Background: Chronic kidney disease is estimated to have a global prevalence of 9.1 percent (2017) and is the 10:th deadliest disease in the world 2022. In Sweden, 5 percent of the population suffers from significantly reduced kidney function. Patients developing end stage renal disease have two options: dialysis or kidney transplantation. For eligible patients, transplantation results in a better quality of life, lower morbidity and increased life expectancy when compared to chronic dialysis. Kidneys for transplantation can be donated from both deceased and living donors. Transplantations with kidneys from living donors have better outcomes compared to transplantations with kidneys from deceased donors. As there is a shortage of donor organs for transplantation worldwide there has been a renewed interest to reintroduce Donation after Circulatory Death (DCD).Aim: The over-all aim of my thesis is to identify weaknesses and hurdles in the present processes of organ donation, thereby potentially finding ways to improve identification and handling of potential living donors and to identify elements that contribute to trust in Donation after Circulatory Death, and in the long run contribute to developing the field, both regarding donation during life and after death.Methods:In Study I, a questionnaire with preset responses and space allotted for comments, was sent to individuals who had previously donated a kidney in life, in order to identify areas of improvement and variables that predict less favorable outcomes after a living kidney donation.In Study II, we investigated the experiences of people close to a person with kidney disease regarding receiving a letter about living kidney donation from healthcare. In-depth interviews were conducted using a semi-structured interview guide. A short questionnaire was also answered by all participants that comprised questions regarding their characteristics and overall rating of the letter.In Study III, we investigated the attitudes and experiences of operating staff that had been involved in the implementation of Donation after Circulatory Death in Sweden. Focus group interviews were done both before and after the implementation of DCD using a semi-structured interview guide. Participants also answered a short questionnaire to obtain their individual characteristics and their motivation to take part in the implementation of DCD.Two different qualitative analysis methods were used: conventional content analysis (Study II) and thematic analysis (Study III). The first method results in categories and the second in themes. Conventional descriptive and inferential statistical methods were used for analysis of Study I.Results:Study I. Thirty-six percent of the living donors reported lacking information in some phase of the process, making this the most reported improvement area. Ten variables (red flags) were identified that negatively affected the experience of donating a kidney in life. The most prominent variables included having more fatigue than expected early postoperatively, experiencing more pain than expected post operatively, poor agreement between expectations and actual experience, and a desire to have had a mentor who has personal experience with donating a kidney in life.Study II. Participants found that the sentences in the letter that stated that living donation should always be based on free will and that the healthcare is neutral, were the most important as they gave them a sense of security and trustworthiness. They also reported that the living donor letter did not induce feelings of pressure to donate, guilt, or bad conscience if they chose not to donate a kidney. They also expressed a preference for a letter as the first step for communication about living donation and transplantation.Study III. The qualitative analysis of the focus group responses generated the theme: Trust for the DCD process. The participants pointed out the importance of receiving evidence-based documentation and comprehensive education on the DCD process. They also emphasized the importance of teamwork and a thorough handover from ICU to provide a picture of the donor's care. Having time to plan the surgery was important as it ensured all team members understood their role. In addition, it was vital for participants that the donors and their families were treated with dignity and respect throughout the process, similar to that given to other patients.Conclusion:Study I. Our data underlines the importance of early receipt of information and knowledge about living donation, helping potential donors gain insight and better understanding of the donation process. It is also important to assess living donors intake of information. Paying attention to the identified red flags can help to individualize treatment and act early in the course instead of having to handle an already established problem later.Study II. The use of a letter from healthcare is well accepted and considered a good way to bring up the subject of living donation.Study III. In order to install trust in the DCD process among the surgical personnel, they must be given knowledge about the entire DCD process and the right conditions for building a team spirit. A positive consequence of the teamwork and of the insights in the parts of the donation process that oneself is not involved in, was the trust that the donor and their relatives were treated with dignity and respect throughout the entire process - ending with a dignified donor operation.List of scientific papersI. Eva Lagging, Jonas Wadström, Linda Gyllström Krekula, Annika Tibell. Red Flags in the Living Kidney Donor Process. Transplantation Proceedings. 2023 Mar;55(2):279-287. https://doi.org/10.1016/j.transproceed.2023.01.008II. Eva Lagging, Kjerstin Larsson, Jonas Wadström, Linda Gyllström Krekula, Annika Tibell. Potential living kidney donors' positive experiences of an information letter from healthcare: a descriptive qualitative study. BMC Nephrology. 2022 Oct;14;23(1):332. https://doi.org/10.1186/s12882-022-02959-5III. Eva Lagging, Ulla Forinder, Annika Tibell, Kjerstin Larsson, Linda Gyllström Krekula. Factors that create trust in the DCD process among surgical personnel: a qualitative descriptive study. Manuscript
Eva Lagging (Wed,) studied this question.