Lagerlund, Hanna
Thunborg, Charlotta
Sandborgh, Maria
Funding for this research was provided by:
Mälardalen University
Article History
Received: 9 July 2021
Accepted: 16 March 2022
First Online: 29 March 2022
Declarations
:
: The Swedish Ethical Review Authority (dnr 2018/2169—31) reviewed and approved the study. The rights of the participants were carefully considered and protected in all aspects. Since the PwD lacked consent capability, the procedure of assent and dissent to participate was applied, as described by (Black et al., 2010), and in accordance with the Swedish Act concerning the ethical review of research involving humans [CitationRef removed]. It was carefully considered whether the PwD should be included in the study, based on the assent-dissent procedure, and consultation with the next of kin, the responsible nurse, and the caregivers who worked closest to the PwD. If there was uncertainty about what the person with dementia expressed or if the PwD was considered to be displeased or negatively affected, e.g. through increased anxiety or agitation the PwD was not included in the study. The PwDs were asked for assent defined as “an affirmative agreement to participate as expressed verbally (i.e., orally) or a nonverbal indication of willingness to cooperate with study procedures” (31, p. 80) in close connection to each video uptake of the person transfer situation. The information was adapted to the person's communicative ability, and the PwD was given time to respond to the oral information about video recording and study procedures. The person transfer situation was carefully observed by the first author, who is an experienced physiotherapist, in dementia care, to detect any expression of dissent. Dissent is defined as “a verbal or non-verbal indication of unwillingness to participate in study procedures” (31, p. 81). Further, the assisting caregivers who knew the PwD well were asked if they detected any inconvenience of the PwD before, during and/or after the video recording.. The first author, who video recorded, was at all times visible to the PwD, and no video recording was done in secret or hidden from the PwD. There was no video recording of the PwD undressed. Any verbal or nonverbal indication of unwillingness (i.e. dissent) during the observation would have led to immediate end of the video recording and exclusion of the PwD from the study. The first author contacted the next of kin via telephone, provided oral information about the study with the opportunity to ask questions and sent the written study information with the consent form by mail with a prepaid envelope. The next of kin could not make the decision on behalf of the PwD but rather could only state whether they did not oppose the PwD’s participation by responding to the question “Do you oppose the participation of your next of kin?”. The next of kin was asked, based on his or her experiences, how the PwD would have reacted to participate in a research study, before the development of late-stage dementia. The caregivers were provided with oral and written information of the study and asked to provide written and informed consent to participate.All methods were performed in accordance with the relevant guidelines and regulations.
: Written informed consent for publication was obtained from the caregivers and the next of kin in the same procedure as “Consent to participate” (see above).
: The authors declare that they have no competing interests.