Cristin-prosjekt-ID: 450550
Sist endret: 7. oktober 2014, 14:33

Cristin-prosjekt-ID: 450550
Sist endret: 7. oktober 2014, 14:33
Prosjekt

Diversity & tolerance – respect for everybody.

prosjektleder

Line Melbøe
ved Vernepleierutdanning ved UiT Norges arktiske universitet

prosjekteier / koordinerende forskningsansvarlig enhet

  • UiT Norges arktiske universitet

Klassifisering

Vitenskapsdisipliner

Humaniora

Emneord

Samisk kultur og samfunnsfag • Samisk etnografi • Familier med funksjonshemmede barn

HRCS-forskningsaktivitet

  • 3 Sykdomsforebyggende og helsefremmende tiltak, og fremme av velvære

Kategorier

Prosjektkategori

  • Grunnforskning

Kontaktinformasjon

Telefon
77058100
Sted
Line M. Sagen

Tidsramme

Avsluttet
Start: 1. august 2014 Slutt: 1. januar 2016

Beskrivelse Beskrivelse

Tittel

Diversity & tolerance – respect for everybody.

Vitenskapelig sammendrag

Background and status of knowledge

The total Sámi population is estimated to be over 75 000, with the majority (40 000) living in Norway. In Sweden there are around 20 000 Sámi and in Finland around 9 000. More than 60 percent of the Finnish Sámi now lives outside the Sámi community. The situation is somewhat similar in Norway and Sweden. This fact provides challenges related to the provision of education, health services and communication in the Sámi language.

 

This project focuses on Sámi disabled people in Norway, Sweden and Finland. Common for these countries is a lack of knowledge regarding the living conditions of disabled people of Sámi background. We do know that disabled Sámi people commonly have been taken care of by close relatives at home, without being diagnosed. When their caregivers (often the parents) pass away, they move to group homes. The challenge then is how to integrate these people into the everyday life, and how to ensure that they are taken care of in a best possible manner. The life lived by disabled people of Sámi background is in many ways different than the everyday life in group homes. Additionally, there are challenges related to their bilingual background (Norwegian Ministry of Health and Social Affairs, 2001). 

 

According to a Finnish study funded by the Ministry of Social Affairs and Health and conducted by the University of Lapland (Heikkilä, Laiti-Hedemäki & Pohjola, 2013), only 55% of Sámi people were satisfied with basic health services provided by municipalities. Under one third (30%) were satisfied with social services. The study also revealed that the Finnish Sámi people were dissatisfied with social work and services for older people. The survey respondents felt that older persons are not provided with enough services in their own language. Long distances and lack of public transport also contributed to the respondents' lack of satisfaction. (Heikkilä, Laiti-Hedemäki & Pohjola, 2013). Living conditions of people with intellectual disabilities among the Sámi community has not been studied earlier in Finland.

 

Also in a Swedish context little, is known regarding the living conditions of disabled people of Sámi background. In general, research illustrates that people with intellectual disabilities in Sweden are living under lower health status and lower socioeconomic standard compared to the rest of the Swedish population (National Board of Health and Welfare 2010; Lövgren 2013, Ineland, Molin & Sauer 2013, Ineland 2013).

 

The Norwegian government White Paper No. 45 (2012-2013) discusses the living conditions of people with disabilities in Norway, and provides a status report regarding this. The white paper concludes that we have little knowledge of disabled people of Sámi background, and thus asks for more knowledge regarding disabled Sámi people in a life-span perspective, how they participate in democratic processes, and how they experience their own circumstances of life. The Norwegian Directorate for Children, Youth and Family Affairs (BufDir) gave a status report on the living conditions of people with intellectual disabilities in 2013 (Barne-, ungdoms- og familiedirektoratet, 2013), concluding along the same lines as in White Paper No. 45 (2012-2013).

Metode

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.

 

Utstyr

The project group comprises researchers from Section of Social Education, Harstad University College (HiH), Department of Social Work, Umeå University (UmU), Oslo and Akershus University College of Applied Sciences (HiOA), and Rehabilitation Foundation (Centre for Rehabilitation Research and Development) (CRRD), Finland.

 

The participants are the following (CVs are attached in the grant application form): Professor Rikke Gürgens Gjærum (HiH/HiOA) (project manager),

  • HiH: Associate Professor Line Sagen, Associate Professor Bjørn-Eirik Johnsen, Associate Professor Gunn Tove Minde, and Associate Professor Gunn Elin Fedreheim.
  • UmU: PhD, Senior Lecturer Lennart Sauer and PhD, Senior Lecturer Veronica Lövgren
  • CRRD: Research Director, Docent (Adjuvant Prof.) PhD, Erja Poutiainen, Senior Researcher, PhD Mila Gustavsson-Lilius, Senior Researcher, PhD, Riikka Shemeikka

 

We also apply for a doctoral fellowship, and expect the candidate to write a PhD based on the project work. The position will be situated in Harstad, but the candidate will apply for acceptance at a PhD program of his/her own choice according to his/her background. The candidate will participate in all aspects of the project.

Tittel

Mangfold & toleranse - respekt for alle

prosjektdeltakere

prosjektleder

Line Melbøe

  • Tilknyttet:
    Prosjektleder
    ved Vernepleierutdanning ved UiT Norges arktiske universitet

Ingrid Fylling

  • Tilknyttet:
    Prosjektdeltaker
    ved Fakultet for samfunnsvitenskap ved Nord universitet

Kirsti Bjørg Koppen

  • Tilknyttet:
    Prosjektdeltaker
    ved Vernepleierutdanning ved UiT Norges arktiske universitet

Bjørn-Eirik Johnsen

  • Tilknyttet:
    Prosjektdeltaker
    ved Fakultet for humaniora, samfunnsvitenskap og lærerutdanning ved UiT Norges arktiske universitet
  • Tilknyttet:
    Prosjektdeltaker
    ved Vernepleierutdanning ved UiT Norges arktiske universitet

Gunn Elin Fedreheim

  • Tilknyttet:
    Prosjektdeltaker
    ved Vernepleierutdanning ved UiT Norges arktiske universitet
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