These individuals had significantly lower scores on measures of mental health and well-being (44.9, 48.4 respectively, p ≤ 0.01), compared with respondents with other disability types (52.2, 54.3 p ≤ 0.01). Within this group, individuals currently employed had higher mental health and well-being scores than those not employed (47.5 vs 36.9, 55.5 vs 45.4 respectively, p ≤ 0.01). Building on these findings, our qualitative analysis identified five personal recovery narratives: 1) Recovery in spite of DES; 2) DES as a key actor in recovery; 3) DES playing a supporting role in fluctuating journeys of recovery; 4) Recovery undermined by DES; and, 5) Just surviving regardless of DES. Narratives were strongly influenced by participants' mental health and employment status, alongside the relationship with their DES worker, and, participants' perspectives on the effectiveness of services provided.Conclusion: These findings re-iterate the importance of work in supporting the mental health and well-being of people with psychosocial disability. Alongside access to secure and meaningful work, personal recovery was facilitated within the context of DES when frontline workers utilised approaches that align with recovery-orientated practices. However, these approaches were not consistently applied. Given the number of people with psychosocial disability moving through DES, encouraging greater consideration of recovery-oriented practice within DES and investment in building the capacity of frontline staff to utilise such practice is warranted. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability (ID) face considerable barriers to accessing psychiatric health care, thus there is a risk for health disparity. The aims of the present study were 1) to compare specialist psychiatric health care utilization among older people with ID to that with their age peers in the general population, taking into account demographic factors and co-morbidities associated with specialist psychiatric health care utilization and 2) to determine a model for prediction of specialist psychiatric health care utilization among older people with ID. Material and methods: We identified a national cohort of people with ID (ID cohort), aged 55+ years and alive at the end of 2012 (n = 7936), and a referent cohort from the general population (gPop cohort) one-to-one matched by year of birth and sex. Data on utilization of inpatient and outpatient specialist psychiatric health care, as well as on co-morbidities identified in either psychiatric or somatic specialist health care, were collected from the National Patient Register for the time period 2002–2012. Results: After adjusting for sex, age, specialist psychiatric health care utilization the previous year, and co-morbidities, people in the ID cohort still had an increased risk of visits to unplanned inpatient (relative risk [RR] 1.95), unplanned outpatient (RR 1.59), planned inpatient (RR 2.02), and planned outpatient (RR 1.93) specialist psychiatric health care compared with the general population. Within the ID cohort, increasing age was a predictor for less health care, whereas psychiatric health care the previous year predicted increased risk of health care utilization the current year. As expected, mental and behavioral disorders predicted increased risk for psychiatric health care. Furthermore, episodic and paroxysmal disorders increased the risk of planned psychiatric health care. Conclusions: Older people with ID have a high need for psychiatric specialist health care due to a complex pattern of diagnoses. Further research needs to investigate the conditions that can explain the lesser psychiatric care in higher age groups. There is also a need of research on health care utilization among people with ID in the primary health care context. This knowledge is critical for policymakers' plans of resources to meet the needs of these people. [ABSTRACT FROM AUTHOR]