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Introduction: This research investigated the views of different stakeholders regarding the specialist mental health service for people with intellectual disabilities (ID) in Singapore. Method Interviews were conducted with mental health professionals, family carers and service users with ID. Framework analysis was adopted to identify common dominant themes among the different participant groups. Results Analysis revealed four themes (1) Giving choice and autonomy; (2) Training to become competent; (3) Respect; and (4) Part of the community Conclusions People with ID living in Singapore have limited opportunities to express their choices and autonomy especially when it comes to treatment planning. Family carers have a significant influence on the level of community presence of their relatives with ID. Participants identified employment for people with ID as a way to improve public perceptions. There was no mention of people with ID developing social relationships. Recommendations are discussed in the context of current service provision.

Background: For people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. Methodology: Three women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. Findings: Participants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. Conclusions: Peer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.

Background: This study focuses on young people with intellectual disabilities and/or autism who, due to child welfare concerns, have grown up in children's residential care and are now transitioning out of care at the age of 18 years towards young adulthood. This transition is termed "care leaving" and the young people in transition "care leavers". The care leaving transition can be particularly difficult for young people with intellectual disabilities and/or autism. These challenges can be magnified in a time of a global crisis like COVID-19, which has resulted in countries being on lockdown and care leavers' transitions being curtailed. Many mental health problems have emerged due to the COVID-19 outbreak and resultant lockdown that may negatively impact on the care leaving transition of young people with intellectual disabilities. Methods: Semi-structured interviews were conducted with six care leavers with intellectual disabilities and their three caregivers in June 2020 in the Cape Peninsula region of South Africa to explore the impact of COVID-19 on their transitional journeys. Findings: Three core themes emerged from the analysis: young people evidenced regression of independence, rather than the expected growth in young adult independence, due to disruptions to routines and opportunities to move out into the world; some young people experienced an exacerbation or emergence of mental health problems, which impacted on their transition to young adulthood; and young people and their caregivers experienced a deepening of caregiver relationships, which enhanced the transition of the care leaver. Conclusions: Services must continue to facilitate progress towards independence and promote personal and caregiver well-being. Support service for care leavers with intellectual disabilities should be essential services, offered in person or online while adhering to COVID-19 regulations. Caregivers should be trained in continuing independent and interdependent living programmes for care leavers in their care, supported through in person or online training, mentoring and supervision. Service continuity is recommended to avoid the contraction of young people's social world at a time when it should be opening up.

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

Introduction: Social perception of disability is often a more serious problem than the disability itself. Acceptance of people with disabilities by the social environment is crucial, as it promotes their all-round development better than measures taken in individual rehabilitation. The aim of the study was to analyze the perception of people with intellectual disabilities by residents of the Tarnów region. Material and methods: The study was conducted by a diagnostic survey method using the author's survey questionnaire in March-May 2023. 314 correctly completed questionnaires were included in the study, completed by people between 18 and 67 years of age (mean 25.97 ± 7.97 years). A significance level of p < 0.05 was adopted. Results: As many as 32.48% (n = 102) of the respondents admit that they have a person with intellectual disabilities in their family or neighborhood. Among the respondents, 54.14% are familiar with local organizations for people with intellectual disabilities and their families, where 17.20% of people admitted that they have done volunteer work for such an organization. A willingness to become a volunteer for such an organization was expressed by 44.90% of people. Respondents overwhelmingly agreed that people with intellectual disabilities should participate in the life of the local community (91.40%). The majority of respondents (79.62%) believe that intellectually disabled people have the same sexual needs as the rest of society, followed by 15.61% who say they have no sexual needs, and 2.87% associate the sexual needs of intellectually disabled people with their degree and type of disability. Conclusions: Society shows signs of effortless tolerance – it does not want to have closer relations with people with intellectual disabilities, but at the same time does not mind that such people participate in society. Respondents show insufficient knowledge of the sexuality of people with intellectual disabilities.

Abstract Background Older people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co‐designing resources to support older people with intellectual disabilities and their families to plan for the future. Methods Following interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience‐based co‐design process to develop planning ahead resources. This included a ‘trigger film’ summarising findings from the earlier interview study, 12 co‐design workshops and a user feedback phase. Results The co‐design group developed a set of 102 ‘Planning Ahead Cards’ to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co‐design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead. Conclusion The Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co‐design approach was key to ensuring that the resources were useful and accessible for families. Patient or Public Contribution People with intellectual disabilities and their families contributed to the design of the resources through the co‐design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co‐facilitated co‐design workshops and co‐authored this article.

BackgroundPrevious research has shown that people with intellectual disabilities have limited sexual knowledge, which can be essential for developing positive sexuality. This study aimed to check the validity and reliability of an assessment tool (SexKunn) for measuring the sexual knowledge of people with intellectual disabilities in Norway. Further, we aimed to identify potential knowledge gaps among the participants and highlight their potential impactMethods37 people with intellectual disabilities completed one assessment. 20 participants then completed a retest. Clinicians’ (n=23) views on the assessment tool were measured to obtain face validity. Positive and negative agreement analysis was used to identify potential dimensions in the data.ResultsA weighted Cohen’s kappa for the test and retest of the overall scores was considered to be substantial. The clinicians described an acceptable face validity regarding high positive value scores and low negative burden scores. They also suggested improvements. The study identified that the participants lacked knowledge about female genitals, hygiene, appropriate touching/sexual acts with friends/intimate partners, and contraception.ConclusionsThe SexKunn is a feasible assessment tool to measure sexual knowledge in people with intellectual disabilities. A lack of sexual knowledge of people with intellectual disabilities may violate their sexual rights.

BackgroundResponsible digital care refers to any intentional systematic effort designed to increase the likelihood of a digital care technology developed through ethical decision-making, being socially responsible and aligned with the values and well-being of those impacted by it. ObjectiveWe aimed to present examples of action opportunities for (1) designing “technology”; (2) shaping the “context” of use; and (3) adjusting the behavior of “users” to guide responsible digital care for people with intellectual disabilities. MethodsThree cases were considered: (1) design of a web application to support the preparation of meals for groups of people with intellectual disabilities, (2) implementation of an app to help people with intellectual disabilities regulate their stress independently, and (3) implementation of a social robot to stimulate interaction and physical activity among people with intellectual disabilities. Overall, 26 stakeholders participated in 3 multistakeholder workshops (case 1: 10/26, 38%; case 2: 10/26, 38%; case 3: 6/26, 23%) based on the “guidance ethics approach.” We identified stakeholders’ values based on bottom-up exploration of experienced and expected effects of using the technology, and we formulated action opportunities for these values in the specific context of use. Qualitative data were analyzed thematically. ResultsOverall, 232 effects, 33 values, and 156 action opportunities were collected. General and case-specific themes were identified. Important stakeholder values included quality of care, autonomy, efficiency, health, enjoyment, reliability, and privacy. Both positive and negative effects could underlie stakeholders’ values and influence the development of action opportunities. Action opportunities comprised the following: (1) technology: development of the technology (eg, user experience and customization), technology input (eg, recipes for meals, intervention options for reducing stress, and activities), and technology output (eg, storage and use of data); (2) context: guidelines, training and support, policy or agreements, and adjusting the physical environment in which the technology is used; and (3) users: integrating the technology into daily care practice, by diminishing (eg, “letting go” to increase the autonomy of people with intellectual disabilities), retaining (eg, face-to-face contact), and adding (eg, evaluation moments) certain behaviors of care professionals. ConclusionsThis is the first study to provide insight into responsible digital care for people with intellectual disabilities by means of bottom-up exploration of action opportunities to take account of stakeholders’ values in designing technology, shaping the context of use, and adjusting the behavior of users. Although part of the findings may be generalized, case-specific insights and a complementary top-down approach (eg, predefined ethical frameworks) are essential. The findings represent a part of an ethical discourse that requires follow-up to meet the dynamism of stakeholders’ values and further develop and implement action opportunities to achieve socially desirable, ethically acceptable, and sustainable digital care that improves the lives of people with intellectual disabilities.

Competing Interests: Competing interests: None declared.

People with intellectual disability (ID) generally tend to have difficulties expressing their thoughts and feelings verbally. Art-based therapies rely less on cognitive ability and verbal skills and aim to promote mental health. Drama therapy provides a playful framework to communicate problematic issues and to foster social skills. Improvisational theatre (improv) methods applied in therapy settings were reported to show positive effects on social competences and self-esteem. This pilot study investigates the feasibility (N = 24) and appropriateness (n = 12) of an intervention using improv methods in people with mild to moderate ID. Feasibility was measured on the basis of the average participation period, while appropriateness was assessed through a standardised patient satisfaction questionnaire (CSQ-8) and a self-developed questionnaire. The frequency of the applied methods was compared in two subgroups with participants requiring different support. The average participation rate of 19 months indicated a good feasibility. High CSQ-8 scores (M = 27.6/max. 32) and positive feedback on the self-developed questionnaire indicated the overall appropriateness. The frequency analysis of the applied methods reflected the adaptive nature of the intervention. Further research on the efficacy of improv methods contributing to mental health in people with ID is recommended. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has had significant consequences for all areas of human life. This particularly applies to people with intellectual disability (ID) whose functioning and living environment are associated with many specific risk factors. The review is to determine what difficulties and changes in the psychosocial functioning of people with ID have been brought about by the COVID-19 pandemic and what factors may be important in dealing with them. Twenty studies focused on the experiences of people with ID during the COVID-19 pandemic were analyzed. All of these were qualitative (n = 16) and mixed-method studies (n = 4). The COVID-19 pandemic has caused significant changes in the lives of people with ID, mainly in the organization of support and services. This has had important consequences for their psychosocial functioning. There has been a decrease in competencies and social integration, and an increase in difficult behaviors and mental problems. The challenges related to the COVID-19 pandemic have also resulted in positive changes: people with ID have developed technology skills and personality traits such as responsibility for themselves and others. People with ID have mastered safety habits to a varying degree. It is important to support them in the time of the COVID-19 pandemic, maintaining a balance between protecting them from risk and ensuring their autonomy. [ABSTRACT FROM AUTHOR]

In Anglophone countries, the 40% of people with intellectual disabilities who show challenging behaviour, mental health problems, or both, are usually offered behavioural rather than emotional interventions. Yet much of their distress has originated in emotionally damaging personal histories, since children with intellectual disabilities are much more likely to experience adverse childhood experiences that predict significant mental health problems in adults. This clinical research review addresses that. It raises two issues: first, provision of effective support to parents (considered elsewhere); and second (the focus of this article), how services for distressed adults can address the untapped potential for development and growth in their emotional lives. A key finding in favour of an attachment perspective is that the emotional development of people with intellectual disabilities lags significantly behind their cognitive development, and their level of emotional rather than cognitive development predicts challenging behaviour. Two attachment assessments that can frame intervention have been considered: the Scale of Emotional Development–Short; and the Adult Attachment Projective Picture System. Related system changes necessary for services to implement attachment-informed interventions were then identified: specialisation rather than eclecticism, ensuring that trauma-informed care is applied with fidelity, and staff stability. [ABSTRACT FROM AUTHOR]

Introduction: The aim of this study is to validate a Spanish version of the Impact of Event Scale on People with ID (IES-ID). Methods: IES-ID was administered to adults with ID (n = 120), analyzing internal consistency, inter-rater and test-retest reliability, criterion validity, construct validity and feasibility. Results: Good internal consistency was found in the total of the scale ([alpha] = 0.91). Test-retest and inter-rater correlations yielded excellent level of agreement in the total scale. Criterion validity was significant. Regarding construct validity, the factor analysis yielded three well-defined factors and the model fit of the confirmatory factor analysis appears to be very good. Finally, the feasibility was also very good. Conclusion: The Spanish version of the Impact of Event Scale for People with ID (IES-ID) showed adequate indexes of feasibility and reliability to assess the severity of PTSD symptoms in adults with borderline to moderate ID.

Background: Despite the importance of social networks for health and well-being, relatively little is known about the ways in which adults with intellectual disabilities in the U.K. experience their social networks. Method: A systematic review was completed to identify research focused on the social networks of adults with intellectual disabilities. Studies published from 1990 to 2019 were identified. Studies were thematically analysed. Results: Quantitative, qualitative and mixed methods studies were analysed to identify key factors influencing social networks. Experiences of people with intellectual disabilities identified themes of identity, powerlessness, inclusion, family and support. These themes are discussed with reference to theories of stigma and normalisation. Conclusions: Stigma and normalisation can be used to better understand the needs, desires and dreams of people with intellectual disabilities for ordinary relationships, from which they are regularly excluded. Implications for policy and practice are discussed in relation to building and repairing often spoiled identities.

Background: People with intellectual disabilities are reported to have low self-esteem and to experience high rates of adverse interpersonal experiences (AIEs). This study aimed to investigate whether shame and self-compassion mediate the relationship between AIEs and self-esteem for people with intellectual disabilities and whether perceived social support moderates this relationship. Method: This study employed a cross-sectional design, involving between-group comparisons. Forty-seven people with intellectual disabilities and 50 people without intellectual disabilities completed self-report questionnaires measuring shame, self-compassion, self-esteem, early AIEs and social support. Results: Shame and self-compassion were found to mediate the relationship between AIEs and self-esteem for people with intellectual disabilities. There was no evidence for a moderating effect of social support and no difference between groups in shame or self-compassion. Conclusions: The findings suggest shame and self-compassion are important concepts for people with intellectual disabilities. Clinical and research implications are discussed.

Background: Nordic welfare models are characterised by emphasising both social security and labour market participation. Nevertheless, most people with intellectual disability either receive a disability pension or work in sheltered workshops. While transitions into integrated employment have been studied, transitions from school to sheltered employment have received less attention. We therefore explore the views of people with intellectual disabilities, transitioning from school to a sheltered employment programme. Methods: We interviewed nine adults with intellectual disabilities that had made the transition into a service centre that provides both competitive employment with support, and employment in sheltered workshops. The interviews were analysed thematically. Findings: The thematic analysis revealed two main themes: "involvement during the transition" and "adapting to a new role." Most participants described transitions where they had been involved, in varying degrees, in identifying their work preferences, participated in transition activities and made personal choices. Some participants, however, shared experiences where they had not participated in activities, where personal choices were restricted to predefined options, or decisions were made by someone else. The participants further shared experiences of navigating into new contexts, characterised by new situations and new interactions. To navigate successfully in such environment, the support network was important. The participants advised future "transitioners" to be brave and utilise opportunities to find suitable employment even in challenging situations. Conclusions: Our study emphasises the importance of tailoring the transition to individual preferences and perspectives rather than aiming for a uniform, one size fits all type of transition. It is important to build on the positive aspects of sheltered employment as well as to further develop innovative ways of transitioning into integrated employment.

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

Research looking into the day-to-day lives of people with intellectual disabilities (ID) is on the increase in Africa. However, not enough is being done to include people with ID as active contributors to this research through inclusive approaches. Inclusive research empowers people with ID as they have the agency and autonomy to speak for themselves and they are given an active voice in the research process and outcomes. This leads to services that cater for what matters to people with ID themselves as opposed to having their needs defined by other people. The common myths and misconceptions attached to ID in Africa, which increase stigma towards people affected by this type of disability can be abated by their visibility in research and evidence of their ability to express themselves. This article makes a call to researchers on the African continent to include people with ID in research as active contributors to the research and not simply as research subjects or respondents. A background is given of global developments that have occurred in inclusive research based on the literature and the author's personal experience, which African researchers can learn from while taking cognizance of the specific needs of their own contexts. This is followed by highlighting the gaps in Africa. The article ends with a discussion of possible reasons for a lack of inclusive research in Africa and suggestions and recommendations to address this gap. [ABSTRACT FROM AUTHOR]

Background: 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.

Recent COVID-19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers. Aim: The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period. Methods: Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis. Results: Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future. Conclusions: All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well-being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

This study assessed the usability of three readily available Personalized Thermal Control Systems (PECS)—an electric blanket, a small personal fan, and a large pedestal fan—among individuals with intellectual disabilities living independently in energy poverty conditions in Chile. The research aimed to identify the primary usability challenges that affect the adoption and operational effectiveness of these technologies and, consequently, their potential to enhance thermal comfort. Results indicated that devices with more advanced control features, i.e. the large pedestal fan, presented the most significant usability challenges, followed by the electric blanket and the small personal fan. Key usability issues included poor visibility, inadequate material choice, ineffective communication, bad affordance, and inadequate levels of touch sensitivity of the control interface in these PECS. The study also showed a large variance in the level of adoption of the PECS among participants, thereby indicating that users have different individual attitudes, ranging from passive acceptance to proactive exploration and use. To conclude, this study advocates for the necessity of developing easily operable PECS that cater to the specific needs of individuals with intellectual disabilities, thereby supporting their autonomy and improving their quality of life in thermally comfortable environments. • Usability barriers impact PECS adoption for disabled users. • Main issues relate to visibility, material, feeback, affordance, sensitivity. • Mayor usability problems led to passive acceptance or lack of use. • Better usability led to proactive use and empowerment. [ABSTRACT FROM AUTHOR]