A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities

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Improving Environmental Capacities for Health Promotion in Support Settings for People with Intellectual Disabilities: Inclusive Design of the DIHASID Tool

People with intellectual disabilities (ID) have unhealthier lifestyles than the general population. To sustainably improve their lifestyle and health status, a whole-system approach to creating healthy environments is crucial. To gain insight into how support for physical activity and healthy nutrition can be embedded in a setting, asset mapping can be helpful. Asset mapping involves creating a bottom–up overview of promoting and protective factors for health. However, there is no asset mapping tool available for ID support settings. This study aims to develop an asset mapping tool in collaboration with people with ID to gain insight into assets for healthy nutrition and physical activity in such settings. The tool is based on previous research and development continued in an iterative and inclusive process in order to create a clear, comprehensive, and usable tool. Expert interviews (n = 7), interviews with end-users (n = 7), and pilot testing (n = 16) were conducted to refine the tool. Pilot participants perceived the tool as helpful in pinpointing perceived assets and in prompting ideas on how to create inclusive environments with support for physical activity and healthy nutrition. This overview of assets can be helpful for mobilizing assets and building the health-promoting capacities of ID support settings

How can care settings for people with intellectual disabilities embed health promotion?

Background: People with intellectual disabilities (ID) depend on their environment to live healthily. Asset-based health promotion enhances a settings’ health-promoting capacity starting with identifying protective or promotive factors that sustain health. Method: This inclusive mixed-methods study used group sessions to generate and rank ideas on assets supporting healthy nutrition and physical activity in Dutch intellectual disability care settings. Participants included people with moderate intellectual disabilities and family and care professionals of people with severe/profound intellectual disabilities. Results: Fifty-one participants identified 185 assets in group sessions. They include the following: (i) the social network and ways “people” can support, (ii) assets in/around “places,” and person–environment fit, and (iii) “preconditions”: health care, prevention, budget, and policy. Conclusion: This inclusive research provides a user perspective on assets in the living environment supporting healthy living. This gives insight in contextual factors needed for development and sustainable embedment of health promotion in the systems of intellectual disability support settings

Toward Inclusive Approaches in the Design, Development, and Implementation of eHealth in the Intellectual Disability Sector: Scoping Review

BackgroundThe use of eHealth is more challenging for people with intellectual disabilities (IDs) than for the general population because the technologies often do not fit the complex needs and living circumstances of people with IDs. A translational gap exists between the developed technology and users’ needs and capabilities. User involvement approaches have been developed to overcome this mismatch during the design, development, and implementation processes of the technology. The effectiveness and use of eHealth have received much scholarly attention, but little is known about user involvement approaches. ObjectiveIn this scoping review, we aimed to identify the inclusive approaches currently used for the design, development, and implementation of eHealth for people with IDs. We reviewed how and in what phases people with IDs and other stakeholders were included in these processes. We used 9 domains identified from the Centre for eHealth Research and Disease management road map and the Nonadoption, Abandonment, and challenges to the Scale-up, Spread, and Sustainability framework to gain insight into these processes. MethodsWe identified both scientific and gray literature through systematic searches in PubMed, Embase, PsycINFO, CINAHL, Cochrane, Web of Science, Google Scholar, and (websites of) relevant intermediate (health care) organizations. We included studies published since 1995 that showed the design, development, or implementation processes of eHealth for people with IDs. Data were analyzed along 9 domains: participatory development, iterative process, value specification, value proposition, technological development and design, organization, external context, implementation, and evaluation. ResultsThe search strategy resulted in 10,639 studies, of which 17 (0.16%) met the inclusion criteria. Various approaches were used to guide user involvement (eg, human or user-centered design and participatory development), most of which applied an iterative process mainly during technological development. The involvement of stakeholders other than end users was described in less detail. The literature focused on the application of eHealth at an individual level and did not consider the organizational context. Inclusive approaches in the design and development phases were well described; however, the implementation phase remained underexposed. ConclusionsThe participatory development, iterative process, and technological development and design domains showed inclusive approaches applied at the start of and during the development, whereas only a few approaches involved end users and iterative processes at the end of the process and during implementation. The literature focused primarily on the individual use of the technology, and the external, organizational, and financial contextual preconditions received less attention. However, members of this target group rely on their (social) environment for care and support. More attention is needed for these underrepresented domains, and key stakeholders should be included further on in the process to reduce the translational gap that exists between the developed technologies and user needs, capabilities, and context

Inclusive design of a sensitive virtual assistant to support people in vulnerable positions in their access to care

In many European societies, the demand for health and social care for people in vulnerable positions are increasing. Together with a lack of personal and growing societal care costs, it is warranted to look for innovative ways to better support people in vulnerable positions in their care. People in vulnerable positions often face challenges in the timely access to various forms of care they need, for example due an intellectual disability, autism spectrum disorder (ASD) or a mental disorder. This project examines the possibility of a virtual assistant to improve access to care for people in vulnerable positions. Innovative in this project is the study of whether and how a ‘sensitive’ virtual assistant can be developed, i.e., a virtual assistant that modifies to the different needs of the target group through adaptive and inclusive artificial intelligence technology. The sensitive virtual assistant will be developed through a design thinking method, in which 1) the current and desired experiences of the target group regarding their care and support are mapped, and 2) the sensitive virtual assistant's ability to address these needs and adapt its functionalities to different users will be explored. Interestingly, this study takes place in close collaboration with ‘citizen scientists’ who have a cognitive impairment such as intellectual disability or ASD. In this inclusive research trajectory, they ensure that the virtual assistant will fit the needs and lifeworld of the target population. This project is expected to generate theoretical, methodological and technological contributions to the field of chatbot research, citizen science and inclusive research