With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid "tokenism," this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.
Background To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the 'know-do-gap'. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long-term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID. Method A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines.
Objectives: One of the general articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on the right of freedom to make one's own choices and being aware of the importance for persons with disabilities to obtain independence. People with intellectual disability (ID) are, to a greater or lesser degree, dependent on significant others, such as support staff with respect to decision making. For that reason, the UNCRPD also stresses the relevance of supportive decision making, which should be stimulated by service policies. However, support staff may find it necessary to restrict people with ID to make their own choices, for example to prevent them from harm. Since restrictions should be applied in the interest of people with ID, it is essential to examine their own perception. In this study, we have examined how people with moderate ID themselves perceive and evaluate restrictions in daily care, using a qualitative methodology. Method: Based on an extensive pilot study, we conducted interviews being close in time and place in which possible restrictions might occur. Additionally, we applied triangulation of sources. After conducting interviews with eight persons with a moderate ID, we examined their clinical files and interviewed their key workers. Qualitative analysis was carried out by two researchers, using an inductive, thematic approach. Results: Results demonstrate communality between the participating people with ID and their key workers in perception and evaluation of restrictions, in people with ID tending to comply with the applied restrictions. When the participants with ID and their key workers differ in their evaluation of applied restrictions, this appears a value based dissensus. Conclusion:To ensure that restrictions are applied in the best interest of people with ID, it is essential that staff are attentive to the wishes of people with ID, which might be based on different values. By asking people with ID about their experiences and views of the restrictions imposed on them, we hope to contribute to an ongoing and open dialogue to inform the planning and delivery of services for people with ID based on 'best interest' principles.
Introduction: People with an intellectual disability (ID) are at risk of developing challenging behavior. Although previous research provided important insights into how to support people with an ID and challenging behavior, it remains unclear what various stakeholders consider to be the most essential aspects to further improve their support. Method: Statements regarding aspects perceived necessary to improve the support to people with an ID and challenging behavior were collected in focus groups. Afterwards participants individually prioritized and clustered these statements, resulting in concept maps for people with an ID, direct support workers, and psychologists. Since only three relatives participated in the entire concept mapping procedure, no concept map could be composed based on their input. Results: Participants generated 200 statements. In the concept map of clients, statements were mentioned regarding relational aspects, providing clarity and structure, characteristics of support staff, and professional attitude of direct support workers. Direct support workers provided statements related to their own personal competencies, the necessity of feeling supported and appreciated, and a physical safe environment. Psychologists provided statements regarding their support for direct support workers, the support for the clients, the perspective on the client, and their role as psychologists. Conclusion: The results of this study may be a starting point to foster increased evidence based practice for the support for persons with an ID and challenging behavior. Moreover, it provides opportunities to create care founded on mutual attunement, based on listening to each other's ideas and insight into perspectives and needs of various stakeholders.
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