Search

Access to equal healthcare is a priority for people with intellectual disabilities. Most studies have focused on primary care providers; however, the administration of inclusive healthcare also relies on medical specialists, who should be considered a specific group because their practice varies significantly in this regard. Semi-directive interviews were conducted with 12 medical specialists to explore their representations regarding the care of people with intellectual disabilities. An inductive thematic analysis was applied to the data. The results highlighted a significant heterogeneity between practitioners’ representations of people with intellectual disabilities in healthcare, current practices, and their perceptions and expectations in the process of ensuring quality care. This study highlights the importance of considering medical specialists’ awareness raising and training to handle consultations with people with intellectual disabilities. From a broader perspective, a clear political framework to guide healthcare practices at the national level should be developed.

Summary This article presents the results of a research project involving 10 people with intellectual disabilities concerning their idea of “a good life” in a residential care setting, within a context of personal budgets. We introduce the capability approach as a framework for focusing on the opportunities personal budgets offer for people with intellectual disabilities. We make use of qualitative interviews following a photovoice project in which people with intellectual disabilities documented their lives in order to research what they deem valuable and aspire to. Findings In the analysis section, we present the elements which the participants identified as limiting and enhancing for imagining their future. From their stories, we learn that their aspirations are nourished by the encounters and social bonds that they engage in within a residential care context. The results make clear that the use of money offers opportunities to elaborate on what is already known and enables the realization of aspirations, while interactions with significant others more often than not encourage participants to explore and try out changes and thus further develop people’s set of aspirations. Applications In drawing the discussion to a close, we explore the implications these stories might have for understanding the role of aspirations in the practice of care and support for people with intellectual disabilities. The findings encourage us to think about a relational pedagogy and to address this in the practices of personal budgets.

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

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

Summary People with intellectual disabilities still struggle to enjoy intimate and sexual relationships. Social workers have a potentially key role in realizing the intimate and sexual rights of people with intellectual disabilities, particularly in residential settings. However, we still know relatively little about the meaning social workers attribute to such relationships. The present study addresses this lacuna by examining the perceptions and practices of 15 Israeli social workers in residential settings. Findings Drawing on thematic analysis of semi-structured interviews, two key themes are identified: (1) Intimate relationships as a human need, and (2) Intimacy with a question mark. Combined, these themes depict an ambivalent position toward residents’ intimate and sexual relationships. Applications The study's findings highlight the need to incorporate intimacy and sexuality within social work education, with a particular focus on people with intellectual disabilities and positive aspects of intimacy and sexuality. From a policy perspective, the findings urge state and professional authorities to develop national guidelines on realizing intimate rights.

This study analyzes the relationship between the employability competencies acquired after completing an employment training program at university and the subsequent access to employment of young people with intellectual disabilities. To do this, the employability competencies of 145 students were analyzed at the end of the program (T1) and information was gathered on their career path at the time of the study (T2) (n = 72). Sixty-two per cent of the participants have had at least one job since graduation. Job competencies increase the probability of accessing and retaining employment in students who graduated at least 2 years before ( X2 = 17.598; p < .001; r2 = .583). These results compel us to complement employment training programs with new opportunities and greater job accessibility.

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.

Summary Individuals with intellectual disabilities who might have been previously placed into segregated institutions now live independently in the community, supported by the necessary community care services. Nevertheless, social inclusion can be deemed successful only if they can positively interact with the various microsystems of the community. The disruption of social service provision due to the COVID-19 pandemic allowed us to evaluate other systems of support in the community. By adopting a bioecological perspective, qualitative methods are used to examine the interactions between people with intellectual disabilities and their social environment during the pandemic primarily based on focus group sessions with 17 social workers and 12 caregivers. Findings Three overarching themes are identified through a thematic analysis: (1) limited social ties with the community that could provide support; (2) professional support as the main source of assistance; and (3) limited resources on how to care for people with intellectual disabilities. Applications The results show that unilateral systems of support with limited participation of other systems lead people with intellectual disabilities to live segregated lives, even though they reside in the community. To fully realize the right of inclusion in society of all people with intellectual disabilities, further efforts are required to promote informal social care for people with intellectual disabilities. There is a need for a shared-care model that provides care in the community by the community through the establishment of neighborly relations and expansion of the social networks of people with intellectual disabilities.

Research has drawn attention to the stigma and high rates of victimization among people with intellectual disabilities (ID) and an overlap between bias and non-bias victimization. However, studies of bias events or hate crime involving persons with ID are scarce. Using a self-report measure, we analyze lifetime bias victimization in a sample of 260 adults diagnosed with ID (age M = 41.7, SD = 12.0; 59.2% men), of whom 92 experienced bias victimization (age M = 41.2, SD = 11.9; 54.3% men), and compare the number of different types of victimization and the poly-victimization status between bias and non-bias victims. We also examine the following features: the victim, offender(s), victim–offender relationship, and location. Results show that bias victims experience a higher number of different types of victimization than non-bias victims ( M = 7.74 and 4.96, respectively; p rb=.37, ξ=.42) and are four times more likely to be poly-victims than non-bias victims (odds ratio [ OR] = 4.37; 95% CI, p

The need to foster resilience amongst young people with intellectual disabilities is increasingly recognised within policy. Critically, understanding of the actual means by which this aspiration might be most sensitively and effectively met is considered weak. This paper reports on an exploratory case-study of a social enterprise community café – The Usual Place - that through the promotion of employability, seeks to promote resilience amongst its young ‘trainees’ with intellectual disabilities. Two research questions were set: “ how is ‘resilience’ conceptualized within the organisation” and “ what features within the organisation are significant in fostering resilience”? We identify a range of significant features associated with being able to successfully foster resilience – the need for a foundational ‘whole organisation’(settings) approach based on high levels of participation and choice; the negotiation of a constructive dynamic tension between ‘support’ and ‘exposure’; and the embedding of these actions in embodied actions and day-to-day organisational activities.

While the COVID-19 crisis has affected people all around the world, it has not affected everyone in the same way. Besides glaring international differences, disparities in personal and situational factors have resulted in strikingly dissimilar effects even on people within the same country. Special attention is required in this regard for people with intellectual disabilities (ID) who are vulnerable to marginalization and precarization during crises as concerns over safety and public health are likely to trump consideration for inclusion and care. This article explores the lived experiences during the pandemic of people with ID living in care institutions in the Netherlands. Particular attention is paid to the challenges involved in living through periods of confinement and separation in what may be called “vulnerable spaces.” Drawing from interviews with individuals with a mild ID who have been restricted in seeing family and friends through the closed access of group homes to visits from outsiders, as well as interviews with their relatives and support workers, the article considers the ways in which stakeholders have responded to these spatial policies and negotiated the meaning of living space in times of crisis.

This study aimed to explore key professionals’ attitudes towards people with intellectual disability (ID) and inclusion of said people in the community. Eighteen participants from three professional groups, comprising health practitioners (medical doctors, psychologists), mainstream/special education teachers, and religious leaders (Islam, Catholicism, Protestantism, Hinduism, and Buddhism) were recruited. Semistructured interviews, aided by two vignettes depicting mild and severe ID, were conducted. Thematic analysis was used to analyse the data. Seven themes were identified exploring: perceived causes; use of terminology; attitudes towards people with ID; attitudes towards inclusion, religion and ID; family-centric support; and challenges faced by people with ID in a wider context. Perceived capabilities of persons with ID were found to influence attitudes towards people with ID and their inclusion. Availability and accessibility of good quality services were also found to influence attitudes towards the inclusion of people with ID. Cultural factors related to attitudes towards ID are discussed.

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.

IntroductionSocial inclusion for people with intellectual disabilities includes engagement in the occupations of daily life. Given the focus on people with intellectual disabilities living independ...

Background The COVID-19 pandemic has posed a great risk to the mental health of health workers (HWs). There are likely to be particular concerns for staff working with adults with an intellectual disability, where infection control may be more challenging. Method We conducted a systematic review of original research examining the mental health of HWs working with people with intellectual disability, published between March 2020 and July 2021. Results Five original research studies were included. A high proportion of HWs working with people with intellectual disability reported having had poor mental health including stress, anxiety, and depression. This manifested in similar patterns as for other HWs and also some specific patterns seen as the need to manage increased rates of mental health issues of the people they support. Sources of support and resilience were also identified. Conclusion The support system should target risk factors, answer unmet needs, and build resilience. More research is also required on the ongoing and long-term effects.

The way criminal responsibility modifications are applied in intellectual disability and borderline intellectual functioning cases remains empirically unexplored in Spain. We retrieved 100 IQ assessments that involved criminal proceedings, Spanish adult defendants, intelligence quotient testing and intellectual disability/borderline intellectual functioning diagnoses. Intellectual disability and borderline intellectual functioning were diagnosed in 26% and 74% of cases. Intellectual disability diagnoses were significantly associated with forensic doctor support for lack of capacity to be found guilty because of intellectual impairment. Criminal responsibility was modified in 65.8% of convictions and a safety measure was dictated in 10.1%. Courts’ decision of modified responsibility because of intellectual impairment was positively associated with the defendant’s IQ, the forensic diagnosis, the forensic opinion about impaired capacity to be found guilty and the Prosecutor’s position. Any level of intellectual impairment deserves a forensic assessment because of its potential impact on criminal responsibility. Yet, safety measures are underused, so a unique opportunity to help is being missed.

People with intellectual disabilities (ID) are vulnerable to multiple long-term conditions (MLTC). However, in the UK, there are no individual strategies tailored for them. This study synthesised evidence on prevalence of MLTC in people with ID alongside risk factors, outcomes and preventative strategies. The scoping review used the tool Abstrackr to search retrieved articles from three bibliographic databases. Of 933 articles initially screened and further identified, 20 papers met our inclusion criteria. Our findings revealed significant data on prevalence of MLTC in people with ID across the studies, but very limited data on clusters or patterns of co-occurrence in this population. The majority of papers explored risk factors and strategies for prevention of MLTC, but far fewer compared outcomes by MLTC. The identified gaps in the literature indicate the need for further research to identify clusters of MLTC and tailored prevention strategies to reduce poor outcomes in this population.

People with intellectual disabilities benefit from many forms of institutional support, which include residential, rehabilitation, and educational services. Changes caused by the pandemic, especially the introduction of new rules relating to various aspects of life, raised several challenges and problems in the functioning of these institutions and for the people with disabilities during the COVID-19 pandemic. The research concerned facilities providing services for people with intellectual disabilities in Poland during the pandemic. The research goal was to determine what changes took place in the rehabilitation and care institutions during the pandemic in terms of their organization and the functioning of their clients and personnel. An online questionnaire was used. The respondents were institution employees. Data showed a number of preventive, educational, and supportive activities carried out by the institutions. Adverse changes in the psychosocial functioning of people with intellectual disabilities and other problems during the pandemic were reported.

Background and purpose: The purpose of this study was to assess the level of mental disorders and challenging behaviour in individuals with intellectual disability (ID) supported by specialized services, but without a prior psychiatric diagnosis, and to compare the levels of different disorders depending on the severity of ID. Methods: This is a cross-sectional study (N = 142) of population with ID. Inclusion criteria were the following: adult patients with ID and with no previous psychiatric diagnosis prior to this survey. The Wechsler Adults Intelligence Scale-II, the Psychiatric Assessment Schedule for Adults with Developmental Disability checklist and clinical interview, the Diagnostic Assessment for the Severely Handicapped scale and the Inventory for Client and Agency Planning were the assessment tools. Results: A previously undiagnosed mental disorder was found in 29.6% of the sample. The most prevalent mental disorders were major depressive and anxiety disorders. An association between psychiatric comorbidity and challenging behaviour was found only for mild/moderate ID, especially for affective disorders. Conclusions: The presence of a psychiatric as well as a medical comorbidity is associated with severe ID, unlike challenging behaviour. Clinical limitations of the study have been discussed., publishedVersion

Objective: The Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) treatment guidelines set the zeitgeist for psychiatric practice in Australasia. This review conceptualises the current approach to treatment of individuals with an intellectual disability and co-occurring mental illness in RANZCP guidelines, and its potential impact. Conclusions: The enduring omission of people with an intellectual disability and co-occurring mental illness from RANZCP clinical guidelines is a missed opportunity in normalising care and optimising outcomes for people with an intellectual disability. There are substantial cultural, political and historical overlays contributing to the ongoing divide between health and disability. In developing psychiatric guidelines, authors should consider including people with co-occurring intellectual disability as a specific population, that requires distinctive consideration.

This study sought to explore different understandings of participation in daily activity services among people with intellectual disabilities. Using a pedagogical sociocultural perspective, the research focused on individuals’ perspectives and understandings as well as their account of social interaction, working and learning. In all, 17 people working in daily activity services were interviewed once, and, of these, 14 were interviewed a second time. Using qualitative content analysis, two themes and three categories were singled out. The results show that participation can be understood in two major ways: social interaction and performing work tasks.

Services available for people with disabilities in Bolivia tend to be fragmented and costly. Children and adults with intellectual disabilities are more likely to have a related communication disability and are thus both literally and metaphorically excluded from having a voice. The following research aimed to explore the experiences of accessing services by people with communication disabilities in Bolivia through semi-structured interviews and one focus group carried out with family members, professionals, service providers, educators and policymakers. It aimed to establish the nature of current services in Bolivia where knowledge, information and resources are scarce. Findings indicated the need to consider an alternative to a medical model approach through a focus on empowering other stakeholders to participate more fully in meeting communication support needs. Conclusions plot ideas for future service delivery and emphasize the central power of sharing practical and expert knowledge.

Although people with intellectual disabilities have a low rate of participation in faith communities, such participation has been identified as playing a significant role in their quality of life. This literature review examines the literature for recommendations of specific strategies to increase the inclusion of people with intellectual disabilities in the life and activities of faith communities. The results indicate that there is a need for meaningful inclusion of people with disabilities in faith communities beyond physical presence. Several strategies for doing so are recommended, including utilizing the expertise of special educators, using explicit teaching strategies, and providing training for leaders and members of faith communities. Recommendations for further research are discussed.

People with intellectual disabilities are 10 times more likely to have a visual impairment, compared to the wider population, yet lack of awareness of their particular vision needs among health and social care professionals can act as a barrier to accessing appropriate care and treatment. Vision awareness training was delivered to 104 health and social care professionals who work with people with intellectual disabilities over a 12-month period. In all, 90 (87%) completed pre- and post-training questionnaires, using repeat measures, to determine training outcomes. Vision awareness training was found to significantly increase health and social care professionals’ knowledge/awareness of the vision needs of people with intellectual disabilities, and their confidence in recognising signs of sights loss and recommending eye test referrals for their clients. Vision awareness training addresses a recognised barrier to effective vision health care delivery for people with intellectual disabilities.

When police officers interview people with intellectual disabilities who allege sexual assault and rape, they must establish rapport with the interviewee but deal with their distress in a way that does not compromise the interview’s impartiality and its acceptability in court. Inspection of 19 videotaped interviews from an English police force’s records reveals that the officers deal with expressed distress by choosing among three practices: minimal (e.g. okay) or no acknowledgement, acknowledging the expressed emotion as a matter of the complainant’s difficulty in proceeding (e.g. take your time) and rarely (and only if the complainants were apparently unable to resume their talk) explicit reference to their emotion (e.g. it’s obviously upsetting for you). We discuss these practices as ways of managing the conflicting demands of rapport and evidence-gathering.

The benefits of physical activity and active play for children and young people are well established. However, there is a lack of physical activity research involving children and young people with intellectual disabilities. This study investigated habitual physical activity and recess play behaviour in 70 5- to 15-year-old participants with intellectual disabilities using objective methods (accelerometers) and systematic observation techniques. Results showed that few children were active enough to benefit their physical health (23% of the cohort). No differences in habitual physical activity, sedentary behaviour, or recess play behaviours were observed between boys and girls. Participants spent most of their recess time alone or playing in small groups, with no participants engaging in large group play. Older participants spent more recess time playing in small groups rather than playing alone and participants with Autistic Spectrum Disorder spent more time engaged in active pursuits and less time standing than non-Autism Spectrum Disorder participants. Positive correlations were observed between time spent alone and physical activity. These findings contrast with those typically observed in a mainstream school setting. In conclusion, interventions designed from formative research are needed to promote physical activity within this population. Implications for school psychologists are discussed.

Current research using action methods and creative dramatics with people with intellectual and psychiatric disabilities is reviewed, with a focus on the uses and distinction between psychodrama and dramatherapy. The Interactive-Behavioral Therapy/Active Cognitive Treatment (IBT-ACT) model is introduced and suggestions for future research are explored.

People with intellectual disabilities experience a range of health inequalities. It is important to investigate possible contributory factors that may lead to these inequalities. This qualitative study identified some difficulties for healthy eating in day centres. (1) Service users and their family carers were aware of healthy food choices but framed these as diets for weight loss rather than as everyday eating. (2) Paid carers and managers regarded the principle of service user autonomy and choice as paramount, which meant that they felt limited in their capacity to influence food choices, which they attributed to the home environment. (3) Carers used food as a treat, a reward and for social bonding with service users. (4) Service users’ food choices modelled other service users’ and carers’ choices at the time. It is suggested that healthy eating should be made more of a priority in day care, with a view to promoting exemplarily behaviour that might influence food choice at home.

Deinstitutionalisation has influenced the life situation for people with intellectual disabilities, whilst the experiences of health promotion in group homes now are limited. This study aimed to explore aspects important to consider when promoting health amongst persons with intellectual disabilities in group homes, from the perspective of professionals. Semi-structured interviews were conducted with seven professionals and were analysed with thematic analysis. The overarching theme ‘sense of security’ was identified as a prerequisite for health promotion, together with the sub-themes ‘resources in the organisation’, for example, respectful treatment of the residents, and `resources of the residents', for example, meaningfulness and social connectedness. Findings were discussed from the perspective of health assets which is defined as the factors contributing to maintain and sustain health. The importance of strengthening external assets, that is, resources in the society and the organisation, to promote internal assets, that is, residents’ individual resources, and ultimately their health, is emphasised.

People with intellectual disabilities have a higher risk of being abused than other people, but to date research has not explored their views regarding abuse. This article reports the findings relating to one question within a participatory research study concerning the abuse of people with intellectual disabilities. This question asked what people with intellectual disabilities’ views are concerning abuse. Data were gathered via individual interviews ( n = 14) and focus groups (7 groups involving 47 people in total), which were then analysed via a process of sorting statements into themes followed by group discussion and analysis of these themes. Participants expressed a range of views regarding abuse, some of which revealed strong emotions: a number of participants indicated that abuse could make people feel as though their lives are not worth living. People with intellectual disabilities can discuss their feelings around abuse and recognise the impact this has on their lives. There is, however, a need for improved responses to disclosures of abuse and the provision of ongoing support to address psychological issues.

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalizing’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalized care. The research identifies the interactions between tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Furthermore, we document the properties of emergent interaction − supported by a tool oriented to enabling music improvisation − as potentially resisting assumptions regarding normalization.

This project, conducted during 2010 by a researcher working with a self-advocacy group, investigated the implementation of Annual Health Checks (AHCs) for people with intellectual disabilities in Oxfordshire, where only 26.1 percent of AHCs were completed in 2009–10 (national average 41 percent). AHCs were introduced in England in 2008 as a response to findings that people with intellectual disabilities have significantly worse health care than other groups. GP practices are financially incentivized to offer AHCs. This study found that slow progress in implementing AHCs was attributable to: uncertainty over who was eligible; limited awareness in general practices about the legal duty to make ‘reasonable adjustments’ to facilitate access; limited awareness of AHCs and their potential benefits amongst carers and adults with intellectual disabilities; and in some cases scepticism that AHCs were either necessary or beneficial. The article also explores the benefits of undertaking this project in partnership with a self-advocacy group.

Transition planning using a person-centred approach has, in the main, failed to shape service provision. We offer an alternative based on an ecological understanding of human development linked to public health approaches that prioritise whole system planning. A total of 43 young people with intellectual disabilities, in Bradford, England, who were approaching transition from school or college were recruited to a qualitative study. Their ethnic breakdown was as follows: 16 white British, 24 Pakistani, 2 Bangladeshi and 1 Black African. Each young person was interviewed twice, at recruitment and a year later, to observe any changes in their social networks during transition. Interviews were undertaken with a semi-structured interview schedule and with the pictorial approach of Talking Mats. Both the networks the young people live within, and their sense of what the future might hold for them, are described and linked to Bronfenbrenner’s ecological model of human development. The importance of the family and school is emphasised, as is the absence of engagement in leisure activities and work. Transition planning needs to start with mapping the systems individuals live within, areas of strength should be supported and parts of the system, which are not fit for purpose for these young people, should be prioritised for interventions.

The article reports the evaluation of a small-scale–supported employment project in a local authority in England. The study examined whether or not the peer support model could be used to deliver supported employment to a group of young people with intellectual disabilities. We utilised a mixed-method approach involving activity data, family interviews and a postal survey with participating employers. Five families took part in the study. Our findings show that families viewed the project positively, although it was insufficiently embedded in the wider transition planning. The study indicates that the peer support model may represent a useful addition to the conventional supported employment efforts for this population. However, more research is needed to demonstrate the benefits of peer support over and above the benefits of conventional supported employment for young people in post-school transition. In particular, producing a better evidence base on the exact impact of peer support on service users’ experiences is recommended.

Objectives: To develop a model for breaking bad news that meets the needs of people with intellectual disabilities (IDs). Design: A two-phase qualitative study featuring: (I) focus group meetings, on-line focus groups and one-to-one interviews; (II) structured feedback from participants and other stakeholders. Setting: Participants were drawn from National Health Service hospitals, Primary Care Trusts, independent organisations and on-line forums across England. Participants: 109 participants were purposively selected: 21 people with mild/moderate IDs, 28 family carers, 26 ID professionals and 34 general health professionals. Outcome measure: Feedback on a preliminary model for breaking bad news to people with IDs was collected from 60 participants and other stakeholders to assess relevance and acceptability, before the model was finalised. Results: Breaking bad news is best seen as a process, not an event or a linear series of events. Bad news situations usually constitute a wide range of discrete items or chunks of information. ‘Building a foundation of knowledge’ is central to the model. Information needs to be broken down into singular chunks of knowledge that can be added over time to people’s existing framework of knowledge. Three other aspects should be considered at all times: capacity, people and support. Conclusions: Patients who have IDs do not easily process verbal information in a clinical setting. The new model for breaking bad news to people with IDs needs to be tested in practice using robust outcome measures. The model’s relevance to wider patient groups should also be evaluated.

Recent research suggests that person centred planning (PCP) can have a positive impact on the lives of people with intellectual disabilities. This article presents data from open-ended comments collected during research on the impact of PCP on the life experiences of 65 people with intellectual disabilities living in England. These comments addressed the goals set prior to and during PCP, and the main benefits of PCP for participants. The results suggest that PCP led to increased goal setting in a range of goal categories. This was reflected in the most common main benefit of PCP of `increased activities and opportunities' reported for 57 percent of participants. For 48 percent of participants, a main benefit of PCP was that they felt better in themselves, in terms of happiness or self-esteem. This must surely be the ultimate aim of those seeking to improve the quality of life of people with intellectual disabilities.

Managers and caregivers in community residences for people with intellectual disabilities are expected both to promote residents’ health and to support their autonomy. The aim of this article was to explore variation in views among managers and caregivers on the role of staff in health promotion. A qualitative study was conducted using semi-structured interviews with six managers and six caregivers. The analysis used a phenomenographic approach to categorize variation in views. We identified five qualitatively different main categories of roles staff play in health promotion: the parent, the manipulator, the coach, the educator and the libertarian. In addition lifestyle-related risk factors for ill-health and barriers to a healthy lifestyle were analysed and described using qualitative content analysis. The results highlight the ethical conflict that faces staff trying to support a healthy lifestyle as well as the autonomy of the residents.

People strive to make meaning out of the death of their loved ones. People with intellectual disabilities, however, may not be actively involved in death and may therefore experience disenfranchised grief. Bereavement support for this population remains at best inconsistent across the UK. The aim of this article is to further explore a bereavement support model recently developed. A case study is utilized to demonstrate the practicalities inherent in the integrated approach offered. A bereavement support framework can provide a holistic perspective for people with intellectual disabilities when integrated with a systems approach to care delivery. The resultant strategy incorporates practical ideas that address the bereavement needs of people with intellectual disabilities, encapsulating all aspects of current and future care delivery. Finally, core recommendations are offered for consideration.

Little is known about the views of the primary and secondary support offered to people with intellectual disabilities by formal carers around the time of a death of a loved one. This paper investigates the perceptions of the types of support provided by front-line staff to this population at the time of, and following, bereavement.In total, 11 people with intellectual disabilities participated in semi-structured interviews. Practical supports (for example, involvement in events surrounding the death and access to the rites of passage) provided to these individuals were reported to be positive interventions, whereas the provision of emotional support (for example, formal and informal supportive counselling) by front-line staff were cited by the participants to be lacking. The use of alternative approaches (for example, reminiscence work, the creation of a life story book/family tree, art therapy and pictorial material) was also reported to be limited.These findings highlight the need for education and training to provide front-line staff caring for people with intellectual disabilities with the insights, knowledge and skills necessary to practically and emotionally support this population who are facing the loss of a loved one. In addition, these training needs should be aligned with ongoing managerial and specialist bereavement supports, so that the specific needs of people with intellectual disabilities can be fully addressed.

Over several years, there has been much debate about the best way to manage challenging behaviour. Although national guidance highlights the importance of meaningful occupation, it is unclear to what extent this helps. This systematic review of the literature aimed to answer the question, ‘does engagement in meaningful occupation reduce challenging behaviour in people with intellectual disability?’ By searching a range of databases, electronic resources and web pages, 13 relevant articles were identified. Additionally, experts in the field were contacted, hand searches were performed and citation searches were carried out. These 13 articles were critically appraised and analysed using narrative synthesis. Although the amount of research identified was limited and the methodological quality was variable, some broad themes arose. A skilled and structured approach for carrying out occupation may be effective in reducing challenging behaviour; however, more robust research is needed before definitive conclusions can be drawn.

This study evaluates a multifactorial school-based intervention with the aim of decreasing cardiometabolic risk factors by means of a healthy lifestyle, primarily with daily physical activity and healthy food during school hours, at an upper secondary school for students with intellectual disabilities. The outcome is measured in terms of cardiometabolic risk factors and cardiovascular fitness, both known to increase the risk of future cardiovascular disease, type 2 diabetes and cancer. Two years of intervention resulted in a positive trend in several measured cardiometabolic risk factors, with no increase in fat mass. Cardiovascular fitness levels were unchanged. We conclude that a healthy school environment can contribute to a deceleration of both fat mass gain and loss of cardiovascular fitness.

We examine ethical issues that emerged during a community-based participatory research (CBPR) study in Toronto, Canada, exploring sexual health attitudes and practices among lesbian, gay, bisexual, trans, queer, and questioning (LGBTQ) young people (ages 17–26) labeled with intellectual disabilities. These ethical concerns included: (1) managing the risk of coercion, (2) consent to participate in the study, (3) issues of confidentiality and disclosure, (4) balancing beneficence with self-determination, and (5) role conflict for researcher-practitioners who participate in CBPR projects. Incorporating critical disability perspectives and a heightened awareness of professional role conflict into CBPR practices has the potential to foster development of more inclusive and accessible sexual health initiatives and research environments.

The aim of this study is to provide a survey of systematic reviews that have evaluated the effects of psychosocial interventions for adult people with intellectual disabilities and/or an autistic syndrome with concurrent mental health problems. Reviews for inclusion were identified through searches of 10 electronic databases. The authors found that 3 out of 126 published reviews met the inclusion criteria for interventions, population, and being considered a systematic review. The results imply a weak scientific support for behavioral therapy, cognitive-behavioral therapy, and some forms of integrated care and support. However, the primary studies included in the reviews have several methodological shortcomings. The results suggest future research initiatives in the direction of more effectiveness studies of good quality and reproduction of high-quality systematic reviews.

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient’s difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported “social desirability” were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended.

Growing numbers of people with intellectual disabilities (ID) are in need of palliative care, but there is inequity of access to palliative care services for this group. This study investigates the issues and difficulties arising for palliative care staff in providing care for people with ID. Semi-structured interviews were conducted with 32 palliative care professionals in London. Factors affecting palliative care provision for people with ID included social issues (home situation and family issues), emotional and cognitive issues (fear, patient understanding, communication, cooperation and capacity to consent), problems with assessment, and the impact on staff and other patients. An underlying theme was the need to take more time and to build trust. Despite the challenges, many palliative care staff managed the care of people with ID well. The importance of collaboration with carers and ID services is highlighted. Further studies are needed to investigate how widespread the problems are. Palliative Medicine 2007; 21 : 493—499