Respondents were recruited through organisations that target specific subpopulations with LHL (limited reading and writing skills, minor intellectual disabilities, migrants). These organisations were selected because the research institute had previous worked with them and/or because they were partner organisations of the Dutch Alliance for Health literacy. Inclusion criterion was the subjective acknowledgement of the potential participant that (s)he regularly experienced difficulties with accessing and understanding health information (basic levels of health literacy). The organisations gave potential participants easy and understandable information about the study (on the topic of the study, the aim, methods of datacollection and practical aspects), and then asked people whether they would be willing to participate. The aim was to perform three focus groups or—if people would prefer that—individual interviews, with at least 24 participants (≥18 years) in total and/or till data saturation occurred. Data saturation means that no new topics or themes emerged during the interviews, and new interviews added no more insgihts. All respondents received a gift cheque of 15 euro for their participation.

A topic questionnaire was developed for the interviews and focus groups. Topics were: current level of knowledge and attitude about organ and tissue donation in general and the new Organ Donation Act in specific. Information needs were discussed, as well as preferred types of materials and channels for receiving that information. Also some existing materials on the new Organ Donation Act (an animated movie on the website www.donorregister.nl, television commercials and a leaflet that was distributed to every household in the Netherlands) were evaluated. The interviews and focus groups started with an explanation of the study purpose. All participants understood the specific research information and consented to participate in the study. Permission was asked and given to record the session and to use anonymized quotes from the interviews and focus groups. Data collection took place in July and August 2019.

The (group and individual) interviews were audio-recorded, transcribed verbatim, and anonymized. Each transcript was coded by the researchers, using the research questions and topics as a general framework for thematic analysis. All transcripts and codes were discussed in the research team. Since there were no systematic differences in the topics that emerged from the focus groups and the individual interviews, we analysed them together and combined the information in the results.

This study does not fall within the scope of the Dutch Medical Research Involving Human Subjects Act and therefore does not require ethical approval. All respondents participated on a voluntary basis. They gave informed consent to use their answers for scientific research.

In total, 30 respondents (15 men and 15 women; age 18–65) volunteered to participate in the study. Four focus groups were held in different locations (with 3, 4, 6, and 11 participants respectively). Six respondents were unable or did not want to travel and were individually interviewed at their home. Two focus groups (N = 7) and all individually interviewed persons (N = 6) had difficulties with reading and writing and/or understanding health information. One group were migrants who—despite living in the Netherlands for several years—experienced additional problems with reading and understanding Dutch language (N = 11). One focus group were participants with minor intellectual disabilities (N = 6). At the end of the data collection, data saturation occurred and no new themes were identified. In the analysis phase, no specific differences between the different groups of respondents emerged, therefore we decided to present the data for all respondents with LHL together.

Many respondents—about a third–had not heard at all of the new Organ Donation Act. Those who were aware, lacked basic knowledge. Specifically, they did not really know what it entailed nor what was required of them. Most often they had seen or heard a television or radio commercial, but did not actively seek additional information. The different options were unclear for most respondents and they were not actively thinking about which option would match their opinions and sentiments best. If they reflected on the choice, they were inclined to choose option 1 (to be a donor), as they felt more or less obliged to do so. If anything, thinking about death and organ donation made people anxious and uncertain.

Some respondents reported low levels of support for opt-out legislation; they felt angry, because they felt forced by the government to make a decision. Some respondents mentioned that this kind of law was unfair to people with limited (health) literacy skills, since if you do not understand what you have to do and don’t register your personal choice, you will automatically become a donor.

In general, most respondents believed that they lacked specific and practical information to make an informed personal decision.

People with LHL expressed a desire for additional information on several key themes. The five main topics identified were:

(1) Choice options and the differences between them: whether it is an obligation to become an organ donor, what the choice options are and whether you can change your decision at a later point in time;

(3) Role of the partner and/or family: respondents want to know what happens if multiple relatives don’t agree (in case of option 3), or when you are registered as a donor and your partner or relatives oppose to that;

(4) Impact on quality of care: some respondents expressed fears around medical mistrust. For example, they expressed concerns that the care they receive will be negatively affected;

(5) Process of organ donation: some respondents want to know what actually happens after your death, how much time there is before you are taken away, about the medical procedure itself and how the process impacts the funeral and its preparations.

Furthermore most respondents requested practical help in registering their choice through the website, since they have difficulties with or are unable to use computers.

Also help in retrieving and filling out the paper form, which you can also use for registering, was desired.

The content of the information currently used was generally considered too difficult and too abstract to make an informed decision whether or not to be an organ donor. Three materials were specifically discussed with the respondents: an animated movie, television commercials and a folder that was distributed to every household in the Netherlands. In general, the respondents expressed a preference for information in a spoken form, in short movies or animations.

Nevertheless, only two of the participants had seen the animated movie before the focus group session, even though it was broadly distributed by the government. Main advantages of the animated movie were that the information was spoken (not too quick), that much information was presented in a clear way and that the website address and phone number, where more information could be obtained, was visible long enough. Main disadvantages were that people were not aware of these movies, and that they were accessible through a website only. Suggestions for improvements were: 1) show examples of “real” people who tell why they decided to choose for one of the options (narratives) and 2) actually show the process of registering, step-by-step, how one should do that, and 3) make the movie available in different languages.

Most respondents mentioned seeing the television commercials. They remembered that famous Dutch persons played a role in it, and were positive of the diversity of characters in the commercials. They considered the commercials funny, and good for general awareness since television is an accessible medium. However, the main message of the commercials was not clear. They were too short, and didn’t provide enough background information on the registration process. Information was not repeated and also the website address and telephone number were only shown briefly.

A leaflet in general was considered useful because it contains all relevant information and could be used as a reference. However, the content and language level of the leaflet that was distributed in all Dutch households was considered much too difficult: too much text, too long sentences. Words like organs, donation and donor register were difficult to comprehend.

In general, the leaflet was not readable for most respondents, especially those with limited reading skills. Respondents suggested to use more pictures and animations and less text in the leaflet. The fact that a logo of the Dutch government/Ministry of Health was clearly printed on the front of the leaflet raised ambivalent reactions. Though it was considered positive that you know who the sender of the leaflet is, most of the respondents back off if they get mail from the government, either because they know from personal experience that it will be difficult to comprehend, but also because mail from the government usually is bad news (e.g., taxes).

Most respondents suggested to make all materials on organ donation and the new law easier to comprehend in general, so that they could be used universally and no specific materials for people with LHL would have to be developed. However, since they do have additional information needs, some extra communication strategies seem warranted. In general, the respondents preferred simple movies and narratives of other people. An easy to read leaflet would be appreciated. Some respondents also use the Internet as a source of information, but for others this is too difficult.

The respondents stressed the importance of actual personal support, in order to understand and personalise the information, discuss the options and help with the actual registration. They suggested the involvement of organisations and professionals within their personal network, e.g., organisations that support people with intellectual disabilities, neighbourhood teams, schools, health care organisations and providers. Also the social network (family, friends) was considered very important to discuss this complicated topic with.

Many of the people with LHL in this study had not heard at all of the new Organ Donation Act that was to be implemented in the Netherlands. Those who were aware (usually through television or radio commercials) did not know what it entailed nor what was required of them. Participants lacked the information they needed to make an informed personal decision. They expressed a need for more specific information on organ donation and what the new law entailed. The five key themes that emerged were: 1) choice options and the differences between them, 2) eligibility, 3) role of the partner and/or family, 4) impact on quality of care and 5) the process of organ donation. Furthermore they expressed a need for practical help in registering their choice.

Current information on the new Dutch law on organ donation was generally considered too difficult and abstract. The importance of actual personal support was stressed, in order to understand and personalise the information, discuss the options and help with the actual registration. The respondents suggested the involvement of organisations and professionals they already have contact with, like their GP or a social worker. Also the social network (family, friends) was regarded an important source for help and support.

This study shows that people with LHL have more difficulties with understanding and applying health information and making informed choices, which has been demonstrated in many other studies and health contexts (e.g., cancer screening, screening for Down in pregnant women, health decisions in general) [10–16]. People with LHL need information that is easy to understand and relatable. Written information is often considered too difficult to comprehend, and generally too abstract. They are interested in experiences of others and narratives [17]. They also express a need for more practical information, e.g., a step by step explanation of what is to be done. Furthermore, they require more personal support in making health related choices and decisions. Our study confirms these results in the context of organ donation.

To our knowledge, this is the first study on the information needs and preferred information channels of people with LHL regarding organ donation. It is a strength of this qualitative study that representatives from this target group could express their own needs and preferences, since they are often underrepresented in quantitative scientific studies. The participants in our study were recruited through different organisations, each with a focus on a specific subpopulation. This led to a representation of various subgroups of people with LHL in our study (people with reading and writing difficulties, migrants, people with minor intellectual disabilities). Though this is a qualitative study with only 30 participants, we think this diversity and the fact that saturation occurred makes the results generalizable to the larger group of people with LHL. The subjects selected acknowledged their difficulties with regard to understanding health information. This might generate some bias in the sample, as people with LHL who do not acknowledge these difficulties might have different needs. Another limitation of our study is that not in all focus groups, the current information materials were systematically discussed, due to time constraints and different discussion priorities of the participants. However, where it was done, reactions and answers all pointed in the same direction.

Some of the current materials were considered useful, but should be more accessible (e.g., the animated movie) or adapted to the reading level and information needs of people with LHL (e.g., the information leaflet). Including less text, long sentences and difficult, abstract words, and more specific information on the topics that were mentioned by the respondents. Co-creation and pre-testing such a leaflet with representatives from the target group is recommended. As information in spoken form was preferred, the respondents in our study also suggested to make special movies for specific target groups together with them, and distribute them through regular channels of the organisations they already have contact with and access to. All these materials would focus on knowledge, one of the cognitive attributes of health literacy [6]. For actual behaviour to take place, attention for the other (behavioural/operational and affective/conative) attributes is also important [6, 7]. The respondents also stressed that they require practical information and personal support. People with LHL often also have limited computer skills, so seeking information on the Internet, registering one’s choice through a website or finding information on how to get a paper form is a special challenge with which they need support. People also need support in order to tailor the general information on organ donation to their personal situation. This can also help in reducing the anxiety and uncertainty that was expressed by many people in our study. This support can either be provided by professionals they already know (e.g., teachers, case workers or health care providers), by people from their own social network and/or by volunteers who are present in community centres where materials are distributed. It is important that the professionals actually coach the person with LHL in making the decision that best fits their situation and wishes, by providing understandable information on all options (and not only the one they would consider best) and through methods used in shared decision making, such as value elicitation. Since people with LHL heavily rely on persons they trust, it is important to remain neutral with respect to the options and refrain from “advising” in a certain direction.