Funding for this research was provided by:
Forskningsrådet om Hälsa, Arbetsliv och Välfärd (2014-4753)
Article History
Received: 20 December 2018
Accepted: 23 June 2019
First Online: 1 August 2019
Ethics approval and consent to participate
: Approval was obtained from the Regional Ethical Review Board in Lund (no. 2013/15). The National Board of Health and Welfare and Statistic Sweden performed a separate secrecy review in 2014 before providing access to the data. All analyses were performed using anonymized datasets. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.Data in the present study is based on anonymized information provided by two official national registrars, The National Board of Health and Welfare and Statistics Sweden. These authorities provide anonymized information for research purposes to individual researchers once the study has been vetted and approved by the Regional Ethical Review Board according to Swedish ethical review regulations. Because of the requirement of anonymized data, each individual could not be asked for consent to participate; instead active refusal of participation was applied. This was done by publishing information about the planned study in the national newspaper “Dagens Nyheter” and in UNIK, the magazine of The Swedish National Association for People with Intellectual Disability (FUB), which is printed in 22,000 copies. The target audience for the UNIK magazine are mainly members (people with ID) and their families. The advertisement was written in two versions, whereof one was easy-to-read text. The advertisement presented the study and contained information on how to contact the research manager (GA) by phone, email or mail in order to opt out of the study. The research manager (GA) was then responsible for contacting the national registrars so that those who opted out were excluded before the registrars provided any data to the research manager.
: Not applicable.
: The authors declare that they have no competing interests.