Ethical and methodological issues in research with Sami experiencing disability

• Published in: International Journal of Circumpolar Health
• Main Authors: Melbøe, Line, Hansen, Ketil Lenert, Johnsen, Bjørn-Eirik, Fedreheim, Gunn Elin, Dinesen, Tone Åshild, Minde, Gunn-Tove, Rustad, Marit
• Format: Article in Journal/Newspaper
• Language: English
• Published: Taylor & Francis 2016
• Subjects: VDP::Medisinske Fag: 700::Helsefag: 800::Helsetjeneste- og helseadministrasjonsforskning: 806; VDP::Medical disciplines: 700::Health sciences: 800::Health service and health administration research: 806; VDP::Medical disciplines: 700::Health sciences: 800::Community medicine; Social medicine: 801; VDP::Medisinske Fag: 700::Helsefag: 800::Samfunnsmedisin; sosialmedisin: 801; ethical and methodological issues; Sami; indigenous; health; disability; Norway; Circumpolar Health; International Journal of Circumpolar Health; sami
• Online Access: https://hdl.handle.net/10037/10681; https://doi.org/10.3402/ijch.v75.31656

Published version. Source at http://dx.doi.org/10.3402/ijch.v75.31656 Background: A study of disability among the indigenous Sami people in Norway presented a number of ethical and methodological challenges rarely addressed in the literature. Objectives: The main study was designed to examine and understand the everyday life, transitions between life stages and democratic participation of Norwegian Sami people experiencing disability. Hence, the purpose of this article is to increase the understanding of possible ethical and methodological issues in research within this field. The article describes and discusses ethical and methodological issues that arose when conducting our study and identifies some strategies for addressing issues like these. Methods: The ethical and methodological issues addressed in the article are based on a qualitative study among indigenous Norwegian Sami people experiencing disability. The data in this study were collected through 31 semi-structured in-depth interviews with altogether 24 Sami people experiencing disability and 13 next of kin of Sami people experiencing disability (8 mothers, 2 fathers, 2 sister and 1 guardian). Findings and discussion: The researchers identified 4 main areas of ethical and methodological issues. We present these issues chronologically as they emerged in the research process: 1) concept of knowledge when designing the study, 2) gaining access, 3) data collection and 4) analysis and accountability. Conclusion: The knowledge generated from this study has the potential to benefit future health research, specifically of Norwegian Sami people experiencing disability, as well as health research concerning indigenous people in general, providing scientific-based insight into important ethical and methodological issues in research with indigenous people experiencing disability.