Search

Background: People with intellectual disabilities remain disadvantaged in many aspects of everyday life. Capability approach is an underused approach in social care research and has at its core the importance of having capabilities or opportunities to do what we value. We use this approach to explore how people with intellectual disabilities can be supported to lead flourishing lives., Methods: Interviews and focus groups were conducted with 50 people with intellectual disabilities and 28 family carers. Data were analysed using an adapted template approach and conceptual analysis., Results: Our analysis led to the identification of one overarching theme; 'Doing what you love and growing' and sub-themes; 'Choice, opportunity and empowerment', 'Being out in the world' and 'Lowered expectations and static lives'., Conclusion: People with intellectual disabilities can lead capability-deprived lives. Methodological and practice innovation is needed to better understand what people value and ensure they have capability sets that enable flourishing lives., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

Background: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life?, Method: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses., Results: The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life., Conclusions: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements., (© 2024 The Author(s). Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.)

In people with intellectual disabilities research and policy are often still focused on risks or the prevention of risks. Research on the process of resilience is in its infancy in the care for people with intellectual disabilities. In the current study, applying a guided photovoice procedure, people with intellectual disabilities were asked what helped them to deal with adverse events. Additionally, informants from their social network were asked to reflect on this question. The following sources of resilience were identified: acceptance, autonomy, beautiful memories, perseverance, physical wellbeing, positive emotions, social skills, spirituality, activities, a home and the social network. Our findings provide practical guidelines for clinicians to talk about resilience with people with intellectual disabilities. Suggestions for future research are made that will contribute to the process of resilience and inclusion of people with intellectual disabilities., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

The Down syndrome (DS) phenotype is usually characterized by relative strengths in non-verbal skills and deficits in verbal processing, but high interindividual variability has been registered in the syndrome. The goal of this study was to explore the cognitive profile, considering verbal and non-verbal intelligence, of children and adolescents with DS, also taking into account interindividual variability. We particularly aimed to investigate whether this variability means that we should envisage more than one cognitive profile in this population. The correlation between cognitive profile and medical conditions, parents' education levels and developmental milestones was also explored. Seventy-two children/adolescents with DS, aged 7-16 years, were assessed with the Wechsler Preschool and Primary Scale of Intelligence-III. Age-equivalent scores were adopted, and Verbal and Non-Verbal indices were obtained for each individual. The cognitive profile of the group as a whole was characterized by similar scores in the verbal and non-verbal domain. Cluster analysis revealed three different profiles, however: one group, with the lowest scores, had the typical profile associated with DS (with higher non-verbal than verbal intelligence); one, with intermediate scores, had greater verbal than non-verbal intelligence; and one, with the highest scores, fared equally well in the verbal and non-verbal domain. Three cognitive profiles emerged, suggesting that educational support for children and adolescents with DS may need to be more specific., (© 2022. The Author(s).)

Students' resilience in a postsecondary program for individuals with an intellectual disability impacted by the COVID-19 disruption and the challenges they faced during this time was captured in the context of social network analysis interviews that included students' and families' experiences as they managed the pandemic. Students' experiences spoke to their resilience in using the skills they gained through the program to navigate the COVID-19 disruption even though it was sometimes tricky. Parents' experiences revealed their increased confidence and sense of pride in their adult children when they observed growth in independence, self-determination, and familiarity with technology. Innovative and engaging instructional practices and e-mentoring support offered by peer mentors motivated students in their academics and encouraged their social development during this time. Student and parent experiences offer hope that young adults with an intellectual disability can gain skills in a postsecondary program that better prepares them to meet life's challenges.

The present paper describes the conceptual basis of evidence-based classification of para-athletes with intellectual impairment (II). An extensive description of the theoretical and conceptual foundation of the system as currently conceived is provided, as are examples of its applications in the three sports included in the Paralympic programme for II-athletes in 2020 (i.e., athletics, swimming and table tennis). Evidence-based classification for II-athletes is driven by two central questions: i. How can intellectual impairment be substantiated in a valid and reliable way, and ii. Does intellectual impairment limit optimal sport proficiency? Evolution of the system and current best practice for addressing these questions are described, and suggestions for future research and development are provided. Challenges of understanding and assessing a complex (multifaceted and intersectional) impairment in the context of sport also are considered.

Background: As the world battles COVID-19, there is a need to study the perceptions of people with intellectual and developmental disabilities (IDD) about the effects of the pandemic and associated lockdown on their lives. This work explores the perceptions of Spaniards with IDD during the lockdown with respect to four topics: access to information, emotional experiences, effects on living conditions and access to support., Methods: The topics were explored using a subset of 16 closed-ended questions from an online survey. In total, 582 participants with IDD completed the survey. The frequencies and percentages of responses to the questions were calculated, and chi-square tests performed to explore the relationship between participants' sociodemographic characteristics and responses. Given that people differed in the way in which they completed the survey, the relationship between participants' responses and completion method was also analysed., Results: Participants reported that the pandemic and subsequent lockdown have had a deleterious effect on their emotional well-being (around 60.0% of participants) and occupations (48.0% of students and 72.7% of workers). Although access to information and support was reportedly good overall, being under the age of 21 years and studying were associated with perceptions reflecting poorer access to information (V = .20 and V = .13, respectively) and well-being support (V = .15 and V = .13, respectively). Being supported by a third party to complete the survey was consistently related to perceptions of worse outcomes., Conclusions: The study yielded data on the perceptions of people with IDD regarding the effects that COVID-19 and the subsequent lockdown have had on their lives. Suggestions on how to overcome the difficulties reported and future lines of research are discussed., (© 2021 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

The Research in the field of mental health and educational needs of children with intellectual disabilities has increased over the years. However, the focus on milder disabilities such as mild intellectual disability and borderline intellectual functioning (MBID; intelligence quotient: 50-85) is still limited. The current study aimed at understanding peer victimization and its relationship to the self-esteem of children with MBID in regular and special schools. The study utilized a cross-sectional research design with a sample of 40 children who met the inclusion criteria. On analysis, the results showed that peer victimization was more common in regular schools ( U = 51, p ≤ 0.001), wherein the peer victimization had a significant negative correlation with their self-esteem ( r = -0.536, p ≤ 0.001). Overall, the findings implied the need for promotion of inclusive education in regular schools by sensitization against peer victimization of children with disabilities.

Background/purpose: Because of the spread of novel coronavirus disease 2019 (COVID-2019), preventive COVID-19 infection behaviors become important for individuals, especially those who are vulnerable. The present study proposes a model to explain the preventive COVID-19 infection behaviors among people with mental illness in Taiwan., Methods: A cross-sectional design was carried out and 414 patients with mental illness (230 males [55.6%]; mean age = 46.32 [SD = 10.86]) agreed to participate in the study. All the participants completed the Preventive COVID-19 Infection Behaviors Scale, Self-Stigma Scale-Short, Believing COVID-19 Information Scale, Fear of COVID-19 Scale, and Depression Anxiety Stress Scale-21. Regression models and structural equation modeling (SEM) were applied to examine the factors associated with preventive COVID-19 infection behaviors., Results: Both regression models and SEM showed that trust in COVID-19 information sources (standardized coefficient [β] = 0.211 in regression; β = 0.194 in SEM) and fear of COVID-19 (β = -0.128 in regression; β = -0.223 in SEM) significantly explained preventive behaviors among individuals with mental illness. The SEM further showed that fear of COVID-19 was significantly explained by trust in COVID-19 information sources (β = 0.220) and self-stigma (β = 0.454)., Conclusion: Based on the results, healthcare providers should help individuals with mental illness reduce self-stigma and fear of COVID-19 which would consequently improve their preventive COVID-19 infection behaviors. Moreover, improving trust in COVID-19 information sources for individuals with mental illness may be another method to improve their preventive behaviors., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest relevant to this article., (Copyright © 2020 Formosan Medical Association. Published by Elsevier B.V. All rights reserved.)

This study aimed to investigate the experiences of people with intellectual disability (ID) using information and communication technologies (ICTs) and the ways these technologies foster social connectedness. In partnership with a community mental health organization, this qualitative descriptive study explored the experiences of 10 people with ID using ICTs. Participants described how ICTs Opened the Door to Possibilities in their life - ICTs provided an avenue for connecting with other people, a means to pursue personal interests and a tool for organizing everyday life. Opening the door to possibilities was further understood as movement towards digital inclusion for people with ID, conceptualized as the fit between social opportunity and personal skills. We have identified the prominent role social supports play in creating (and constraining) opportunities for digital inclusion, and that digital inclusion has the potential to enable social connectedness and the development of agency. Consideration of the complex interaction between social opportunity and personal skills, and the mediating influence of supports, will enhance the inclusion of people with ID.

Shame is a trans-diagnostic phenomenon that underlies a variety of mental health difficulties. People with intellectual disabilities (IDs) are reported to be one of the most stigmatized and excluded groups in society and are more likely to experience mental health problems than the general population. Consequently, this group may be at a significant risk of shame-related distress. However, there is a lack of research that investigates the experience of shame in people with ID, and there is currently a lack of interventions targeting shame in people with ID. Two case studies were undertaken to document the experiences of stigma, discrimination, and shame in people with ID and to explore how shame may present in this population. Shame was found to be a significant barrier to social inclusion and to contribute towards poor psychological health in people with ID. The development of interventions that specifically target shame in this population is recommended.

Background: Much remains unknown about the longitudinal health and well-being of individuals with intellectual disability (ID); thus, new methods to identify those with ID within nationally representative population studies are critical for harnessing these data sets to generate new knowledge., Objective: Our objective was to describe the development of a new method for identifying individuals with ID within large, population-level studies not targeted on ID., Methods: We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet the criteria of ID. The three criteria of ID (intellectual functioning, adaptive functioning, and disability originating during the developmental period) were derived from the definitions of ID used by the American Psychiatric Association and the American Association on Intellectual and Developmental Disabilities. The ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations included in the Add Health database from Waves I to III., Results: This method identified 441 adolescents who met criteria of ID and had sampling weights. At Wave I, the mean age of this subsample of adolescents with ID was 16.1 years. About half of the adolescents were male and from minority racial groups. Their parents were predominately female, were married, had less than a high school education, and had a median age of 41.62 years. The adolescents' mean maximum abridged Peabody Picture Vocabulary Test standardized score was 69.6, and all demonstrated at least one adaptive functioning limitation., Discussion: This study demonstrates the development of a data-driven method to identify individuals with ID using commonly available data elements in nationally representative population data sets. By utilizing this method, researchers can leverage existing rich data sets holding potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.

A good life is the ultimate goal of a number of theories and approaches to providing supports and services for people with intellectual disability. This article examines four list theories of a good life for people with intellectual disability. Twelve themes of a good life were identified using a basic or conventional content analysis: higher meaning and purpose, respect, rights, social inclusion and belonging, close relationships, contribution, voice and choice, emotional well-being, growth and development, home, materiality, and health. Remarkable similarities in items between these four list theories suggest a broad underlying consensus as to the basic elements a good life for people with intellectual disability.

In Re: AB (Termination of Pregnancy), the Court of Appeal was asked to consider an assumption made about the future living arrangements of a pregnant patient, and the weight to be ascribed to her wishes and feelings when she had no real understanding of her predicament. This commentary explores the importance of taking into account the perspective of the patient, even if suffering from a mental disorder, and it will analyse the existing common law to show that the weaker the ability of the patient to form her own wishes and feelings, the more appropriate it would be to rely on the remaining evidence., (© The Author(s) 2020. Published by Oxford University Press; All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Young people face significant challenges when managing a mental illness, such as acquiring treatment autonomy, being inexperienced users of the healthcare system and associated peer-related stigma. While medication use can be challenging in its own right, there is comparatively little information about the associated experiences and needs of young people with mental illness, particularly in the Australian context. This exploratory study will provide valuable insight into how this group is currently supported in relation to medication use., Methods: Young people (aged 14-25 years) who had used a prescription medication for any mental illness for a minimum of 2 months were eligible to participate in this qualitative exploratory study. Semi-structured interviews were conducted between October 2017-September 2018 in consultation rooms at two youth-focused mental health support organisations in Brisbane, Queensland. Interview questions explored how participants managed their medication and related experiences. Interviews were transcribed verbatim and descriptively analysed using thematic analysis., Results: Eighteen young people discussed their lived experience during interviews averaging 50 min in duration. Finding the right medication that reduced symptom severity with minimal side-effects was identified as a complex experience for many, particularly when there was a lack of information, support or reduced financial capacity. Young people described a range of strategies to manage medication side-effects, changes and to support routine medication use., Conclusions: Young people persevered with taking medication to manage a mental illness within a healthcare system that does not adequately support this vulnerable population. There remains a clear directive for healthcare professionals to provide credible information that proactively engages young people as healthcare participants, and for policy makers to consider financial burden for this population with limited financial capacity.

Background: The cognitive and behavioural profile associated with autism spectrum disorders (ASD) includes difficulties with social interaction, communication and empathy. Each of these may present barriers to effective participation in sexual offending treatment, leading to poorer outcomes., Method: Semi-structured interviews were conducted with 13 men with autism and an intellectual disability (including the borderline range) who had completed an adapted sex offender treatment programme. Grounded Theory was used to explore the men's experiences of treatment and perceptions of risk., Results: The men's perceptions of sexual risk were inextricably linked to constructs of identity and shaped their opinions of treatment effectiveness. Risk of reoffending was conveyed through narratives of changes in self and circumstances and included notions of blame and culpability., Conclusions: The findings illustrated some clear benefits for men with ASD associated with attending adapted sex offender treatment programmes, including delivery of treatment within groups and opportunities for social development. The study supports the view that difficulties with empathy and cognitive flexibility complicates treatment for sexual offending., (© 2019 John Wiley & Sons Ltd.)

Background: In the UK, little is known about the experience of ex-prisoners with intellectual disabilities., Method: A qualitative study was therefore conducted to investigate what life is like for ten men with intellectual disabilities who left prison at least 9 months previously. Semi-structured interviews were employed to explore the men's views of post-prison life, including opportunities/challenges and support received from services., Results: Through interpretative phenomenological analysis, four over-arching themes were constructed: the nature of support and services, the difficulty of staying out of trouble, the importance of family and the need to act the "tough guy". The participants reported being extremely under-supported. They were often hostile about staff who they felt were too focused on their previous crime., Conclusions: In general, men were very under-supported and the upheavals of post-prison lives appeared to be "normalized" by them. Better understanding of their lives within their social context would benefit their community re-entry., (© 2019 John Wiley & Sons Ltd.)

Background: Recovery is a widely accepted paradigm in mental health care, whilst the correctional and forensic-psychiatric field is still searching for foundations for its implementation. Knowledge regarding recovery of persons with intellectual disabilities in secure contexts is limited. This study assesses recovery needs and resources among persons with intellectual disabilities labelled not criminally responsible and investigates the impact of the judicial label on recovery processes., Methods: A sample of 26 individuals was composed purposively, and in-depth interviews were conducted. Recurrent themes were identified using thematic analysis., Results: Traditional recovery themes emerged from the narratives, next to aspects of recovery in a forensic or correctional context. However, the operationalization and proportional impact are specific for this sample., Conclusions: The social dimension overarches all other recovery dimensions. The integration of an explicit social rhetoric is imperative, including contextual, relational, interactional and societal dimensions. This offers pathways to reverse the traditional, paternalistic model of exclusion and classification., (© 2019 John Wiley & Sons Ltd.)

There is an appropriate increasing focus on the need to ensure the voices of people with intellectual disability are captured as part of assessing individuals' quality of life; however, there remains a lack of a consensus on ways to achieve this. This article describes the development of a self-report measure of quality of life for people with intellectual disability, the 'Mini-MANS-LD', based on the concepts of Maslow's hierarchy of needs. Following use with 33 individuals with intellectual disability, the Mini-MANS-LD was found to have acceptable psychometric properties, including moderate congruent validity and acceptable internal consistency. Administrators' feedback suggested good acceptability and feasibility, and the measure was relatively quick to administer, easy to use and acceptable to service users. Despite a small sample size, this initial study suggests that the Mini-MANS-LD may present a conceptually relevant, feasible and acceptable self-report measure of quality of life for people with intellectual disability.

Introduction: The experiences of Pakistanis with intellectual disabilities (IDs) and their family members have been underexplored empirically., Method: The present study sought to address this gap by understanding the lives of five Special Olympics Pakistan athletes and their guardians through PhotoVoice., Findings: Through thematic analysis, we present the primary theme concerning Pakistan's cultural context that provides an empirical exploration of cultural beliefs about intellectual disability, cultural expectations and support received by people with intellectual disabilities and their guardians., Discussion: We discuss implications for research and practice., (© 2020 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Although interactions among parents and Youth with Mild Intellectual Disability (MID) may be stressful at times, most studies focus on the effects of stressful interactions on the parents. This study considers the Youth's perspective - particularly their beliefs about the reason for the parent's actions as well as how they would respond in the situation. The RA-PD test (American Psychologist, 28, 2015, 107) was administered to 151 transition age youth with MID in Poland. The test includes vignettes that describe common situations in which the parent engages in Domination or Deprecation. The participants coping responses, based on a multi-axial approach developed by Hobfoll (Stress, culture, and community. The psychology and philosophy of stress, 1998, Springer, New York, NY), and attributions toward the parental figure in the scenarios, based on Kelley (American Psychologist, 28, 2015, 107), were coded by judges. Correlations between causal attribution and coping response showed a consistent pattern where positive attributions were associated with prosocial coping and negative attributions were significantly related to antisocial coping. The implications for improving coping, especially for Youth with aggressive and passive tendencies, are discussed., (© 2019 John Wiley & Sons Ltd.)

Background: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support., Methods: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability., Results: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns., Conclusion: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control., (© 2019 John Wiley & Sons Ltd.)

Background: Adults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees., Methods: This paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS-TILDA study (n = 708)., Results: Most people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities., Conclusions: A focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity., (© 2019 John Wiley & Sons Ltd.)

In recent policies, it is assumed that communities welcome the inclusion of young people with intellectual disability. However, little is known about perspectives of young people themselves. This article reports on research that sought to address this gap. Young people with intellectual disability living in three Australian small town communities participated in pictorial mapping and photo-rich methods to explore belonging and exclusion and links between these. Young people's feelings of comfort and safety with local spaces and people were important for their sense of belonging. Emplaced relationships with family and some friends were key to strong belonging, as were positive attachments to disability support workers and spaces. Social exclusion, either from particular places or more generally, was keenly felt. Young people's confidence, willingness to enter social spaces and relationships were magnified by ways that systems responded to their impairment, at worst fracturing their sense of feeling welcome and included.

The aim of this research was to explore perceptions of stigma among people with early- and late-onset Alzheimer's disease and those who support them, using questionnaires ( n  = 44) and semi-structured interviews ( n  = 14). Perceived stigma reporting was low in the questionnaires, whereas interviews revealed higher levels of perceived stigma in the form of unpredictable reactions to diagnosis, feeling stupid and ignorance of the condition among the public. Perceived stigma was managed in similar ways across age groups, focusing on 'being the lucky ones'. Results support the need to further tackle stigma and challenge expectations, particularly given the drive to diagnose people and thereby expose them to stigma.

Background: Inactivity is a major factor contributing to adverse health in people with intellectual disabilities (IDs). While it is generally agreed that physical activity (PA)/sport-based interventions promote cognitive and social development in the general population, little is known about their specific benefits in adults with ID. The aims of this systematic review were (a) to examine the effects of PA/sport-based interventions on intention, motivation and attitude regarding PA/sport participation in adults with ID and (b) to investigate the influence of these psychological factors on behavioural change (e.g. PA level) and quality of life., Methods: A systematic review has been conducted searching four electronic databases (i.e. SCOPUS, Web of Science, PubMed and Cochrane Library). Studies were included if written in English, peer reviewed, had primary research data, and measured intention, motivation, attitude, behavioural outcomes or quality of life., Results: Thirteen articles met our inclusion criteria of which 10 explored the effects of PA/sport as part of a multi-component intervention. Most investigated outcomes were exercise self-efficacy and quality of life. Five studies measured exercise self-efficacy, and four of them found significant changes. One study found a significant improvement in quality of life and another study in life satisfaction. We observed lack of sport-based interventions, few data about people with severe ID and limited psychological measures., Conclusions: Personal and environmental factors are key components of behavioural change. Support of caregivers and individualised instructions may benefit exercise self-efficacy. There is lack of information about the effects of psychological factors on behavioural change and quality of life in adults with ID., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

The quantity and quality of child-directed speech-language nutrition-provided to typically-developing children is associated with language outcomes-language health. Limited information is available about child-directed speech to children at biological risk of language impairments. We conducted a scoping review on caregiver child-directed speech for children with three clinical conditions associated with language impairments-preterm birth, intellectual disability, and autism-addressing three questions: (1) How does child-directed speech to these children differ from speech to typically-developing children? (2) What are the associations between child-directed speech and child language outcomes? (3) How convincing are intervention studies that aim to improve child-directed speech and thereby facilitate children's language development? We identified 635 potential studies and reviewed 57 meeting study criteria. Child-directed speech to children with all conditions was comparable to speech to language-matched children; caregivers were more directive toward children with disorders. Most associations between child-directed speech and outcomes were positive. However, several interventions had minimal effects on child language. Trials with large samples, intensive interventions, and multiple data sources are needed to evaluate child-directed speech as a means to prevent language impairment. Clinicians should counsel caregivers to use high quality child-directed speech and responsive communication styles with children with these conditions.

Background: People with intellectual disabilities are more vulnerable to sexual abuse and are more disadvantaged in the criminal justice system than the general population. However, little is known about the experiences of people with intellectual disabilities who have allegedly been victims of sexual abuse and also been witnesses in court., Materials and Methods: This study used semi-structured interviews and a Grounded Theory approach to examine the experiences of four people with intellectual disabilities and four carers/supporters who had all attended trials., Results: Findings showed that after the traumatic incident of abuse, a court experience could become a secondary source of trauma. Experience of this trauma was dependent on the quality and quantity of support people received and the understanding of intellectual disabilities amongst the legal participants., Conclusion: The findings argue for better training for legal participants who are in contact with vulnerable witnesses and better support structures for alleged victims., (© 2017 John Wiley & Sons Ltd.)

Background: In recent years, increased attention has been directed towards the importance of identifying the future goals of people with intellectual disability (ID) and promoting their abilities to design their future. Consistent with these, the first aim of this study is to investigate the future goals of people with ID in terms of content and temporal distance. Moreover, the second aim of this study is to test the predictive role of self-determination on the number of future goals reported by people with ID., Methods: In this study, 96 young adults with ID were involved and a mixed method design was chosen. Specifically, qualitative procedures (consensual qualitative analyses) and quantitative procedures (structural equation modelling) were carried out., Results: The results showed that the future goals of people with ID are characterised by different factors related to autonomy, health/well-being, interpersonal relations and personal growth. Moreover, self-determination (assessed with Self-Determination Questionnaire-Version for Adults) predicts a higher number of future goals reported by people with ID., Conclusions: These results suggest the importance of providing adequate support to the development of self-determination., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

A primary care physician meets a new patient who has an intellectual disability and is suicidal in the wake of the death of her elderly parent who served as her caretaker. As their physician-patient relationship evolves, the physician comes to wonder at the health care system's failure to anticipate and take steps that would propagate a safe transition in care for adults in similar circumstances.

Background: This study explored understandings that service-users with intellectual disabilities and challenging behaviour held around their behaviour, what shaped these understandings, and the relationship between how behaviours are managed and well-being., Methods: Eight participants (three female, five male) partook in individual semi-structured qualitative interviews. Interviews were transcribed and analysed using interpretative phenomenological analysis., Results: Three master themes emerged from this analysis: (a) challenging behaviour can be explained via an internal or external frame of reference, with each framework having different implications for how participants attempted to manage behaviour. (b) Positive relationships provide a long-term buffer to challenging behaviour, with positive relationships with family, staff and peers operating through different mechanisms to achieve this. (c) A greater ability to exert power and control in day-to-day life was perceived to reduce challenging behaviour in the long term., Conclusions: Implications for practice are discussed., (© 2019 John Wiley & Sons Ltd.)

Background: Persons with mild to borderline intellectual disabilities generally show dysfunctions in mentalization and stress regulation, resulting in problematic social relationships and personal distress. Intervention programs may improve mentalizing abilities. The aim of this study is to examine the effectiveness of the serious game 'You & I' in changing mentalizing abilities and stress regulation in adults with mild to borderline intellectual disabilities., Methods: A two-arm, parallel, superiority randomized controlled trial will be used with 172 adults with mild to borderline intellectual disabilities. Participants will be randomly assigned to either the experimental group to play the serious game 'You & I' or a waitlist control group. Participants will be assessed at baseline, post intervention (5 weeks after baseline), and follow-up (6-8 weeks after post intervention). They also will fill in questionnaires for personal factors, personal development, personal well-being, social validity, autism spectrum quotient (demographic variables), mentalizing abilities (primary outcome measure), and stress regulation (secondary outcome measure)., Discussion: The serious game 'You & I' aims to improve mentalizing abilities in adults with mild to borderline intellectual disabilities, which is expected to lead to improved regulation of stress in social relationships. The study's unique feature is the use of a serious game to improve mentalizing abilities. If the intervention is effective, the serious game can be implemented on a broad scale in Dutch care organizations for people with intellectual disabilities as an effective preventive tool to improve mentalizing abilities., Trial Registration: Netherlands Trial Register, NTR7418 . Registered on 2 August 2018.

Background: The subtle communicative behaviour of individuals with visual and severe/profound intellectual disabilities hinders the success of their interaction with professional caregivers. The bioresponse system, a tool to raise caregivers' awareness of the client's communicative behaviour, may improve the client's joint attention behaviour and the dyad's affective mutuality., Method: Four client-caregiver dyads participated in a randomized multiple baseline study with repeated baseline, intervention and follow-up observations. The bioresponse system's effect was evaluated with measures of joint attention and affective mutuality., Results: Two clients showed a significant difference on one or two joint attention subscales (including one significant decrease), and for all clients, at least one joint attention subscale revealed a positive trend. Positive trends in affective mutuality scores were observed in two dyads., Conclusions: The results stress the importance of further research to the effects of using the bioresponse system's in daily care for persons with severe/profound intellectual disabilities., (© 2019 John Wiley & Sons Ltd.)

Background: The move to community support for all people with intellectual disabilities is an aspiration with international significance. In this article, we draw on rich accounts from women with intellectual disabilities detained under the Mental Health Act (E&W) 1983 and staff at an National Health Service secure setting in England to explore how "moving on" is defined and perceived., Methods: The study reports on an ethnographic study using the field-notes and the 26 semi-structured interviews with detained women and staff on three wards., Results: We first explore staff conceptions of moving on, which include behavioural change and utilizing coping strategies. Then, we discuss the areas of analysis that women discussed: taking back responsibility, success in arranged relationships, acceptance of regime and resistance to progression., Conclusion: The concepts of moving on were not determined by the women but by the service. We recommend further research which explores women's own rehabilitation requirements., (© 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.)

Background: Emerging evidence indicates effectiveness of dialectical behaviour therapy (DBT) for people with intellectual disabilities (PWID) in forensic settings; however, little is known about "what works" facilitating engagement and change., Methods: Eleven interviews were conducted with nine service users across two secure inpatient services. Grounded theory was used to develop a model of perceived engagement and change., Results: The model provides insights into how change occurs during DBT delivered in forensic settings. DBT constitutes a challenging journey, yet provides the motivation and means to address individual's intra-/interpersonal aggression and progress towards release. Participants experienced engaging with DBT as difficult and coercive, moving from compliance and avoidance to acceptance and change. Key factors included participants' motivation, beliefs about safety and ability to change, and interactions with staff., Conclusion: Recommendations are made for increasing intrinsic motivation, reducing perceived coercion and distress, and for future research to address potential aversive elements and enhance effectiveness., (© 2019 John Wiley & Sons Ltd.)

Aim: Very little attention has been paid to the views and experiences of young people with mild intellectual disabilities on the broad topics of adulthood and adult identity. The following study was undertaken to explore how young adults with mild intellectual disabilities conceptualize, relate to, and experience the process of transition., Method: Eight young adults with mild to borderline intellectual disabilities participated in semi-structured interviews. Results were analysed using interpretive thematic analysis., Results: Two umbrella themes were identified: "On a developmental pathway" and "Negotiations in the environment"., Conclusions: The participants concerns were surprisingly similar to those commonly expressed by young adults without disabilities. Self-perceived adult identity appeared to be affected by the participants' personal definitions of adulthood, as well as by social comparisons with both peers and adults. Finally, while concerns were expressed about their capacity to cope with responsibility, most felt optimistic about adopting full adult status in the future., (© 2019 John Wiley & Sons Ltd.)

A natural experiment contrasted the social relationships of people with intellectual disabilities ( n = 110) before and after they moved from congregated settings to either personalized accommodation or group homes. Contrasts could also be drawn with individuals who had enduring mental health problems ( n = 46) and who experienced similar moves. Face-to-face interviews were conducted in each person's residence on two occasions approximately 24 months apart. Multivariate statistical analyses were used to determine significant effects. Greater proportions of people living in personalized settings scored higher on the five chosen indicators of social relationships than did persons living in grouped accommodation. However, multivariate statistical analyses identified that only one in five persons increased their social relationships as a result of changes in their accommodation, particularly persons with an intellectual disability and high support needs. These findings reinforce the extent of social isolation experienced by people with disabilities and mental health problems that changes in their accommodation only partially counter.

Purpose: To evaluate the feasibility of a student-mentored community-based exercise program for youth with disability., Method: Nineteen youth (nine female; mean age 18 years) with disability (seven cerebral palsy, six Down syndrome, three spina bifida, two autism spectrum disorder, one spinal cord injury) were recruited. Each participant was matched with a student mentor and exercised twice a week for 12 weeks at their local gymnasium. Five domains of feasibility were assessed: demand, implementation, practicality, limited efficacy testing, and acceptability., Results: Demand comprised 55 expressions of interest. Demonstrating evidence of implementation, 91% of scheduled sessions were attended and training fidelity (comparing training load in weeks 1 and 12) showed exercise intensity significantly increased for strength and aerobic exercises. The program was practical with no major and 17 minor adverse events (e.g., muscle soreness). Limited efficacy testing was demonstrated by increased arm (4 kg, 95% CI: 1-7) and leg strength (43 kg, 95% CI: 24-62), walking endurance (80 m, 95% CI: 24-137), and improvement in three dimensions of health-related quality of life (autonomy, physical, and psychological well-being). The program was accepted very positively by participants., Conclusions: A student-mentored community-based exercise program feasibly engages youth with disability in community-based exercise. Implications for Rehabilitation A 12-week community-based student-mentored exercise program for youth with disability is feasible. Exercising in a real-world setting with a student mentor has a positive effect on physical and psychological well-being of youth with disability.

Objective: To help increase the confidence of both caregivers and clinicians in providing palliative care to adults with intellectual and developmental disabilities (IDD) using an easy-to-follow framework to improve and overcome barriers to effective palliative care in this population., Quality of Evidence: A literature review was conducted to explore recent best evidence to address these palliative care needs and to allow for a focused opportunity to consider the details of implementing clinical practice guidelines in the palliative care context. Evidence ranges from level I to level III., Main Message: Pain and psychological and emotional distress are important issues for individuals with IDD, as they can be difficult to assess and measure, and often present atypically, especially in those with limited communication skills. Further, little is known about end-of-life needs in the adult population with IDD, especially for those living in community residences. The conducted literature review of patient, caregiver, and clinician experiences exposed considerable barriers, including incorrect assumptions about patients' capacity to understand and discomfort of both caregivers and clinicians with open communication. This has resulted in exclusion of adults with IDD from their own care, which has proven harmful. Maximizing time in familiar surroundings and establishing trust and continuity are crucial. Sometimes trial and error with empiric use of comfort medications is necessary, but this can be mitigated with careful examination of distress patterns and judicious use of diagnostic testing. It is always best to integrate the palliative approach into the existing pattern of care., Conclusion: The validated tools and recommendations provided will assist with communication, symptom interpretation, treatment decisions, advanced care planning, addressing grief, and important considerations in end-of-life care., (Copyright© the College of Family Physicians of Canada.)

Background: Schools are expected to be an environment where children can reach their fullest potential and develop their talents, personality, as well as their mental and physical abilities. Children with disabilities often have restricted participation and lower achievement in school. The aim is to investigate if there are any differences in participation and achievement in school between adolescents, with and without self-reported neuropsychiatric disabilities, and to explore the relations between achievement and participation., Methods: A cross-sectional study was carried out based on data collected from 1520 adolescents in the sixth and seventh grade, from the south of Sweden. Multiple logistic regression was conducted to explore the relationship between having a neuropsychiatric disability, with participation and achievement, and how different factors affected this relationship., Results: Having a self-reported neuropsychiatric disability increases the likelihood of having restricted participation (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.99-4.23) and lower achievement in school (AOR: 2.94; 95% CI: 2.06-4.24). These adolescents were also more likely to have negative relationships to their teachers, be bullied, have poorer connectedness to their parents, come from families with less money, be trying drugs and be male, in comparison to the adolescents without a neuropsychiatric disability. The odds of having lower achievement increased with lower engagement and absenteeism from class., Conclusions: Adolescents with self-reported neuropsychiatric disabilities have a disadvantaged situation in school, and are exposed to factors that could have long-term negative effects. More longitudinal research is required to conclude what factors are causing restricted participation and low achievement.

Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.

Aim: This study explored patterns of service use and associated socioeconomic factors among Chinese elders with mental disabilities., Methods: Data from the second China National Sample Survey on Disability (CNSSD) were used in this study. Univariate and multivariate logistic regression models were used to calculate the odds ratios and 95% confidence intervals for factors associated with utilization of mental health services among Chinese elderly people with a mental disability., Results: Among elderly people with a mental disability in the CNSSD, 46.35% had used mental health services. Urban residence, higher education level, being married, medical insurance coverage, and higher annual family income per capita were associated with more utilization of mental health services., Conclusions: This study revealed a low level of mental health service utilization among the Chinese population with mental disorders or a mental disability. Strategies to improve the insurance coverage of mental healthcare, to increase public awareness of mental disorders, and to reduce regional inequality of mental health resources are warranted.

Students with intellectual and developmental disabilities (IDD) have joined the ranks of college students in pursuit of personal independence, community integration, and employment. To achieve these aims, there is a need for a strong understanding of the college experience for students with IDD, including identification of the academic, social, and personal challenges they face as well as the supports that are available to address those challenges. This research provides preliminary insights into the college experience for students with IDD by comparing the perceptions, attitudes, and activities of students with IDD to those of students without disabilities and students with mild learning disabilities (MLD). Our data suggest a number of similarities in the college experience for students with and without disabilities such as similar influences from family and teachers with respect to attending college. In addition, some surprising advantages expressed by students with IDD were found, such as reporting greater ease in developing close friendships than students with MLD. Considerations and discussion on the ways in which students with IDD benefit from the additional supports and services provided to them are also discussed.

Sudden death in patients with severe motor and intellectual disabilities (SMID) is sometimes caused in part by pulmonary thromboembolism (PTE), and deep venous thrombosis (DVT) has drawn attention as a possible embolic source. Warfarin, which is a conventional therapeutic agent, is not easy to control appropriately, and daily management can be especially difficult in SMID patients. On the other hand, edoxaban tosilate hydrate, which has been newly approved for insurance coverage for the treatment of DVT, is not listed in the Guidelines for the Diagnosis, Treatment and Prevention of Pulmonary Thromboembolism and Deep Vein Thrombosis (DVT-PTE guidelines). The aim of this study is to evaluate the efficacy and safety of anticoagulation therapy (warfarin vs. edoxaban) in DVT treatment in SMID patients by means of an open-label, randomized controlled trial. The primary endpoint is the incidence of hemorrhagic events during 12 months of follow up.

Purpose:  Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user's perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation. Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabilities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used. Results: The analysis reveals three themes: "being emotionally touched", "being aware of the other", and "being unclear". Conclusions: The results are discussed in light of normalization and participation in society with independence and one's own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.

Objectives: This study examined relations between comprehensive domains of psychosocial disability and mental disorders to determine (1) whether differential patterns of associations exist between psychosocial disability dimensions and commonly diagnosed mental disorders and (2) whether these relations differ between self-reported and interviewer-rated psychosocial disability domains., Method: Self-reported and interviewer-rated psychosocial functioning measures and an interviewer-rated diagnostic assessment tool were administered to 181 psychiatric outpatients., Results: Internalizing disorders showed the strongest and most pervasive associations with psychosocial impairment across both self-reported and interviewer-rated measures, followed by thought disorder; externalizing showed the weakest associations. More specifically, logistic regression analyses indicated that lower well-being factor score significantly increased the odds of distress-disorder diagnoses, and poor basic functioning increased the odds of PTSD., Conclusions: Results clearly showed differences in the magnitude of associations between three dimensions of psychosocial-disability and commonly diagnosed disorders, and that these differences were similar regardless of rater type., (© 2018 Wiley Periodicals, Inc.)

Background: The literature emphasizes that friendships are essential to youths' successful transition to and adjustment in adulthood. Few studies have explored the friendships of transition-aged youths with intellectual and developmental disabilities (IDD), and even fewer include youths' own perspectives. This qualitative study explored the perspectives of transition-aged youths with IDD regarding their own experiences of friendship., Method: A subset of video-recorded data of 21 interviews with seven participants (20-24 years) was extracted from a larger study for secondary analysis. Data were analysed using thematic analysis, informed by constructivist grounded theory methods., Results: Three themes were revealed: meanings of friends and friendship, deepening self-knowledge and negotiating in(ter)dependence., Conclusions: The findings expand existing knowledge about friendships of transition-aged youths with IDD. Findings can potentially inform development of new services or enhancement of existing services aimed at facilitating transition to adulthood for youths with IDD and point to key areas for future research., (© 2018 John Wiley & Sons Ltd.)

Background: A policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature., Method: Three focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants., Conclusions: Implications for policy, service provision and practice are discussed., (© 2018 John Wiley & Sons Ltd.)

We investigated a continuing education course in creative music making, initiated to promote the inclusion of young people with intellectual disability in a university setting. Despite organizers' attempts to foster diversity within the student cohort, enrolments were almost exclusively from students who had intellectual disability. Being in the university environment, and in a place of higher learning, seemed to be valued by some. However, students' main focus was on group musicking in a dedicated music room rather than interacting with the wider university community. Those who did not identify as disabled believed it was important to continue to address the barriers to wider inclusion. While acknowledging the risks around mediating the social interactions of young people with intellectual disability, we argue that future courses should include activities specifically designed to bring them to classes with typical students and to the wider activities of the university.