Study design

This study employed a qualitative and exploratory ethnographic design to comprehensively analyse participants’ opinions and insights on living donation by first rolling out an online questionnaire followed by a focus group [15]. The manuscript was completed and assessed with the consolidated criteria for reporting qualitative research (COREQ-32) checklist for qualitative research [16].

The study setup and execution were preceded and enhanced with public and patient involvement (PPI) by forming an advisory group of three Moroccan-Dutch professionals active in their community [17]. C.Z. selected purposefully the advisory group members based on their active community participation and professional expertise. The group (N = 3) included a 35-year-old female behavioural scientist, a 39-year-old male imam and Islamic theologist, and a 24-year-old male law student and columnist.

The advisory group supported the development of culturally appropriate and comprehensible online questionnaires and distributed them within their networks. They also helped to identify missing codes and interpret themes from the questionnaire data. The group helped recruit the participants for the focus group. The focus group topic list with in-depth questions was co-created with the advisory group. The advisory group was financially compensated for their contributions.

Study setting, population and recruitment

This study was conducted in preparation of a nationwide targeted donor recruitment campaign of Sanquin, Matchis, and NTS. The study took place in the Netherlands, and targeted Dutch individuals who self-identify as Moroccan with or without a citizenship, inviting them to participate by completing a questionnaire or join a focus group. The eligibility criteria for participation were ages 18 to 55 (eligible age for stem cell donation), identifying as Moroccan, and being proficient in Dutch to complete the Dutch online questionnaire. The focus group participants were purposefully recruited to ensure diversity in sex, age and educational background, and diversity in attitudes (positive, negative, ambivalent) towards the topic by asking the persons in advance about their stance. Persons with a medical profession were excluded from participation to prevent bias and steering of opinion in group dynamics. The focus group was held in Dutch in a community cultural centre in Amsterdam, New West.

The online questionnaire

The study gathered participants’ views through an online questionnaire developed using Qualtrics. Initially, the questionnaire was piloted within the researchers’ network and the advisory group to refine its content and format. The questionnaire began with a cover page explaining the study’s purpose, identifying the funding institutes (Sanquin, Matchis, NTS), and defining “living donation” to avoid any confusion with post-mortem donation.

Participants were required to select a consent button before proceeding, ensuring informed agreement to participate. The questionnaire included closed-ended questions to collect demographic data and open-ended questions for participants to share their experiences and opinions in detail (see Supplementary File 1 S1 The online questionnaire). The question framing regarding donation status was based on the registration system and regulations in the Netherlands. Questions about blood and organ donations were in retrospect. Those who are registered as blood donors have typically already donated at least once. In contrast, the Netherlands does not have a registery for living organ donation, so we asked participants about this form of donation in retrospect. For stem cell donation, the focus is on registration because individuals can register as potential donors, but only a small number will ever be matched and asked to donate. Our interest lied in those who are registered for the diversity of the donor database, rather than those who have already donated.

The questionnaire link and accompanying information were shared via WhatsApp and direct messaging on social media platforms like X, Instagram, and LinkedIn to reach the target population. Potential participants were encouraged to forward the questionnaire to their networks to broaden their reach. Invitations to participate in focus groups were distributed through similar channels.

Focus group

One focus group was conducted with eight participants (four men and four women) to gain in-depth insights, perspectives, and opinions from the participants, complementing the questionnaire. The online questionnaire results informed the focus group guide, probing questions and topics for the focus groups in collaboration with the advisory group. The session began with general introductions and discussions on the willingness to donate blood, stem cells, and organs during life. C.Z. facilitated the discussions in Dutch and took field notes. C.Z. had no relationships with any of the participants. Y.M., B.E., and S.J. supported C.Z. for additional in-depth questions. The focus group session took two hours and data saturation was achieved when all the topics were discussed, the focus group fully elaborated on their views and no more questions for clarification arose. The discussion was recorded using Philips voice tracer DVT2050, transferred to an MP3 file and secured for data safety. The recordings were transcribed using Amber Script and manually corrected by C.Z. for analysis, after which the recordings were deleted. The focus group participants received financial compensation for their collaboration and did not receive the transcripts for comments.

Data analysis

The questionnaires remained online until data saturation was reached, defined as the point where no new themes or insights emerged responses [18]. Incomplete questionnaires, such as those without answers to open-ended questions or containing responses like ‘none’ or ‘not applicable,’ were excluded from the analysis. Closed questions were analysed using descriptive statistics, while free-text responses and focus group input were subjected to thematic analysis following the six-step plan of Kiger and Varpio [19]. This process involved familiarising with the data, coding key segments, identifying and refining themes, and defining and naming themes. The questionnaire responses and focus group transcripts were anonymised and analysed inductively, with themes organised into broader categories addressing blood, stem cells, and organs. Participant quotes were selected to illustrate key themes and translated into English for reporting. The translations were done by C.Z. and validated by A.N.K. who is also an English language academic editor and further verified by other co-authors. Thematic analysis was not conducted on information needs due to limited generated data, as responses were brief, repetitive, or lacked variation. Instead, the data was summarised narratively to ensure accurate representation and inclusion in the analysis.

The analysis was conducted by C.Z. and reviewed by A.N.K., with any discrepancies resolved through consensus and consultation with the advisory group. The advisory group also ensured completeness by reviewing for missing codes or themes and verifying cultural accuracy in the interpretation of findings.

Researcher reflectivity and positionality

C.Z. and A.N.K., both women of Moroccan descent who were born and grown up in the Netherlands’ multicultural environment, led the analysis and interpretation of the data in this study. They are both native Dutch and native Moroccan-Arabic speakers and fully proficient in English. C.Z. and A.N.K. have both strong cultural competence and awareness in relation to the study population because they’re part of the Moroccan-Dutch population. Their research roles, combined with their extensive experience and training in qualitative research, particularly with ethnic minority groups, brought valuable insights. However, their professional backgrounds and personal experiences were also considered potential influences on their perspectives. C.Z., a public health researcher, conducted the focus group discussions with support from Y.M., B.E., and S.J., affiliated with a donor registry or collection institution. A.N.K., a behavioural researcher, contributed significantly to data interpretation. C.Z. had professional ties with the advisory group.

Statement of ethics

Questionnaire output

We received 125 completed questionnaires within 18 hours, with data saturation being achieved by the 80th response, meaning no new themes, patterns, or insights emerged after that point. We chose to include all 125 responses since this was the total number collected at the time, and we did not want to discard any potentially valuable data. This ensured that the dataset was as comprehensive as possible, despite saturation being reached earlier. Six questionnaires were excluded: not of Moroccan descent, > 55 years old, and answering ‘none’ to all open-ended questions. Thus, 119 questionnaires underwent thematic analysis. Table 1 presents the participant characteristics, and Table 2 provides details about the focus groups.

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Table 1. Questionnaire response overview and characteristics.

https://doi.org/10.1371/journal.pone.0328212.t001

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Table 2. Focus group participant characteristics.

https://doi.org/10.1371/journal.pone.0328212.t002

Themes

Ten key themes emerged from the thematic analysis of the written responses. Given the interconnected nature and interpretation of the data, some responses could be classified under multiple themes, resulting in potential overlap. However, our thematic analysis intentionally separates these categories to capture how these barriers manifest and influence different aspects of donation behaviour. By maintaining these distinct categories, we provide a more comprehensive understanding of how various barriers interact with specific stages of the donation decision-making process. Table 3 presents these themes, their conceptualisation, and their occurrence across different tissue types.

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Table 3. Overview of overarching themes per types of donation.

https://doi.org/10.1371/journal.pone.0328212.t003

Awareness of needs

This theme highlights the participants’ identified recognition and awareness of the importance of living donations. Several respondents acknowledged the need for living donors. Some were familiar with the need for sufficient blood and stem cell donors, specifically for the Moroccan population, and the need for ethnic matching. The need for sufficient organs was not mentioned in the questionnaire output. Except for one participant (V2-S), the focus group participants were unfamiliar with shortages of living donors, ethnicity-based shortages, and the need for a diverse donor pool. Only two focus group participants (V2-S, V3-M) knew of blood shortages, having experienced blood donation within the family or learned from Sanquin. Those unaware believed that the collection institutes needed to communicate the shortages actively and emphasise the importance of ethnic matching to increase donation willingness.

“The difference here is that it is rarer to find a suitable match, and ethnic background plays a significant role. I was once told that in the Netherlands, there is less than a 1 in 1000 chance that someone with a Moroccan background will find a match if they need a stem cell donation.” Questionnaire participant, man, 25 years old.

Information and knowledge

This theme focuses on information and knowledge gaps related to living donation. The questionnaire revealed an overall knowledge gap on living donation which was related to donation hesitance. The responses showed that multiple respondents were unaware of the possibility of stem cell donation. Regarding living organ donation, lack of knowledge about living organ donations and potential lifelong consequences contributed to their hesitancy. The focus group mentioned that while blood donation is well-known, shortages and the need for matching are not. Participants’ willingness depended on knowledge availability, with many questions about stem cells, registration, donation, and the importance. More awareness of shortages, matching needs, procedures, and risks was mentioned as necessary. The focus group elaborated on the need for more information on matching criteria and post-donation health impacts before considering living organ donation.

“Start with what stem cells are. (...) There is a significant lack of knowledge. If we start thinking now about how to register, that’s step 15, jumping ahead. Step 1 is understanding what a stem cell is.” Focus group participant, M1-Y.

Donation process

This theme focuses on the organisational, practical and procedural aspects of the donation process. The questionnaire indicated that participants needed familiarity with the donation process, particularly regarding stem cell and living organ donation. They described the registration and potential donation process as administratively burdensome, citing insufficient time and opportunities to understand the procedures. Perceived administrative hurdles and registration costs for stem cells beyond a certain age were mentioned as barriers. Concerns included donor eligibility, potential physical impacts, and recipient outcomes, particularly with bone marrow punctures in stem cell donation. Participants in the focus group also expressed unfamiliarity with living donation procedures, comparing them with post-mortem protocols. They raised inquiries about donation prerequisites, registration procedures, and sources of reliable information as a necessity to consider their donorship. Additionally, they sought clarification on tissue and organ handling, implications of shortages, and impacts on the donors. For living organ donation, questions centred around prioritisation on waiting lists, lifelong dialysis, and logistical aspects of registration and how potential donors are connected to patients in need. The focus group emphasised that perceived barriers to donor registration must be addressed before considering living donation.

“Although it seems like an exciting procedure to me. From the top of my head, isn’t this [stem cell donation] done with a spinal tap? If so, no way Jose.” Questionnaire participant, man, 32 years old.

Cues to action

Questionnaire responses revealed that a lack of consideration, thought, or discussion was the reason for not considering donation. Many participants had not pondered donation due to a lack of exposure and awareness and desired more cues to action. The focus group emphasised the necessity for increased community outreach on living donation. Participants highlighted that raising awareness stimulates looking up information, contemplation, and decision-making. They stressed the importance of highlighting donor shortages to underscore the urgency of transplantation needs. Motivational factors were identified as catalysts for action, such as community discussions, educational readings on living donation, and considering registration. Similarly, the Dutch national campaign following the post-mortem Dutch Donor Law prompted widespread community discussions and decisions about donor status. The group suggested that similar campaigns are needed to encourage community dialogues about blood and stem cell donations.

“Until someone in your surroundings becomes ill with leukaemia or sickle cell disease or something similar, and there is suddenly a demand for it [blood]. Then people start to look into it, and you suddenly realize how few people there are from your background, your ethnic background, with stem cells, for example. And then, yes, it suddenly becomes real.” Focus group participant V1-S. 

Attitude

The questionnaire output attitude towards living donation varied per donation type, with an objection-free positive attitude towards blood. The attitude towards stem cell and living organ donation could be described as more hesitant due to unfamiliarity and an unwillingness to donate to strangers. For living organ donation, the responses showed that participants were more willing to donate a liver piece due to its regenerative nature than a kidney. The attitude responses from the questionnaire were similar to those of the focus group. The participants differed in their attitudes towards stem cell donation, which strongly depended on their available knowledge of the subject. Familiarity with stem cell donation led to a more positive attitude and willingness to consider registration, while unfamiliarity was a reason for hesitation. Some participants noticed that parental attitudes towards stem cell donation and registration also influenced participants’ views due to the ethical questions involved in this subject. In general, the attitude towards living organ donation was negative unless the recipient was a relative.

"I had an Islamic upbringing, and good deeds were always stimulated, but donation was always a bit of a taboo. We never discussed it at home until it became a relevant topic [because of the Dutch Donor Law].” Focus group participant M2-M.

Religious legitimacy

Religion, in this case Islam, could be both a facilitating and hindering factor for living donation, which was visible in both the questionnaire and focus group responses. Some questionnaire participants questioned the permissibility of living donation under Islam and needed information about Islamic jurisprudence. Others were religiously motivated and mentioned their willingness to donate ‘for God’s’ sake. Some cited religious concerns about the sanctity of the body in the questionnaire as a potential barrier. Islamic teachings influenced these individuals’ willingness to donate by guiding their decisions; if Islam prohibited an action, they would refrain from it, whereas if it permitted the action, it removed a potential barrier to donation. The focus group participants linked their willingness to be living donors to Islamic permissibility. Five out of eight affirmed the acceptance of blood donation in Islam. They acknowledged varying views on the Islamic permissibility of living donation. The Islamic stance on stem cell donation was unknown within the group, but participants saw no religious barrier if permissible. Living organ donation’s religious considerations were irrelevant to the group. They mentioned that in this case the relationship with the recipient is important (see theme Relationship with recipient). Participant V2-S doubted the notion that saving a life through living organ donation could be impermissible. These responses reflect the diversity of interpretations within Islamic jurisprudence and highlight the participants’ reflections on the religious and ethical implications of donation.

“Because Allah says in the Quran, if you save one life, it is as if you saved humanity.” Focus group participant V1-S.

Health challenges

The questionnaire output provided an extensive list of prevalent health problems such as anaemia, fainting, overweight, diabetes, low blood values, hypotension, hypertension, chronic diseases, and medication as perceived reasons for not being eligible as a blood donor. When health challenges were mentioned for stem cell donation, it was from participants who had tried to become a donor but did not meet the medical eligibility criteria. During the focus group, two participants (V2-S and M3-N) shared that experiencing pain and having iron deficiency were their health-related barriers to becoming a blood donor. No other prevalent health barriers to stem cell or living organ donation were mentioned, especially since the participants were unfamiliar with the conditions.

“I wanted to become a donor. But because I have vitamin D and iron deficiency, I was not eligible.” Questionnaire participant, woman, 34 years old.

Fear

For all living donations, the answers to the questionnaire revealed fear of needles, surgery, blood, anxiety disorders or panic attacks. Fear significantly hindered the willingness to register for stem cell donation, which was related to possible bone marrow punctures. For living organ donation, fear was related to challenges after donation and implications of living with one kidney. There was no fear for blood donation as a topic in itself, but rather for the necessary use of needles. The focus group shared the same fear of pain and elaborated per tissue type. One focus group participant (V3-M) feared needles but overcame it by weighing the pros and cons for blood donation. Others did not fear blood donation. The focus group participants were reluctant about bone marrow puncture but more willing to donate stem cells through peripheral blood as it was considered less fear-inducing. The willingness to donate stem cells depended on the recipient of the cells, mentioning that their desire to overcome their fears and pain was greater for immediate family. For living organ donation, fear of health implications, consequences of donation and failure in transplantation were mentioned as barriers.

“If it hurts, I don’t want to do it. But if it can be done through blood, then I will.” Questionnaire participant, man, 33 years old.

Social cohesion and solidarity

According to the questionnaire and the focus group, the 2023 earthquake in Morocco served as a powerful motivator for (disaster-driven) blood donations. Participants noted that seeing the King of Morocco and other public figures donating blood after the earthquake demonstrated social cohesion and solidarity within their community. This public display of support highlighted a sense of collective responsibility, reinforcing a shared cultural identity and sense of duty to help one another in times of need and served as a trigger for a communal call to action. Additionally, reciprocity, the idea of giving in anticipation of a potential future need for blood or stem cells for oneself, also encouraged donation. Many participants felt that their contributions to the donor pool today could lead to future assistance for themselves or their families, underscoring a form of “mutual aid.” The willingness to donate an organ during life was closely linked to the donor’s relationship with the recipient, with strong preferences to donate to close family members.

The focus group added that Islamic teachings endorse blood donation as a good deed. Religion here not only motivates individual actions but also binds the community, reinforcing solidarity through the view that donation aligns with the principles of charity in Islam. Regarding living organ donation, in line with the responses from the questionnaire, participants expressed a reluctance to donate an organ to strangers. This hesitation stemmed from concerns about personal health risks and undergoing surgery for unknown individuals. Furthermore, there was an underlying fear of donating to ‘the wrong person’. A wrong person was described as a criminal of any sort or someone who does not share the same values or beliefs. It led to the question whether or not that person ‘deserves’ their organs.

“Because there are too few donors! And I think it’s [stem cells] important that this helps children, but also adults!” Questionnaire participant, woman, 36 years old.

Relationship with the recipient

The questionnaire data showed that the emotional connection with the recipient strongly influenced the willingness to donate stem cells or organs during life. In contrast, there was hesitation in donating to unfamiliar individuals due to concerns about compatibility and potential outcomes. The focus group discussion echoed the importance of the relationship with the potential receiver of the organ or stem cells. Participants emphasised a willingness to donate to a mother or child, prioritising familial bonds over religious considerations. Emotional closeness with the recipient was a significant factor. Participants showed reluctance to donate organs to strangers due to personal risk concerns, but they accepted these risks when considering their mothers as recipients.

“For my mother, I would accept the pain and consequences. But I would have to reconsider for my neighbour or uncle with whom I have no emotional connection.” Focus group participant, M2-M.

Campaigns and communication

The participants emphasized that providing clear communication and information about the importance of ethnic matching in tissues donation can create unity within the community, as it highlights a shared responsibility to meet specific health needs. They wanted information on shortages, matching procedures, and the lifesaving impact of donations. Participants sought insights into the consequences of shortages, pros and cons for donors, dispelling potential fears arising from ignorance, and access to expert advice or online resources.

Clear information on Islamic regulations regarding living donation, indicating its religious legitimacy, was a collective information need. Active endorsements from Islamic authorities were deemed crucial. According to the participants, entities like mosque unions should widely endorse messages representing various theologians, mosques, and groups and disseminate them through their networks. Participants suggested that this endorsement should be integral to organisational campaign efforts.

Trust in the entities communicating about donations was considered vital. The participants emphasized the importance of a ‘triangular communication approach,’ which they described as involving three key groups: medical institutions for providing accurate health information, Islamic theologians for religious guidance, and patients in need of donations to share their personal experiences and emotional perspectives. By incorporating these diverse voices, participants believed this approach would foster greater trust and confidence in the donation process. The participants stressed the influential role of key figures and role models, known for their credibility and community engagement. The group acknowledged the effectiveness of key figures in the community, such as well-known imams or Islamic organizations, famous persons within the community who are perceived as reliable information dissemination and raising awareness, in raising awareness about important issues and believed their involvement would enhance trust in donation information. Additionally, there was a suggestion to find a versatile spokesperson, such as an expert from the community who can function as a bridge between all relevant stakeholders to inform the community about living donation effectively.

Participants expressed a need for information through online channels like social media, Google, websites, or informative emails. There was a demand for active communication, including written materials, general media, and educational efforts. Acknowledging the labour intensity of education on an individual or neighbourhood level, participants suggested communication at large gatherings, such as Friday or Eid prayers, for a wider reach. The ‘train-the-trainer’ concept was emphasised to ease the burden on organisations. The participants added that communication should be in simple and understandable Dutch, void of academic jargon, and resonating with the target audience. For older audiences, Moroccan-Arabic or Tamazight could be used orally. Word-of-mouth was mentioned as a powerful and effective communication tool.

Strength and limitation

The main strength of this study is its sequential qualitative data collection method. The online questionnaire gathered data from a large sample, providing a comprehensive overview of opinions on living donation. Key issues and patterns identified in the questionnaire were explored in-depth during the focus group, resulting in a thorough understanding of the study population’s knowledge, views and needs. Our PPI advisory board contributed to sound interpretation of data. Previous studies have shown that involving PPI improves the usefulness of the data and fits the population’s perspective [41,42]. Additionally, this study provided a comprehensive overview of barriers, facilitators, and information needed to tailor recruitment efforts for more living blood, stem cell and organ donors.

The primary limitation was a potential sampling bias for the questionnaire participants and focus group. The high percentage of respondents who reported being blood or stem cell donors exceeds the national average, indicating a possible bias [5–8]. Furthermore, persons not interested or with negative attitudes towards donation likely did not participate, leading to missing negative attitude responses. The first two authors’ Moroccan-Islamic background provided valuable insights for data interpretation but could introduce bias by approaching the data based on readily available knowledge. To counteract this bias, the ethnically diverse research team critically appraised the output. The questionnaire and focus groups were conducted in Dutch, so opinions from those not proficient in the language might have been missed. Therefore, the discussion leader actively asked about the perceptions of the participants’ families and circles to obtain views on social norms regarding living donations [43].