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Background: Little is known about how to involve people with intellectual disabilities in making decisions about treatment and care in their palliative phase. We aimed to reach a consensus about a shared decision-making (SDM) conversation aid for people with intellectual disabilities, relatives, and healthcare professionals. Methods: In a Delphi process, an expert panel of 11 people with intellectual disabilities, 14 relatives, and 65 healthcare professionals completed online questionnaires about the relevance and feasibility of a draft conversation aid. Results: In Round 1, components were rated as (very) relevant by 70–98% of participants (M = 87%). In Round 2, after amending the aid in response to feedback, relevance ratings were 67–97% (M = 90%) and feasibility ratings 66–86% (M = 77%). The final version consists of four themes: who are you; illness/end-of-life; making decisions; and evaluating the decision. Conclusion: The consensus-based conversation aid is considered sufficiently relevant and feasible to be implemented in practice.

In this article we explore the personal autonomy of people with intellectual disabilities who require more intensive support. The authors draw on qualitative research in Iceland carried out in the homes of 24 individuals. It is demonstrated how their personal autonomy can be defined, evaluated and enhanced in their daily lives. The conclusions show that to be able to respect personal autonomy of the participants those who support them need to view them as socially embedded, where personal autonomy is formed in relation to other people. To do that we refer to the idea of relational autonomy with support, advocacy and enablement being regarded as key elements for personal autonomy to flourish. By using this approach it is possible to note a positive change regarding respect for the personal autonomy of people with intellectual disabilities who require more intensive support. Considerable advances can still be made, however, in enhancing personal autonomy in their daily lives.

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.

A recovery approach within mental health services has gained momentum. Its meaning for adults with intellectual disabilities recovering from mental health disorders is less understood. Peoples' experiences of recovery were explored to help inform recovery-focused recommendations for clinical practise. A qualitative design using interpretative phenomenological analysis was applied. Nine interviews with people with intellectual disabilities who had experienced mental health disorders were conducted. Two themes that emerged focusing on entry to service and the recovery experience. Subthemes for entry to service included unfair treatment, valuing information and managing expectations. The recovery experience subthemes were therapeutic alliance, self-management, emotional development, autonomy, connectedness, positive identity and a belief in recovery. Hearing peoples' experiences directly allowed the current themes to emerge in the context of living with lifelong disabilities. This article adds to the sparse literature and highlights considerations for recovery-based interventions for people with intellectual disabilities. [Abstract copyright: © 2021 John Wiley & Sons Ltd.]

Background: Generic mental health staff often have contact with people with intellectual disabilities when they access mainstream mental health services. To date, there has not been any research conducted in non-western countries to explore their views. This paper investigates the views and experiences of mainstream mental health professionals regarding the mental health services for people with intellectual disabilities in Singapore. Methods: Eight staff members from generic mental health services were interviewed. Thematic analysis was used to identify main themes. Findings: The main themes are related to their work experiences, perceptions of people with intellectual disabilities, ideal staff characteristics and service recommendations. Conclusions: Participants identified a lack of experience and knowledge when working with this population. They highlighted the challenges they face promoting choice and autonomy for people with intellectual disabilities. The discussion includes recommendations for improving staff knowledge through training opportunities, consideration of non-pharmacological approaches and early collaboration with caregivers during the treatment process.

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...

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 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 discusses the results of project entitled Heritage for all: Perception of the past and archaeo- logical heritage by people with intellectual disabili- ties, which the authors carried out on a group of 14 young individuals who were diagnosed with intel- lectual disabilities. The project aimed to detect how the past is perceived and conceptualized by students with learning and cognitive problems and how we, archaeologists and museum workers, can transfer knowledge about the past to them in a more ap- propriate way. This paper also provides a context for a need for inclusive archaeology as a way of practising archaeology as a discipline of social and cultural value for present-day people. Despite the limited number of people approached during the research and the specific character of education for people with intellectual disabilities in Poland, some conclusions can be drawn. First of all, participants in the project understood the past not as abstract, historical events, but rather as actions related to their personal experiences. Secondly, they remem- bered more about the past when it was shown and explained to them in an active, participatory way.

Purpose Research into culture within intellectual disability services, has predominantly focussed on small group homes in Australia. The current investigation aimed to explore the transferability of the dimensions of culture identified in the literature, to a residential Intellectual Disability service in the UK. The purpose of this study was to better understand the impact of informal culture upon the behaviour of direct care staff, particularly around managing behaviour that challenges. Design/methodology/approach Semi-structured interviews were conducted with direct care staff. Interview transcripts were analysed thematically using template analysis. Findings Themes regarding leadership, perceptions of managers, team functioning, and relationships between direct care staff and service users, were identified, corroborating the existing literature. Additional themes relating to being aware of the risks posed by service users, and the emotional impact of behaviour that challenges, also emerged. Originality/value To the best of the authors’ knowledge, this is the first qualitative study to explore informal culture within a community residential Intellectual Disability service in the UK.

Background People with intellectual disabilities (ID) undertake extremely low levels of physical activity. Aims To enhance understanding concerning low levels of physical activity in people with ID, this study has three aims: (1) to identify barriers to and facilitators of physical activity in people with ID; (2) to examine differences in barriers and facilitators between levels of ID (mild, moderate, severe, and profound); (3) to examine differences in barriers and facilitators between various stakeholder groups. Methods and procedures A systematic search was performed using the following databases from the year 1990: MEDLINE, ERIC, and PsycINFO. The studies included were peer reviewed, available as full text, and written in English, addressing barriers to and facilitators of physical activity in people with ID. The quality of the studies was assessed using existing critical review forms. All studies were subjected to qualitative synthesis to identify and compare barriers and facilitators. Outcomes and results In all, 24 studies were retrieved, describing 14 personal and 23 environmental barriers and/or facilitators. The quality of the studies varied, particularly for qualitative studies. Only two studies included people with severe or profound ID. Stakeholder groups tend to identify barriers outside their own responsibility. Conclusions and implications Results reveal a broad range of barriers and facilitators, but not for people with more severe ID. Further research should also examine these factors among stakeholders responsible for providing support.

Stigma can hamper full inclusion of people with intellectual disabilities in society. For other minority groups, higher levels of familiarity with these groups have been shown to relate to lower levels of stigma, whereby emotions can play a mediating role. However, concerning people with intellectual disabilities, there is limited knowledge regarding the general public’s levels of familiarity, its relationship with stigma, and the role of emotions in this relationship. A cross-sectional survey was conducted among a nationally representative sample of the Dutch population (n = 892). The relationship between levels of familiarity and different measures of stigma representing cognitive, emotional, and behavioral aspects of stigma (i.e., attributions, emotions, discrimination) was examined. Emotions (fear, anger, and sympathy) were studied as a mediator in the relationship between familiarity and discrimination (i.e., social distance, and intention to help). Participants who reported no familiarity in real life with people with intellectual disabilities (30.6% of the population sample) demonstrated higher levels of stigma (attributions, emotions, discrimination) than participants who reported any form of real-life familiarity (69.4% of the sample). Fear was found to be the most important mediator of the relationship between familiarity and discrimination. The findings stress the continuing importance to advocate for people with intellectual disabilities to be recognized and become known within society. This increased familiarity might reduce stigma and increase positive experiences of inclusion. Support workers may have a vital role in this process. The importance of fear in the relationship between familiarity and discrimination may inform future research and antistigma interventions.

The article presents the results of the analysis of differences between men and women in terms of the intensity of stereotypical beliefs about people with intellectual disabilities. In the research, a diagnostic survey method was used, and in the construction of the research tool the Questionnaire of Stereotypical Perception of a Person with Mental Handicap (KSPOUU) by Maria Chodkowska and Beata Szabała (Osoby z upośledzeniem umysłowym w stereotypowym postrzeganiu społecznym, 2012) was used. The research involved 394 students, including 258 women (65.48%) and 136 men (34.52%) attending grades I, II or III of high school. As a result of the analyses carried out, it was found that although the level of intensity of stereotypes in the examined group was not high, they were not strongly rejected either. In addition, it turned out that the results obtained by women suggest that their beliefs about people with intellectual disabilities are less burdened with stereotypes than the beliefs of men. Research has confirmed that gender can be an important variable in analysing the perception of people with intellectual disabilities.

Given the crucial role professionals play in maintaining the well-being of people with intellectual disabilities, their views on work satisfaction are relevant to analyse. A comparative analysis that takes into account the support provided in different welfare organisations can be of certain importance. The aim is to analyse the most common aspects of professional work satisfaction in work with people with intellectual disabilities in schools, healthcare, and social services, and to apply a comparative analysis of such experience taking into account respondents' organisational affiliations. Data were collected using a digital questionnaire. Given the aim of the study, we drew on one open-ended question: 'describe aspects of your work that are most satisfactory for you'. The analysis shows that respondents associated positive work experience with seven aspects: autonomy, competence, nature of the work, collaboration, trust and recognition, work environment, and service users. Findings indicate that discretion is an important facet of work satisfaction among respondents in all three organisations. Flexibility, autonomy in decision-making, the ability to plan and act within certain institutional and legal frameworks, and the ability to prioritise among daily work assignments are empirical examples of this.

People with intellectual disabilities who experience mental health difficulties often have high levels of self-criticism and shame. Compassion-focused therapy is a therapeutic modality effective in working with such feelings. This article follows on from a previous compassion-focused therapy group study exploring the impact of two compassion-focused therapy-based groups on how participants felt about themselves. Utilizing a mixed method design, the study illustrated that participants experienced higher levels of compassion and, overall, saw themselves more favourably by the end of the groups. They were also able to understand the basic concepts of compassion-focused therapy which reinforced previous study findings, suggesting that it is adaptable and clinically useful for people with intellectual disabilities.

More than four decades after the onset of deinstitutionalization in the Nordic countries, people with intellectual disabilities in Iceland are still being prevented from engaging in intimate and sexual relationships. There are changing attitudes towards sexuality based on people’s rights to live free sexual rights. However, because people with intellectual disabilities often require daily support, they commonly lack opportunities for privacy and safe sexual expression and relationships. In this article, we present findings from qualitative research about the sexuality of Icelandic people with intellectual disabilities who require intensive support and communicate with non-spoken language. The aim is to demonstrate how the sexuality of people with intellectual disabilities who require intensive support is shaped by socio-cultural sexual scripts and the support they receive in every-day lives. Participant observations were carried out in the homes and daily lives of 25 individuals, demonstrating their reduced opportunity to make decisions. This can affect how they communicate their identity or the image of masculinity or femininity. As a group, they have limited access to education, work, and leisure and thus few resources to draw upon when forming their own sexual scripts. Therefore, they commonly rely on other people’s sexual scripts, for example those of staff and family. We discuss the pathologization of sexual behaviors and how the sexual expressions of women with intellectual disabilities have remained hidden. The findings also describe the inabilities of social and legal systems in dealing with sexual abuse among people with intellectual disabilities who require intensive support. We suggest that people with intellectual disabilities who require intensive support are seldom consulted about issues relating their personal lives, such as menstruation suppression or who assists them with personal care. We conclude by arguing that it is of vital importance to respect people’s self-determination and language.

A great deal of research has been undertaken during the last few decades regarding the life experiences of young people with intellectual disabilities (ID). However, not much has specifically focused on the friendships of people with ID. This article aims to present the friendship experiences of young people with ID who are in their transition process to adult life. It focuses on their reflections on their own friendships, the presence these friendships have had and still have in their lives, and the strengths and difficulties -if any - in managing their friendships. 11 people aged 17-19 with ID were interviewed individually. This article also intends to identify and analyse those elements that have influenced in the establishment of friendships in the lives of young people with ID, focusing on the role that both professionals and families have had from the perspective of the young people with ID. It also presents the influence that the educational context has had on the friendships of young people with ID

Background Physical‐activity approaches for people with intellectual disabilities (ID) are more likely to be effective and sustainable if they also target direct support professionals' behaviour. However, no tools to measure the behavioural determinants for direct support professionals are available as of yet. This study aims to construct a self‐report tool to measure direct support professionals' behavioural determinants in physical‐activity support for people with ID and to analyse its psychometric properties. Methods The tools' sub‐scales and items corresponded with a proposed conceptual model. A pilot study was carried out to investigate and improve content validity. Construct validity and measurement precision were examined using item response theory models with data from a convenience sample of 247 direct support professionals in the support of people with ID. Results Results supported the three theory‐driven behaviour scales and indicated reasonable to good construct validity. The marginal reliability for the scales ranged from 0.84 to 0.87, and adequate measurement precision along the latent continua was found. Conclusions The tool appears to be promising for measuring the behavioural determinants of direct support professionals for the physical‐activity support of people with ID and has potential as a tool for identifying areas to focus on for interventions and policies in the future.

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.

Systemic advocacy has long been seen as an important tool for advancing the rights of people with intellectual disabilities. The New South Wales Council for Intellectual Disability has been a leadi...

Background Advances in theoretical frameworks of self-determination require the development of new assessment instruments. This study examines the dimensional structure of a self-determination scale and analyses the factorial invariance of its measurement across age and gender. Method The AUTODDIS Scale was used to assess the self-determination of 541 people with intellectual disabilities aged from 11 to 40. Results Different models (correlational and hierarchical structures) of the scale were tested. The correlational model obtained from the exploratory structural equation model approach provided the best fit for the data. The results also supported measurement invariance across youths (aged 11 to 21 years) and adults (aged 21 to 40 years) and across genders. Conclusions This study contributes to international research on self-determination and the development of assessment tools in this field, offering a better understanding of this multifaceted and complex construct. The results provide construct validity evidence regarding a new measurement tool tested across people aged 11 to 40, using information from third parties. However, further research is needed to explore the best ways to understand and assess the different factors related to self-determination.

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.

Background: Due to increased life expectancy, just as with the general population, people with intellectual disabilities are experiencing, and dying from, chronic and life‐limiting conditions. This has led to an increase in the need for end‐of‐life care for people with intellectual disabilities. However, there is limited evidence as to what constitutes good end‐of‐life care from the perspectives of people with intellectual disabilities and their family members. Methods: The study reported here aimed to find out the care needs of people with intellectual disabilities at the end of life in Ireland. A grounded theory approach was employed to explore the perspectives of the participants. After obtaining appropriate ethical approval, 19 semi‐structured individual interviews were carried out with 11 people with mild and moderate intellectual disabilities and eight family members to collect data which was subsequently analyzed through constant comparative analysis. Results: The views of the participants suggested that providing personal care while vulnerable and dying, being with and communicating with the dying person, and meeting their spiritual needs, were considered as being essential at the end of life for people with intellectual disabilities. Conclusion: The findings from this study have shown that people with intellectual disabilities can engage with those around them and demonstrate how they would like to be cared for, and discuss what would be considered as being good care at the end of life.

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...

Services have a duty to uphold the personal and sexual relationship (PSR) rights of adults with intellectual disability. However, little is known about how social care workers' (SCWs) perceptions of public views of intellectual disability and sexuality might affect their attitudes, believes and behaviours towards supporting PSR needs. This exploratory study addresses this gap in knowledge.Qualitative interviews using critical incident technique were conducted with 18 SCWs. Data were transcribed and thematically analysed.Four dominant themes were identified; socio-cultural, practice-policy gaps, fear and safety needs. These highlights how perceptions of public attitudes impact on SCWs' attitudes towards supporting development of PSR both directly and through perceptions of organisational policies. This leads to prioritisation of safety needs over support for PSR.Public expectations strongly influenced SCWs' interpretation of organisational policy, emphasising a need for practice-based support to manage public expectations and reduce fear.

El objetivo del presente estudio fue analizar el impacto de una intervención en educación emocional en un grupo de jóvenes con discapacidad intelectual. Los participantes fueron 16 jóvenes (7 mujeres) con discapacidad intelectual ligera o moderada de edades comprendidas entre los 18 y 28 años (M =24; DT = 3,04) integrantes del programa de formación para el empleo UNINCLUV de laUniversitat de València. Se administraron el cuestionario de Inteligencia Emocional de Bar-On: versión para jóvenes (EQ-i:YV; Bar-On y Parker, 2000) y la Escala de Comportamiento Asertivo (CABS; Woods et al., 1978). El diseño del estudio fue longitudinal con pretest, intervención y postest, sin grupo control. No se observaron diferencias en las puntuaciones obtenidas por los participantes antes y después del tratamiento en las distintas dimensiones de inteligencia emocional evaluadas (intrapersonal, interpersonal, estrés, adaptabilidad, estado de ánimo). Sin embargo, sí se observó un mayor uso de estrategias asertivas y un menor uso de estrategias pasivas entre los participantes tras la intervención. Asimismo, los participantes manifestaron un elevado grado de satisfacción con el programa. Los resultados obtenidos indican la necesidad de continuar con la implementación de programas universitarios que potencien tanto la inclusión como las competencias socioemocionales de las personas con discapacidad intelectual, con el fin de mejorar la calidad de vida de este colectivo.

Critical occupational science reveals mechanisms of social inequality and differences between humans. One category of human difference is ability and the social norm of being able. In this paper I ...

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.

Many adults with intellectual disabilities require assistance with activities of daily life and life skills training. This support is provided by professional caregivers. Because of low wages, a sh...

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 People with intellectual disability experience a higher prevalence of dementia, at an earlier age, than the general population. The aim of this review was to establish the psychological interventions and outcomes for individuals with intellectual disability and dementia. METHODS A search of eight electronic databases and reference lists of all included articles was conducted using PRISMA guidelines. Data were synthesized using an integrative method. RESULTS Initial searching produced 2,331 papers. Twenty-one studies met the inclusion criteria. Interventions were deductively categorized into behavioural, systemic and therapeutic. All studies reported positive findings for individuals and for the systems which support them, but limited by methodological issues and neglect of the direct experience and impact on individuals themselves. CONCLUSIONS The findings are discussed in relation to the wider literature and evidence base. Future research should aim to adopt methodologically robust designs that are inclusive of the individual experience of people with intellectual disability.

Staff working in the intellectual disability sector often experience a lack of confidence speaking with people with intellectual disabilities about death, dying and grief, and attention is required to the training needs of this workforce (Lord, Field, Smith, 2017). A community group that supports people with intellectual disabilities contacted the hospice, expressing concern over individuals who had experienced a recent bereavement. With the support of an art psychotherapist, the hospice facilitated two group creative sessions. The first involved sketching and writing, collectively exploring emotions and feelings relative to grief. One person shared her drawing with the group saying, ‘that’s how my throat feels when I’m sad. The circles in my tummy are the bubbles I feel when I’m nervous.’ The second involved legacy work and storytelling. This enabled the opportunity to reflect and share stories whilst creating spiritual bead work. Using arts-based approaches and creativity allowed a reflective space for people with intellectual disabilities to explore their feelings of loss and grief. Individuals displayed a varied level of understanding and concept of death, dying and grief and highlighted the importance of using clear and concise language when communicating with people with intellectual disabilities (PCPLD Network, 2020). People wanted to share their grief with the group, and peer support was significant with people showing empathy, support, and compassion towards one another. Staff felt supported and confident following the sessions, with a greater understanding of loss and grief.

Despite the substantial increase in the access of people with disabilities to higher education, university institutions continue to be an exclusive environment for people with intellectual disabilities. This paper aims to present a training programme for the employment and university inclusion of young people with intellectual disabilities at the Pablo de Olavide University in Seville, Spain, under the title “Training for the employment and autonomous life of people with intellectual disabilities”, which was launched in the academic year 2017–2018 and has already completed four editions. The programme includes a hybrid training system with specific university training oriented towards employment and autonomy together with inclusive training in subjects of various university degrees. The training is provided by interdisciplinary university lecturers together with support staff specialised in intervention with people with intellectual disabilities who come from experienced community associations. Other components of the experience include internships in companies, individualised academic tutoring of students, family accompaniment, and community inclusion with the use of the university residence as accommodation. Cognitive accessibility and new technologies are not lacking as supports in the process. This work shows the assessment of the fundamental actors of this experience during the four years of its development, and as a conclusion, it shows a high overall satisfaction with the programme and the radical change observed in the lives of people with intellectual disabilities after their time at the university.

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.

Context: UK austerity measures following the 2008 financial crisis included budget reductions for health and social care. We aimed to investigate the extent to which austerity-measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes.Objectives: We report on what services people with intellectual disabilities were using, whether they had lost care, the costs of their support, and what impact any loss of benefits and services had on individuals’ lives.Methods: 150 participants with intellectual disabilities across England were interviewed about their services and their well-being. Service and individual support costs were calculated. Statistical and thematic analyses were employed.Results: The largest proportion (42%) of our sample had lost care. 14% had experienced changed care, and care had remained the same for 36%. Only 7% said their care had improved. No associations were found between costs and characteristics and needs except for whether the person had mild or severe intellectual disabilities. Those who had lost care engaged in fewer activities and had significantly lower self-esteem and quality-of-life scores compared with those who had not lost care. Loss of care impacted on individuals’ independence and future aspirations.Limitations: A comparative study of austerity impacts across the whole of England was not possible. Our costs data may be underestimated because full information on support from home, key, or support workers was unavailable.Implications: In attempting to mitigate against COVID-19 impacts on people with intellectual disabilities, policy-decisions will need to consider the backlog of a decade of cuts.

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.

Background: National Institute for Health and Care Excellence (NICE, 2013) Guidance on Self-Harm states that professionals supporting people who self-harm should demonstrate compassion, respect and dignity. This literature review examines the evidence for professionals’ attitudes towards people with intellectual disabilities who self-harm. Method: Four databases (PsychInfo, IBSS, CINAHL and Medline) were systematically searched to find relevant research since 2000. Results: Four studies met the criteria. Attitudes of professionals supporting people with intellectual disabilities are contrasted with those of professionals in settings focused on supporting people without intellectual disabilities. Professionals supporting people with intellectual disabilities tended to display attitudes and attributions reflective of biobehavioural and psychosocial theories of self-harm, with a greater emphasis on relationships. Conclusion: Much more research is needed which examines the attitudes of professionals supporting people with intellectual disabilities who self-harm.

People with intellectual disabilities occupy a peripheral position in the labour market. They have low rates of participation in employment and this often takes the form of sheltered employment in settings segregated from persons without disabilities. Although their working lives have received limited attention in legal scholarship, this article argues that law can play a positive role in fostering greater inclusion. Taking into account the UN Convention on the Rights of Persons with Disabilities, this article analyses EU legislation and case law in order to identify how these apply to those working in sheltered employment and how they may assist in tackling barriers to participating in the open labour market. While EU labour law already contains measures that have the potential to improve the position of people with intellectual disabilities, the article identifies scope for enhancing the effectiveness of these instruments.

Background Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

Thesis. Although we have convincing data on the use of the Internet[1] by young people in the general population (also adults), our knowledge about its use by people with disabilities remains a lot more limited. The reasons for this include a shortage of research on access to ICT, the use of such technologies by users with varying disabilities, and the support they receive in this respect. This applies in particular to individuals with intellectual disabilities. Aim. The aim of the paper is to introduce the state of knowledge and selected challenges for the research field and the practice addressing young people with intellectual disabilities. The article is also focused on the different dimensions of inequalities and proposes a model of the areas of implementation of media education practices. Conclusions. The role of ICT in the life of people with intellectual disabilities (ID) should be analysed in the context both of benefits and barriers that may create the risk of exclusion. In terms of benefits, the analysis pertains to the Internet e.g. as a tool for new forms of interactions with the world, as a sphere of freedom and independent functioning as well as a chance for their empowerment. When analysing the context of the risk related to the use of the Internet by young people with ID one should not neglect e.g. various forms of abuse and other threats.

Children and adults with intellectual disabilities have poorer health and are more likely to die sooner than their non–intellectually disabled peers. There is growing evidence that some of these inequalities in health are avoidable, unjust, and unfair, given that they are driven by the higher rates of exposure of people with intellectual disabilities to well-established social determinants of poor health. People with intellectual disabilities are more likely than their peers to: live in poverty, not be employed (or if employed to work under precarious conditions), be exposed to discrimination and violence, face significant barriers in accessing effective health care, and be less resilient when exposed to adversities. In other words, they are examples of health inequities that arise from “the societal conditions in which people are born, grow, live, work and age, referred to as social determinants of health. These include early years’ experiences, education, economic status, employment and decent work, housing and environment, and effective systems of preventing and treating ill health” (World Health Organization). Future research needs to address three key issues. First, most of the existing evidence is based on the experiences of people with intellectual disabilities in the world’s high-income countries. In contrast, the vast majority of the world’s population live in middle- and low-income countries. The limited evidence available suggests that children with intellectual disabilities growing up in middle- and low-income countries are much more likely than their peers to be growing up in poverty and to be exposed to specific social determinants of poorer health associated with poverty such as undernutrition, poor sanitation, low levels of parental stimulation, violent parental discipline, and hazardous forms of child labor. Second, little research has focused on health inequalities and inequities among two important groups of people with intellectual disabilities: people with intellectual disabilities from minority ethnic communities and people with mild intellectual disabilities. Third, very little research has attempted to test the proposition that people with intellectual disabilities may be more or less resilient than their peers when exposed to social determinants of health. While much remains to be learned about the inequalities and inequities faced by people with intellectual disabilities, the existing knowledge is sufficient to guide and drive changes in policy and practice that could reduce the health inequities faced by people with intellectual disabilities. These include: improving the visibility of people with intellectual disabilities in local, national, and international health surveillance systems; making “reasonable accommodations” to the operation of health care systems (e.g., introducing annual health checks into primary care services, making “easy read” materials available, employing intellectual disabilities liaison nurses in acute hospitals) to ensure that people with intellectual disabilities are not exposed to systemic discrimination; and ensuring that people with intellectual disabilities (along with all other people with disabilities) are included in and benefit equally from local and national strategies to reduce population levels of exposure to well-established social determinants of poor health.

This study examines perceptions and understandings of self-determination in the context of relationships between people with intellectual disabilities and social care professionals. We held focus group discussions to explore the views and experiences of 10 residents and 10 professionals at three facilities for people with intellectual disabilities located in Western Switzerland. Participants perceived and understood self-determination in terms of decision-making, social skills, procedures, identity, self-consciousness, autonomy, freedom, barriers, and facilitators. The research process highlighted the shifting and situational nature of the concept, as well as the importance of self-determination for people with intellectual disabilities. The findings also highlight the importance of discussion and reflection on the concept of self-determination and its benefits for people with intellectual disabilities.