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Background People with intellectual disabilities (IDs) may be at increased risk of developing periodontal diseases and dental caries due to poor oral hygiene. Our aim was to investigate motor proficiency factors associated with presence of visible plaque and gingival bleeding in people with IDs. We were particularly interested in the level of dependence, manual coordination and fine manual control of people with ID, as well as the level of exhaustion of the primary caregiver. Methods In this cross-sectional study, 299 people with ID were evaluated for oral hygiene using the simplified Visible Plaque Index and for gum inflammation using the Gingival Bleeding Index. The Bruininks-Oseretsky Motor Proficiency Test assessed motor proficiency through fine manual control (fine motor integration and fine motor precision) and manual coordination (manual dexterity and upper limb coordination). The level of dependence was assessed by the Katz dependency index, and the caregiver was tested for exhaustion using the fatigue severity scale. Prevalence ratios [and 95% confidence intervals (CI)] were calculated using crude and adjusted Poisson regression with robust variance. Results The exhaustion of the caregiver was associated positively to visible plaque [prevalence ratio (PR) = 1.36; 95% CI 1.06-1.65]. For gingival bleeding, people with IDs that had better fine motor integration (PR = 0.49; 95% CI 0.33-0.75) and precision (PR = 0.50; 95% CI 0.26-0.94), as well as manual dexterity (PR = 0.62, 95% CI 0.49-0.77), presented better results. Conclusion Poor oral hygiene and gum inflammation were associated with motor proficiency of people with IDs and caregivers' exhaustion. Interventions to improve the oral health of people with IDs should take into account such conditions.

Objective: People with intellectual disabilities (ID) are largely dependent on their environment to live healthily and, in this, ID-support organizations play a vital role. An environmental asset mapping tool for ID-support settings has been developed. This study aims to provide insight into whether or not the tool can provide a comprehensive view on assets in the system and actionable knowledge to improve healthpromoting capacities in ID-support settings. Methods: Fifty-seven users from four setting completed the tool on availability, user satisfaction, and dreams regarding social, physical, organizational, and financial assets. Results: The findings provide a comprehensive view of available assets. Together with user satisfaction and dreams for improvements, they provide actionable knowledge for improving the health-promoting capacities of the settings, including: (1) how use of available assets can be improved, (2) the type of assets that should be enriched, and (3) the assets that can be added to the system. Conclusion: The asset mapping tool provides a comprehensive view on assets in the system and actionable knowledge to improve health-promoting capacities in ID-support settings. Practice implications: ID-support organizations can use the tool to generate actionable bottom-up knowledge for priority setting and implementing interventions to improve their health-promoting capacities. (c) 2021 The Author(s). Published by Elsevier B.V. CC_BY_NC_ND_4.0

BackgroundThis meta-analysis aims to: (i) describe the pooled prevalence of diabetes in people with intellectual disabilities, (ii) investigate the association with demographic, clinical and treatment-related factors and (iii) compare the prevalence versus age- and gender-matched general population controls.MethodsPubmed, Embase and CINAHL were searched until 01 May 2021. Random effects meta-analysis and an odds ratio analysis were conducted to compare rates with controls.ResultsThe trim- and fill-adjusted pooled diabetes prevalence amongst 55,548 individuals with intellectual disabilities (N studies = 33) was 8.5% (95% CI = 7.2%–10.0%). The trim- and fill-adjusted odds for diabetes was 2.46 times higher (95% CI = 1.89–3.21) (n = 42,684) versus controls (n = 4,177,550).Older age (R2 = .83, p p = .009) and co-morbid depression (R2 = .18, p = .04), anxiety (R2 = .97, p R2 = 0.29, p ConclusionsOur findings demonstrate that people with intellectual disabilities are at an increased risk of diabetes, and therefore routine screening and multidisciplinary management of diabetes is needed.

Background Sexual health remains at risk for people with an intellectual disability. Attitudes towards sexuality, its support and education have an important role in promoting sexual health. The current review aims to provide an overview of the current research on supportive and restrictive attitudes towards sexuality and its support of people with intellectual disabilities themselves. Method A systematic review was conducted, searching across eight databases. The quality of the studies was assessed with the Mixed-Method Appraisal Tool. Results Six themes emerged from the data: sexual behaviour, sexual identity, intimate relationships, barriers to sexual expression, sex education and support by caregivers. Supportive and restrictive attitudes were reported throughout. Conclusions Attitudes regarding sexuality of people with intellectual disabilities are heterogeneous and people with intellectual disabilities seem to be able to express their sexual desires, needs and attitudes. Findings allow for improved individual support and in-depth research questions.

Purpose This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value To the best of the authors’ knowledge, this is the first paper to compare dementia assessment provision between different services in England.

Purpose The purpose of this paper is to provide a commentary on Banks et al. and sets the wider context. Design/methodology/approach It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised.

eHealth applications are increasingly being used in services for people with intellectual disabilities (ID). DigiContact is an online support service that uses videoconferencing techniques to enable people with ID to contact a team of specially trained support workers 24/7. In this qualitative and participatory study we aimed to explore the experiences of independently living people with ID with what it is like to be supported online. Five online support users were each interviewed twice and the transcripts were analysed using a phenomenological hermeneutic method. Choice and control played a central role in their shared experiences, as well as the relationship with online support staff. The results indicate that the suitability of online support depends on the needs, capabilities and preferences of each individual support user. This underlines the importance of a personalised approach to the planning and delivery of online support. Points of interest In this research we interviewed five persons from the Netherlands about what it is like for them to be supported by the online service DigiContact. They felt that DigiContact helped them to have access to sufficient professional support. Without DigiContact this would have been impossible, because of a reorganisation of the national long-term care system and cuts in care budgets. They also felt that DigiContact gave them control over their support and stimulated them to take on an active role towards solving their problems. Online support felt relatively impersonal, because they had contacts with different support workers. We conclude that online support seems not to be equally suitable for everybody. Whether online support is suitable, and in what form, depends on someone’s personal needs, wishes and preferences in support. Service organisations should look carefully at each individual person when planning the use of online support.

This study focusses on the question of how the values of autonomy, self-determination, and independence influence people with intellectual disabilities who live in a social world of institutionaliz...

BackgroundThe effect of policy initiatives and deprivation on mortality disparities in people with intellectual disabilities is not clear.MethodsAn electronic health record observational study of linked primary care data in England from the Clinical Practice Research Datalink and the Office for National Statistics deaths data from 2000 to 2019 was undertaken. All-cause and cause-specific mortality for people with intellectual disabilities were calculated by gender and deprivation status (index of multiple deprivation quintile) using direct age-standardised mortality rates (all years) and ratios (SMR; 2000–2009 vs 2010–2019).ResultsAmong 1.0 million patients (n=33 844 with intellectual disability; n=980 586 general population without intellectual disability), differential mortality was consistently higher in people with intellectual disabilities and there was no evidence of attenuation over time. There was a dose–response relationship between all-cause mortality and lower deprivation quintile in the general population which was not observed in people with intellectual disabilities. Cause-specific SMR were consistent in both the 2000–2009 and 2010–2019 calendar periods, with a threefold increased risk of death in both males and females with intellectual disabilities (SMR ranges: 2.91–3.51). Mortality was highest from epilepsy (SMR ranges: 22.90–52.74) and aspiration pneumonia (SMR ranges: 19.31–35.44). SMRs were disproportionately high for people with intellectual disabilities living in the least deprived areas.ConclusionsPeople with intellectual disabilities in England continue to experience significant mortality disparities and there is no evidence that the situation is improving. Deprivation indicators may not be effective for targeting vulnerable individuals.

Literature pertaining to open disclosure predominantly refers to acute care settings; this is the case in, for example, the UK, Republic of Ireland, Australia, Korea and the USA. There is, however, a dearth of literature regarding open disclosure related to people with intellectual disabilities. A practice example of open disclosure is presented here, following a serious adverse event in an organisation supporting adults with intellectual disabilities. The aim of the process was to openly disclose in a meaningful way to adults with significant intellectual disabilities and communication difficulties. An apology pathway was developed by a multidisciplinary team based on individual communication needs. A suite of resources was developed including easy read-picture agendas and sign language to support increased understanding of the apology. Service users received the apology first, followed by meetings with their families. This practice example has positive implications for service providers for people with intellectual disabilities.

Purpose The purpose of this paper is to broaden the discussion on some of the barriers and solutions for co-production in positive behaviour support (PBS) planning as identified in the paper “Including people with intellectual disabilities in the development of their own Positive Behaviour Support Plans”. Design/methodology/approach Drawing on the literature associated with co-production in PBS planning, this commentary will reflect on the wider systems and culture needed to enable successful implementation of this way of working. Findings Co-production in PBS planning is recommended as part of best practice guidelines. However, there is limited research in the area of co-production with regards to PBS and use of augmentative and alternative communication methods. Collaboration among speech and language therapy and PBS practitioners is an important factor for co-production to achieve the best outcomes for people with learning disabilities who display behaviours of concern. Along with identifying a range of communication tools/strategies needed for PBS assessment/planning, it also requires a whole systems approach and culture shift to ensure the necessary foundations are in place. Originality/value Co-production in PBS planning remains an under practiced way of working. This commentary builds on the barriers and solutions identified for co-production and provides further insight into what might be needed to achieve this in health and social care settings.

Due to improvements in healthcare and the standard of living advancing, the life expectancy of people with intellectual disabilities (ID) has increased, with a greater number of people with ID now ...

This short report discusses issues related to the employment policy and vocational activity support system for people with intellectual disabilities in Poland. The analyses are based on data from a broader research project entitled Employment and Disability. The reconstruction of the Vocational Experience of Persons with Intellectual Disabilities in Poland. The project sought to explore the work-related situation of persons with intellectual disabilities regarding the employment policy, support practices in workplaces, and vocational experience of employees with intellectual disabilities, their job coaches and the coordinators of employment projects. The methodological framework combined the grounded theory set in social constructivism, as presented in Charmaz's works, with discourse analysis and the sociologically-oriented analysis of practices. The data were collected in 25 workplaces employing persons with disabilities in various parts of Poland, mainly by means of in-depth interviews, observation, and field notes. Although analyses discussing the specificity of Polish employment policy indicate that the vocational activity of persons with intellectual disabilities is promoted in Poland, in reality its implementation is difficult. The difficulties result from the poor quality law regulating vocational activity, lack of adequate legislative solutions, barriers on the part of employers, and the absence of sufficient financial support.

This article is about the challenge of communication via smartphones and tablets by people with intellectual disabilities (ID). We will give special attention to persons that struggle with verbal communication. One of our co-researchers, the fourth author, has a severe ID. She cannot read, write or use voice assisted technology in any functional manner. As a result of many years of collaboration, and the need for solutions in connection with the challenges with COVID-19, she and her family have developed ways of remote communication that can be mastered both by the person with an ID and the majority (those without similar disabilities). We call it doing and talking. Successful remote communication not only depends on technology and how to use it, but also on communication strategies that both work for the person with an ID and the majority. It is often the case that people with ID are expected to learn the skills necessary to adapt to the majority. We will show that success is just as much a question of the majority learning new skills and strategies that can make real inclusion and collaboration possible. [ABSTRACT FROM AUTHOR] Copyright of International Journal of Disability, Development & Education is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.

The delivery of quality primary healthcare (from the perspective of general practitioners) and access to such care (from the perspective of people with intellectual disabilities) has been the focus...

This paper aims to study the effect of blue color on users of architectural spaces in general, and for people with intellectual disabilities in particular, with the aim of improving their mental skills. By controlling the color of the interior space and studying the effect of color on many cases through their presence in the specified space and their exposure to color. The study included 73 cases with different mental problems. We exposed 33 cases to Blue, while we left another group of 40 cases without exposure to it. Exposing cases to blue took two hours a day for two days a week. Intelligence tests were done for each condition, pretest (at the start of the study), and posttest (six months after the first test). The study showed that the exposure to blue color made an increase in the percentage of intelligence of cases that were exposed to blue color compared to those that were not exposed to it. Since this research aims to study the possibility of increasing the intelligence of cases with different mental problems, the aim was to study the effect of blue to increase their Intelligence quotient (IQ) compared to those who are not exposed to it. The intelligence tests that applied to different cases of people with intellectual disabilities compared to those that were not exposed to blue expected to show if there is an impact.

Improving health and healthcare are dynamic processes in which stakeholders from research and practice are interdependent. Therefore, there is an increasing demand in approaches that facilitate collaboration and knowledge exchange between academic research and daily practice of patients, healthcare professionals and healthcare policy (1-5). As an answer to this call, a myriad of collaborative networks and approaches are initiated, including communities of practice, academic collaboratives (AC) and research partnerships (6-9). However, collaboration networks often face challenges, such as lack of interaction between knowledge users and knowledge producers, inadequate match between the supply of and demand for knowledge products, suboptimal use of novel scientific knowledge and expensive innovations resulting in limited effects on practice (10-14). For sustainable development, an AC or any other type of collaboration network needs to create a way of working together that is able to address these challenges (15). In the Netherlands, AC’s are a common form to facilitate research practice collaboration and knowledge exchange (1). The AC ‘Stronger on your own feet’ (SOO) is such a collaboration between the Radboudumc and seven care organizations for people with intellectual disabilities (ID). The aim of this AC is to improve the health and healthcare for people with ID. Like in other AC’s, SOO encounters challenges in the collaboration and knowledge exchange between research and practice such as differences in timelines, knowledge needs and priorities (1). To date, there is little insight in the functioning of academic collaboratives and how collaboration and knowledge exchange within an AC is being shaped. This study provides more insight about the functioning of AC’s and into how collaboration and knowledge exchange within an AC in the ID care sector can be improved. In this way, the health of and healthcare for people with ID can benefit. The aims of this study are to explore 1) the network positions of organizations within AC SOO concerning collaboration and knowledge exchange within the AC, 2) on which themes organizations within AC SOO collaborate and exchange knowledge, and 3) what the perspectives are on the current and future network position of organizations within AC SOO concerning collaboration and knowledge exchange. An explanatory sequential mixed methods design will be used involving quantitative data and explaining the quantitative findings with in-depth qualitative data. The overall research question of this study is the following: How do organizations within an Academic Collaborative in care for people with ID collaborate and exchange knowledge? Sub research questions: 1. What network position do organizations have within AC SOO concerning collaboration, knowledge sharing and knowledge searching? 2. On which themes do organizations within AC SOO collaborate, share and search knowledge? 3. What are perspectives for the current (and future?) network position of organizations within AC SOO concerning collaboration, knowledge sharing and knowledge searching?

A strong, stable social network constitutes a potential guarantee that people with intellectual disabilities can have natural supports throughout their lives that will help them in their process of...

BACKGROUND: Work holds great meaning and benefits beyond just monetary gain for people with intellectual disabilities. It gives these individuals the opportunity to engage in meaningful occupation. OBJECTIVE: The purpose of the study was to explore challenges that people with intellectual disabilities (PWID) experience when adapting to their worker roles in the open labor market. METHODS: The study used grounded theory as the research design. Five male participants and two key informants participated in the study. Two semi structured interviews were conducted with each one of the seven participants (five PWID and two key informants). RESULTS: Three core concepts emerged: 1) Unforeseen challenges of change; 2) A well-planned work preparation program enables success and 3) Crossing the bridge into the workplace: “Do I belong here?” CONCLUSIONS: This indicated that with sufficient external support, PWID are able to gain a sense of social belonging and develop the necessary skills to cope with challenges that arise in the workplace when PWID transition from protective/sheltered workshops to the open labor market. The findings of the study also indicated that work preparation programs and supportive employment approaches helped PWID transition to the open labor market.

Research confirms the effectiveness of training based on specific sports discipline in the therapy of people with intellectual disabilities. The aim of the study was to determine the influence of c...

BACKGROUND Microenterprises are very small businesses requiring little capital and can be an employment pathway for people with intellectual disabilities. This systematic review aims to identify the facilitators, barriers and outcomes from microenterprise. METHOD Web of Science, Scopus, EconLit, PsycINFO and ProQuest were searched to identify peer-reviewed studies on microenterprises owned by people with intellectual disability published up to and including 1 October 2019. RESULTS A total of 1080 papers were independently screened by two reviewers. Six papers met the inclusion criteria. Barriers included lack of access to business expertise and resources, and the tension between growing microenterprises and maintaining eligibility for welfare payments. Formal and informal supports were key facilitators. Outcomes experienced included additional income, skills development, increased confidence and engagement in meaningful activities. CONCLUSION Additional research is required to develop an evidence base which may support investment in this employment pathway, making microenterprise more accessible to people with intellectual disabilities.

Dating agencies are a small, but growing sector of social care provision for people with intellectual disabilities. The research reported here is the first to explore, with 10 specialist agencies in the UK, why they were set up, how they operate, the barriers and problems they encounter and their success or otherwise in facilitating relationships for people with intellectual disabilities. A strong case is made for the proliferation of such services.

This article presents how young adults with intellectual disability (ID) from Sri Lanka, who had not previously used the Internet, interacted with Google search while enhancing their web search abilities throughout three web search workshops. Considering the little attention paid to the learning needs of people with ID in the current offering of web search learning tools, we iteratively developed a suite of learning tools to support our participants when they need help in the web search workshops. We employed an iterative participatory approach, with observations and semi-structured interviews, to reflect on how to design eLearning tools that enhance the participants’ interactions with web search. The qualitative thematic analysis resulted in five distinct themes on strategies to support, build on, and develop the abilities of young adults with IDs as they engage with Google search in their native language: application of existing abilities, basic skills to match learning needs, conceptual understanding, animations to facilitate visual memory, and promoting active engagement. These themes will be a starting point for understanding participants’ learning needs and behavior on web search, which would be important for future research on learning support as well as on software design.

Rationale This paper concerns mortality and needs for end-of-life care in a population of adults with ID living in generic care homes. Methods Various sampling strategies were used to identify a difficult to find a population of people with ID in generic care homes. Demographic and health data were obtained for 132 people with ID. This included the Surprise Question. At T2, 12 months later, data were obtained on the survival of this sample. Findings The average age was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. Responses to the Surprise Question indicated that 23.3% respondents might need EoLC. At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%). Implications The implications for end-of-life care and mortality research are discussed.

People with intellectual disabilities (PID) experience the same range of sexual thoughts, feelings, desires, and activities as anyone else. However, the public’s view, especially about stereotypes, is noticeable to have an impact on sexuality and people with disabilities, thereby influencing the population which includes the families of PID, healthcare professionals, and policymakers. This review aims to analyze the opinions of public, family of PID or care staff on the sexuality of PID and the methodology applied. Eleven quantitative peer-reviewed papers were identified. Participants’ attitude could be evaluated as a binary classification of either “Restrictive” or “Acceptance” in four aspects. Demographic background and the conditions of the PID were found to have an influence on people’s attitudes. People acknowledge that PID are not asexual but generally the public holds a more accepting attitude towards the sexuality of PID when compare with family of PID or care staff. Further research on this attitude gap is particularly essential, as this will contribute valuable information and provide insight to policymakers on handling the social, legal and ethical concerns about the sexuality of PID.

This article discusses a scoping review of position papers aimed at enhancing the quality of life of people with intellectual disabilities. It describes the approach taken to conducting the scoping...

© 2021 The Authors. This is an open access article under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care faci...

Violence and abuse against people with intellectual disabilities are internationally recognised as a pervasive social problem. Recent years have seen the development and implementation of preventat...

Contains fulltext : 229877.pdf (Publisher’s version ) (Open Access) BACKGROUND: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings' health-promoting capacity starting with identifying protective or promotive factors that sustain health. METHOD: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities. RESULTS: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways "people" can support, (ii) assets in/around "places," and person-environment fit, and (iii) "preconditions": health care, prevention, budget, and policy. CONCLUSION: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings.

Contains fulltext : 225896.pdf (Publisher’s version ) (Open Access) 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.

Purpose Mental health courts (MHCs) may enable better support for people with intellectual disabilities (ID) within the criminal justice system (CJS) but little evaluative empirical evidence is available regarding their operation. The purpose of this paper is to explore professional perceptions of the challenges of including people with ID in a targeted services court (TSC) designed for people with mental health issues and ID. Design/methodology/approach Information was gathered, via interviews and focus groups, from 46 professionals working with people with mental health issues and ID within the TSC. Data were analysed by using thematic network analysis. Findings Findings highlight the neglect and lack of inclusion of people with ID within the TSC processes, with challenges in identifying people with ID, stakeholder awareness, inconsistent adapting of practices for people with ID and information transfer underpinned by the involvement of numerous organisations with differing agendas. Research limitations/implications Although valued, development of a TSC, including people with ID, was a challenging endeavour and may reflect societal and institutional neglect of people with ID, recommendations are provided. Originality/value This study adds to the few investigations that have considered the process of including people with ID in a TSC from the perspective of those working in the CJS.

Contains fulltext : 249089.pdf (Publisher’s version ) (Open Access) BACKGROUND: Primary care providers require accurate evidence on chronic disease prevalence in people with intellectual disabilities in order to apply this information into practice. This study aimed to map the broadness of literature on chronic disease prevalence in people with and without intellectual disabilities, and to explore main characteristics of these studies. METHOD: A scoping review of peer-reviewed literature was conducted, covering 2000 to February 2020, including literature that discussed chronic disease prevalence in people with and without intellectual disabilities, with similar data collection method for both groups. RESULTS: Nineteen studies were included. Chronic disease prevalence varied considerably between people with and without intellectual disabilities. Studies differed in their methodologies, country and age groups that were enrolled. CONCLUSIONS: Primary care providers should interpret results on disease prevalence among people with intellectual disabilities in light of the study characteristics. Researchers should always interpret prevalence rates in the context of methodology.

While health care for people with an intellectual disability in Australia has transitioned from institutional specialisation to a mainstream primary care model, access and quality of health care in...

People with intellectual and developmental disabilities (PWIDD) who are victims of physical or sexual abuse are interviewed at Barnahus as part of a police investigation in Norway. Barnahus is resp...

Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research e...

Background: Building Circles of Support is an innovative strategy for developing natural support networks. This study explored some of the ambiguity in the conceptualisations, operational elements, and perceived outcomes of Circles of Support programs. Method: A comparative case study of three Australian Circles of Support programs was conducted. Data included document review and qualitative interviews with 27 key stakeholders. Qualitative analysis of the data from each program was analysed using categories of the program logic as a conceptual framework, followed by cross-case analysis to identify commonalities and differences. Results: Findings show conceptual variability between programs, which shared similar overarching intents but differed in program, strategies, target population and outcomes, which were shaped by the missions of the organisation of which they were part. Conclusion: Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities.

In the light of the Corona Virus pandemic which prematurely killed an unknown number of disabled people, the main purpose of this Current Issue paper is to raise questions about how historians can ...

Purpose Recent guidelines from the National Institute of Health and Care Excellence highlight that service users (SUs) with intellectual disabilities and co-occurring mental health problems rarely get the opportunity to share their experiences of mental health services. Over the past 20 years, policy documents have stated that these individuals (SUs) must be included in decisions about their care. Research suggests that often this is not the case. Therefore, this paper aims to create a space for SUs to share their experiences of mental health services, and what they found helpful. Design/methodology/approach A focus group was held with five SUs, two psychologists and two researchers. The audio recording of the discussion was transcribed and analysed using thematic analysis. Findings Three main themes were identified, namely, “relationships with others”, “inclusion and communication” and “challenges”. This focus group highlighted that although some SUs felt supported, they reported having little control in their lives and wanted to be listened to. Research limitations/implications Including a SU in the planning and facilitation of the focus group would have made this research more inclusive. Practical implications The implications of this research suggest that by listening to and involving SUs and developing more person-centred services, recovery rates may increase as the services provided would be more targeted. Originality/value Very little research has previously been conducted to explore SUs’ experiences. This paper highlights the value of being heard and the knowledge that is often lost if the authors do not take the time to listen to the people for whom a service is designed.

Background A preponderance of behavioural symptoms is assumed to be the main difference in the manifestation of symptoms of post‐traumatic stress disorder (PTSD) in people with intellectual disability (ID). However, no study so far has assessed the relationship between challenging behaviour (CB) and PTSD. The present study aims to explore this relationship by exploring whether CB is directly related to trauma exposure or whether this relationship is mediated through core symptoms of PTSD. Methods Trauma exposure and current symptoms of PTSD were assessed in 43 adults with mild to moderate ID. Parallel versions were administered to 43 caregivers, including the Aberrant Behaviour Checklist to measure CB. Bayesian mediation analyses were conducted using self‐rated and informant‐rated data. Results The self‐report data showed no associations of CB with trauma exposure or PTSD symptoms. The association between informant‐rated trauma exposure and irritability was mediated by severity and frequency of PTSD symptoms. The associations between informant‐reported trauma exposure and the Aberrant Behaviour Checklist subscales hyperactivity and inappropriate speech were mediated by PTSD symptom severity. Conclusions The relationship between trauma exposure and CB was mediated by PTSD symptoms. PTSD core symptoms should be considered as underlying causes of CB, highlighting the necessity to explore trauma biography and symptoms of PTSD. The improvement of self‐report assessment in people with ID is an important task for future studies.

Background and PurposeThe Health Risk Screening Tool (HRST) is a 22-item instrument specifically designed to assess the health risk of persons with developmental disabilities. The predictive validity of the HRST was investigated by examining its ability to predict mortality.MethodsThe sample consisted of 12,582 people with an intellectual or developmental disability residing in Georgia (U.S.). Data were analyzed using survival analysis (Kaplan–Meier estimate and Cox regression) and a binary logistic regression.ResultsAll models supported the prognostic value of the six-level health risk classification. The Kaplan–Meier procedure showed clear separation among functions. The Cox proportional hazard regression revealed that hazard is inversely related to the health risk level, even after controlling for potential confounding by gender, ethnicity, and race.ConclusionsThe HRST can predict mortality. Therefore, it can serve as a basis for establishing healthcare needs and determining nursing care acuity.

ObjectiveTo review and synthesise evidence on rates of respiratory-associated deaths and associated risk factors in the intellectual disability population.DesignSystematic review and meta-analysis.Data sourcesEmbase, CINAHL, ISI Web of Science (all databases including Medline) and PsychINFO were searched for studies published between 1st January 1985 and 27th April 2020 and examined study and outcome quality. Reference lists and Google Scholar were also hand searched.ResultsWe identified 2295 studies, 17 were included in the narrative synthesis and 10 studies (11 cohorts) in the meta-analysis. Data from 90 302 people with intellectual disabilities and 13 808 deaths from all causes in people with intellectual disabilities were extracted. Significantly higher rates of respiratory-associated deaths were found among people with intellectual disabilities (standardised mortality ratio(SMR): 10.86 (95% CI: 5.32 to 22.18, p2=99.0%.ConclusionPremature deaths due to respiratory disorders are potentially avoidable with improved public health initiatives and equitable access to quality healthcare. Further research should focus on developing prognostic guidance and validated tools for clinical practice to mitigate risks of respiratory-associated deaths.PROSPERO registration numberCRD42020180479.

BackgroundPeople with intellectual disabilities experience barriers regarding sexual health education. Nursing education insufficiently addresses the care of people with disabilities. Sexual health promotion is a teaching opportunity for nursing students.ObjectiveNursing students aimed to improve sexual health literacy among people with intellectual disabilities through educational seminars.ResultsGender-matched group education conducted for people with intellectual disabilities in their home setting enhanced sexual health literacy.Discussion/ConclusionsPeople with intellectual disabilities are at risk for sexual abuse and may possess insufficient information compared to their peers without disabilities. Sexual health promotion education for people with intellectual disabilities should occur on a regular basis.

Purpose Little is known regarding what assistive technology (AT) exists and how it is used in welfare services for people with intellectual disabilities (ID). This study aimed to explore healthcare staff's perspectives and insights regarding AT in daily support and welfare services for people with ID. We also sought to explore the associations between the use of AT and workplace-related factors and background characteristics (e.g., gender, age, and experience). Materials and methods Three focus group discussions were conducted with 11 informants (8 women, 3 men) working in home-based and day services. Also, 176 healthcare staff (43 men, 133 women) who worked in municipal home-based services and day services completed a questionnaire comprised of background questions and 14 items with a five-point answer scale. Results Number of years using AT was positively associated with a positive attitude and use of AT among the staff. Staff were mainly positive towards AT and believed that it could represent various possibilities in the everyday lives of people with ID and their own service delivery. However, the staff expressed uncertainties and ethical concerns regarding AT, and they experienced a lack of knowledge, focus, and awareness about technology in services for this group. The quantitative results mainly showed positive associations between believing in AT's usefulness and using it in services for people with ID. Conclusions The findings indicate that providing equipment and resources, personal interests, and staff attitudes are essential factors in successfully implementing AT for people with ID.Implications for rehabilitationHealthcare staff have a positive attitude towards using AT for people with intellectual disabilities, but they also perceive uncertainty and ethical concerns.The staff believe that there is a broad range of AT devices and systems available that can support the independence and participation of people with intellectual disabilities.The staff need to receive more training and technical supports from their workplace and AT-related experience is associated positively with the use of assistive technology by the staff.

The aim of this paper is to analyse the ethical issues relating to privacy that arise in smart homes designed for people with dementia and for people with intellectual disabilities. We outline five different conceptual perspectives on privacy and detail the ways in which smart home technologies may violate residents’ privacy. We specify these privacy threats in a number of areas and under a variety of conceptions of privacy. Furthermore, we illustrate that informed consent may not provide a solution to this problem. We offer a number of recommendations that designers of smart homes for people with dementia and people with intellectual disabilities might follow to ensure the privacy of potential residents.