Hommerberg, Charlotte http://orcid.org/0000-0002-7280-7714
Gustafsson, Anna W. http://orcid.org/0000-0002-8996-6295
Sandgren, Anna http://orcid.org/0000-0002-3155-575X
Funding for this research was provided by:
Familjen Kamprads Stiftelse (20150008)
Article History
Received: 12 April 2019
Accepted: 31 March 2020
First Online: 25 April 2020
Ethics approval and consent to participate
: The ethics guidelines for studies using internet-based data are at present inconclusive. There is a general consensus that materials that are not password-protected can be used freely for research purposes, since it can be assumed that the author was aware of the public status of their writing [CitationRef removed,CitationRef removed,CitationRef removed]. However, there are also recommendations which encourage additional ethical deliberations at all stages of the research process when using internet data [CitationRef removed]. In the present study, we devised a set of inclusion criteria which meant that a number of potential bloggers were excluded in order not to violate their integrity. Six of the bloggers were still alive at the time of data collection. They were contacted and informed about the purpose of the study, and gave their consent to including their texts in the dataset and citing excerpts in scientific publications. In those cases where we were not able to contact bloggers to obtain consent because they were no longer alive, we considered their public status in terms of number of followers and/or whether they had explicitly stated they wanted their blog to help others. Furthermore, the bloggers’ identity is protected by means of two measures: The data is stored in a password-protected corpus managed by Språkbanken KORP to which only the project collaborators have access, and because we only included translated excerpts from the data in this study, excerpts are not searchable online. By taking these steps, we believe that we have acted in the best interest of the bloggers included in this study. The Regional Ethical Review Board in Linköping, Sweden (reference number: 2014/304–31), approved the interviews conducted in the Center for Collaborative Palliative Care, Sweden. In accordance with the ethical guidelines, participants received oral and written information about the aim of the study, the voluntary nature of participation, the right to refrain at any point in time without having to specify why, and the right to confidentiality. All the participants signed an informed written consent before the interview. The interview data were only used in step 1 of the procedure, and we do not report any findings based on the interview data in this article. Throughout steps 2–4, only the dataset consisting of open blogs was processed.
: Not applicable.
: The authors declare that they have no competing interests.