Survey and register data research
In order to receive better understanding on health-related quality of life and functional competence in daily living of disabled people in the Sámi community, we find it important to collect data also via structured methods. In order to fully understand the narratives regarding everyday life we find it necessary to gain an overview of relevant rules and regulations. This is also important when focusing on how our participants take part in democratic processes, since we then are more aware of which processes we talk about in addition to elections. Additionally, comparative studies of public documents will give valuable insights into how Sámi people with disabilities are ensured fair participation in democratic processes in the Nordic countries. Common to documents is that they have lived a "life by their own" before they are studied. Phrases such as "situated products" (Ong, 1982 cited in Prior, 2007, p. 346), "documents as agents" and "social artifacts" (Blaikie, 2009) are used to describe a document’s creation phase, how documents are used, and who asserts influence over the content. Blaikie (2009) describes documents as social activities that are left behind by participants, illustrating that documents are results of an active process, even though the text we analyze is static.
Studying the content of documents might take many forms, and they share in common that the text is the subject of the analysis (Bos and Tarnai, 1999). Our research project will begin by identifying the relevant public documents (white papers, governmental reports, laws, regulations) in the three countries. This will be done both by snowballing and with help from public authorities and representatives from organizations.
We aim to interview a minimum of 30 disabled people of Sámi background, and a minimum of 15 disabled ethnic Norwegians/Swedes/Finns to serve as a “control group”. Further, we will undertake at least three focus groups with 5-6 disabled ethnic Norwegians/Swedes/Finns in each. We also aim to have 3-4 focus groups with disabled people of Sámi background with 4-5 people in each. The participants in the focus group interviews will be disabled people with a Sámi background as well as their caregivers if necessary, and they will be invited to discuss how they experience their own life situation, their participation in democratic processes, and transitions in their lives.
We will use the project findings, in the end of the project period, to make an Ethnotheatre performance, telling the informants' stories by disabled Sámi actors. The project leader who also is a theatre director and dramaturg, will write the manuscript and direct the performance as a way of doing art-based-research (Gjærum & Rasmussen, 2012).
In addition to personal and focus group interviews, experiences on the informant’s health-related quality of life as well as capacity in their own function and activities in their daily living will be collected by using validated and structured self-report questionnaires. This information will be collected via questions derived from questionnaires that have previously been proven to be valid and reliable. The level of informants’ impairment will be taken into account in choosing and formulating the survey questions. It is also possible to collect information using structured interviews to ensure the level of communication and cognitive abilities of the informants. In addition to interviews, caregiver experiences can also be investigated using survey questionnaires.
