Ethical and methodological issues in research with Sami experiencing disability
ForfatterMelbøe, Line; Hansen, Ketil Lenert; Johnsen, Bjørn-Eirik; Fedreheim, Gunn Elin; Dinesen, Tone Åshild; Minde, Gunn-Tove; Rustad, Marit
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.
ForlagTaylor & Francis
SiteringMelbøe LM. et.al.: Ethical and methodological issues in research with Sami experiencing disability. International Journal of Circumpolar Health. 2016;75:31656
Viser innførsler relatert til tittel, forfatter og emneord.
The Use of eHealth and Provider-Based Health Services by Patients with Diabetes Mellitus: Protocol for a Cross-Sectional Study Hansen, Anne Helen; Bradway, Meghan; Brož, Jan; Claudi, Tor; Henriksen, Øystein; Wangberg, Silje C; Årsand, Eirik (Journal article; Tidsskriftartikkel; Peer reviewed, 2016-10-31)<b>Background:</b> The prevalence of diabetes and the use of electronic health (eHealth) resources are increasing. People with diabetes need frequent monitoring and follow-up of health parameters, and eHealth services can be of great significance in this regard. However, little is known about the extent to which different kinds of eHealth tools are used, and how the use of eHealth is associated ...
Cochrane Collaboration Systematic Reviews may be based on trials not approved by a research ethics committee Jokstad, Asbjørn (Journal article; Tidsskriftartikkel; Peer reviewed, 2017-10-27)Systematic reviews (SR) may potentially contain reports of primary trials with ethical problems. The Cochrane Collaboration SRs are considered as the highest standard in evidence-based health care resources. All SRs completed during the last 5 years (2013–2017) under the management of the Oral Health Group of the Cochrane Collaboration were identified. All primary trials included in the Oral Health ...
Pembrolizumab as second-line therapy in non-small cell lung cancer in northern Norway: budget impact and expected gain—a model-based analysis Norum, Jan; Antonsen, Margaret Aarag; Tollåli, Geir; Al-Shibli, Khalid; Andersen, Gry; Svanqvist, Kristin-Helene; Helbekkmo, Nina (Journal article; Tidsskriftartikkel; Peer reviewed, 2017-07-29)1 Norum J, et al . ESMO Open 2017; 2 :e000222. doi:10.1136/esmoopen-2017-000222 Open Access Abstr A ct Background P embrolizumab is a new drug approved in several countries for second-line therapy in non-small cell lung cancer (NSCLC) being programmed cell death ligand (PD-L1) positive. This drug has a high cost, and the cost- effectiveness ratio has been debated. Patients ...