To our knowledge, there are no previous studies about this method of informing potential LDs. The intention of the LD-letter is to inform about kidney transplantation and living kidney donation, and to facilitate a first contact between a patient with kidney disease and potential donors. The letter does not constitute or include a comprehensive guide to the process. Nor does it attempt to weigh the risks and benefits of kidney donation in order to facilitate the decision-making process.
In the Swedish kidney donation context, arguments from healthcare providers averse to sending the LD-letter included that such a letter would put pressure on the receivers to register as potential LDs and that it would negatively affect the relationship between the patient with kidney disease and receiver of the LD-letter. The mentioned serious fears are the reasons why we wanted to study how the letter was experienced by PLDs. These concerns were not confirmed by our study, however. On the contrary, our findings show that the LD-letter was not perceived to entail any pressure or invasion of privacy, or to affect the relationship between the patient with kidney disease and letter-receiver, which is an important message from potential donors. Receiving a personally addressed letter to their home made the participants feel chosen, respected and as important in the transplant process. It was also important that the letter explain that the patient with kidney disease him/herself had chosen them as the receiver of the letter.
The LD-letter creates clarification and trust in that the decision to donate is the potential donor’s to make and that the decision must be voluntary. Similar results were found by Brown et al., where kidney donors stated that their decision to donate was personal and that they must feel comfortable with their decision because it is the donor who has to live with it [14]. Voluntarism is, in addition, an important aspect of the concept of informed consent as well as of international guidelines and policies on evaluation and care of LDs [15,16,17].
The medical team is thus responsible for ensuring that a potential donor’s decision to donate is voluntarily and that they are free to withdraw that decision at any time [15,16,17]. Raising the issue of LD via the LD-letter enables the healthcare provider to take an active role at an early stage in the LKD process. The earlier healthcare can provide accurate information, the more likely it is that potential LDs will be able to use that information in making their decision and prevent a decision based on misconceptions regarding LKDT. According to Ummel et al., a LD’s decision-making process often begins before their donor evaluation commences [18]. This means that the decision process may begin before potential donors meet healthcare providers working with living kidney donation who can provide them with relevant and accurate information [18]. Agerskov et al. found that good communication between healthcare and the donor increased predictability, confidence, motivation, and commitment of the donor, which in turn promoted optimal post-donation outcomes [19].
Our participants considered it positive that healthcare providers are a neutral part acting from a professional standpoint. In our study, this was mentioned from several aspects. Information about healthcare providers being neutral with respect to the PLD’s donation decision, regardless of whether that decision was affirmative or negative, was appreciated. Healthcare’s neutrality also facilitated the opportunity (mentioned in the LD-letter) for potential LDs to ask questions and discuss LKDT issues with healthcare professionals. The importance of enabling PLDs to discuss LDK with healthcare professionals is supported by A recent study by Schick-Makaroff et al. supports our finding. [20].
Healthcare’s neutrality and knowledge about LKD are also important as our study participants note this as a reason why healthcare providers should have the responsibility to contact and raise the issue of LD with potential donors. This in turn relieves the patients from handling this on their own. At present, the most common practice for approaching potential LDs is for patients with kidney disease to make these contacts themselves. This was also found by Mazaris et al., who describe how healthcare providers, to a much higher degree than patient with kidney diseases or LDs, feel that the initial approach should be made by the patients [6]. However, more in line with our results, a previous study found that patient with kidney diseases seeking a LD required guidance and support, that they found it difficult to approach their social network regarding their need for a LD, plus that they did not know where to turn for help [21].
Even patient with kidney diseases who received coaching to discuss their need of a kidney found it difficult to approach others about live donation [9]. Thus, educating patient with kidney diseases about LKDT gives them more knowledge, but does not necessarily lead to more completed LKDTs [22]. Furthermore, patient with kidney diseases vary in their ability to approach potential LDs and inform them about the medical aspects [23].
When the participants were asked about follow-up of the LD-letter, some wanted the healthcare providers to be responsible for this, while others stated that they would perceive this as being pressured and would instead prefer to contact the healthcare team themselves. None of the participants wanted their potential willingness to donate a kidney to be addressed on this occasion. One way of handling the follow-up could therefore be to include a card with the LD-letter asking if the PLD would like to be contacted by healthcare. Those who want to be contacted can signal this by returning the enclosed card. Healthcare can then contact only those PLDs who have accepted this via the card, and not the others.
Most of the participants found the LD-letter to be objective, respectfully written, and easy to read as they felt it was written in everyday language with no medical terminology used. They also considered its content to be adapted to the receiver. The importance of formulating information to potential LDs at a level that facilitates their comprehension of the information has been shown in previous research [24]. Potential LDs level of health literacy may influence their ability to understand and use information about LKD [25]. Thus, keeping the information simple and using everyday language may make the LKD process more accessible to a wider range of people [26].
All participants preferred to initially receive the LD-letter and then receive other types of information, such as through LKDT meetings. Those who had experience of LKDT meetings, where both healthcare providers and individuals who had previously donated a kidney or received one were present, expressed great appreciation of these meetings. The meetings were considered an important source of information and the opportunity to attend anonymously was appreciated. Another study found LKDT meetings (which they called “Saturday seminars”) useful in informing both patient with kidney diseases and members of their social network about LKDT [27].
The importance of potential LDs having access to information from individuals with personal experience of the LKD process has also been shown in other studies [20, 21, 28]. These individuals convey dimensions and perspectives that add to the factual and medical aspects provided by the healthcare staff. They have faced the same challenges and decisions and can therefore address fears, emotional issues, offer practical advice, and share experiential knowledge related to considering LD, in a way that only someone with personal experience of donation can do [19,20,21, 29]. Another study showed that access to a mentor, pre-donation, provided donors with greater confidence in their own decision to donate [28]. Other information methods targeted at both patient with kidney diseases and their social network are home-based education interventions (HBE) and Talk About Live Kidney Donation social worker interventions (TALK-SWI) [30,31,32]. In HBE, information is given in a homelike environment by healthcare personnel knowledgeable in the field. The TALK-SWI method consists of a first meeting focused on helping patients identify barriers to their considering LDKT, followed by a second meeting that also includes the patients’ social network, to help identify barriers to pursuing LDKT. One difference between these other communication methods and the LD-letter is that, while the other methods to a large extent make the patient responsible for sending out invitations to such meetings to their social network, in the case of the LD-letter, it is the healthcare providers who handle the invitation. In addition, the LD-letter enables people residing across a larger geographical area to receive information. And because it does not require large resources, even smaller clinics can use the LD-letter method.
Having accurate information and interactive applications regarding LDKT available on the internet provides potential LDs, especially those who are hesitant, easy access to it before meeting with healthcare professionals. Reliable online resources may also help to address misconceptions and fears the donor may have and enable them to consider and deliberate donating prior to disclosing their interest to others [33, 34]. A lack of knowledge has been identified as a factor that may prevent or discourage potential LDs from becoming an organ donor [21, 35]. Instead of face-to-face meetings, Waterman and colleagues have described a web-based project to present personal stories from LDs and kidney recipients that could be used to inform interested parties – everyone from PLDs to the general public [36].
Several measures were taken to strengthen the credibility of the study findings. As noted, a purposeful sampling was performed among persons who had received the LD-letter from healthcare, in order to attain variation in participant gender, relation to patient with kidney disease, and the year the LD-letter was received. An interview guide with open-ended questions was moreover used and, prior to the study, a pilot test of the guide conducted on previous and potential living kidney donors. Finally, the first steps of the analysis were performed separately by the first and second author, who had different pre-understandings of transplantation and organ donation, whereupon further discussion with the entire research group followed, until the assigned codes and categories were consistent. The first, third, fourth and fifth authors’ pre-understanding of organ donation contributed to both broaden and deepen the analysis of the data. The second author had no prior experience of working with organ donation, thus strengthening the analysis by minimizing the impact of the other authors’ pre-understanding. The study´s dependability was enhanced by a transparent description of the steps in the research process. To achieve confirmability, authentic citations were used to illustrate the content of the categories. Transferability was promoted by using an inductive approach during analysis. The results thus represent a wide spectrum of the participants’ experience and may also be valid for others who have a similar relationship to a patient with kidney disease.
There are limitations to this study that should be considered. These include the sampling procedure, which was not successful with respect to relationship to the patient with kidney disease, in that the sample lacked relations such as children and friends of the patient, and the year the LD-letter was received, in that no participants who received the letter in 2013 and 2017 took part. The large variation in the number of letters sent per year is probably partly due to that use of the LD-letter is not a routine practice in healthcare. In addition, it was the patients with kidney disease themselves who decided to whom and to how many people the letter should be sent. In the case of 2019, the interview was conducted at the beginning of the year when this study ended.
Future research should investigate how patients with kidney disease feel about this approach to contacting potential donors. For example, what influences the patients when selecting recipients of the letter. Another area that could be studied is how the letter is perceived by individuals who are not as close to the patient and who barely know that the patient has kidney disease. Further knowledge and a better understanding of possible cultural differences are also needed. It is also important to understand how healthcare professionals selects patients they ask about sending the letter and how the patient is asked to select recipients of the letter. A randomized control study should also be done.
