• Ei tuloksia

The research proposal was submitted to the research ethics committee for consideration and obtaining ethical approval for the study (World Medical Association 2013). Ethical approval to collect the data was received from the University Committee on Research Ethics (STATEMENT 1/2017) and the Research Ethics Committee of one Hospital in Thailand (BSH-IRB 008/2560) for permission to carry out the research in the hospital. In addition, data protection was based on the EU’s General Data Protection Regulation (2016/679, GDPR) (The European Parliament and the Council of the European Union 2016)

Respecting the autonomy of participants

The researcher informed the participants about the aim of this study, the procedures, as well as risks and benefits of this study (National Advisory Board on Research Ethics 2009, World Medical Association 2013). Participants were informed that this study involved voluntary participation and they could refuse to cooperate in the study at any time (World Medical Association 2013). Before collecting data, a consent form was signed by the participant. The consent form to be signed by the subjects is presented in Appendix 8.

Avoiding harm

To avoid mental harm, mental issues (e.g., stress, dissatisfaction, sorriness, and frustration) were observed during the interviews (National Advisory Board on Research Ethics 2009). During the interviews, three adult-child caregivers and one spousal caregiver cried while the researcher (WT) asked about the feelings of providing care for their older family members with a tracheostomy. They cried

because they were worried and stressed about this caregiving. Therefore, the researcher asked them if they wanted to skip questions or stop the interview.

Meanwhile, the researcher, who is a nurse with experience in nursing care for elderly patients and their family caregivers, also provided emotional support to him/her (Holloway & Galvin 2017). After providing emotional support, the researcher asked to make an appointment for the next interviews, but they were willing to continue because they did not want to be interviewed again a second time.

Research data protection and confidentiality

Storing and backing up research data was conducted to protect the data (National Advisory Board on Research Ethics 2009, The European Parliament and the Council of the European Union 2016). Data files and all other files related to the research data was saved on the researcher’s computer. Folders and files were named in an uncomplicated and logical manner. A backup copy of the data was made and stored on the external hard drive. Accordingly, a password was created to access the research data by the researcher. Moreover, all participants’ answers and responses remained confidential and part of the dataset, so their identity was protected at all times. All responses were also stored securely and designated with a unique code, and no names were included in the questions for an in-depth interview. Any information inputted on the computer was securely protected with a password. This means that only the researcher could access the participants’ responses and nobody else (National Advisory Board on Research Ethics 2009).

To keep the textual dataset anonymous, background material containing identifiers was deleted, for example, contact details of participants and background information forms. The name of the participants and any third parties mentioned in the interview was removed or replaced by pseudonyms. The code was created to link other data with the informed consent, so the same data of participants were known, but the person’s identity remains unknown. A file linking participants’ names to pseudonyms was stored on a password-protected computer and separated from the transcripts, and only the researcher had access to this material (National Advisory Board on Research Ethics 2009, The European Parliament and the Council of the European Union 2016). The researcher had a code list of the participants and the code key in a separate protected place. Only the researcher heard audio recordings, and any transcripts were replaced by pseudonyms. In addition, a description of the scientific research data file, based on Personal Data Act (523/1999) Section 10, has been submitted to the Office of the Data Protection Ombudsman in Finland (Finlex Data Bank 1999), while the Ph.D. study was prepared in Finland. In Thailand, where the data were collected, the same kind of personal data act does not exist.

Storing and destroying research data

The researcher stored the documents for the trustworthiness of the data (Holloway

& Galvin 2017). In Thailand, during the research period, the data collection sheet, transcript and other documents were kept in a locked cabinet with access only with a key, located in the researcher’s office, Faculty of Nursing, Burapha University. The external hard drive was used to save the data from audio-recording, and it was stored in a locked cabinet with access only with a key in the researcher’s office, Faculty of Nursing, Burapha University. After collecting data in Thailand, the researcher brought the documents and external hard drive to the University of Eastern Finland to store in a locked cabinet with access only with a key, located in the supervisor’s office at the Department of Nursing Sciences, University of Eastern Finland.

Furthermore, after the research was completed, the original data will be stored in a locked cabinet and destroyed by the principal supervisor after three years have passed since the completion of the study. The processed data will be stored in a locked cabinet for ten years at the Department of Nursing Sciences, the University of Eastern Finland in order to protect personal data. After that, it will be destroyed by the principal supervisor (The European Parliament and the Council of the European Union 2016, Holloway & Galvin 2017).

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