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Background: Psychiatric genomic research is a growing field of research in Africa that is looking at epigenetics of psychiatric disorders; within which a specific focus is neurodevelopmental disorders including intellectual disability (ID). Conducting this type of research is important to identify etiologies and possible interventions or areas for further research. However, genomic research generally, and psychiatric genomic research, faces many social, ethical, cultural, and legal issues; research involving people with ID is particularly challenging. All research stakeholders - researchers, research review bodies, regulators, patient groups - generally agree that involving people with ID require several considerations, including extra protection. It is also recognized that not involving people with ID in research that is relevant to them means that opportunities to learn on specific issues including lived experiences are missed. In this scoping review, we aim to describe the range of ethical and social-cultural issues concerning involvement of people with intellectual disability in genomic research from existing literature. Methods: This scoping review will be conducted based on the Joanna Briggs Institute guidance for scoping review and reported using the PRISMA-ScR guidelines. Iterative review stages will include systematic search of six databases (Embase, Ovid Global Health, PubMed, Scopus, PsycInfo and Web of Science core collection), screening, charting and synthesis of the data. Forward and backward citation screening will also be done for the articles included in the final review. We will include peer reviewed journal articles, guidance documents and reports. Screening and selection of studies based on the eligibility criteria will be done independently by three reviewers; conflicts will be resolved through discussion with a third reviewer and other experts. Results: The results will be included in the scoping review publication. Conclusions: This scoping review will identify key areas of ethical tensions and possible solutions and inform opportunities for empirical ethics studies.

(1) Background: Since 2012, our Inclusive Research Team has developed several studies on various topics that interest the co-researchers with intellectual disabilities. In 2021, throughout the COVID-19 pandemic, the co-researchers decided to investigate the impact of the pandemic on the relationships of people with intellectual disabilities. The aim of this article is to disseminate how this inclusive study was developed and to explain its results; (2) Methods: Co-researchers and academic researchers met six times to make different decisions: decide on the research topic; discuss the topic; prepare an interview script for people with intellectual disabilities; analyse the data obtained; and decide how to disseminate the results of the research. The co-researchers interviewed 10 people with intellectual disabilities and participated as facilitators in 3 focus groups; (3) Results: During the pandemic, digital devices have enabled people with intellectual disabilities to maintain their social relationships. However, the lack of access or support in using them, as well as the restrictions imposed on people with intellectual disabilities living in institutions, have presented significant barriers to maintaining their social relationships; (4) Conclusions: This article shows the difficulties people with intellectual disabilities face in maintaining successful social relationships in times of pandemic, and how we undertook research in an inclusive, virtual manner. [ABSTRACT FROM AUTHOR]

Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed taboos and pushed boundaries in content and methodology through two ways of inclusive research: (1) the second author of this paper who has an intellectual disability was a main researcher in the study; and (2) we interviewed people with intellectual disabilities about their own experiences as well as their desired solutions to obstacles they face in their supported living environments. Their input was centralized in the final research report. This method challenged the epistemic injustice of who have historically not been 'allowed' to produce knowledge in research. This paper offers historical insight into epistemic injustice as well as relational approaches from critical disability studies and non-Western understandings of disability that 'rethink' disability and that can thus promote epistemic justice in academic theory. By addressing both practice and theory in this paper, we aim to contribute to the growing body of inclusive research and to the epistemic justice of people with intellectual disabilities. Plain language: (1) Epistemology = thinking about knowledge, producing knowledge, sharing knowledge. (2) In history, people with intellectual disabilities have often been excluded from participating in this. This is called epistemic injustice. It is caused by the discrimination of people with intellectual disabilities (ableism). (3) Performing inclusive research with people with intellectual disabilities challenges this. It contributes to epistemic justice. Researchers and interviewees with intellectual disabilities can bring knowledge from lived experience into research. (4) Knowledge from lived experience has not always been valued in traditional research. That means we also need to think differently about 'knowledge', and about 'disability' and its 'value'. (5) Discrimination based on disability has a long history. For instance: during colonialism by European countries (starting in the 15th century), false ideas about 'poor health' and 'low intelligence' were already used to justify slavery. People with disabilities have often been locked away or even killed because they have been seen as 'less valuable'. These ways of thinking still exist. They influence our understanding of 'epistemology' because they decide whose way of thinking and way of life is valuable or not valuable. We need to change this way of thinking. (6) Some academic fields that help are critical disability studies, indigenous studies, and feminist posthumanism. These fields challenge ableist ways of thinking. They can help us understand disability as something that is not negative or less valuable, but simply part of what makes us human. [ABSTRACT FROM AUTHOR]

The article describes the transformation project of the Compostilla center into a cozy and personalized home for people with intellectual disabilities. A methodology based on design thinking was used, involving users, staff, and families in decision-making. Changes were made to the physical spaces and the adoption of dogs and horses as pets was proposed. The person-centered approach and active participation of all stakeholders were fundamental in this humanization project. The importance of incorporating personalized spaces, promoting social interaction, and active integration into the community to improve the quality of life for people with intellectual disabilities is highlighted. [Extracted from the article]

Abstract Introduction Experience‐based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long‐term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. Methods Through a participatory research approach, EBCD was adjusted to long‐term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. Results The participatory research resulted in the development of ‘Ask us!’—a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long‐term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo‐voice and involving experts‐by‐experiences as co‐ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo‐elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts‐by‐experience as proxies to share experiences of clients for whom participation in the ‘Ask us’ method remains inaccessible. Conclusion The result of a robust participatory process, ‘Ask us!’ is a promising method for participatory quality improvement in long‐term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. Patient or Public Contribution Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions.

Background: The importance of understanding the needs of older people with intellectual disabilities (IDs) is obvious, but the research available is limited. This study identifies the self-reported needs of older adults with IDs and compares them with staff reported needs regarding the same older adults with ID, therefore specifying and explaining agreements and disagreements. Method: The needs of 96 older adults with IDs were assessed through the Inventory of Identification of Needs (informant and self-report versions). Results: Both older people with IDs and staff reported quite diverse needs related to all the domains assessed by the IIN: physical health, literacy, information, meaningful activity, participation in the community, mental health, basics needs and accommodation. All the mean scores of the informant version of the IIN were higher than the ones of the self-report version. Agreement amongst informants was influenced by the prominence of needs, the accessibility to and the subjectivity of the information, and social desirability. Conclusions: A consumer-driven approach implies that services should be based on the needs identified. [ABSTRACT FROM AUTHOR]

People with intellectual disabilities generally have small social networks, little diversified and with few sources of natural support. Helping them build stronger social networks contributes to their personal well-being and social inclusion, and to enrich society diversity. This article aims to present the process developed to outline and conduct an initial validation of a tool oriented to the design and evaluation of good practices to support the construction of social networks (Quality framework for good practices to support the construction of social networks). In a first phase, a first version of the instrument was designed, based on a bibliographic review. Then, in a second phase, a validation process was implemented with a qualitative approach. Two focus groups were held with people with intellectual disabilities (one in Spain and one in Ireland), and three were conducted with professionals (one in Malta and two in Spain). During these focus groups, the participants expressed their points of view about the structure and composition of the tool. The article describes the validation process developed, its final version and guidelines for its application. [ABSTRACT FROM AUTHOR]

Objective. To explore the experiences and perceptions of quality of life (QoL) in family caregivers (FC) of people with intellectual disabilities (PID) in Morelos and Sinaloa, Mexico. Materials and methods. Qualitative study. Eighteen semi-structured interviews were conducted in FC of PID who attended basic public schools in Huitzilac, Morelos, and Culiacán, Sinaloa, Mexico. Content analysis was performed with the support of the ATLAS.ti.8.0 program. Results. FC experience an affectation of their CV in different dimensions: emotional, physical and material well-being, personal development, self-determination and interpersonal relationships. The empathy and support generated with other FC make them feel good and relieve them of activities for short time lapses, reducing the load of care of PID. Conclusions. Caring for an PID can negatively affect the QoL of CF. It is suggested to develop and implement programs for care, support, and comprehensive guidance; likewise, create and strengthen mutual help groups with other caregivers. [ABSTRACT FROM AUTHOR]

This article discusses the findings of a study into how voluntary work provides opportunities for work inclusion and citizenship for people with intellectual disabilities. The study is based on qualitative interviews with 12 people with intellectual disabilities engaged in voluntary work in Iceland and Norway. Based on collective qualitative analysis, opportunities for meaningful social relations, competence, contribution and belonging were identified as key aspects of the participants’ experiences of volunteering. The study indicates that voluntary settings offer work that recognises the diversity of preferences, expectations and skills among people with intellectual disabilities. The study’s findings point to the importance of rethinking the meaning and boundaries of work, as participation in voluntary work provides opportunities for both inclusion and citizenship in addition to the participants’ participation in other work settings.

Objective: The aim of this systematic review and meta-analysis (PROSPERO 2020 CRD42020169323) was to evaluate the efficacy of psychological therapy for people with intellectual disabilities. Method: A comprehensive literature search yielded 22,444 studies which were screened for eligibility. Studies were eligible for inclusion if a psychological therapy was delivered to people with intellectual disabilities compared to a group who did not receive the therapy. Thirty-three controlled trials were eligible for inclusion in the review, with 19 included within a DerSimonian-Laird random effects meta-analysis. Subgroup analysis was completed by clinical presentation, and by comparing randomised trials to non-randomised trials, and group-based to individually delivered psychotherapy. Results: Following the removal of outliers, psychological therapy for a range of mental health problems was associated with a small and significant effect size, g = 0.43, 95% CI [0.20, 0.67], N = 698. There was evidence of heterogeneity and bias due to studies with small sample sizes and a lack of randomisation. Non-randomised studies were associated with a large effect size, g = 0.90, 95% CI [0.47, 1.32], N = 174, while randomised studies were associated with a small effect size, g = 0.36, 95% CI [0.17, 0.55], N = 438, excluding outliers. Individually delivered psychological therapy was associated with a small and non-significant effect size, g = 0.32, 95% CI [−0.01, 0.65], N = 146, while group-based interventions were associated with a small and significant effect size, g = 0.37, 95% CI [0.05, 0.68], N = 361, again, excluding outliers. Psychological therapy for anger was associated with a moderate effect size, g = 0.60, 95% CI [0.26, 0.93], N = 324, while treatment for depression and anxiety was associated with a small and non-significant effect size, g = 0.38, 95% CI [−0.10, 0.85], N = 216, after outliers were removed. Conclusions: Studies are fraught with methodological weaknesses limiting the ability to make firm conclusions about the effectiveness of psychological therapy for people with intellectual disabilities. Improved reporting standards, appropriately powered and well-designed trials, and greater consideration of the nature and degree of adaptations to therapy are needed to minimise bias and increase the certainty of conclusions.

Introduction The prevalence of dementia is almost five times higher in people with intellectual disabilities compared with the general population. However, evidence-based treatments for this population are lacking, as most randomised controlled trials for dementia interventions have not included people with intellectual disabilities. Cognitive stimulation therapy (CST) has a robust evidence base in the general dementia population, consistently showing benefits to cognition, quality of life and being cost-effective. We are conducting a mixed-methods feasibility trial of group CST for people with intellectual disabilities and dementia, to determine if a future definitive randomised controlled trial is feasible.Methods and analysis Fifty individuals with intellectual disabilities and dementia will be randomised to either the intervention arm (14 sessions of group CST plus treatment as usual) or the control arm (treatment as usual). Randomisation will occur after informed consent has been obtained and baseline assessments completed. Each arm will have 25 participants, with the intervention arm divided into five or more CST groups with three to five participants in each. The outcomes will be feasibility of recruitment, acceptability and adherence of the intervention, suitability of study outcome measures and feasibility of collecting resource use data. Quantitative and qualitative approaches, including semistructured interviews with group participants, carers and group facilitators, will be employed to assess these outcomes.Ethics and dissemination This study has been approved by Essex REC (Ref: 21/EE/027) and the HRA ethical approval process through the Integrated Research Application System (IRAS ID: 306 756). We plan to publish the results in peer-reviewed journals and conferences as well as provide feedback to funders, sponsors and study participants.Trial registration number ISRCTN88614460.

The paper is intended to show a system of institutional care for people with intellectual disabilities, which is characterized by a kind of ambivalence. The whole disquisition is based on two fundamental and dichotomous categories: control and subordination versus autonomy and independence. Each of these categories is connected with one of two perspectives within which a residential care facility can be captured. The first one arises from Goffman’s vision of a total institution, where a unit is presented as an objectified subject of other people’s actions, revealing a situation of isolation and personal dependence. The second perspective presents a model of relationships between the personnel and their charges; it is characterized by an individualistic approach toward the needs of people with disabilities regarding their right to autonomy and self-determination. The confrontation between these two perspectives and areas of issues is discussed in this paper.

Interpersonal relationships significantly influence social inclusion during the transition processes to adult life of people with intellectual disabilities. Having a supportive social network is considered the pinnacle of social inclusion. In order to explore the role of friendships in the independent life processes of people with intellectual disabilities, as well as the role of support professionals, focus groups have been conducted with both people with intellectual disabilities and professionals. The results of this study show the perspective that they have of friendship, as well as the role that they consider that friendships develop in the independent life processes of people with intellectual disabilities, and the role that support professionals play with regard to the promotion of the establishment and maintenance of friendships of people with intellectual disabilities. The design and development of specific actions that allow people with disabilities to identify and/or expand their natural support network is considered necessary. [ABSTRACT FROM AUTHOR]

In this study, we report on a two-year experience of inclusive participative action and social design research consisting of intensive collaboration between social workers, people with intellectual disabilities and researchers. Action research and design research are attunable and lend themselves to an inclusive approach aimed at knowledge development and change in practice. Social workers and people with intellectual disabilities were involved in a community of development. They became owners of the subject matter and the answers and solutions they designed. We conclude that an inclusive approach lends itself well to combining or even merging action research and social design research. Inclusive participative action and social design research cannot be standardized since it contains a particularly emergent process. Hence, it requires flexibility and creativity in finding ways to create an inclusive process of co-creation. [ABSTRACT FROM AUTHOR]

The research presented in the article aims to justify the application of the method of music therapy in the long-term perspective of the social worker’s professionalization for people with intellectual disabilities. The object of the research is the impact of music therapy on persons with intellectual disabilities as a stigma research & intervention strategy in the context of the professionalization of social work. The aim of the article is to reveal the impact of music therapy on persons with intellectual disabilities in the context of the professionalization of social work. The object of the research was delved into from various angles in order to answer the research questions: How useful is music therapy for people with intellectual disabilities in the context of social work striving to overcome stigma and choosing music therapy as a strategy? How useful is the authorial research methodology developed by the researchers for the application of music therapy for the quality of life of people with intellectual disabilities in the context of social assistance and in overcoming systems barriers? To what extent are the research participants able to express their feelings and evaluate the process of music therapy, to influence the social worker’s activities related to music therapy? To what extent and how does such activity expand the boundaries of the social worker’s profession and in what direction does it change professional standards? Data analysis proves that music therapy helps people with intellectual disabilities and society to overcome stigma. Referring to the research findings it can be stated that the authorial methodology for the application of music therapy created by the researchers in order to achieve the quality of life of people with intellectual disabilities in the context of social assistance is effective and can be implemented in practice to overcome the systems barriers. [ABSTRACT FROM AUTHOR]

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

The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research. [ABSTRACT FROM AUTHOR]

Co-researchers with intellectual disabilities and a Ph.D. student formed an inclusive research team. The co-researchers joined the inclusive research team so they could learn more about research and have control over the research. Our team have held regular research skills meetings. The focus of these meetings was getting to know each other and learning what each person brought to the team, as well as learning what inclusive research is and how to conduct research together. Learning these things has helped to design and undertake an inclusive research project about pets for people with intellectual disabilities. In this article, our team shares our experience of conducting inclusive research. We have learnt that each team member brings their own strengths to the team and we have connected and formed friendships. We completed an inclusive research project and found there were some challenges our team had to overcome. We conclude that people with intellectual disabilities are capable of leading research. Being part of an inclusive research team enables co-researchers to show others what they can do. Sharing what our team has found out can help others to conduct inclusive research. [ABSTRACT FROM AUTHOR]

Pupils with intellectual disabilities are one of the most bullied groups in the school system and in local communities. Moreover, young people also play a significant role in hate crimes against people with intellectual disabilities of all ages beyond the school gates. This paper describes the development of a research informed program of lessons for children in mainstream secondary schools, aimed at counteracting bullying towards people with intellectual disabilities by promoting empathy and more positive attitudes towards them. A literature review, a review of current practice, and the experiences and views of young people with intellectual disabilities and their families all contributed to the development of the program. Data from subsequent piloting and feasibility work were used to finalize the program which consists of the following five lessons concerning: (i) difference and disability, (ii) an understanding of intellectual disability, (iii) the nature and impact of disablist bullying towards people with intellectual disabilities, and (iv) opportunities for inclusion. One conclusion from this work is that that there needs to be further research to explore the impact of school-based interventions, promoting an understanding of people with intellectual disabilities, in the wider community. Teachers delivering the lessons may have greater influence than transitory campaigns to counteract bullying and promote positive attitudes towards people with intellectual disabilities. However, a first step is to ensure that teachers delivering the lessons have an understanding of people with intellectual disabilities.

Digital technologies have great potential in offering interventions for people with intellectual disabilities. In this study, we aimed to co-develop a digital psycho-educational intervention, using a positive resource-oriented approach, to improve the mental well-being of people with intellectual disabilities. Using a two-phase design process, we first used a theory-guided approach to develop the content. Next, iterative consultations with an advisory group of people with and without intellectual disabilities were conducted to proceed with the digital design of the intervention. Feedback from the advisory group addressed issues regarding the intervention's accessibility, interactivity, design and content. Changes were either implemented during the meetings or presented at consecutive meetings until the design and content were deemed satisfactory by the advisory group. This approach demonstrates that people with intellectual disabilities can be included in the development of a novel digital intervention. A future intervention study should determine the practicality and acceptability of this co-developed intervention in routine practice.

Abstract Background As moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research. Methods A multiple-case study was conducted in a care organization for people with intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level. Results According to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up. Conclusions Concretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences.

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

Abstract Background Medical care for people with intellectual and developmental disabilities (IDD) is organized differently across the globe and interpretation of the concept of medical care for people with IDD may vary across countries. Existing models of medical care are not tailored to the specific medical care needs of people with IDD. This study aims to provide an improved understanding of which aspects constitute medical care for people with IDD by exploring how international researchers and practitioners describe this care, using concept mapping. Methods Twenty-five experts (researchers and practitioners) on medical care for people with IDD from 17 countries submitted statements on medical care in their country in a brainstorming session, using an online concept mapping tool. Next, they sorted all collected statements and rated them on importance. Results Participants generated statements that reflect current medical and health care practice, their ideas on good practice, and aspirations for future medical and health care for people with IDD. Based on the sorting of all statements, a concept map was formed, covering 13 aspects that characterize medical and health care for people with IDD across nations. The 13 aspects varied minimally in importance ratings and were grouped into five overarching conceptual themes: (i) active patient role, (ii) provider role, (iii) context of care, (iv) consequences of care for people with IDD, and (v) quality of care. Conclusions The themes, clusters and statements identified through this explorative study provide additional content and context for the specific patient group of people with IDD to the dimensions of previous models of medical care.

This article illuminates the work inclusion policies and strategies and the situation today when it comes to including people with intellectual disabilities in workplaces in Iceland, Norway, and Sweden. The article draws on official documents, previous research, and statistics. We discuss challenges regarding the current situation in the light of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and a social relational understanding of disability. The discrepancy between the current situation when it comes to work inclusion for people with intellectual disabilities in these three Nordic countries, and the perspective of human rights and work inclusion are of special interest as these have increasingly provided the framework for policies in relation to the participation of people with disabilities in the labour market. Approaches in Nordic labour market policies and practices must change to protect and promote the rights of people with intellectual disabilities at work.