JMIR Publications

ABSTRACT

Background:

In organ donation from deceased donors, the interaction between the donor’s relatives and intensive care personnel is an important factor. The organ donation process is complex and patients’ relatives play a vital role. Intensive care professionals need knowledge about how relatives perceive and experience the process to create a caring environment and support them throughout. Therefore, this collaborative project aims to explore both relatives’ and intensive care personnel’s perspectives of care in deceased organ donation in Scandinavia.

Objective:

The objectives of this study are to 1) investigate donor relatives’ satisfaction and intensive care personnel’s perception of their own professional competence, and 2) to explore donor relatives’and intensive care personnel’s’ experiences in the organ donation process to design for care and support.

Methods:

This protocol outlines a Scandinavian (Norway, Sweden and Denmark) project including four work packages. Work package 1 started in 2023 with translation and validation of the Family Satisfaction in the Intensive Care Unit questionnaire into a Danish version, and translation of the Professional Competence in Organ Donation Questionnaire into a Swedish and Danish version. A cross-sectional survey measuring Scandinavian relatives’ perception of support in and satisfaction with the organ donation process, and a cross sectional survey measuring Scandinavian intensive care personnel’s competence in organ donation are the foundation for work package 2 (2024). The data from both surveys will be analysed by descriptive and comparative analysis. The results will inform the interview guides in qualitative studies (work package 3 and 4). Participants in the quantitative study will be invited to participate in in-depth interviews. In work package 3, in-depth interviews will be conducted to illuminate relatives’ experiences in the organ donation process. The interviews will be analysed using a phenomenological hermeneutical approach. In work package 4 (2025–2026) one qualitative design study will be conducted to illuminate ICU personnel’s experiences. Furthermore, the results from work packages 2 and 3 will inform the development of specific programmes for care, support and communication in the organ donation process.

Results:

The project was funded by the Norwegian Organ Donor Foundation in 2022 and Scandiatransplant in 2023. Norwegian nurses organization supports the project by funding a PhD-student.

Conclusions:

We anticipate that this project will provide new knowledge will assist us in designing and establishing programs for care, support and donor relatives’ involvement in organ donation processes.