In Norway, where all citizens are entitled to live in their own homes in their local communities, people with intellectual disabilities receive community-based home care services that aim to promote their ability to live on their own. In our study, we investigated how using an assistive device for cognitive impairment – namely, a memo planner (MP) – in community-based home care services affected the everyday lives of people with intellectual developmental disabilities (IDD). Our sample consisted of seven young adults with IDD and their support staff. Data were collected during field observations and group interviews and analysed via systematic text condensation. The findings illuminate how using an MP can structure the daily lives of young adults with IDD and afford them opportunities to participate in everyday activities. In this article, we discuss how using an MP shapes interactions between people with IDD and their support staff.
This article explores relationships between academics and people with intellectual disabilities collaborating in inclusive research. The authors present and reflect upon narrative accounts from Norway and England from both sides of the relationship. Each relationship is examined, including how it was initiated, established, developed and sustained, what worked well, what the obstacles were and how any conflicts were approached. The concept of being an 'alongsider', working alongside each other (and alongside participants with intellectual disabilities) is used. The paper shows variety in how alongsider relationships are initiated and fostered over time. Mostly, partnerships were initiated informally, based on pre-existing relationships as friends or through support worker-client relationship or earlier research cooperation, although one was initiated through a formal selection process. The paper concludes that when building relationships over time, the personal dimension is important, including sharing an interest, mutual respect and liking each other, while funding and tight timelines can interfere. Accessible Summary • Academics and researchers with intellectual disabilities from England and Norway wrote this article together. • Academics thought up the idea and wrote the background and discussion; people with intellectual disabilities wrote about their experiences. • The paper tells how we got to know each other and how we kept in touch over time. • We wanted to do this because academic researchers in Norway want to do more research with people with intellectual disabilities, and need to know how to get started and keep it going. • We learnt that it takes time spent alongside each other to build good research relationships, and it depends on having fun together as well as working. • We learnt that the academic researcher needs to provide some support, even when there is someone else with that job. • We learnt that sometimes funding and deadlines can get in the way of building strong research relationships.
Purpose: Examining everyday challenges in the interactions between people with intellectual disabilities and their staff, as seen from the user’s perspective, is an important perspective in health care research. Involving people with intellectual disabilities as so-called co-researchers is a relatively unexplored research strategy. In this paper, co-researchers participated in all the steps of the research process, from planning to reporting, in addition to the written reporting of the findings. The aim of this study was to explore how people with intellectual disabilities experienced a filmed vignette of an everyday situation. Method: Based on audio-recorded and transcribed individual and focus-group interviews with people with intellectual disabilities, performed by co-researchers with intellectual disabilities together with researchers, qualitative content analysis was used. Results: The analysis reveals three themes: “being emotionally touched”, “being aware of the other”, and “being unclear”. Conclusions: The results are discussed in light of normalization and participation in society with independence and one’s own decision-making. Regarding the care of people with intellectual disabilities, the main finding is the need to focus not only on greater involvement of this population in their own daily lives, but also to teach self-determination skills. Another finding is the importance of involving people with intellectual impairment as co-researchers.
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