Search

Background: Despite growing recognition of their right for inclusion in society, people with intellectual disabilities are often excluded from mainstream services, or experience poor service outcomes. Method: Taking a relational approach that considers the interpersonal relations and interactions that occur in mainstream service settings in Australia, this paper examines the features of services that research participants considered more inclusive. Results: Relations between service users with and without intellectual disabilities, mainstream service staff and disability support workers in inclusive mainstream services were characterised by; respect; warm, welcoming and convivial interpersonal engagement; active listening; proactive assistance; flexibility; mediation to create a safe environment; and collaboration and shared responsibility by both mainstream staff and disability support workers in supporting a service user with intellectual disability. Conclusions: Building on these results, we put forward a set of principles for facilitating inclusion of people with intellectual disabilities in mainstream services. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities may find difficulties in their school-to-work transition. The current study aimed to determine which factors have been investigated and which are relevant to this transition process. Method: A systematic review was undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and included studies published between 2011 and 2023 on initiatives that facilitate the school-to-work transition. Results: Four broad types of interventions were encountered: career and vocational guidance, training for the development of key competencies, school-based transition programs, and work-based learning. Most studies were quantitative and included key competencies in training activities that focus on specific skills that facilitate the school-to-work transition process. Conclusions: In order to enable the continuity of processes related to school-to-work transition and to improve inclusive employment and social skills for people with intellectual disabilities, there is a clear need to collect initiatives across countries. [ABSTRACT FROM AUTHOR]

To characterise the changes at work experienced by psychologists working with people with intellectual disabilities during the pandemic and whether these changes, stressors and aspects of working life were associated with mental wellbeing and occupational stress. Ninety-seven psychologists completed an online survey. Free text comments were analysed using thematic analysis and triangulated with our quantitative findings. Occupational stress, learning new roles, demands at home, and changes due to COVID-19 were associated with poorer mental wellbeing, while uncertainty about the role, a shortage of personal protective equipment, and poorer mental wellbeing were associated with occupational stress. Two main themes emerged during the thematic analysis: being human and being an employee, and triangulation revealed agreement. The wellbeing and occupational stress of psychologists working with people with intellectual disabilities have been affected during the pandemic. It is of note that almost a quarter of our sample reported having been redeployed. [ABSTRACT FROM AUTHOR]

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. 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. 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. Findings can inform the future design and evaluation of programs to support the development of informal support network for people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture. [ABSTRACT FROM AUTHOR]

Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented their care and support, and by extension, their own lives. We describe how the project was carried out and the facilitating and obstructing factors we encountered. Results: The collected images and related personal stories teach us about the central importance of significant others to the lives of the participants and their vital role as "necessary others" who nurture a multitude of possibilities. Conclusions: The increasing policy focus on independence and self-sufficiency is opposed to the vital role of relationships in the participants' view of a good life. [ABSTRACT FROM AUTHOR]

One would assume that infection outbreaks such as the COVID-19 pandemic have a deleterious effect upon the physical, mental, and/or social functioning of people with intellectual disabilities (ID). A systematic search of four databases produced 18 articles. General information pertaining to the topics under consideration, information related to infectious diseases and ID were extracted. All but one of the studies investigated the impact of infection outbreaks on the physical functioning of people with ID. Although in some instances certain studies briefly reflected on the impact of infection outbreaks on mental or social functioning, there was no empirical data available. There is scarce scientific knowledge on the impact of infection outbreaks on the mental and social functioning of people with ID. This underscores the exigency for further psychosocial research to both explore the impact of infection outbreaks and develop strategies to deal with them in the future. [ABSTRACT FROM AUTHOR]

This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches. Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities. [ABSTRACT FROM AUTHOR]

Background: "Convivial encounter" provides a new lens for understanding social inclusion of people with intellectual disabilities, characterised by shared activity and friendly interactions with strangers without intellectual disabilities. Places, props and support practices facilitate incidental convivial encounters. This study explored processes for deliberately creating opportunities for such encounters. Methods: A case study design used mixed methods to collect data from two disability organisations about convivial encounters the people they supported experienced and staff practices that created these. Results: Most commonly convivial encounters created involved repeated moments of shared activity through which people became known by name by others without disabilities. Eight approaches and five processes were used to create these opportunities for encounter. Conclusions: The study provides a blueprint for scaling up or creating interventions to create opportunities for convivial encounters, and opens lines of enquiry about staff competences needed and parameters for costing this type of intervention. [ABSTRACT FROM AUTHOR]

Background: This study explores the perceptions of supported accommodation staff and their managers of the support needs of residents ageing with intellectual disabilities, and their experiences of adjusting services for this group in the context of individualised funding. Method: Qualitative interviews were conducted with 21 staff working in Australian supported accommodation services. Findings: Four themes emerged. The first captured the staff's limited understanding of ageing and the medicalisation of support needs. The second identified staff practices and adjustments to service provision to facilitate residents' healthy ageing. The third described staff commitment to facilitating ageing residents to age in place, and the fourth identified staff challenges and opportunities in supporting ageing residents in the context of the National Disability Insurance Scheme (NDIS). Conclusions: Findings may inform the development of practice guidelines and training for supported accommodation staff, protocols for intersections between disability, aged care and health sectors, and adequate policy responses to support older residents' healthy ageing. [ABSTRACT FROM AUTHOR]

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population. [ABSTRACT FROM AUTHOR]

Background: Dedifferentiated policy treats adults with intellectual disabilities as part of the larger group of people with disabilities. The implications of the dedifferentiated National Disability Insurance Scheme (NDIS) for adults with intellectual disabilities are explored. Methods: Analysis of peer reviewed and grey literature between 2014 and 2020 about design of the NDIS and outcomes. Results: Many participants experienced problems with NDIS implementation. Outcomes for adults with intellectual disabilities compared poorly to other groups. They were disadvantaged by standardised planning processes relying on self-expressed needs and omission of supported decision making. As the NDIS matures, it is becoming more differentiated but issues relevant to adults with intellectual disability remain largely invisible. Conclusions: Further shifts towards standardised planning and functional assessment may be disadvantageous for adults with intellectual disabilities for whom support needs are dependent on social and contextual factors, and exercise of choice on support for decision making. [ABSTRACT FROM AUTHOR]

There is a need to systematically compare and contrast mortality predictors and disparities in people with intellectual disabilities (ID) for global prevention strategy development. Bibliographic databases and grey literature were searched using systematic review methodology and the machine learning tool "Abstrackr." Fifty-four relevant articles and reports published from 2010 to 2019 were identified. Nearly all (n = 53) were from high-income countries. Mortality disparities were apparent and consistent across countries and publication years, with no evidence of a decrease over time. People with ID can still expect to live 12–23 years less than the general population and are particularly vulnerable to deaths from respiratory infections and epilepsy. Both population and individual-level approaches to prevention are indicated to tackle the continuing mortality disparities in people with ID, including consideration of reasonable adjustments in general population efforts to reduce health inequalities. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities are one of the most disadvantaged and marginalised groups in contemporary Australian society and until relatively recently, the history of intellectual disability in Australia has been neglected. Methods: Using semi-structured, life story oral history interviews, the life stories of three people with intellectual disabilities were analysed and the importance of intellectual disability in Australia as a subject for further historical analysis highlighted. Results: In this article it has been argued that embedded in the historical detail of these life stories, we can ascertain some of the key structural patterns that have shaped the experiences and forged the identities of people with intellectual disabilities in Australia. Conclusion: By analysing and comparing the narrative structures and dominant themes in life stories of individuals with intellectual disability, this article demonstrates something of the changing and immensely varied experience of people with intellectual disabilities in Australia over the last 50 years. [ABSTRACT FROM AUTHOR]

Background: Dedifferentiation refers to the trend of positioning people with intellectual disabilities together with other disabled individuals for political purposes, to act as a counter to differentiated approaches. This article explores the influence of dedifferentiation in professional support settings through the lived experiences of people with intellectual disabilities and their staff. Methods: Ethnographic research, including participant observation and interviews, conducted with an intellectual disability social care provider and an independent community café, both based in an area of England. Results: Tensions exist between dedifferentiation aims and the lived experiences of people with intellectual disabilities, who often struggled to achieve in areas including independent community inclusion and paid employment. Conclusion: Dedifferentiation has disadvantages for people with intellectual disabilities. It can underestimate and mask needs that people experience in relation to their disabilities. Policy and professional support might be improved by (1) recognising these limits and (2) incorporating people's real-world needs into support provision. [ABSTRACT FROM AUTHOR]

Background: The co-production concept holds out the promise of forging new relationships between professionals and service users with intellectual disabilities. However, little empirical research explores the embodied practices of these projects occasion. We identify two key tensions intrinsic to such projects; the tension between expert/professional knowledge and lay/experiential knowledge, and between co-producers as different from or typical of the public they are representing. Methods: We explored how these tensions were manifested and responded to in ongoing interactions by analysing video recordings of co-design groups where people with intellectual disabilities engaged in the production of Easy Read materials. Results: We noticed the instability of participants' claims to expert/professional knowledge and the challenges of attending to and mobilising participants' experiential knowledge within the constraints of the group task. Conclusions: Interactional dynamics were managed to preserve consensus and homogeneity within the groups, with the potential for reinforcing a limited identity associated with "intellectual disability." [ABSTRACT FROM AUTHOR]

Background: There is limited Australian research investigating health practitioner knowledge and/or confidence in the diagnosis and treatment of mental health disorders in people with intellectual disabilities (IDs). Method: Ninety-three health practitioners from four professional groups (primary health practitioners, psychologists, mental health practitioners, and alternative therapies) completed a 34-item online survey comprising questions designed to identify participant knowledge of disorders described in the Psychiatric Assessment Schedule for Adults with Developmental Disabilities and the Therapy Confidence Scale-Intellectual Disabilities. Results: Participants demonstrated low knowledge of symptomology and were "moderately confident" to "confident" working with people with IDs. Whilst professional group showed a significant main effect on confidence levels, post-hoc analysis did not detect significant differences between the individual professional groups. Conclusions: Australian participants demonstrated confidence, but low knowledge, in treating individuals with IDs. The development of training to address deficits in practitioner knowledge of symptomology, assessment, and assessment-based communication is recommended. [ABSTRACT FROM AUTHOR]

The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Implementation interventions were widely used in which clients' perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT's social mechanisms' Coherence, Cognitive Participation and Collective Action. The emphasis on consensus and clients' perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care. [ABSTRACT FROM AUTHOR]

Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services. [ABSTRACT FROM AUTHOR]

In the debate on the social inclusion of people with intellectual disabilities, we find various proposals for dealing with sameness and difference. A more inclusive understanding of difference is needed to ensure that the perspectives of people with intellectual disabilities are taken into account. This study involved in-depth interviews with 25 individuals with intellectual disabilities, 24 people without disabilities, and 15 professionals; and observations in neighbourhood projects. Facilitating convivial encounters is a promising way of engaging with difference and an interesting alternative to "othering," "similarising," or "romanticising difference." Convivial encounters do not promote sameness or difference; instead, they allow groups to jointly develop transient shared identifications. In community projects, sameness and difference can be reinvented so that people can engage with difference in an enriching way. Therefore, convivial encounters, especially when organised, can be seen as a new framing of the ideal of social inclusion. [ABSTRACT FROM AUTHOR]

Background: Social vulnerability refers to the ways in which an individual is at risk of being victimised. The Test of Interpersonal Competences and Personal Vulnerability [TICPV] is an Australian assessment tool designed for adults with intellectual disabilities (ID) [Wilson et al. (1996). Vulnerability to criminal exploitation: Influence of interpersonal competence differences among people with mental retardation. Journal of Intellectual Disability Research, 40, 8–16. https://doi.org/10.1111/j.1365-2788.1996.tb00597.x]. It aims to evaluate their social vulnerability. This study aims to conduct a preliminary cross-cultural validation of the TV-22, the French-language, enhanced and accessible version of the TICPV. Method: Twenty-nine French-speaking adults with ID answered the TV-22. The reliability and validity of this measure were assessed. Results: Performance on the test was shown to be internally consistent (Cronbach's α =.89; McDonald's Ω =.93), stable over time (rs(29) =.81, p <.01) and a valid measure of social vulnerability. Conclusions: Results provide psychometric support for the use of the TV-22. Further research is needed to confirm these results with a larger sample. [ABSTRACT FROM AUTHOR]

Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories: senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice; understood Active Support; and strongly supported practice leadership. In these organisations practice leadership was structured close to everyday service delivery, and as part of frontline management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures. [ABSTRACT FROM AUTHOR]

Direct support professionals' (DSPs') attitudes toward nutrition are important for supporting a healthy lifestyle of persons with intellectual disabilities. However, there are no instruments to measure it. The aim of this study was to compose a questionnaire and determine its internal validity. The previously validated Health Enhancing Physical Activity questionnaire was adapted into the Attitude of DSPs for Health Enhancing Nutrition (ADSP-HENU) and completed by 31 DSPs. The internal validity of the questionnaire was investigated by Cronbach's Alpha and an exploratory non-parametric item response analysis (NIRT). The internal consistency by Cronbach's Alpha was good (0.87, 95% CI [0.81–0.94]). NIRT showed monotonicity with wide confidence bounds and sufficient point polyserial correlations of the items. This indicates that each attributes to the overall measured attitude. The internal validity of the ADSP-HENU is promising, and it can be used in daily practice for evaluation or adapting interventions to DSPs' needs. [ABSTRACT FROM AUTHOR]

The article offers information on dedifferentiation describes a change that occurred in many developed countries during the 1990s from regarding people with intellectual disabilities as having particular needs resulting from cognitive impairment. Topics include the policy continues to shape health and social care services, and the research on the impact of dedifferentiation on people with intellectual disabilities.

Despite the increasing longevity of people with intellectual disability, community care systems are ill prepared to support the choices of people with intellectual disabilities for ageing well. This study aims to understand ageing experiences among middle-aged adults with intellectual disabilities and their family carers with a focus on their perspectives of ageing well. Interviews were conducted with 10 middle-aged people with intellectual disabilities and 12 family carers; the interview data were thematically analysed. The participants highlighted the key elements of ageing well such as importance of living in a familiar place, having a reliable carer, nurturing independence, staying fit and healthy, and actively engaging in social activities. The findings suggest that middle-aged adults with intellectual disabilities can best age well through future planning, along with support services tailored to respond to their changing needs as they age. [ABSTRACT FROM AUTHOR]

Though the concept of encounter promises to move the field of social inclusion beyond the dichotomy of presence and participation, new work in political theory pushes encounter in a different direction, making freedom – not inclusion – the central value at stake. Interpretative video analysis was conducted on an online learning program "Supporting Inclusion" developed to help support workers recognise and facilitate encounters between people with intellectual disabilities and community members. Using the lens of freedom in the encounter offers an alternative framing of the significance and meaning of the online learning program's social interactions. Feminist theory can help show how unfreedom is a central problem facing people with intellectual disabilities, recasting encounter through the lens of freedom can help spark fresh insight into what makes encounter important. [ABSTRACT FROM AUTHOR]

While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving "voice" to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships. [ABSTRACT FROM AUTHOR]

Australian research indicates that post-parental care transitions are rarely planned and primarily occur following a crisis for a primary carer. This paper examines disability staff perceptions of transitions for people with intellectual disability and their ageing carers in rural South Australia. A focus group interview model was used, with a semi-structured interview guide initiating group discussions. A thematic analysis methodological approach was selected to analyse the data. This paper reports on the theme of Service Delivery, which has three sub-themes of Availability; Distance; and Individual Access. The key findings are presented and supported by the use of exemplar quotes. This research indicates a poor intersection of general and specialist services is inhibiting post-parental transitional care for rural people. Simply allocating money to the individual does not resolve the issues, and the interface between different services needs to be better considered at government level. [ABSTRACT FROM AUTHOR]

An editorial is presented to the article urban geographers and sociologists use ideas about "encounter" and "conviviality" to understand ways of engaging with difference in cities and ways of enabling people to step outside a fixed identity. Topics include urban geography literature on encounter has turned primarily to the front stage of this performance; and collection of papers brings together new directions of scholarship about the performance, purpose, and creation of encounter for people.

It is mandatory for staff in Swedish community services for people with intellectual disabilities to report incidents of error or malpractice. The aim is to study if incident reports contribute to developing quality in services for people with intellectual disabilities who present with challenging behaviours. 159 reports on incidents from group homes and daily activities services were accessed and analysed using narrative thematic analysis. Most reports concerned altercations between service users. Analysis focused mainly on the immediate incident and attributes of service users. Amendments were not (obviously) aligned with causes, and neither sufficiently addressed structural shortcomings. Restrictive measures were described, but changes in practices were not mentioned. Reports including Self-injurious behaviour (SIB) were conspicuously absent. Reports are handled in a seemingly perfunctory manner, without any development. Quality development relying on staff reports and front-line managers' investigations requires support based on values rather than on the legal framework. [ABSTRACT FROM AUTHOR]

This preregistered study compares adolescents with mild-to-borderline intellectual disability (MBID) and typically developing (TD) adolescents on their susceptibility to peer influence. To understand why adolescents with MBID are susceptible to peer influence, links with inhibition, Theory of Mind (ToM) and negative interpretation bias are investigated. We assessed 163 adolescents (111 MBID, 52 TD 14–19 years; 63% boys) using experimental tasks and self- and/or teacher-reports. Adolescents with MBID and TD adolescents did not differ in their susceptibility to peer influence, inhibition, and negative interpretations. On two ToM instruments, adolescents with MBID performed weaker than TD adolescents. In a structural equation model, tested in the MBID group, inhibition, ToM and negative interpretation bias were not related to susceptibility to peer influence. This study revealed new insights by strong methods such as the multimethod approach, a full theoretical model testing relations between all constructs simultaneously, and the large sample. [ABSTRACT FROM AUTHOR]

The Developmental Behaviour Checklist (DBC) is an established, internationally used questionnaire for assessing behavioural and emotional problems among young people with developmental or intellectual disabilities (ID). The present study aims to evaluate the psychometric properties of its German teacher version (DBC-T). The German DBC-T was administered to 397 school staff members who reported twice on 1177 children and adolescents with ID over a period of 7–9 months. Data were analysed within an exploratory structural equation modelling framework. Our results supported the five-factor structure of the DBC-T and found good reliability for all scales. Analyses on the relationship of DBC-T scores with students' age, gender, and adaptive behaviour provided further evidence for the validity of the DBC-T. Our study endorses the notion that the German DBC-T is an important instrument both for research and practice. Limitations and further directions are discussed. [ABSTRACT FROM AUTHOR]

This study reports the findings from a Dutch study, exploring care workers' knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Using an inductive research design 33 semi-structured interviews were conducted with care workers. Three themes were derived from the data: (1) The clients' online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Care workers have limited knowledge of clients' online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists. [ABSTRACT FROM AUTHOR]

This paper uses recent developments in services in the UK as a case study to identify some of the challenges facing the provision of residential supports to people with intellectual disabilities. Three main areas are discussed: (1) responding to existing levels of unmet need and increasing levels of demand; (2) reducing inequalities in access to and the quality of services; and (3) obtaining and demonstrating "best value". In particular, discussion is focused on the relationships between needs, resources, process and outcomes in residential services for people with intellectual disabilities and the implications of these relationships for obtaining "best value". [ABSTRACT FROM AUTHOR]

Background The goal of this study was to adapt a narrative reminiscence program for the special needs of ageing people with mild/moderate intellectual disabilities. Research has shown that stimulating reminiscence in the elderly can be a meaningful activity, and holds promise for positive effects on well‐being. Method In the first stage (10 weeks), the program was developed with 1 group. Evaluation and adjustments to the program were made based on video recordings, the researcher's log, and feedback from participants and support workers. Formative evaluation was performed by means of a within‐group analysis. In the second stage (3 weeks), the program was introduced to 6 other groups. Interviews with professional support workers were subjected to a cross‐case analysis. Results The final program consists of 13 sessions covering different reminiscence themes. The success of reminiscence group work relies on (a) well‐prepared and structured sessions, (b) adequate use of visual triggers, and (c) facilitating, coaching and moderating. Conclusion The program was perceived as a valuable and meaningful activity by all participants. Although reminiscence group work is not therapeutic in nature, it may have therapeutic use for ageing people with intellectual disabilities, and in this sense is worth evaluating. [ABSTRACT FROM AUTHOR]

Background: Often, people with and without intellectual disabilities do not mingle. Research has mostly focused on how to foster "convivial encounters" for social inclusion, but further thinking is needed on situations in which potential encounters do not take place. Method: Discussion of philosophical and urban sociological literature on social interaction in public. Results: In non-encounters, people give subtle non-verbal cues in situations of physical proximity. This can both lead to hurtful experiences of invisibility and positive experiences of micro-recognition. In spite of best efforts, people can position others unintendedly as "strange," which leads to hesitation. Conclusions: This analysis highlights how non-encounters can be both socially inclusive and exclusive. In spite of best intentions, interactions in public spaces also come with tensions. The question of how to transform social culture to encompass difference remains significant. [ABSTRACT FROM AUTHOR]

In forensic settings, patients with intellectual disabilities are overrepresented. A relative novel treatment approach for this population is schema therapy. The goals of schema therapy for offenders with intellectual disabilities are to reduce maladaptive emotional states and to reinforce healthy emotional states and enhancing the patient's ability to ask for help. No studies are examining the effectiveness of this approach. We examined the effectiveness of Schema Therapy for offenders with intellectual disabilities (ST-ID) in terms of emotional states, psychological complaints, and violence risk in six participants. Reliable change analyses showed significant improvements in emotional states and certain psychological complaints. While many questions remain about the effectiveness of ST-ID, our study shows that offenders with ID can benefit from this psychological treatment. [ABSTRACT FROM AUTHOR]

Background The training of healthcare professionals impacts the health of individuals with intellectual disabilities (ID). This study presents an analysis of how medical students at the University of the Witwatersrand, Johannesburg, South Africa, are trained to treat this marginalised population. Methods This was an exploratory qualitative study using multiple methodologies, including a curricular review, 18 purposively selected key informants’ interviews, and 3 focus group discussions, with medical students across 4 relevant teaching departments. Using Lennox and Diggens’ curricular framework, thematic content analysis was conducted to identify dominant themes and subthemes. Results Of Lennox and Diggens’ 15-point model of knowledge, skills, and attitudes, 3 aspects were not taught, and attitudes fared the most poorly whereas skills fared the strongest. Differences in the quality and nature of training offered on clinical rotations were highlighted, and the practical exposure to patients with ID was found to be limited. Conclusions The shortfalls in content and unplanned clinical exposure suggest that a more focused teaching approach to people with ID will result in greater competence and confidence in graduates. [ABSTRACT FROM PUBLISHER]

Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters. Results: A common process of decision-making support was discovered, involving dynamic interaction between the person's will and preferences and supporters' responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision. Conclusion: The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice. [ABSTRACT FROM AUTHOR]

Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents' experiences at the GRCs. In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data. Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices. The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents. [ABSTRACT FROM AUTHOR]

People with severe to profound intellectual disabilities have particular needs for others to help them regulate stress. Such support may be hampered by difficulties in detecting and interpreting expressions of stress. This study aimed to describe and identify stress-related behaviours and sensitive, stress-regulating responses to these behaviours. Video recordings of psychotherapeutic interactions between four clients with severe intellectual disabilities and behavioural problems and two attachment therapists were analysed using a stepwise spiral of analysis approach. Stress-related behaviours were identified with a behaviour rating scale for arousal and valence. Distinct stress-related behaviours were subdivided into stress-specific, non-stress-specific, and client-specific behaviours. Additionally, examples of responsive behaviours to clients' expressions of varying arousal and valence were found. A wide variety of expressions indicative of different levels of arousal were found, with few expressions specific for stress. The descriptions of responsive behaviours might support parents and caregivers in external stress regulation. [ABSTRACT FROM AUTHOR]

Autistic adults with intellectual disabilities (ID) seem to be particularly vulnerable to potentially traumatic experiences and post-traumatic stress disorder (PTSD). Furthermore, this population may be at risk for a different set of traumatic experiences than the general population. However, knowledge is sparse concerning PTSD symptom manifestations in individuals with severe ID. Exploration of PTSD symptom trajectories and manifestations in an adult, autistic man with severe ID. Altered arousal/reactivity and problematic avoidance were the most easily observable symptoms. Avoidance seemed to become more generalised over time, and the impact of PTSD on behaviour, level of functioning, and quality of life was severe. Negligence and coercion in services for autistic adults with ID may involve a traumatic potential for these individuals. Increased awareness of this risk is needed in service providers and mental health professionals. [ABSTRACT FROM AUTHOR]

Supporting participation in decision making is complex, dynamic and multifactorial. The aim of this study was to understand more about the difficulties parents of adults with intellectual disabilities experienced in providing decision support and their strategies for resolving them. Participants were 23 parents who regularly provided decision support for their adult with intellectual disabilities. Most of the adults (19) lived at home. Parents participated in semi-structured interviews at least three times during the study. We applied a social-constructionist theoretical perspective and a template approach for analysis. Findings fell into three core categories, making the right decision, factors that made decision support difficult, and strategies to manage uncertainty, which included controlling, influencing, expanding the adult's horizons and enabling risk. The knowledge gained will help in building the capacity of parents to provide decision support that better understands and respects the will and preferences of the person they support. [ABSTRACT FROM AUTHOR]

Body experience is an important facet of psychosocial functioning and health. However, to date no test exists to measure body experience in adults with mild intellectual disability and borderline intellectual functioning (MID-BIF). We therefore adapted the Body Experience Questionnaire (BEQ) to this group, resulting in the BEQ-mb, and evaluated its usability, comprehensibility, and reliability. The BEQ-mb was developed in five stages: concept development, focus group, verbal reports, pilot testing, and evaluation. The BEQ-mb is applicable in, and comprehensible by, adults with MID-BIF. Internal consistency is good for the total scale and the body awareness and body satisfaction subscales, but low for the body attitude subscale. Test–retest reliability is excellent for the total scale and the subscales. The BEQ-mb unlocks new opportunities for clinical examination and research on body experience. Future research is needed to investigate its structural validity. [ABSTRACT FROM AUTHOR]

The prevalence of Substance Use Disorder (SUD) in people with Mild Intellectual Disability and Borderline Intellectual Functioning (MID-BIF) is high and evidence-based treatment programs are scarce. The present study describes the development of a personalised SUD treatment for people with MID-BIF. The personalised SUD treatment is developed according to the steps of the Intervention Mapping approach, based on literature review, theoretical intervention methods, clinical experience and consultation with experts in the field of addiction and intellectual disability care. We developed a treatment manual called Take it Personal!+. Take it Personal!+ aims to reduce substance use, is based on motivational interviewing and cognitive behavior therapy and personalised based on the client's personality profile. Furthermore, an mHealth application supports the treatment sessions. Take it Personal!+ is the first personalised SUD treatment for individuals with MID-BIF. Future research should test the effectiveness of Take it Personal!+ in reducing SU. [ABSTRACT FROM AUTHOR]

The life expectancy of people with profound intellectual and multiple disabilities (PIMD) is increasing and parents express concerns about being possibly outlived by their child with PIMD. However, little is known about the nature of these concerns. We interviewed 27 parents of persons with PIMD and analysed the data thematically, to explore parents' concerns about being outlived by their child. Most parents hoped to outlive their child with PIMD and related this to the expectation of a decreased quality of life (QoL) of their child, when they would have passed away. The uncertainty about who would fulfil their parental roles in the future contributed to parents' concerns and sometimes resulted in feelings of despair. Our study provides insight into the nature and gravity of parents' concerns. The division of parents' concerns into roles helps to address future care and support gaps for people with PIMD. [ABSTRACT FROM AUTHOR]

The present study examined the psychometric properties of the Anger Bodily Sensations Interview – intellectual disabilities (ABSI-id), an adapted instrument to measure anger-related interoceptive awareness (IA) in individuals with mild intellectual disabilities or borderline intellectual functioning (MID-BIF). The ABSI-id was individually administered to 208 clients (51% male) with MID-BIF in residential facilities. An EFA and CFA showed a two-factor structure of the ABSI-id, including nine items. The ABSI-id had moderate to good reliability, with an internal consistency ranging from acceptable to good, a test–retest reliability ranging from moderate to good and an adequate convergent validity. There was no significant difference in ABSI-id scores between individuals with MID and BIF. The ABSI-id is a promising instrument for measuring anger-related IA, additional research is needed on validity and sensitivity of change. [ABSTRACT FROM AUTHOR]

Background: This article aims to present the results of a study on the facilitators and obstacles to community participation in inclusive settings for people with intellectual disabilities (ID) in Québec City (Canada), as perceived by adults with ID and key individuals involved in their daily lives. Method: Semi-structured interviews were conducted, followed by an inductive thematic analysis process. Results: Twenty participants shared their perspectives on the factors that influence community participation of adults with ID in inclusive settings. Overall, they revolved around physical and financial accessibility, openness of the members of the groups attended, as well as the adaptations and support provided to promote the people's active participation. Conclusions: Offering social support and interventions that truly help adults with ID create meaningful relationships is crucial. Training community members is also fundamental to creating environments where people with ID can feel that they belong. [ABSTRACT FROM AUTHOR]

An editorial is presented on the COVID-19 and people with intellectual disabilities including growing international concern that people with intellectual disabilities of whom have compromised health being particularly vulnerable to infection by COVID-19.

In this study we aimed to explore how intelligence and executive functioning are related to decision-making regarding social situations in persons with mild ID. We studied 80 vocational school students with mild ID; the controls were 80 students of a similar age. We assessed decision-making ability with the Important Life Decisions Task. Intelligence was assessed with the Wechsler Adult Intelligence Scale – Revised (WAIS-R), and executive functioning with the Wisconsin Card Sorting Test (WCST). The WAIS-R Verbal Comprehension and the Memory/Freedom From Distractibility factors predicted the decision-making score. Executive functioning was not related to decision-making. There was no interaction between the group and other variables. Verbal intellectual abilities and abilities related to short-term memory and attention play an important role in decision-making regarding social situations. The difference in performance between persons with ID and the control group should be regarded as quantitative and not qualitative. [ABSTRACT FROM AUTHOR]