Information for research participants
Thank you for considering participation in this study. This page provides important details about the purpose of the research, what your participation involves, and how your data will be handled.What is this study about, and why are we inviting you to participate?
The number of heart failure patients with a left ventricular assist device, LVAD is increasing worldwide, and in the near future, a growing number of patients are expected to be living with an LVAD worldwide. Patient self-care is essential for successful LVAD treatment. However, the way healthcare professionals deliver self-care education often varies depending on the clinical setting and individual patient needs. The challenges in providing optimal support for self-care may also differ across hospitals and countries. This questionnaire survey aims to explore your experiences and perspectives on self-care education for patients with LVAD.
Link枚ping University is the institution responsible for overseeing and conducting this research project. The study has been approved by the Swedish Ethical Review Authority. The registration number for the ethical approval is 2023-07824-01
How will the study be conducted?
If you choose to participate in the study, please check the box at the bottom of the online survey. You will then be asked to complete a survey and share your comments. You are welcome to write your free-text responses in your native language. Completing the survey is expected to take approximately 15 minutes.
Possible consequences and risks of participating in the study
Participation in the study may feel time-consuming, but your contribution could help enhance self-care support for patients living with an LVAD.
What happens to your data?
The study will collect and register information about you. You will be asked to complete a questionnaire that includes questions about your background, experiences, and perspectives.
The information collected will be stored in a secure database and retained for at least 10 years after the study is completed. All responses will be treated confidentially, and your identity will not be traceable in the research data. A specific code number will be assigned to all study documents, and your data will be stored in a coded format. The principal investigator is Naoko Perki枚 Kato.
The results of the study will be presented in scientific journals and at conferences. All findings will be reported at the group level, and no individual participant will be identifiable.
Your responses and study results will be handled securely to prevent access by unauthorized individuals. Link枚ping University is the data controller responsible for managing your personal data in this study. Under the EU General Data Protection Regulation (GDPR), you have the right to access your personal data processed within the project, free of charge, and to request corrections if any information is inaccurate. You may also request that your data be deleted or that the processing of your personal data be restricted. However, the right to deletion and restriction does not apply if the data is necessary for the current research. If you wish to access your data, please contact Naoko Perki枚 Kato, email: naoko.perkio.kato@liu.se, telephone: +46 (0)11-36 31 17. The Data Protection Officer can be reached at: dataskyddsombud@liu.se. If you are not satisfied with the way your personal data is being handled, you have the right to file a complaint with the Swedish Authority for Privacy Protection (Integritetsskyddsmyndigheten), the supervisory authority responsible for data protection.
How will you receive information about the results of the study?
The results of this study will be published in a scientific journal. If you would like more information, please contact the principal investigator, Naoko Perki枚 Kato (see contact details below).
Insurance and compensation
No additional compensation will be provided for participation in this study. Participation does not require any additional insurance coverage.
Voluntary participation
Your participation in this study is voluntary, and you may withdraw at any time. If you choose not to participate, or if you decide to withdraw, you do not need to provide a reason, and this will not affect your employment or professional standing in any way.
If you wish to withdraw your participation, please contact the project leader (see contact details below).
Project leader
The project leader is Associate Professor Naoko Perki枚 Kato at Link枚ping University, Department of Health, Medicine and Caring Sciences (HMV). Address: Campus Norrk枚ping, Link枚ping University, 581 83 Link枚ping, Sweden.
Telephone: +46 (0)11-36 31 17. Email: naoko.perkio.kato@liu.se