Text and Data Mining valid from 2020-02-12
Received: 21 February 2019
Accepted: 3 February 2020
First Online: 12 February 2020
Ethics approval and consent to participate
: According to the Dutch Medical Research involving Subjects Act of the Central Committee on Research Involving Human Subjects, ethical approval is only necessary when studies concern medical/scientific research and participants are subject to procedures or are required to follow rules of behaviour [CitationRef removed]. Our study protocol (No. MEC-2017-207) was reviewed by the Medical Ethics Committee of the Erasmus Centre Rotterdam, the Netherlands. The Medical Research Involving Subjects Act was not found applicable.For the quantitative data collection, patients first gave explicit written consent to share their contact details with the research team. All patients who consented were contacted by phone. During this conversation, we further informed the patients on the purpose of the study and asked for consent for a home visit. During the home visit, patients were again informed on the purpose of the study and the audio-recording of the interview. At all times patients were allowed to withdraw their consent.Due to privacy reasons, the research team did not have the contact details of the informal caregivers and home care nurses. Therefore, these respondents received an envelope (via the patient or home care nurse) containing an information letter on the purpose of the study and the contact details of the research teams as well as the questionnaire. Informal caregivers’ and home care nurses’ consent was assumed by completion of the questionnaire.For the qualitative data collection, during the recruiting of the participants as well as at the beginning of the interviews, the participants were repeatedly informed about the recording of the interviews and asked for their verbal consent. In the initial email or phone call all participants were informed about the purpose of the study and the fact that the interviews would be recorded if participants would consent to this. In this phase, we also explicitly stated that although the interviews would be recorded, all participants would remain anonymous in the study. At the beginning of the interviews, we explicitly asked all participants for verbal consent to recording of the interviews. At all times, participants were allowed to refuse recording of the interview. At any time, participants were allowed to withdraw their consent.Our reviewed study protocol explicitly stated the consent to participate procedure for both the quantitative and qualitative data collection phase. The Medical Ethics Committee of the Erasmus Centre Rotterdam, the Netherlands reviewed and approved our study protocol. Therefore, written consent for the qualitative data collection was not found necessary.
: All respondents gave verbal consent for the use of the data for publication. In the recruitment phase for both the quantitative and qualitative data collection, all respondents/participants were informed and on the purpose of the study and asked for verbal consent for the use of the collected data for scientific publication. The researchers made explicit that all respondents/participants would remain anonymous in publications. For the quantitative data collection, the information letter again stated the purpose of the study and the collected data would be anonymously used for publications. For the qualitative data collection, prior to the interviews all participants were asked for verbal consent to using the data for publications as well as using anonymous quotations.The verbal consent procedure for publication was stated in our study protocol (No. MEC-2017-207). The protocol was approved by the Medical Ethics Committee of the Erasmus Centre Rotterdam, the Netherlands.
: The authors declare that they have no competing interests.