Browsing by Subject "osallistava tutkimus"
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(2019)Behind participatory research is an ideology, which aims to empower those who are not academic researchers. It also offers a chance to examine disability as a social construct instead of a physical disability, and to participate disabled people in conducting research about them. Research ethics considers vulnerable peoples to be populations, which are at risk of being taken advantage of, or incapable of giving consent to research. One of these vulnerable populations is people with intensive special education needs. Intensive special education needs refers to those with severe disabilities, intellectual or developmental disabilities or autism. They might also have severe mental challenges or elongated compulsory education. This research is interested in what research ethical challenges participatory research has, when conducted with people with intensive special education needs. This research also aims to find out, how participatory research can improve the realisation of self-determination and participation of people with intensive special education needs. This research aims to answer the following questions: 1. What research ethical challenges does participatory research have, when conducted with people with intensive special education needs? 2. What possibilities does participatory research create to improve the realisation of self-determination and participation of people with intensive special education needs? This research was conducted as an integrative literary review of 9 articles. Articles were searched using key words of ethics, disability or disabilities or disabled ja participatory research, and the criteria was, that articles had to have been published after year 2000, they were peer reviewed and in English. Content analysis was used to analyse the data. Content analysis was done data based by coding the data, after which the coded data was arranged into themes and categories. After the data was analysed, five categories arose: the failure of getting content, power-imbalances between the academic research and research partners, increased awareness and know-how, challenges brought on by outside influence and empowerment. Regarding power-imbalances the findings were conflicting: on the other hand participatory research was seen as a good way to break down the barriers between the academic researcher and the research partners, on the other hand the academic researchers found themselves incapable of facing the research partners as equals. The most important finding of this study was however, that the data clearly highlighted empowerment and increased competence among the research partners.
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