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The dominant idea in debates on social inclusion of people with intellectual disabilities is that social inclusion requires recognition of their ‘sameness’. As a result, most care providers try to enable people with intellectual disabilities to live and participate in ‘normal’ society, ‘in the community’. In this paper, we draw on (Pols, Medicine Health Care and Philosophy 18:81–90, 2015) empirical ethics of care approach to give an in-depth picture of places that have a radically different take on what social inclusion for people with intellectual disabilities looks like: places known as ‘sheltered living institutions’. We argue these places can be seen as ‘communities of difference’ catered to the specific needs and capacities of the residents. We then contend that these communities raise questions about what a good life for people with intellectual disabilities looks like and where and how it ought to be realised; questions not posed very often, as they get muzzled by the dominant rhetoric of normalisation and the emphasis on sameness.

Virtual reality (VR) is a promising tool for training life skills in people with intellectual disabilities. However, there is a lack of evidence surrounding the implementation, suitability, and effectiveness of VR training in this population. The present study investigated the effectiveness of VR training for people with intellectual disabilities by assessing (1) their ability to complete basic tasks in VR, (2) real-world transfer and skill generalisation, and (3) the individual characteristics of participants able to benefit from VR training. Thirty-two participants with an intellectual disability of varying severity completed a waste management training intervention in VR that involved sorting 18 items into three bins. Real-world performance was measured at pre-test, post-test, and delayed time points. The number of VR training sessions varied as training ceased when participants met the learning target (≈ 90% correct). A survival analysis assessed training success probability as a function of the number of training sessions with participants split by their level of adaptive functioning (as measured on the Adaptive Behaviour Assessment System Third Edition). The learning target was met by 19 participants (59.4%) within ten sessions (Mdn = 8.5, IQR 4–10). Real-world performance significantly improved from pre- to post-test and pre- to delayed test. There was no significant difference from post- to delayed test. Further, there was a significant positive relationship between adaptive functioning and change in the real-world assessment from the pre-test to the post- and delayed tests. VR facilitated the learning of most participants, which led to demonstrations of real-world transfer and skill generalisation. The present study identified a relationship between adaptive functioning and success in VR training. The survival curve may assist in planning future studies and training programs.

[EN] The fgure of the sexual assistant is increasingly demanded as a right in the disabilities feld. This fgure requires debate, adaptation to the characteristics of countries and cultures, as well as to the characteristics of people with intellectual and developmental disabilities. This study presents the work carried out with representatives of Spanish organizations of people with intellectual disabilities to develop a proposal for the fgure of support staf for sexual behavior. Together with a rights perspective, this proposal is aligned with the Supports paradigm to better meet the health and behavior needs of users. The fgure is framed within the auto-erotic and therapeutic model of sexual assistance. This fgure excludes characteristics of the erotic model that involves interaction or sexual exchange between the sexual assistant and the individual with a disability. Several advantages and disadvan tages need to be carefully considered before implementing this support in a delivery service model. We argue that the proposed fgure requires specifc accreditation, training, and monitoring., Publicación en abierto financiada por el Consorcio de Bibliotecas Universitarias de Castilla y León (BUCLE), con cargo al Programa Operativo 2014ES16RFOP009 FEDER 2014-2020 DE CASTILLA Y LEÓN, Actuación:20007-CL - Apoyo Consorcio BUCLE.

This research study tested an intervention, based on autonomous teams and the service co-creation approach, to improve the social inclusion and self-determination (as indicators of quality of life) of people with intellectual disability. Members of the autonomous teams (professionals, people with intellectual disability, and family members) cooperated to plan and carry out a project. A total of 72 autonomous teams participated (experimental condition). Each team designed its action plan to be implemented during eight weeks. Three measurement times were used: before the intervention (T1), four (T2) and eight (T3) weeks after the starting point. Family members (experimental group, N = 117; control group, N = 187) reported on the social inclusion and self-determination of their relative with intellectual disability. Scores in the control group remained stable over time, whereas scores in the experimental group changed significantly. Social inclusion increased (T2), and later stabilized (T3). By contrast, self-determination increased (T2), but this improvement was subsequently reduced (T3).

Introduction Personal characteristics have been shown to influence the psychosexual development of people with intellectual disabilities. This study aims to evaluate the effectiveness of the SALUDIVERSEX program about affective-sexual education depending on gender, age, relationship status, and degree of autonomy. Methods Two hundred fifty-four participants, clustered within 28 daytime support services, completed a battery of instruments before and after the intervention. The data was collected between January 2021 and April 2022. Results Multilevel analyses, controlling for participant’s dependence within the same center, confirm that the program is equally effective regardless of gender. Likewise, younger participants, who have greater autonomy and who have a partner, seem to benefit more from the intervention. Conclusions This suggests that the SALUDIVERSEX program is a useful tool for educating adults with intellectual disabilities on sexuality, when they possess a high degree of autonomy. Policy Implications The present study contributes to the successful replication of the intervention being tested, providing information on the aspects that may be more difficult to learn depending on the personal characteristics of the individuals.

The aim of this research was to determine the trends in the field of analyzing positive aspects of sexuality of people with intellectual disabilities (ID). In relation to these findings, the possibilities of applying the model of positive sexuality were presented. A literature search covering studies published between 1980 and 2020 was conducted. 19 studies were included. Researchers focus on partnerships, mainly heterosexual ones, associated experiences, plans and ideas. The results show that people with ID are able to report on experiences accompanying relationships and their depiction is relatively rich. People who do not have such experiences expect them in the future, treating them as a very important aspect of life. Referring to the model of positive sexuality, the areas of research in the population of people with intellectual disability were specified, and the theoretical justification of the model, general methodological aspects and practical usefulness were provided.

© 2020, Springer Nature Switzerland AG. This review paper reflects on the existing literature on cognitive behaviour therapy for adults, adolescents and children with intellectual disabilities. People with intellectual disabilities have high rates of comorbid mental health disorders, but low rates of accessing treatments with limited treatment options available to them. Historically, they have been excluded from cognitive-based therapies such as cognitive behaviour therapy. However, recent research has shown that people with mild to moderate intellectual disabilities do have the capacity to engage in cognitive-based interventions. The review highlights the progress that has been made in the field of adapting CBT for people with intellectual disabilities, as well as the current gaps in the literature and suggestions for future research.

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

Dating agencies are a small, but growing sector of social care provision for people with intellectual disabilities. The research reported here is the first to explore, with 10 specialist agencies in the UK, why they were set up, how they operate, the barriers and problems they encounter and their success or otherwise in facilitating relationships for people with intellectual disabilities. A strong case is made for the proliferation of such services.

People with intellectual disabilities (PID) experience the same range of sexual thoughts, feelings, desires, and activities as anyone else. However, the public’s view, especially about stereotypes, is noticeable to have an impact on sexuality and people with disabilities, thereby influencing the population which includes the families of PID, healthcare professionals, and policymakers. This review aims to analyze the opinions of public, family of PID or care staff on the sexuality of PID and the methodology applied. Eleven quantitative peer-reviewed papers were identified. Participants’ attitude could be evaluated as a binary classification of either “Restrictive” or “Acceptance” in four aspects. Demographic background and the conditions of the PID were found to have an influence on people’s attitudes. People acknowledge that PID are not asexual but generally the public holds a more accepting attitude towards the sexuality of PID when compare with family of PID or care staff. Further research on this attitude gap is particularly essential, as this will contribute valuable information and provide insight to policymakers on handling the social, legal and ethical concerns about the sexuality of PID.

The aim of this paper is to analyse the ethical issues relating to privacy that arise in smart homes designed for people with dementia and for people with intellectual disabilities. We outline five different conceptual perspectives on privacy and detail the ways in which smart home technologies may violate residents’ privacy. We specify these privacy threats in a number of areas and under a variety of conceptions of privacy. Furthermore, we illustrate that informed consent may not provide a solution to this problem. We offer a number of recommendations that designers of smart homes for people with dementia and people with intellectual disabilities might follow to ensure the privacy of potential residents.

Mindfulness-based programs have been delivered to people with intellectual disabilities (ID) and aggressive behaviour with some success. The current study is part of a wider feasibility study, which aimed to test the adaptation of the Soles of the Feet (SoF) meditation practice to a six-session, one-to-one intervention delivered within the UK National Health Service. It was designed for adults with ID to help reduce their aggressive behaviour. Eighteen stakeholders were interviewed from three groups: (1) people with ID who took part in the intervention, (2) their supporters, and (3) therapists who delivered the intervention. Thematic analysis was used to analyse the data. The intervention had high acceptability among participants, although they reported mixed outcomes, these outcomes aligned closely with reports on effectiveness from supporters and therapists. Some people with ID and their supporters reported positive changes, such as reduced aggression, increased sociability, and higher quality of life. Some participants reported no change. Four participants and their supporters reported clear benefits from the SoF intervention. For the three that did not report benefits, this appeared to be related to whether the person with ID understood the intervention and/or were motivated to reduce their aggressive behaviour. There was also evidence of supporters needing more direct instruction on how to facilitate the SoF intervention with the person they care for. Suggestions for future research are made, and clinical implications explored.

The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers’ age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. The role of caregivers’ age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with.

This study extended the research on technology-aided programs for promoting the independent performance (practice) of functional motor responses (e.g., arm or leg-foot movements) in people with intellectual disabilities and extensive motor impairments. Specifically, the study assessed (a) the suitability of simple commercial technology (i.e., a smartphone) to monitor the responses targeted and provide stimulation contingent on them, and (b) the impact of response performance on the participants’ level of physical exertion (heart rates) and mood. The results showed that the simple commercial technology was effective in helping the participants independently practice the two target responses selected for them. All participants had a significant increase in their heart rates during the intervention sessions, thus suggesting that the performance of the target responses represented a mild form of physical activity. Moreover, all participants displayed mood improvement (i.e., an increase in indices of happiness) during the intervention sessions. The implications of these results are discussed in terms of (a) new technology solutions for intervention programs with people with intellectual disabilities and extensive motor impairments, and (b) potential benefits of those programs.

People with intellectual disabilities (PID) share the same needs for affectionate and intimate relationships as other people. In this study, a review of the literature was performed to (a) examine the opinions reported in the peer-reviewed literature regarding the sexual experiences of PID and (b) identify factors that contribute to the promotion or restriction of sexual expression by PID. Sixteen qualitative articles were identified from electronic databases and reviewed. People with PID were found to exhibit the same spectrum of sexual life as the general population, and three major themes were identified: abstinence, regulation, and autonomy. Some PID preferred to abstain from sex, whereas others considered engagement in sexual activity to have a hand that affects and influences the rights of PID to engage in sexual activity. Further empirical research on the empowerment of sexual expression of PID and the formation of the unintended invisible hand is needed, as this will provide information to families and welfare systems and thus enhance the self-determination and rights of PID to pursue sexual expression and satisfaction.

The aim of this meta-analysis was to examine the effectiveness of sex education programs for people with intellectual disabilities, exploring the effects of possible moderating variables. 31 independent studies were identified, from 8 research reports published between 1988 and 2017. The results revealed mean effect sizes in favor of the experimental group, being of large magnitude for the components inappropriate behaviors (d = − 1.26) and Decision making (d = − 1.03), and of moderate magnitude for the global effect (d = − .64). The analyses revealed that single-sex groups, publications between 2000 and 2009 and a high degree of training and experience to deliver the programs were moderating variables that had a great effect on the effectiveness of the programs for the global effect component. Similar results were obtained for the decision making dimension while no significant moderating variables were found for the inappropriate behaviors dimension. Understanding how effective sex educational programs work is essential to this social group. Practical implications are discussed from the results obtained.

The goal of this paper is to explore the wellness of adult siblings of people with intellectual disabilities (ID) related to caregiving experiences and outcomes, supports for siblings, gaps in the literature, and future directions to advance research in this area. Findings are shared from the literature on caregiver experiences of adult siblings of people with ID with a specific focus on outcomes related to wellness. Overall, siblings of people with IDD have positive outcomes in childhood while increased anxiety may happen in adolescence; outcomes for adults are mixed and need greater exploration. First five outcome areas are described related to wellness of adult siblings of people with ID: (1) impact on health and well-being, (2) financial impact, (3) cultural context, (4) sibling relationship quality, and (5) future caregiving. Secondly, supports that enhance wellness for siblings of adults with ID are discussed including peer/emotional support and knowledge of services and supports. Thirdly, gaps are identified and critiqued with ideas shared about ways to address the gaps in future studies such as investing in interventions that include and target adult siblings of people with ID to enhance wellness. Finally, future directions are proposed to advance sibling disability research in order to improve the wellness of adult siblings of people with ID and their families, including the value of doing research with a Disability Studies perspective.

An amendment to this paper has been published and can be accessed via the original article.

Iceland is considered a gender equal country where diversity and human rights are prioritized. However, people with intellectual disabilities seem to be marginalized within Icelandic society, with limited access to resources and opportunities. They have not been viewed as autonomous agents and their abilities to form sexual and gender identities have been questioned, based on the stereotypical views that they are eternal children. The article addresses the manifestation of masculinity, femininity, and autonomy in the lives of Icelanders with intellectual disabilities by employing the concepts of hegemonic masculinity, emphasized femininity, and relational autonomy. Interviews were taken with 29 individuals with intellectual disabilities and participant observations were carried out in the homes of other 15 individuals who had been identified by health/human service professionals as having severe/profound disabilities. Results show that the participants saw themselves as adults and the men who participated in this research performed their autonomy through the construction of hegemonic masculinity. The women seemed to be at more risk of being surveilled and controlled by staff and family members by, for example, restricting activities, pressuring sterilizations, and abortions. The men and the women interviewed relied equally on traditional gender roles in their narratives, although the women resisted emphasized femininity by focusing on independence and abilities in their narratives. We suggest that the structure and practices of the school and support systems have normalized gender/sexuality in the lives of people with intellectual disabilities, thus contributing to their status as eternal children and consequently diminishing their opportunities to develop their autonomy.

Although sexuality is a central component of human life, it is often discouraged and inaccessible to many adults with intellectual disabilities (ID). Common misperceptions and stereotypes of people with ID, such as being asexual, childlike, or innocent, impact the provision of sexual education, opportunities, and rights for many people with ID. The aim of this study was to examine the impact of gender, familiarity with ID, and cultural orientation on predicting attitudes towards the sexuality of people with ID. Participants included 227 students from two U.S. universities with a large international student population. Collectively, predictors explained 32% of the variance in attitudes towards sexuality, with cultural orientation variables accounting for the greatest amount (27%). Using Triandis’ four-factor conceptualization of culture, horizontal individualism and horizontal collectivism were associated with more positive attitudes, and vertical individualism was associated with more negative attitudes. Results highlight the impact of individual and societal characteristics on attitudes, suggesting that cultural orientation plays a role in mitigating and perpetuating stigma toward individuals with ID. Implications for research and practice are provided.

Life expectancy of adults with intellectual disabilities is lengthening toward that of adults without intellectual disabilities, but daily practice indicates that this aging is relatively often not a healthy aging compared with the general population. There is a lack of a concerted response to ensure that the best possible health and social care is provided for persons with intellectual disabilities in later life. Based on current literature reviews, this paper aims to present information regarding challenging issues in aging people with intellectual disabilities such as demographic characteristics in their aging, physical and mental health problems, and their aging health and social service needs. Finally, this paper reviews integrative service interventions for aging people with intellectual disabilities, which include the people-centered and personal choices approach and caregiver and care professional training, and suggests an integrative health promotion approach as future planning to eliminate the health disparities for aging adults with intellectual disabilities.

This study aim to examine parents’ and professionals’ views on the usage of Internet for love and sexual purposes among young people with intellectual disabilities (18–20 years) in Sweden. Five semi-structured focus group interviews were conducted with professionals (n = 8) working on special programmes in upper secondary schools and with parents (n = 5). The interviews were analysed with thematic analysis and the theory of sexual scripts were guiding the process. The results show that the Internet is seen as a social arena with complex challenges; for love and sexuality, for sexual conduct, and for sexual risk and opportunities. Young people with intellectual disabilities are looked upon as more vulnerable than other youth. However, the result also show that parents view the risk of their adolescent of being lonely as greater than the risk of being abused or mislead. A Net-script consisting of rules is geared towards the young people with intellectual disability. Nevertheless, a change to a more flexible and nuanced Net-script is shown while the group of young persons with intellectual disabilities are seen as more heterogeneous than earlier. In-depth knowledge about parents’ and professionals’ perspectives on the Internet and sexuality is important since the young people live in a dependency situation towards their surroundings. In addition, the surroundings’ attitudes and behaviour are essential for the young peoples’ access of support and opportunities to develop their own capacity and to experience love and sexuality.

Parents of children with intellectual disabilities (ID) consistently report higher levels of parenting stress than parents of typically developing children, which has psychological and physical consequences for both the parent and child. Further, high levels of parenting stress are often associated with poor outcomes in behavioral interventions for children with ID. Thus, parental stress and mental health concerns in general are critical targets for intervention. Nevertheless, there are few evidence-based treatments aimed at reducing stress in parents of children with ID. Parent-led support groups are the most common type of intervention for these parents; however, little empirical evidence is available to support the efficacy of these interventions. Other evidence-based interventions include mindfulness, cognitive-behavior therapy, respite, and behavioral parent training interventions. We argue for a combined intervention model that addresses both parental stress and child behavior problems directly in order to optimize outcomes for children with ID and their families.

Purpose The aim of this study was to investigate whether socio-demographic variables and physical disability (e.g. sensory impairment and mobility problems) were associated with self-reported stigma in people with intellectual disabilities (ID), and to examine whether age, sex and ethnicity modified the relationship between severity of intellectual disability and self-reported stigma. Methods 229 participants with mild or moderate intellectual disabilities were recruited from 12 centres/sites in England from community intellectual disability services, day centres, supported housing schemes, voluntary organisations and invitation letters. Information on physical disability and socio-demographic variables were obtained using a structured data collection form. Self-reported stigma was measured using a validated questionnaire. Results Age was associated with self-reported stigma, with older adults reporting more stigmatising experiences. Participants with moderate intellectual disabilities were more likely to report being treated differently such as being made fun of and being treated like children. Physical disability such as sensory, mobility and speech problems were not associated with self-reported stigma. Gender modified the relationship between severity of ID and self-reported stigma as participants who were male and had moderate ID were more likely to report stigma compared to females with moderate ID. Categorical age also modified the relationship between severity of ID and self-reported stigma as older participants who had moderate ID were more likely to report stigma compared to younger people with moderate ID. Conclusions Older adults and those with moderate ID are potentially at higher risk of being targets of public stigma or are more likely to report stigma. Interventions to help individuals cope with stigma could be targeted to this group.

BackgroundPeople with intellectual disabilities (ID) have complex pharmaceutical care needs due to a high prevalence of multimorbidity, a notable degree of polypharmacy and a high risk of adverse drug reactions. Despite this, people with ID often experience significant health disparities compared to the general population. In most developed countries, increasing emphasis on deinstitutionalisation and community integration also means greater utilisation of primary health care services where general practitioners, pharmacists and carers may lack appropriate information about the pharmaceutical needs of this population. Aim of the review To explore what type of pharmaceutical care interventions were being undertaken for people with ID and how pharmacists’ contributed to the care of people with ID as part of multidisciplinary teams. Method Systematic searches of the following electronic databases were carried out; CINAHL, Pubmed, Medline, Embase, Cochrane library, Science Direct and International Pharmaceutical Abstracts. Results were limited to the period 1994–2014 using search terms ‘learning disabilities’, ‘intellectual disabilities’, ‘mental retardation’, ‘developmental disabilities’, ‘learning difficulties’ and ‘pharmacist intervention’, ‘pharmaceutical care’, ‘primary care', ‘pharmacy' “pharmacists” “pharmacy technicians”. Agreement on studies to be included was arrived at by consensus and by using a pre-determined set of inclusion criteria. Due to the heterogeneous nature of the study aims, methods and presentation of study outcomes found, a narrative review was considered appropriate. Results In total, after removal of duplicates, 70 abstracts were identified and screened from the initial search. After screening and consensus agreement, eight articles which met the inclusion criteria were included in the review and were analysed under the following three themes; pharmacist interventions, pharmacists collaboration in provision of care, qualitative studies relating to patient, carers, and pharmacist views on care of people with ID. Conclusions The limited evidence available in the literature suggests that pharmacists can make positive interventions in relation to the quality of the medication use process, in collaboration with other healthcare professionals, carers and patients with ID. However, further research will be required to increase the evidence base with regard to the benefits of providing pharmaceutical care to patients with intellectual disability and to inform future policy and planning.

A limited amount of previous work has investigated the effects of course-based disability awareness programs in promoting attitudes towards people with disabilities. This study aimed to evaluate the effects of a 10-week course on university students’ (N = 42) attitudes towards individuals with intellectual disabilities. The effectiveness of the intervention was evaluated through quantitative and qualitative methods. The quantitative results showed significant improvements in the participants’ attitudes (i.e., Empowerment and Similarity) after the intervention. Qualitative findings provided some support for the quantitative results and provided reasons for the attitudinal improvements. Overall, the results suggested that the course-based intervention program improved university students’ attitudes towards people with intellectual disabilities.

During transition to adulthood, emerging adulthood is characterized by continuous identity negotiations (Deaux and Perkins in Individual self, relational self, collective self. Psychology Press, Philadelphia, pp 299–313, 2001). However, for young people with intellectual disabilities (ID) the ID identity may overshadow the development of sexual identity (Burns in Clin Psychol Forum 137:137–139, 2000). This study conducted an in-depth exploration of four young people and four of their carers’ experiences of the development of sexual identity alongside the ID identity. Interviews were analysed using interpretative phenomenological analysis. Young people struggled for an ‘as normal as possible’ adult identity, and to develop sexual identity as a ‘normal’ identity, in the context of the overshadowing ID identity. Despite believing they should be enabled to develop sexual identity as part of their transition to adulthood, young people faced many obstacles, including stigma related to their ID. Carers described their challenges in proactively supporting sexual identity education and exploration, due to concerns about risk. Equality and protection need not be either/or priorities; however, there remains need for considerable change in UK practice and policy if the principles of rights, independence, choice and inclusion (Department of Health in Valuing people now: a new three-year strategy for people with learning disabilities. The Stationary Office, London, 2009; Department of Health in Valuing people. The Stationery Office, London, 2000) are to be met in relation to sexual identity development in people with ID transitioning to adulthood.

This paper presents a systematic review of the evidence on the effectiveness of mindfulness for people with intellectual disabilities. Primary studies published in the English language between 1980 and 2012 were identified from electronic databases, experts and citation tracking. Eleven relevant studies evaluating mindfulness training and practice were identified: seven studies with people with intellectual disabilities, two studies with staff members or teams and two studies with parents. The studies found improvements in aggression and sexual arousal for people with intellectual disabilities after mindfulness training. Training staff led to benefits for people with intellectual disabilities, decreased use of physical restraint for aggressive behaviour and increased job satisfaction. Training parents led to improved parental satisfaction and well-being and improved parent–child interactions. The reported positive findings suggest that service providers, people with intellectual disabilities and their families may want to consider mindfulness approaches. However, the findings have to be interpreted with caution due to methodological weaknesses identified in the studies. Further high-quality independent research is needed before the reported improvements can be more confidently attributed to mindfulness.

There is a lack of research exploring the use of mindfulness groups for people with intellectual and developmental disabilities in a community setting. This paper explores the experiences of people with intellectual disabilities and carers who participated in Introduction to Mindfulness workshops. The mindfulness workshops consisted of an introduction to mindfulness and a body scan meditation. Participants were given a leaflet about mindfulness and an audio CD of mindfulness exercises. A questionnaire survey was conducted of people who attended the mindfulness workshops and qualitative interviews were carried out with six people with intellectual disabilities (three of whom were supported by paid or family carers). Feedback on the workshops was generally positive. Workshop participants valued the opportunity to talk to other people about their experiences and found the workshops, and in particular the body scan, very relaxing. Three of the people with intellectual disabilities who were interviewed had listened to the audio recording since the workshops and two of these had found it useful in aiding them to cope with phobias, stress and discrimination. Participants wanted further mindfulness sessions and felt that other people with intellectual disabilities could benefit from mindfulness training. The interviews revealed that people with intellectual disabilities may have very stressful lives. Mindfulness could be a useful way of helping people to manage such stress. The mindfulness workshops were clearly acceptable to people with intellectual disabilities, and further work is needed to develop and evaluate a group mindfulness program that is accessible to people with intellectual disabilities.

Approximately 10–20 % of adults with intellectual disabilities engage in challenging behaviours such as aggression, destructiveness, and self-injury, which are often accompanied by feelings of anger. The inability to manage anger can reduce quality of life. For example, aggression is a strong predictor of out-of-area placements and is a risk variable for abuse. Recent research suggests that mindfulness-based therapies (specifically, Singh’s Soles of the Feet meditation) can help people with intellectual disabilities manage angry emotions, with resultant reductions in challenging behaviour. However, previous research has been single-case design studies, and no group studies have been published with people with intellectual disabilities and aggressive behaviour. For this feasibility study, a UK protocol will be developed for use by health professionals within National Health Service (NHS) Intellectual Disability (ID) teams, based upon Singh’s Soles of the Feet manual. Twenty adults with intellectual disabilities and identified problems with anger control will be recruited and six sessions will be delivered by a trained ID clinician. The study will monitor participant’s aggressive behaviour, health-related quality of life, anxiety, depression, and use of support services (medication, hospital appointments etc.). These will be measured at three time points: (1) Baseline (within 2 weeks prior to the first session of the intervention), (2) 2 months post-baseline, and (3) 6 months post-baseline. Qualitative interviews will be conducted with participants, their carers, and the therapists who delivered the intervention. In order to help design an economic evaluation alongside a future full trial, we will cost the intervention and test the acceptability and validity of health economics measures to record resource use and health-related quality of life outcomes. The data from this study will inform the feasibility of the project protocol and intervention, which will help develop future research and to determine whether a larger, randomised controlled trial with concurrent economic evaluation is feasible. UKCERN: 16743 .

This article examines the value of using Crip Theory by investigating what is considered normal sex life for people with intellectual disabilities in Sweden. By combining Crip Theory with Gagnon and Simon’s sexual scripting theory, it concludes that Crip Theory can be of use for researchers and activists, and also suitable for educating staff members, in that it questions sexual norms that are most often taken for granted. However, due to the fact that research or activism inspired by Crip Theory seldom includes intellectual disabilities, its usefulness is limited, and more work is needed to solve problems surrounding agency, stigma and visibility.

The voices of lesbian, gay, and bisexual people with intellectual disabilities have rarely been heard within both policy and research. This article reports on a research study involving gay, lesbian, and bisexual people with intellectual disabilities. Results highlighted that, despite many barriers, lesbian, gay, and bisexual people with intellectual disabilities wanted to develop sexual and intimate relationships. Love was a frequently discussed need and desire among study participants. Interviews with staff who worked with this population revealed that supporting their being in an intimate relationship did not feature strongly in staff goals. This disjuncture may partly account for the dearth of sexual relationships among the people with intellectual disabilities interviewed for this study, as well as for their accounts of isolation, loneliness, and depression. The findings have implications for staff and service providers, as well as for social policies addressing disability, which do not routinely reference sexuality and personal relationships.

This article aimed to review outcome measure instruments of self-reported Quality of Life (QOL) in people with Intellectual Disability (ID). Instruments were identified from five electronic databases (CINAHL, Medline, PsychINFO, Cochrane Library, and ERIC) and hand-searching with the following inclusion criteria: (i) the paper was to evaluate the measurement properties of QOL; (ii) the measurement measured dimensions/indicators that align with the QOL construct; (iii) the target participants should include an ID population; (iv) the measurement should include self-reported QOL ratings from the ID population; and (v) the study was published in peer-reviewed English language literature. Nine QOL instruments met the inclusion criteria. The evidence of reliability and validity of the included instruments varied. None of the instruments reported for responsiveness. The Choice Questionnaire had the most evidence supporting its measurement properties while the Maryland Ask Me! Project had the least. Future studies are needed to further refine these instruments.

Associations between demographic and clinical variables and severe behavioural problems in people with intellectual disabilities were examined in a cross-sectional survey of 408 adults consecutively referred to a specialist mental health service. Severe behavioural problems were present in 136 (33.3%) of the sample. The demographic and clinical predictors of severe behavioural problems in this sample were identified by logistic regression. Age and gender were not associated with severe behavioural problems. The presence of severe ID independently predicted the presence of severe behavioural problems. Schizophrenia spectrum disorders and personality disorders independently predicted the presence of severe behavioural problems, whereas the presence of an anxiety disorder independently predicted their absence. There is an increasing evidence base of relationships between mental disorders and behavioural problems in people with ID although the pattern of these relationships remains unclear.

In Sweden sex education has been compulsory since 1955. However, access to sex education seems to be insufficient in schools with special education programs. Concerns about unwanted pregnancies, sexual abuse and sexual risk situations make personnel insecure about how to best deal with the subject. A largely heteronormative perspective of sex education renders young gay people with ID an invisible group. Stereotyped gender norms where girls are supposed to be oriented towards love and relationships and boys towards sexuality make it more difficult for young people with ID to find a more subtle way to act. The aim of this study is to strengthen sexual health among young people with ID, and to develop a knowledge base culled from their own experiences that can help teachers in special schools to supply sufficient sex education. What are the experiences of sex education in young people with ID aged 16–21? In what way, and by whom, should sex education be supplied? What themes do the young people with ID consider important? Qualitative research interviews with 16 young females (9) and males (7) with ID aged 16–21 years have been conducted. Guiding the analyses is an interactionist perspective on sexuality. Results show that a restrictive script is geared toward informants with ID, focusing on sexual risks instead of challenging a discourse of pleasure, desire and intimacy. The study also shows that using critical pedagogy can help personnel develop a professional and adequate teaching model for sex education at schools for adolescents with ID.

Objective: During the last 50 years there have been significant improvements in life expectancy among people with intellectual disability (ID), and so their incidence of age-associated diseases, such as cancer, is rising. The aim of this study was to compare the rate of cancer in people with ID with that found in the general population. Methods: Information on 9409 individuals registered with the Disability Services Commission of Western Australia was linked to the State Cancer Registry, with 200 cases of cancer detected over 156,729 person-years. Standardised incidence ratios (SIRs) and 95% confidence intervals were calculated for both sexes separately by 5-year age groups for the period 1982-2001. The same procedures were adopted in the estimation of SIRs for specific types of cancers. Results: The age-standardised incidence of all cancers in people with ID was not significantly different from the general population. However, males with ID were observed to have a significantly increased risk of leukaemia, brain and stomach cancers, and a reduced risk of prostate cancer, while leukaemia, corpus uteri and colorectal cancers were significantly higher in females. Conclusions: Health practitioners need to be aware that with improvements in life expectancy the incidence of cancer in people with ID is likely to rise. More proactive health promotion campaigns may be needed for people with ID, who are likely to be poor users of screening services and whose symptoms may not be reported until they are in more advanced, less treatable stages of disease.

Evidence from systematic reviews and meta-analysessupport the provision of pharmacy services to a range ofpatient groups. This includes patient groups with highburden conditions such as diabetes, asthma, hypertensionand hyperlipidaemia [1]. Evidence is an important factorthat guides the development and delivery of new clinicalpharmacy services. In the context of finite resources, tar-geting clinical pharmacy services to patient groups withdemonstrated benefits is consistent with the principles ofevidence-based decision making.It is widely stated in science, however, that ‘absence ofevidence is not evidence of absence’. Vulnerable patientgroups, such as those with dementia, refugees, and theculturally and linguistically diverse (CALD) are under-represented in pharmacy practice research. These vul-nerable patient groups are often at high risk of adverse drugevents (ADEs). The provision of clinical pharmacy ser-vices for people with intellectual disability (ID) is an ex-cellent example.In this issue of IJCP, O’Dwyer et al. [2] present a nar-rative review of pharmacy services for people with intel-lectual disability. The conclusions that can be drawn from aliterature review are usually dependent on the quality of theincluded studies. This review is equally important for whatis not included. O’Dwyer et al. identified no randomised ornon-randomised controlled studies of pharmacist services.The two intervention studies were conducted in a singleinstitution [3, 4]. Three of the six reports of pharmacistparticipation in service provision for people with ID werepublished more than 35 years ago [5–7].As acknowledged by O’Dwyer et al., the lack of pub-lished research does not necessarily reflect lack of serviceprovision [2]. It is possible that clinical pharmacists havenot documented the services they provide. While examplesof innovative practice undoubtedly exist, the lack ofpractice-based research to inform service delivery remainsa concern [8]. This is particularly true given the high ratesof psychotropic use, frequent off-label prescribing, andminimal evidence for medication efficacy [9, 10]. Althoughthere is currently no rigorous body of evidence to supportprovision of clinical pharmacy services to people with ID,extrapolation of evidence from other clinical areas suggeststhat benefits are likely [11]. Furthermore, a recent an-tipsychotic discontinuation study reported that nearly halfof participants with ID achieved complete discontinuationand this was associated with improved behavioural func-tioning [12].Twenty-five years ago Hepler and Strand called on thepharmacy profession to mature ‘by accepting its socialresponsibility to reduce preventable drug-related mor-bidity and mortality’ [13]. There is an urgent need for thepharmacy profession to develop a research agenda topromote the quality use of medications in vulnerablepatient groups. In the interim, however, there is a socialresponsibility to target services to vulnerable patientgroups at high risk of ADEs for whom minimal evidencecurrently exists.

Until the 1960s, the sexuality of people with mental retardation was handled by denial and suppression. The eugenics movement of 1880–1940 led to forced mass sterilization and the segregation of these members of our society. The civil rights movement and the “sexual revolution” were among the catalysts for change as was the move toward normalization and deinstitutionalization of people with mental retardation. In the last 25 years, parents and professionals have begun to work together to find ways to help mentally handicapped individuals to understand their sexuality and to engage in appropriate self-affirming sexual behaviors. We have established goals, guidelines, and curricula for sexuality education. We have trained parents and staff and developed policies for handling sensitive issues, such as sterilization and problematic sexual expression. The AIDS epidemic has provided new impetus for improving education and training in this emerging field.

People with neurodevelopmental disabilities, including intellectual disabilities and autism, want to have relationships but few are given the tools and opportunity to create those relationships in a safe and meaningful way. This strong desire to have relationships, coupled with reduced access to information, puts people with neurodevelopmental disabilities at high risk for being targets of sexual abuse and exploitation, as well as demonstrating social-sexual behavior that is unexpected or offensive to others. Research has long demonstrated that people with intellectual disabilities are sexually assaulted at much higher rates than the general population. In addition, it is common for people with intellectual disabilities and autism to miss out on employment, housing, and social opportunities due to unexpected social-sexual behaviors. To address this need, the research team developed the social-sexual education (SSE) program to teach people with neurodevelopmental disabilities how to create safe and meaningful relationships while also giving them information about sexual abuse and coercion. We recruited licensed professionals to pilot test the SSE program, and then we evaluated the tool using quantitative and qualitative methods. Our findings provide preliminary support for the SSE program. Implications and future directions are discussed.

Cognitive accessibility aims to make content more accessible for people with cognitive impairments, such as the elderly and people with intellectual and learning disabilities. In this sense, it is possible to design an accessible user interface from a cognitive point of view. As a contribution, this article presents cognitive accessibility design patterns and their application in designing the Easier web system's user interface. The Easier web system provides a tool that assists in the understanding and readability of text content geared towards people with intellectual disabilities. It detects complex words and offers easier replacements and other resources such as a definition of the complex word. In addition to applying the design patterns, user tests with people with intellectual disabilities and older people have been carried out to evaluate the cognitive accessibility of the Easier system's interface. The results indicate that people with cognitive impairments know how to use the interfaces and have a satisfactory experience. In addition, a design proposal to provide a glossary mechanism to be used in web interfaces with simplified texts is presented and validated.

Purpose While positive contributions of religion and spirituality (R/S) to quality of life (QOL) are confirmed by a growing body of evidence, only limited research has involved people with intellectual disabilities and so far, no studies included prelingually deaf individuals with intellectual disabilities. This study explores the role of R/S in people with intellectual disabilities and deafness living in three therapeutic living communities specifically adapted to their needs. Methods Forty-one individuals (mean age: 46.93 years, 43.9% female) with prelingual deafness and mild to moderate intellectual disability participated in structured sign language interviews adapted to their cognitive–developmental level, regarding their QOL, individual spirituality and participation in spiritual practices in the community. Participants’ QOL was assessed with an established short measure for QOL (EUROHIS–QOL) adapted to easy-to-understand sign language. With 21 participants, qualitative interviews were conducted. In addition, proxy ratings from caregivers were obtained. Results The participants’ ratings of their individual spirituality (r = 0.334; p = 0.03) and spiritual practices-in-community (r = 0.514; p = 0.00) correlated positively with their self-reported QOL. Qualitative findings illustrate the importance of R/S and give insights into R/S concepts and practices. Conclusions Personal spirituality and participating in spiritual practices are positively related to self-reported quality of life in deaf individuals with intellectual disability (ID). As a consequence, access to spiritual and religious services should be included in comprehensive programs and society at large.

Introduction The lockdown due to COVID-19 affected the sexual health of the people with intellectual disabilities by differentially modifying the frequency and characteristics of people’s sexual activity depending on whether or not they lived with a partner during this period. The aim of this study was to analyze the extent to which the sexual behavior of people with intellectual disabilities (with and without a partner) was affected during the lockdown. Methods The sample consisted of 73 people with intellectual disabilities between 21 and 63 years old (M = 39.63; SD = 10.11). The variables analyzed were the physical, social, and technological environment during the lockdown, sexual appetite, sexual behavior, online sexual activity, and sexual abuse. The data were collected between the months of May and June of 2020. Results The lockdown increased the sexual appetite of a third of the sample (38%), especially the youngest participants. Sexual activity focused on autoeroticism and online behavior, particularly sending nude images of oneself (88%) and viewing pornography (83.6%). Rates of sexual abuse during this period were relatively high (6.8%). Conclusions The sexual activity of people with ID was important during the lockdown, and they had to adapt to the circumstances of isolation in a similar way to the general population. Technological improvements in terms of devices and connection quality at home allowed their sexual behavior to be reoriented, opening the door to new risks for the sexual health of people with ID. Policy Implications Cybersex and the increase in sexual abuse due to confinement are aspects that should be included in programs to improve the sexual health of this group.

The literature on epistemic injustice currently displays a logocentric or propositional bias that excludes people with intellectual disabilities from the scope of epistemic agency and the demands of epistemic justice. This paper develops an account of epistemic agency and injustice that is inclusive of both people with and people without intellectual disabilities. I begin by specifying the hitherto undertheorized notion of epistemic agency. I develop a broader, pluralist account of epistemic agency, which relies on a conception of knowledge that accounts not only for propositional knowing, but also for other types of knowing that have been largely neglected in debates on epistemic injustice and agency. Based on this pluralist account of epistemic agency, I then show that people with intellectual disabilities qualify as epistemic agents and therefore as subjects of epistemic justice. Finally, I argue that this pluralist account of epistemic agency pushes us to revisit the current conception of epistemic injustice and to expand its taxonomy in two important ways.

Mental disorders and physical health problems are common among adults with intellectual disabilities, as they accompanied with mental disorders are always present higher levels of functional disability than those with intellectual disabilities only. This review aims to describe the characteristics and the impacts of older people with intellectual disabilities accompanied with mental disorders in their daily livings. Results reveal that the prevalence of MD is high in adults of all ages with ID; there was no significant difference in older people with ID and younger people with ID. Individuals with ID attending psychiatric services were more likely to be older and polypharmacy was commonplace for older adults with ID. Higher family impact was also found between caregivers to adults with intellectual disabilities and mental disorders. This review highlights that adults with intellectual disabilities have higher mental disorder service needs which require recognition and the allocation of specific resources to protect the same right to healthy ageing as their counterparts living without ID. Further research is needed to improve our understanding of the adverse effects of ageing on the mental disorders and care needs of older people with intellectual disabilities.