Evaluation
Study to Research Project to Explore the Enablers and Barriers for Stem Cell and Blood Donation for Mixed Heritage and Ethnic Minority Communities
Evaluation Study to Research Project to Explore the Enablers and Barriers for Stem Cell and Blood Donation for Mixed Heritage and Ethnic Minority Communities
RESEARCH TEAM
Margaret Rioga
Associate Professor Education and Professional Practice
Director of Student Success
Buckinghamshire New University margaret.rioga@bnu.ac.uk
Dr Gulen Addis
Associate Professor Continuing Personal and Professional Development
Buckinghamshire New University gulen.addis@bnu.ac.uk
Dr Simon Lee-Price
Student Achievement & Success Senior Lecturer
Buckinghamshire New University simon.lee-price@bnu.ac.uk
Sarah Mansbridge
Research Assistant
Buckinghamshire New University sarah.mansbridge@bnu.ac.uk
We would like to thank Yaser Martini, Team Margot and Orin Lewis OBE, African Caribbean Leukaemia Trust (ACLT) Charity.
ACKNOWLEDGEMENTS FUNDING
This project is being funded by Buckinghamshire New University Impact Centre and the team have received £5,000.
EXECUTIVE SUMMARY
This study explored public perceptions and behaviours around blood and stem cell donation, revealing a significant gap between awareness and action, particularly in relation to stem cell donation, which remains less understood. While participants generally expressed trust in the NHS, levels of trust varied across ethnic groups, often influenced by cultural beliefs, past trauma, and misinformation.
Key barriers to donation included fear of the process, cultural and religious concerns, and systemic mistrust. Despite these challenges, there is strong potential to increase donation rates through targeted, culturally sensitive outreach and education.
The report recommends a multi-faceted approach to address these barriers, including:
• Targeted education and outreach in community spaces;
• Transparent communication to dispel myths and build trust;
• Culturally sensitive engagement led by community representatives;
• Supportive pre-testing processes to reduce anxiety;
• Strategic use of media and social platforms to amplify positive messages;
• Promotion of a donation culture within families and communities;
• Further research to deepen understanding of motivators and barriers across diverse groups.
By implementing these strategies, stakeholders can foster a more inclusive and informed donation culture, ultimately improving health outcomes for all communities.
In 2023, the Buckinghamshire New University Race Equality Network launched their #Time to Donate Project as the Black History Month campaign. Yaser Martini, Team Margot and Orin Lewis OBE, the African Caribbean Leukaemia Trust (ACLT) Charity shared their personal stories and the growing demand for stem and blood donors for mixed heritage and ethnic minority and mixed heritage communities. This campaign was launched alongside the All-Party Parliamentary Group on Ethnicity Transplantation and Transfusion’s 2023 report, “ Where are our Nation’s Donors? ” The report highlighted a significant disparity in treatment access for mixed heritage and ethnic minority patients, exacerbated by a shortage of donors. In response to the report’s focus on raising awareness about stem and blood donation among the general population, this pilot study aimed to delve deeper into the issue to inform best practices for increasing the number of stem and blood donors.
The literature suggests that stem cell and blood donors are disproportionately low for mixed-heritage and ethnic minority patients (NHS BTR, 2023). One consequence is that donors are not always found, which can result in emotional distress, trauma for the patient, and even death. Despite these concerning outcomes, there remains no clear consensus on the effectiveness of various interventions aimed at educating and empowering mixed-heritage and ethnic minority communities to register for stem cell and blood donation.
Blood and stem cell donation for mixed-heritage and ethnic minority is important as these minorities are underrepresented in most Global North and economically advanced countries. This is an important issue especially where ethnic minority communities differ from the majority population in terms of blood or tissue typing. This is especially the case where type matching is required for effective management of conditions (such as sickle cell and thalassemia), which require regular blood transfusion. People from ethnic minorities are less likely to donate blood or stem cells. In England, of all those registered for blood donation in 2019-2010, only 1.2% were from a black ethnic background and 2.1% from Asian and mixed-ethnic backgrounds (UK HAS, 2023). The picture is similar in other European countries and the USA. For example, the study by Wittock et al. (2021) reported difficulty in recruiting first and second-generation immigrants from non-European countries in Europe. Similarly in the USA 72.1 % of blood donors are white and only are 3.2% African American (Yazer et al., 2017) and the same disproportionate pattern of representation is apparent in stem cell donation. Only 37% of transplant recipients from ethnic minority backgrounds receive the best stem cell donor match from an unrelated donor compared to nearly 72% for white recipients (NHSBT, 2023).
It is important to understand why people from ethnic minority communities are less likely to donate blood or stem cells compared to people from white communities. Ferguson et al. (2022), in a UK study, showed that trust is a major factor in the willingness to donate blood. The study highlighted that individuals who have higher levels of trust in the healthcare system and blood donation processes are more likely to become regular donors. This trust encompasses confidence in the safety, efficacy, and ethical management of the blood donations. The results showed that the highest levels of trust were observed for the NHS Blood and Transplant Service (NHSBT) followed by the NHS generally and in particular individuals. Respondents from Asian ethnic backgrounds had less trust in individuals than white people whilst people from black ethnic backgrounds had less trust in NHSBT and the NHS and its staff than white people. Compared to white people those from mixed ethnic backgrounds had less trust in the NHBST and the NHS and its staff. A systematic review by Spratling and Lawrence (2019) also identified that the most common barriers were medical mistrust and misunderstanding.
A significant motivator for blood donation among ethnic minorities was knowing a blood recipient and identifying with a culture, race, ethnicity and/or religion. Knowing a blood recipient or having someone in their family who had received blood was a common reason for ethnic minority donors to donate blood (Spratling and Lawrence, 2019; France et al., 2022). However, cultural beliefs and values can both be barriers (such as needing to seek family approval for donation or religion beliefs) and motivators for donation (such as donating blood to help their own cultural and ethnic communities). One significant finding from a systematic literature review (Spratling and Lawrence, 2019) was that mistrust by subSaharan African immigrants and African American towards healthcare professionals was due to a shared belief that their blood was unwanted and/or would be discarded later out of fear it carried viruses, such as HIV.
The perceptions of blood donation by young people play a determining role for the future of donation. A study by France et al. (2022) looked at the motivators and barriers for young first-time blood donors in the USA and reported that the most identified motivator was to increase the welfare of others. Health screening, perceived health benefits, and helping the community were rated as motivators by black donors rather than by white donors. Although many in the sub-Saharan African or East or South-East Asian communities were fluent in English, participants believed that having more resources and information in people’s first languages would encourage more people to donate blood (Gahan et al., 2022). Similar issues are present in stem cell donation, with participants mentioning cultural factors (notably religious beliefs), family cohesion, doubts and worries, psychological stress, feeling unsure about donation and mistrust about the allocation of stem cell donations (Switzer et al., 2013; Anthias et al., 2020).
Several studies considered ways to increase blood and stem cell donation in ethnic minority communities. The most common suggestions by the participants were to increase awareness and educate communities (Spratling and Lawrence, 2019; France et al., 2022; Gahan et al. 2022). The educational material should not be excessively scientific and should include images and stories of people from the targeted communities who have donated or received blood products (Gahan et al., 2022). Another suggestion was a need for more diverse representation and greater cross-cultural competency amongst healthcare staff (France et al., 2022). Building trust should be a strategy to increase donor numbers from ethnic minority communities (Ferguson et al., 2022). For stem cell donation, registries should maintain contact with potential donors after recruitment aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs (Anthias et al., 2020).
There are multiple factors that inhibit recruiting participants from ethnic minorities, and this was one of the challenges for this pilot study. The team shared the study questionnaire and opportunity for interviews using several channels - student and staff virtual learning platforms, local charity organisations and faith groups, but despite this, received low participation rates for the questionnaire. Literature suggests that ethnic minority participants experience difficulties related to personal issues (gender, religious language, lack of trust, stigma etc.), practical issues (financial and logistic issues, lack of time), family related issues (family perspective, stigma), healthcare related issues (lack of trust, communication and cultural awareness between staff and participants) and research process related issues, such as limited willingness and enthusiasm, lack of cultural awareness and appropriate material (Waheed et al., 2015).
Similarly, in clinical trials, there is a significant disparity among different population groups in accessing essential research into new treatments. For example, it is known that across the country, ethnic minority groups are under-represented in Alzheimer’s research – despite a prediction by the Alzheimer’s Society that there will be 50,000 patients from ethnic minority communities with dementia by 2026 (UCLH, 2022). A recent study in the UK showed that perceived lack of transparency and concerns about safety were some of the reasons that patients’ willingness to participate in the early phase of clinical trials. Healthcare professionals in this study stated that diversity is not currently considered in all earlyphase clinical trials, but felt that it should always be considered. Location of the trials is another barrier for the patients, as they are mostly in major cities (Chatters et al., 2024).
The aim of this research is to assess the enablers and barriers for stem cell and blood donation for mixed heritage and ethnic minority communities. The literature indicates that stem cell and blood donors are disproportionately low for mixed heritage and ethnic minority patients (NHS BTR, 2023) meaning that donors are not always found which can result in emotional distress, trauma for the patient, and even death. However, despite these stark outcomes, there is no real consensus on the effectiveness of the different interventions to educate and empower mixed heritage and ethnic minority communities to register for stem cell and blood donation.
3. DESCRIPTION OF STUDY PROBLEM
Stem cell and blood donation from mixed heritage and ethnic minority communities is important; however, achieving the desired outcomes is complicated due to a variety of factors. The All-Party Parliamentary Group on Ethnicity Transplantation and Transfusion (2023) recently published the report ‘Where are our Nation’s Donors?’, which advocates for equitable access to treatment for mixed heritage and ethnic minority patients and highlights the challenge of a lack of donor participation affecting patients from mixed heritage and ethnic minority backgrounds. A key recommendation from this report is raising awareness of health inequalities faced by mixed heritage and ethnic minority patients who require an organ or stem cell transplant or a blood transfusion. The report demonstrates the urgency of investigating the enablers and barriers for stem cell and blood donation from mixed heritage and ethnic minority communities.
Evaluation Study to Research Project to Explore the Enablers and Barriers for Stem Cell and Blood Donation for Mixed Heritage and Ethnic Minority Communities
4. STUDY AIMS, OBJECTIVES AND RESEARCH QUESTIONS
4.1 Aim
This is a mixed method study that assesses the enablers and barriers for stem cell and blood donation for mixed-heritage and ethnic minority communities.
4.2
Objectives
1. To explore the enablers for stem cell and blood donation for mixed heritage and ethnic minority communities.
2. To explore the barriers for stem cell and blood donation for mixed heritage and ethnic minority communities.
3. To explore initiatives and opportunities available within local community groups that could support mixed heritage and ethnic minority communities to register for stem cell and blood donation.
4.3 RESEARCH QUESTIONS
1. What would enable mixed-heritage and ethnic minority communities to register for stem cell and blood donation?
2. What barriers do mixed heritage and ethnic minority communities encounter when to registering for stem cell and blood donation?
3. What initiatives/opportunities are available to promote stem cell and blood donation for mixed heritage and ethnic minority communities?
5. METHODOLOGY
This study employs a mixed methods research methodology, integrating both quantitative and qualitative approaches to provide a comprehensive understanding of the research problem. The quantitative component utilises structured surveys to gather numerical data, enabling statistical analysis and generalisation of findings across a larger population. Concurrently, the qualitative component involves in-depth interviews, offering rich, contextual insights into participants’ experiences and perspectives.
5.1 RESEARCH SETTING
The study was conducted at Buckinghamshire New University campuses in High Wycombe, Aylesbury and Uxbridge.
5.2 POPULATION
The study population comprised of mixed heritage and ethnic minority adults aged 18 – 65 years old. The population was mixed heritage and ethnic minority adults who have not registered or given stem cell or blood donation. The aim of the research was to explore the enablers and barriers for this population in contrast to people who are already engaged with stem cell and blood donations, as this latter group are well researched and the knowledge gap in research is for the population under study. The age range is determined by the blood donation age in the United Kingdom.
5.3 DATA COLLECTION
A mixture of quantitative and qualitative data collection methods have been used in this study.
5.3.1
Questionnaires
The questionnaire was developed based on the literature and reviewed by people from the relevant charities to ensure the content and face validity. Based on the feedback the questionnaire was finalised and piloted by five people. The questionnaire consisted of demographic questions followed by questions such as willingness of giving and receiving blood and stem cell donation, health implications, and NHS service provision. The questionnaire included a mixture of closed and open-ended questions to facilitate detailed, narrative responses allowing participants to express and describe their experiences.
The questionnaire was shared via MS Forms and was anonymous. The questionnaire was circulated widely across student and staff virtual learning platforms, local charity organisations and faith groups. The participants’ consent was sought via completion of the form and submission.
5.3.2
Interviews
Interviews were undertaken iteratively with participants guided by a semi-structured guide. The interviews were conducted online via MS Teams to make them accessible for the participants who were healthcare professionals and based at different healthcare sites. The individual interviews were semi-structured interview, which consisted of a set of questions, including follow-up probes and prompts. The interviews were facilitated by the research assistant and were recorded. The interviews lasted up to 45 minutes, allowing participants enough time to contribute to the depth of the discussion.
The Participant Information Sheet informed potential participants that joining the study was voluntary. The participants’ consent was sought verbally before the start of the discussion and participants were asked to complete a consent form. The interview recordings were saved on the Buckinghamshire New University (BNU) drive using a study code for each participant.
5.4 SAMPLE AND SAMPLE SIZE
The study used a criterion purposive sampling approach to recruit mixed heritage and ethnic minority adults based on their knowledge of the phenomenon under study. See Appendix 1 for an explanation of what is meant by mixed heritage and ethnic minority. Participants were sought through student and staff virtual learning platforms, local charity organisations and faith groups.
Questionnaires
26 responses
Interviews 7
5.5
DATA ANALYSIS
Quantitative data was statistically analysed using IBM® SPSS® statistics software. Descriptive statistics, such as percentages, were used to analyse the data.
The qualitative data from the interviews was analysed using thematic analysis (Clarke and Braun, 2017). This method of analysing data highlighted the patterns and themes in the data.
Thematic analysis, as outlined by Howitt (2013), involves systematically identifying, analysing, and reporting patterns (themes) within data, providing a structured approach to capturing key aspects of the research. This method enhances the transparency and reliability of findings by coding data in a way that allows for clear, traceable links between raw data and final themes. By thoroughly documenting these steps, thematic analysis helps ensure that the results are grounded in the data, adding depth and validity to the analysis.
Evaluation Study to Research Project to Explore the Enablers and Barriers for Stem Cell and Blood Donation for Mixed Heritage and Ethnic Minority Communities
5.6 ETHICAL APPROVAL
The study was reviewed and approved by Buckinghamshire New University Research Ethics Committee, reference number: UEP2024FEB02.
6. FINDINGS
6.1 QUESTIONNAIRES
The demographics data of the participants is shown in Table 1.
Table 1: Participants Demographics
When asked for reasons to give blood, the majority of the participants indicated altruistic motives and/or a family member receiving the stem cell or blood transfusion. There were, some negative responses such as: ` I am hesitant to receive because of a recent news story with contaminated blood, but would definitely give` and `may not qualify. `
Figure 3 shows that almost all participants were confident about the care offered by the National Health Service
Figure 3: Participants’ confidence level in NHS care
Count of I am confident about the care offered by NHS Services
Most of the responses were positive such as `I value the NHS. I feel it’s very important can be accessed by all and is free at the point of delivery ` and ` I’m alive because of their care `. However, there were some statements that related to race and waiting times, e.g., ` There was concerned about suboptimal care given to patients of colour `, ` Waiting time is ridiculous `.
All of the participants reported that there are no religious and/or cultural reasons that would influence their decision to make a blood or stem cell donation. However, one participant mentioned that ` Although raising the subject to “elders” in a cultural context may be “taboo”, I personally would donate, as I am aware of the benefits that this has for the broader community!
When asked `What would help you to give blood or stem cell donations? `most of the participants indicated that more information around the subject is need. Also mentioned were a convenient location and easy access.
Seven individual interviews were conducted with participants who met the inclusion criteria (Appendix 2). The interviews were conducted on Microsoft Teams and lasted up to 45 minutes. The findings are presented in a single abbreviated table of themes (see Table 4). Excerpts from participants` narratives of the interviews are used to support the identified themes. The excerpts are assigned P1 to P6 (representing Participant and number) so as to maintain confidentiality. This abbreviation is used at the end of each excerpt to identify the source.
Table 3: Sample Demographics
Table 4: Themes
Themes
Willingness to Donate or Receive Blood and Stem Cells
Managing the Fear: Getting the Donation Story Right
Connecting with the Community
6.3 THEMES FROM THE INTERVIEWS
Three main themes emerged from the analysis of the interviews. The awareness of blood and stem cell donation was limited and for the participants in the study, the need to get more information was triggered by a personal experience like a family member needing a blood donation, working within healthcare and feeling a professional obligation to give back, or by attending a talk within their place of work or local church group. Interestingly, the participants had some awareness of the importance of blood donation but stem cell donation knowledge was limited, with most participants not knowing how to donate stem cells or recognise the need for stem cells. The themes are discussed under the section ‘theme discussion’ in the order presented.
6.3.1 Willingness to Donate or Receive Blood and Stem Cells
All the participants acknowledged a willingness to a receive blood or stem cell donation recognising that in an emergency situation they would not have a choice.
‘so yeah, your blood match and to give out your blood when the person needs the blood. I know that what I would do.’ (P5)
‘… so yeah, your blood match and to give out your blood when the person needs the blood. I know that’s what I would do’ (P6)
P7 reported doing some research on blood donation, as she was studying pre-registration nursing and acknowledged the importance of understanding that the needle pain was short lived and the benefits of blood donation for patients.
‘I thought that it’s like it can be like shot lasting pain for a few minutes with numbness or something like that. But initially it doesn’t like have much effect on us like it is not that much harmful rather than like it will be much more good for the people who are in need of that and who couldn’t find a donor’ (P7)
Similarily, P2 had a background in teaching students about biology and, whilst she had an awareness of the biology and rationale for stem cell donation, this had not motivated her to be a stem donor.
‘I don’t have any kind of experience with any kind of stem donation, except just, there is an academic – I teach biology, so I talk about it to students, but I don’t have a personal experience about it.’ (P2)
All the participants acknowledged knowing about the need for blood donation, but they did not perceive it to be relevant to them: ‘ … just something that has never crossed
my mind’ (P1) until there was a personal connection.
P4 felt that one of the reasons for not pursuing blood or stem cell donation was due to procrastination.
‘It’s a bit of procrastination sometimes, you know, you say I’m going to donate, and then you don’t, don’t really decide to donate...’ (P4)
Similarly, for P6 the procrastination was met with a range of excuses for why he could not donate blood.
‘so, I have to cancel the appointment. I did not donate it because I have headache a whole lot of story. So many people saying that most times when you donate blood.’ (P6)
P4 was a healthcare professional, and she had seen the need for blood donation in her clinical work with patients which triggered her desire to register for blood donation.
‘But just to be a blood donor because obviously I am an organ donor as well. So, I’ve signed up to that. So, it’s just trying to help when you work in healthcare, you want to try and help.’ (P4)
When she had her health screen, it was discovered that she had a sickle cell trait and decided not to proceed with the donation. She did want to help and continued to register for organ donation.
‘I was told that when they tested, they do the pretesting test the blood they said I have a sickle cell trait, so I couldn’t donate any blood so I was refused to donate blood.’ (P4)
Evaluation Study to Research Project to Explore the Enablers and Barriers for Stem Cell and Blood Donation for Mixed Heritage and Ethnic Minority Communities
The Sickle Cell in South London Report (Williams and Maguire, 2021) found that about 1 in 10 people of Caribbean heritage people carry the sickle cell trait. P4 had not known that she had the trait until she had the pretesting for her blood donation.
‘there’s nobody in my family who had ever mentioned sickle cell before was so obviously I’ve gotten that from my father’s bloodline. But I don’t think in those days, people don’t really know you to test for those things. So obviously, me knowing it as an adult...’ (P4)
6.3.2 Managing the Fear: Getting the Donation Story Right
The participants had a general awareness about the need for blood donation but did not have a definitive need to actually donate blood. Stem cell donation was new to the participants and not something that they had considered or knew about. The main trigger for gaining interest in donation was due to personal experiences, either through a family crisis and a need for donation, a health promotion talk at their local church group, or professional experiences. Despite recognising the need for blood and stem cell donation, there were identifed barriers in relation to cultural/religious beliefs and genetic factors. These factors were mainly rooted in fear fuelled by cultural/religious beliefs and mistrust based on past trauma.
6.3.2.1 The Fear of Donating Blood and Stem Cells
P1 became interested in blood donation following a talk at her local church group:
‘But a few weeks ago, we had a black history event at my church and so blood donation… yeah the blood group came up to talk about, you know, to our community about giving blood.’ (P1)
The participants recognised that blood donation was important in the black community, as illustrated below
‘…I guess just hearing from the people that run the blood donation, I guess from a community perspective, you know, for people of colour we don’t give enough blood to support our own communities, you know, there are some particular types of blood that they’re looking for.’ (P1)
‘…I’m also aware that it’s quite deficient in ethnic minority groups. Yeah, and I can be a witness to that, in terms of probably what I read and what I see.’ (P2)
The main barrier to blood donation was the fear of giving blood. The participants shared a real fear about giving blood, yet despite his fear, they recognised that in a crisis situation they would have to give a donation.
‘Last time I spoke to a friend about the blood donation was when my friend’s father was shot …’(P5)
For P3 and P5, this fear of blood was rooted in the worry that the process would be painful and wanting to avoid any situations that would trigger physical pain:
‘Yeah, so the sight of it, and the pain. When you talk about giving blood – as a matter of fact, anything that clinical – it conjures up pain. Yes, and I’m wired to escape pain.’ (P3)
‘I think some people are scared of some people are scared of kind of the small things that I the needle and having even seen seeing the blood as well’ (P5)
P2 felt that the fear was rooted in the mistrust mixed heritage and ethnic minority people have in the healthcare system and previous experiences of receiving poisoned blood.
‘I think it’s a fear of just the system itself. I think, in general, Black people, I’ll talk more about Black people, even though it’s probably similar to Asian people, that they do have fears about anybody piercing into their body. And there’s a lot of mistrust about health systems, and yeah, there is mistrust, there is fear, that, “Oh, they might poison me.” (P2)
P4 reported that the false narrative was grounded in that there was mistrust in not trusting the system to ethically process and use the donation.
‘Yeah, some people are scared. Some people are worried what you’re going to do with it. Is it going to go where it’s supposed to go?’ (P4)
‘Sometimes people are kind of afraid of it, or sometimes people are kind of afraid of what happens after. So maybe the energy level goes down a lot. They lose kind of a lot of blood sugar’ (P5)
P2 had been being diagnosed with anaemia; however, on further reflection, and realising that despite her diagnosis she could still donate, she suspected the real barrier was rooted in fear.
‘I’ve come to a default that I am anaemic, so I shouldn’t really be donating, even though, when you think about it, the body has a way of replicating quicker if you give up something. But, I think, in a weird way, to be honest, I think, as much as I’m in education, I think there is a subconscious fear.’ (P2)
6.3.3 Connecting with the Community
All the participants shared a common understanding that assertive outreach into the community was important for raising awareness about blood and stem cell donation. They felt that the donation needed to happen within the community with transparency and foster trust.
The community was identified as the primary factor influencing the promotion or hindrance of blood and stem cell donation:
‘so, it might be difficult for people who are planning to donate in the future because they are not getting much encouragement from the society’ (P7)
P1 shared that there was a need for education so that the community is aware of the need for donors, but with a targeted approach to reach the high-risk groups were there are limited donors.
‘…to be a bit more targeted to, you know, it is good for these groups of people because research is showing that this set of people here are lacking from receiving these things because we don’t have enough people of colour giving them donations.’ (P1)
‘I think the doctors need to let people know that donating blood have no negative effects because it’s only for me. Now if a doctor should talk to me and say can come and donate, There is no issues’ (P6)
P1 had heard about blood donation at her local church group, but acknowledged that it was also about targeting places people visit, such as GP surgeries and local pharmacies:
‘I think reaching out to those communities through like GP practices. So, what I mean through GP practices is not by putting up a poster on the wall because people don’t, you know, like I say I might cast my eye around but not many people might do that…’ (P1)
P2 felt that it was important to build trust and transparency with community groups and this would be supported by raising awareness about donation with staff that represented the community groups.
‘I think if there can be some sort of transparency and engagement with communities, whereby people who look like them actually are talking about this kind of aspect of donation, and probably bringing some case studies of people who have donated, and how they’ve helped other people, and all of that.’ (P2)
P7 reported that there was a need for transparency to include a detailed overview of the blood/stem cell procedure so that it could dispel the myths and fears.
‘I think we should also be much more aware about what is the process that happens, like how they’re going to take the blood cells from us or like how they are going to give it to the people who are in need of that or much about the equipment, how to use it,….’ (P7)
The participants acknowledged the importance of the media in sharing information about the impact of donation and how it enhances the lives of the donor and patient.
‘they used to, do something like maybe go to a TV channel or a radio station and tell the whole country’. (P6)
‘I’ve been doing a bit of reading and it’s in the news more, recently. I think it’s a good thing. I think that science has given us an opening into how we can preserve life and how we can help stop suffering of others...’ (P3)
‘I think social media, everybody’s on social media, not everybody wants to be on social media, but everybody talk where everybody shares. I’m one of those where I’m sharing links.’ (P4)
P3 and P4 spoke about the importance of community and being part of a group, finding that when member of a group become donors this can propel the rest of the group to also follow the trend.
‘I do hear people talking more about it, and they- It’s in positive terms that people are talking. I’ve heard of, actually, people boasting, actually, that “I’m a donor. I’ve done this and I’m a regular, donating blood.’ (P3)
‘If you have people around you talking about it and you’re part of that group and everything, let’s go and do need some blood and you have that sort of encouragement.’ (P4)
P4 felt that there was need for regular reminders for people to become donors, as this would help those that were procrastinating but willing to become a donor.
‘I suppose in that GP appointment, those health appointments the GP should be asking people, would you like to give some blood? You know what I’m trying to say on regular basis.’ (P4)
She also felt that whilst it was a community responsibility to become donors, this needed to start with the family unit and creating a culture where donation was seen as the norm:
‘… it’s part of the family’s culture in in contributing in that way they’ll do it, they’ll do it. And if it’s going to benefit one of them. If you say you say it’s maybe a young adult and you say, well, if you do need if you need it at some point it’s there you know it’s there for a cousin or a family member or a close friend they might be more inclined.’ (P4)
P7 acknowledged the need for families to socialise blood and stem cell donation, reporting that her parents would not support her donating blood, ‘I don’t think it will be much appreciated in my family if I tell them I want to come into blood for donation or something.’ (P7) due to their family experience of caring for a relative with a blood cancer and worry that donation would have a negative impact on her health.
‘I think it’s like people can live with one kidney as well. But I have heard about people donating one kidney, but they are not able to do like the they were not able to come back to the normal life like they were not able to do the screeners. So, our parents might be thinking like this might be the same with everything that we don’t need.’ (P7)
However, when further explored, P7 felt that this perception could be changed through education but making the information was adapted to the target audience and making use of different types of media:
‘we’ll be having some campaigns from this clinic like some of the doctors or the nurses or some healthcare professionals will come to our school. We’ll explain to us about all these things, or it might be in the church. We have like some gatherings for they will be divided us in small groups’ (P7)
In creating a culture where donors start within families, P3 recognised a need for ‘changing the narrative’, highlighting that individuals may not want to become donors as they are reluctant to pursue something that can make them feel uncomfortable and/or face fears from the past.
‘Probably, it’s a lack of information. Not to mention that the information is out there, can be accessed, but sometimes we would rather push our own narrative, because it makes us feel comfortable and it backs up (Laughter) our inhibitions and our positions at times.’ (P3)
P7 acknowledged learning about blood and stem cell donation at School but felt that the peer conversations about the negative myths and pain resulted in a negative view on donation and there was a need to change this narrative.
‘I think my friends, some of them are aware about all these things because back in school when we had the awareness but we would have our own discussions about , like how terrifying it would be to have your organ donated or how much it would be painful to have your like blood taken so that everyone is so much afraid of having, something taken by a needle or something like that.’ (P7)
P3 and P4 reported a need for a reward for donors so that they could become ambassadors sharing their experiences of donation with the community and enouraging others to sign up.
‘So, find some attractive reward that would probably draw people in. Probably, when people come in for the reward, and they actually do it and they go away, they probably can go away with a different message also. They can be ambassadors.’ (P3)
P6 felt a financial reward may provide an incentive to increase participation rates in blood and stem cell donation.
‘I think for people to agree to donate blood, the hospital or maybe any medical institution like that should, you know, pay them after donating...’ (P6