VLIEGEN IN HET DONKER: VAN WAARDEN NAAR HANDELINGSNORMEN IN INCLUSIEF ONDERZOEK

Steeds vaker wordt in onderzoek naar mensen met een verstandelijke beperking (VB), samengewerkt met mensen die zelf een dergelijke beperking hebben. De auteurs van deze bijdrage hebben samen met mensen met een VB een interventie ontwikkeld die zich richt op het bespreekbaar maken van eenzaamheid en het oefenen van sociale relaties, bij mensen met en zonder een verstandelijke beperking. Recent onderzoek toont aan dat samenwerken met mensen met een VB de kwaliteit van onderzoek ten goede komt. De meerwaarde van samenwerking met mensen met een VB geldt ook voor de ontwikkeling van interventies in het sociale domein. De kans op duurzaam gebruik van interventies neemt toe wanneer in het ontwikkelproces uitgegaan wordt van het perspectief van betrokkenen en eindgebruikers. Een inclusieve onderzoeksaanpak biedt hier kansen toe. We weten echter nog weinig van wat er nu precies in deze samenwerking gebeurt, waardoor elke onderzoeksgroep in feite opnieuw begint met vormgeven van dit proces. Walmsley (2004) pleit voor een betere weergave van het onderzoeksproces waarbij de rol van de niet-beperkte onderzoekers die inclusief onderzoek mede mogelijk maken en faciliteren, geëxpliciteerd wordt. Door dit proces inzichtelijk te maken kunnen onderzoekers van elkaar leren en door open te evalueren voorkom je ‘pseudo-participatie’ (Walmsley, 2004, p. 66). Daarom hebben we dit inclusieve project vanaf de start tweeledig ingezet: we deden onderzoek naar het thema eenzaamheid om tot een interventie te komen, waarmee eenzaamheid bespreekbaar gemaakt kan worden en tegelijkertijd deden we onderzoek naar de inclusieve samenwerking en hoe deze gewaardeerd en vormgegeven werd. We hebben er voor gekozen om deze inclusieve samenwerking handen en voeten te geven, vanuit Socially Responsive Design, een participatieve aanpak vanuit de designwereld. Deze benadering stelde ons in staat om stap voor de stap een gedragen interventie gericht op eenzaamheid en het oefenen van sociale relaties vorm te geven met oog voor de diverse perspectieven van de deelnemers. In dit artikel lichten we de inclusieve samenwerking toe, we leggen uit welke waarden ten grondslag liggen aan inclusief onderzoek en vervolgens vertalen we deze waarden vanuit ons samenwerkingsproces naar concrete handelingsnormen. In de  beschouwing van deze handelingsnormen, tonen we onze piekervaringen, maar ook onze dilemma’s, in de hoop dat toekomstige onderzoeksgroepen hier hun voordeel mee kunnen doen

Co‐designing the Cabriotraining : a training for transdisciplinary teams

Accessible summary The research was conducted by a team of researchers. Some of the researchers have experience of living with a disability. The researchers created training for other research teams that include experts by experience. The training has six parts. To decide what happened in the training, the researchers read articles and asked the research teams they trained about what problems they had and what they wanted to know about. The article tells why and how the training was made. It also says what training is needed for researchers with and without disabilities to learn and work together in a way that feels safe and useful. In developing and providing the training, it was very crucial to search for a safe and welcome space for all people involved (Figure 8). As we don't know what is "safe" for the other, this means we have to search together, in respect and with enough time to get to know each other. Background Researchers collected questions and needs for training from 10 inclusive research projects in the Netherlands. Based on literature research and the information collected, six training modules were developed. Researchers sought to learn how to develop and provide training and coaching to inclusive teams on organising collaboration in the different stages of their research projects. Method An iterative training development process to support inclusive research projects was initiated by a research duo backed by a transdisciplinary team including researchers, trainers and designers. Some members of the team have experiential knowledge based on living with a disability. Results Literature research resulted in four guiding theories, including Universal Design for Learning, Derrida's concept of Hospitality, post-materialist theory looking at agency as an assemblage, and Romiszowski's model situated within Instructional Design theory. Insights gained during development of the training modules are documented with text, figures and vignettes. A core finding was the need to add "Level Zero" to Romiszowski's model: a collective term created for all the interacting issues trainers had to consider because of research group diversity. Conclusions Hospitality formed the heart of "Level Zero." Creating a failure-free space for learning is an important pre-condition for the development and organisation of training. Training can inspire exploration and reflection on collaboration and can illuminate how to conduct research within transdisciplinary teams. Essential practices included working with nonverbal research methods, as these are (more) fit for purpose when including the knowledge of experts by experience and incorporating practice- and stakeholder-based knowledge

Social networks of people with ID: An exploration of functional characteristics and ways for enhancement

Item does not contain fulltextAims: Supportive social networks are crucial for facilitating social inclusion and better quality of life (QOL) of people with intellectual disabilities (ID). However, little is known about the functional characteristics of social networks of people with ID (e.g. provision of emotional or practical support). Therefore, this study explores these characteristics as well as the results of an intervention aimed at their enhancement. Methods: First, data were gathered from 33 young adults with mild to borderline ID using the Maastricht Social Network Analysis (MSNA) to map their social networks. Next, the results of a social network intervention in the lives of five participants were explored from several perspectives (i.e. participants with ID, their support workers and trainers), using mixed methods (i.e. interviews and questionnaires). Results: People with ID experience practical as well as emotional support coming mainly from professionals. A qualitative analysis of the intervention revealed the vulnerability of participants and their networks, but also the benefits experienced in the intervention, such as decreased loneliness. Conclusion: Functional characteristics of social networks of people with ID and the role of professionals are discussed with respect to enhancing quality of life and social inclusion.2 p

Social networks of people with mild intellectual disabilities: Characteristics, satisfaction, wishes and quality of life

Item does not contain fulltextBackgroundA supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. MethodData were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL-16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. ResultsThe majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection - especially towards family and professionals - was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. ConclusionsThe significance of family and the importance of high-quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves.12 p

Do social networks differ? Comparison of the social networks of people with intellectual disabilities, people with autism spectrum disorders and other people living in the community

Contains fulltext : 155052.pdf (publisher's version ) (Open Access)The aim of this study was to determine the similarities and differences in social network characteristics, satisfaction and wishes with respect to the social network between people with mild or borderline intellectual disabilities (ID), people with autism spectrum disorders (ASD) and a reference group. Data were gathered from 105 young adults living independently in the community. The social networks of people with ID and ASD are more restricted than those of the reference group. Compared with the other groups, people with ASD are less often satisfied with their networks. Each group has its own characteristics, issues and wishes with respect to their social network. Practical measures to enable professionals to adapt to these issues are discussed.13 p

Structural and functional characteristics of the social networks of people with mild intellectual disabilities

Item does not contain fulltextIn the research on people with intellectual disabilities and their social networks, the functional characteristics of their networks have been examined less often than the structural characteristics. Research on the structural characteristics of their networks is also usually restricted to the size and composition of the networks, moreover, with little attention to such characteristics as the variety, accessibility, length and origin of the relationships or the frequency and initiation of the contacts. A comprehensive examination of both the structural and functional characteristics of the social networks of 33 people with intellectual disabilities was therefore undertaken. The social networks of the individuals who all lived in the community varied from 4 to 28 members (mean 14.21); 42.65% of the network members were family members, 32.84% acquaintances and 24.51% professionals. Remarkable is the high frequency of contact with network members; the finding that the participants considered themselves to be the main initiator of contact more often than the other members of their networks as the main initiators; the high scores assigned to neighbours and professionals for functional characteristics; and the relatively low scores assigned to network members for the connection characteristic of the social networks. The important role of professionals in the social networks of people with mild intellectual disabilities and practical implications to facilitate their social inclusion are discussed.9 p