Bone marrow donors: experience among adolescents and young adults

Abstract

Objective

Recent treatment advancements have improved the survival rates of patients with hematological malignancies, making hematopoietic stem cell transplantation (HSCT) a key curative option. However, despite ongoing awareness efforts, the number of bone marrow donor registrations has not significantly increased over time, possibly because of the impact of recent infectious disease outbreaks. This may affect patients requiring allogeneic HSCT. This study explored the experiences of adolescent and young adult (AYA) bone marrow donors.

Patient and Methods

Using a qualitative descriptive research design, we conducted semi-structured interviews with six AYA individuals who had experience as bone marrow donors. The study was approved by the institutional ethics committee (022-03), and no conflicts of interest were disclosed.

Results

Seven categories and 23 subcategories were identified in this analysis. Participants reported a strong sense of duty as donors, but faced challenges such as family opposition, lack of understanding from employers, and concerns about the impact on work and family life. Despite these difficulties, donors often experienced personal growth and fulfillment through donation.

Conclusion

Nurses should recognize AYA bone marrow donors as a population that requires support, and consider strategies to increase the understanding and registration among this crucial demographic group.

Introduction

Current status of bone marrow donors in Japan

Recent advancements in treatment have improved survival rates for patients with hematological malignancies such as leukemia and lymphoma^{1, 2)}. However, despite these improvements, the relapse rate within 3 years remains high, and the 5- and 10-year survival rates are lower than those for other cancers³⁾. Hematopoietic stem cell transplantation (HSCT) is a curative approach that often requires a matched donor for allogeneic HSCT. When a match is not available from within the family, patients must rely on unrelated donors. The matching rate of human leukocyte antigen (HLA) types is crucial for HSCT success; it affects treatment outcomes, graft-versus-host disease (GVHD), and survival rates⁴⁾. Therefore, having a large pool of registered donors is vital to determine the best match for each patient. Despite ongoing awareness efforts, the number of registered bone marrow donors has not significantly increased over time⁵⁾. The recent spread of infectious diseases has led to a decline in donor registration, potentially affecting patients requiring allogeneic HSCT. The adolescent and young adult (AYA) generation, aged 15–39 years, has particularly low registration rates, with concerns about academic and work impacts being a significant factor⁶⁾. Therefore, HSCT relies heavily on allogeneic bone marrow donors, a trend that is likely to continue. While HSCT depends on voluntary donations, support for donors is often insufficient as medical professionals tend to focus on recipients.

Bone marrow donors in Japan and abroad

Search methodology

We used the Ichushi Web database to search the domestic literature for articles published between 1998 and 2022. This study focused on bone marrow donors in Japan, and used keywords such as “bone marrow donors” or “peripheral blood stem cell donors” combined with keywords related to physical, psychological, and social issues: “experience”, “perception”, “narrative”, “health-related quality of life (HRQOL)”, “physical problems”, “psychological problems”, and “social problems”. We searched for “original articles”. Furthermore, we used PubMed’s Medical Subject Headings (MeSH) database to search the international literature for English articles published between 1998 and 2022. We combined the keywords “bone marrow donors” or “bone marrow donation” or “peripheral blood stem cell donors” or “peripheral blood stem cell donation” with terms like “health-related quality of life (HRQOL)”, “physical”, “psychological”, “social support”, “psychosocial”, “experience”, “narrative”, “perceptions”, “perspectives”, and “process”, with a focus on “journal articles” and “research”. This search yielded 26 international and two domestic articles. We excluded studies involving participants under 18 years of age, which is the eligibility age for bone marrow donors in Japan and abroad.

Article selection method

▪ First stage: literature review

In the first stage, fully published articles that included the keywords in their titles or abstracts were selected. This resulted in the identification of two domestic and 20 international articles.

▪ Second stage: quality assessment

The quality of the selected studies was evaluated using Crombie’s critical appraisal method⁷⁾. We assessed whether the content aligned with the research objectives, and member checks were conducted among clinical practitioners and nursing researchers with expertise in cancer care and stem cell transplantation. One domestic article and 13 international articles were deemed suitable. After completion of this process, 14 articles were selected for the final review.

Physical challenges faced by bone marrow donors

A review of the domestic and international literature revealed that most studies used questionnaire surveys based on various research designs; these included prospective and retrospective studies and randomized controlled trials. Many bone marrow donors experienced physical pain and discomfort during stem cell collection, with the severity and frequency varying depending on the method used. However, these symptoms generally subsided over time.

Donors often reported pain at the collection site and lower back pain, accompanied by reduced physical function^8,9,10). Female donors were more concerned about physical symptoms than male donors, indicating a gender difference^{8, 11)}. Donors who provided bone marrow stem cells reported more physical challenges such as walking difficulties, a sense of heaviness in the head, and puncture pain, than those who provided peripheral blood stem cells^10,11,12). Additionally, bone marrow donors had significantly lower HRQOL scores and experience more severe adverse events than those who underwent peripheral blood stem cell collection^{13, 14)}. Differences were also reported in the degree and duration of pain between related and unrelated donors, with related donors experiencing significantly greater physical discomfort^{15, 16)}.

However, some studies using related donors¹⁷⁾ reported that the bone marrow collection process was easier than expected.

Psychological and social issues faced by bone marrow donors

Many donors expressed concerns about the long-term impact on their health after bone marrow donation^{11, 18)} and felt stressed due to their responsibility and sense of duty as a donor¹⁷⁾. Related donors were more likely to exhibit depressive tendencies than unrelated donors^{15, 16)} and showed reluctance to donate stem cells again¹⁹⁾. In contrast, bone marrow donors often had greater self-esteem, happiness, and life satisfaction before and after donation^{12, 20)}, with their mental health status and health perceptions scoring higher than normal¹⁸⁾. Furthermore, donors tended to view their donation experiences positively¹⁸⁾. Social issues identified included inadequate explanations and technical skills during bone marrow collection, and inadequate health checkups and follow-up care after donation¹¹⁾. Cultural factors also played a role, with some families expressing discomfort with the idea of transplanting cells from others, leading to limited progress in unrelated donor transplantations in certain regions²¹⁾.

Given these findings, this study aimed to clarify the experiences of AYA bone marrow donors, deepen our understanding of this generation, and provide insights into nursing practice. The ultimate goal was to explore strategies to promote bone marrow donor registration.

Patients and Methods

Research design

A qualitative descriptive research design.

Definition of operational terms

The AYA generation refers to adolescents and young adults aged 15–39 years. This generation undergoes significant physical, psychological, and social changes and experiences major life transitions such as pursuing higher education, starting a career, getting married, and raising children. In this study, the AYA generation was not strictly limited to 39 years but also included individuals in their early 40s.

Research participants

The following two criteria were established for the selection of research participants:

▪ Participants must have experience as bone marrow donors

▪ Participants must have been in the AYA generation at the time of donation

Data collection

Data were collected between April and August 2023. Participants who consented to participate were interviewed using a semi-structured interview guide. The interviews focused on eliciting free responses regarding memorable experiences, thoughts about recipients, and overall donor experiences. Each interview lasted approximately 60 min and was conducted using a nondirective interviewing technique, as far as possible, to encourage participants to speak freely. The researchers made efforts to ensure that the participants’ thoughts were accurately captured by confirming their content during the interviews and asking contextually relevant questions to better understand the narratives. The interviews were recorded using a voice recorder, with the participants’ permission. Field notes were taken to capture nonverbal cues, such as facial expressions and voice tones; these were included in the transcription.

Data analysis

This study employed an analytical method based on those of Sandelowski²²⁾ and Elo and Kyngas²³⁾ which aimed to minimize inference and provide a straightforward description while remaining as true to the participants’ narratives as possible. The analysis was conducted according to the following steps.

▪ The researchers repeatedly read the participants’ narratives until they were fully understood, making a conscious effort to set aside preconceptions and accept everything they shared.

▪ Statements about why the participants decided to become bone marrow donors, what left a lasting impression on them, what support they needed, what future support might be necessary, and their thoughts on the recipients were extracted verbatim from their original context. During this process, the researchers repeatedly revisited the data to ensure that the interpretations were accurate and remained closely aligned with the participants’ narratives.

▪ The extracted contexts were coded using the characteristic parts of the participants’ narratives related to their experiences as bone marrow donors, and the research questions were aligned with the codes.

▪ The codes derived from each participant’s analysis were aggregated based on their similarities and differences, resulting in the extraction of [subcategories] and{categories}.

Research credibility

To ensure credibility, this study adhered to the four criteria proposed by Lincoln and Guba²⁴⁾. The primary researcher, who served as the measurement instrument, regularly received supervision to clarify their perspectives and recognize and correct any biases or tendencies during interviews and data interpretation. Throughout the analysis process, raw data and the researcher’s interpretations were shared with experts, and the analysis was repeatedly reconstructed after supervision had been received, to enhance its credibility.

Ethical considerations

This study was approved by the Research Ethics Committee of the researchers’ affiliated institution (Approval Number: 022-03). In accordance with the Ethical Guidelines for Life Sciences and Medical Research Involving Human Subjects²⁵⁾ the participants were informed verbally and in writing that their participation was voluntary, that they could withdraw at any time without facing any disadvantage, and that efforts would be made to protect their personal information. Written informed consent was obtained from all participants. The authors had no conflicts of interest to declare.

Results

Six participants were included in this analysis. The average interview duration was 72.5 min (range, 52–90 min) per participant.

Participant demographics (Table 1)

Table 1. Basic attributes of the study participants.

ID	Present age (years)	Age at time of donation (years)	Gender	Family composition	Occupation	Bone marrow sourcing method	Bone marrow providing first	Number of times of providing bone marrow (times)
A	52	40	Female	Mother	Office worker	Peripheral blood	Related	1
B	42	30/32	Male	Wife & 1 child	Office worker	Bone marrow/Bone marrow	Unrelated	2
C	47	44	Male	Wife & 2 children	Education professionals	Peripheral blood	Related	1
D	38	36	Male	Wife & 3 children	Medical profession	Bone marrow	Unrelated	1
E	52	30	Male	Wife & 2 children	Professional researcher	Bone marrow	Unrelated	1
F	54	28/32	Male	Wife & 3 children	Medical profession	Bone marrow	Unrelated	2

The average age of the participants was 46.2 ± 6.2 years, with the average age at the time of stem cell donation being 35.0 ± 4.5 years old. The group comprised five men and one woman. Regarding the method of bone marrow collection, two participants underwent peripheral blood stem cell collection, and four underwent bone marrow collection. Four participants were non-related donors and two were related donors. Two donors had donated twice.

Bone marrow donors: experience among the adolescent and young adult generation (Table 2)

Table 2. Bone marrow donor: experience among adolescent and young adult (AYA) generations (n=6).

Main categories (7)	Subcategories (23)
A sense of duty and resolve as a bone marrow donor
	• I have no hesitation about becoming a bone marrow donor
	• I want to be of help to someone
	• I have no doubts about becoming a bone marrow donor
	• I feel a sense of responsibility in becoming a bone marrow donor
	• I am becoming part of someone’s life and a part of them
	• Becoming a bone marrow donor holds personal meaning for me
	• I am needed as a bone marrow donor
Physical and psychological suffering, along with feelings of guilt, associated with hospitalization
	• Physical pain related to examinations and medical procedures
	• Anxiety concerning examinations and medical procedures
	• Feelings of guilt and loneliness associated with being hospitalized while healthy
	• Lack of consideration from healthcare providers
Society’s lack of awareness about bone marrow donors
	• I would like to broaden society’s understanding of bone marrow donors
	• I would like to increase awareness about bone marrow banks and donation methods
Concerns about the potential negative impact on work and family life
	• I had to take time off work
	• My becoming a bone marrow donor is a significant event for my family
Conflicts arising from differences in bone marrow donation methods
	• The hopes and anxieties that related donors have
	• The prayers and concerns that unrelated donors have for the recipient’s recovery after transplantation
The inflexibility of testing procedures and systems
	• It was difficult to coordinate the schedule and location for donor testing
	• There was limited support provided for bone marrow donors and their families
The fulfillment and self-evident truth of personal growth
	• The experience of being a bone marrow donor has been a valuable source of personal growth
	• I am proud to have become a bone marrow donor
	• I am grateful for the opportunity to have become a bone marrow donor
	• The experience of being a bone marrow donor is not considered exceptional

Qualitative inductive analysis resulted in the extraction of “189 codes”, [23 subcategories], and {7 categories}. Participant narratives are written in italics, subcategories in [ ], and categories in { }. The supplementary content added by the researcher is shown in parentheses.

{A sense of duty and resolve as a bone marrow donor}

This category consisted of seven subcategories: [I have no hesitation about becoming a bone marrow donor], [ I want to be of help to someone], [I have no doubts about becoming a bone marrow donor], [I feel a sense of responsibility in becoming a bone marrow donor], [I am becoming part of someone’s life and a part of them], [Becoming a bone marrow donor holds personal meaning for me], and [I am needed as a bone marrow donor]. The participants expressed happiness in being able to help someone and in having the opportunity to become a bone marrow donor. They spoke about the significance that they attributed to becoming a donor and their thoughts on the matter.

“I had no hesitation at all about becoming a bone marrow donor. If there was something I could offer, I wanted it to be used. That feeling was always inside me”. (ID: A)

“I think the desire to help others has always been there, probably since childhood. When I look at my old essays, I find that I wrote about such things”. (ID: D)

“Even if there was no donor leave, I think my intention to become a donor would not have changed, even if it meant inconveniencing my workplace”. (ID: C)

“Until I was actually hospitalized, I was more concerned with the responsibility, like being careful not to catch a cold so I wouldn’t be unable to donate”. (ID: F)

“With every bone marrow donation, there’s a patient’s life at stake, and I feel like I’ve really become a part of that person’s life, and that it’s become a part of my life as well”. (ID: B)

“In the past, I caused trouble for others, and this may be an inappropriate way to put it from the recipient’s perspective, but for me, I think it was a way of atoning. I also heard about a friend’s illness around that time, and I wondered if this was a sign that I should step up”. (ID: D)

“I could have declined the donor offer at any time, but receiving two notifications in a row made me feel that I was needed”. (ID: D)

{Physical and psychological suffering, along with feelings of guilt, associated with hospitalization}

This category consisted of four subcategories: [Physical pain related to examinations and medical procedures], [Anxiety concerning examinations and medical procedures], [Feelings of guilt and loneliness associated with being hospitalized while healthy], and [Lack of consideration from healthcare providers]. In this section, the participants spoke about the physical and psychological pain associated with hospitalization and the feelings they experienced while being hospitalized while healthy.

“When I thought I could just get out of bed and say, ‘I’m fine with a wheelchair since it’s just a matter of drawing blood and taking cells and then going back’, I found I actually couldn’t get up at all. It was really heartbreaking”. (ID: A)

“Being hospitalized while in good health meant that the atmosphere of the hospital itself was stressful for me”. (ID: E)

“A fellow patient in the same room advised me to cut my hair in advance, probably because it would eventually fall out. I hadn’t been that conscious of it myself, so I felt really sorry. I thought it would have been better if I could have been recognized as a donor when entering the ward or if there was a separate room just for donors”. (ID: A)

“When the curtain was suddenly pulled back, I, being healthy, felt like my private space was being invaded so easily”. (ID: D)

{Society’s lack of awareness regarding bone marrow donors}

This category consisted of two subcategories: [I would like to broaden society’s understanding of bone marrow donors] and [I would like to increase awareness of bone marrow banks and donation methods]. The participants expressed their hope to provide information about bone marrow donation, to deepen societal understanding, and promote awareness on a broader scale.

“I would love for more people to have this wonderful experience, and it would be great if younger generations could take an interest in it, especially those aspiring to become healthcare professionals”. (ID: F)

“The first thing that surprised me was that there is a method of collecting cells from blood. I had always thought that bone marrow transplants involved only direct extraction from the bone marrow, which I believe raised the barrier for donor registration”. (ID: C)

{Concerns about the potential negative impact on work and family life}

This category consisted of two subcategories: [I had to take time off work] and [My becoming a bone marrow donor is a significant event for my family]. Participants discussed the impact of becoming a bone marrow donor on their work and family lives.

“I didn’t mention anything about becoming a bone marrow donor to my company. I just said I needed to take a couple of days off for personal reasons”. (ID: E)

“My parents, in particular, questioned whether it was necessary to take such a risk with a healthy body. They also opposed it, considering I was about to get married and wondered how it would be perceived by my partner’s parents”. (ID: E)

{Conflicts arising from differences in bone marrow donation methods}

This category consisted of two subcategories: [The hopes and anxieties that related donors have] and [The prayers and concerns that unrelated donors have for the recipient’s recovery after transplantation]. Participants shared their feelings as related donors, observing the condition of their family members after transplantation, and unrelated donors shared thoughts on their lack of awareness of the recipient’s condition post-transplantation.

“There’s honestly a part of me that wonders if my brother would have recovered better with a transplant from someone else.… I had imagined the transplant would make him much stronger, but then I questioned why there were so many side effects. His face didn’t even look like the brother I knew. Normally, if the donor isn’t a relative, you wouldn’t know each other’s identities”. (ID: A)

“Writing letters (to the recipient) isn’t mandatory. But for me, receiving a letter after the first donation really encouraged me. The second time, I didn’t receive one, so I’ve been carrying this unfounded feeling that perhaps the outcome wasn’t as positive”. (ID: F)

{The inflexibility of testing procedures and systems}

This category consists of two subcategories: [It was difficult to coordinate the schedule and location for donor testing] and [There was limited support provided for bone marrow donors and their families]. Participants explained the challenges they faced during prehospitalization tests and preparations.

“When I was told that coordinating with various organizations like the bone marrow bank and the hospital meant that this was the only possible schedule, I thought, ‘Ah, I see, that’s just how it is’”. (ID: B)

“If there had been support not just for the donor but also for the family, such as arranging care for children, I might have been able to handle the situation more smoothly and without as much distress”. (ID: D)

{Fulfillment and personal growth}

This category consisted of four subcategories: [The experience of being a bone marrow donor has been a valuable source of personal growth], [I am proud to have become a bone marrow donor], [I am grateful for the opportunity to have become a bone marrow donor], and [The experience of being a bone marrow donor is not considered exceptional]. Participants discussed their positive perceptions of their experiences as bone marrow donors.

“I developed a strong sense that you won’t know until you try. Having struggled with making significant decisions for a long time, I feel that the donor experience helped me become more decisive”. (ID: B)

“This experience has been entirely positive for me. It has boosted my confidence and is my greatest source of pride”. (ID: F)

“On the contrary, even though I didn’t give new life, I feel that I’ve been given a new perspective on life”. (ID: F)

“I don’t feel like I did something extraordinary or that I’m especially admirable for helping someone. It feels more like donating blood. ...When something good happens, I think it’s because I’ve done something, even if just briefly, to give hope to someone in need. It gives me a sense of appreciation for the good things in my life”. (ID: D)

Discussion

This study explored the experiences of adolescent and young adult (AYA) bone marrow donors. Based on the study findings, we obtained the following insights into the experiences of AYA bone marrow donors:

Despite having a strong sense of mission and commitment as bone marrow donors, many participants experienced unique challenges typical of the AYA generation. These challenges include family opposition, lack of understanding from employers and supervisors regarding bone marrow donation, lack of flexibility in testing and procedures, concerns about the negative impact on work and family life, and societal ignorance about bone marrow donation. Conversely, despite experiencing physical and psychological pain associated with hospitalization and the differing methods of marrow donation, participants exhibited a positive view of their experience, describing it as fulfilling and a matter of course, with the belief that “becoming a bone marrow donor was a good thing”.

Characteristics of bone marrow donors in the AYA generation

The study participants commonly expressed a desire “to be of help to someone” as a key motivation for deciding to become bone marrow donors. This suggests that they found meaning not in living for their own personal gain but in contributing to the well-being of others and living as part of a larger society, leading them to resolve to become donors.

While bone marrow donors may exhibit certain psychological characteristics such as a tendency toward lower HRQOL in the mental health domain, evidence suggests that their self-esteem and sense of happiness increase before and after donation, sometimes surpassing the mental HRQOL of healthy individuals¹²⁾. Therefore, the notion that “living for others adds value to life” and its psychological connection to life satisfaction and happiness warrants further exploration.

Even when the process of becoming a bone marrow donor proceeds smoothly, many donors experience opposition from family members or a lack of understanding in the workplace at the final stage. As noted in previous studies²¹⁾, the act of stem cell donation is heavily influenced by social and cultural factors, which in turn affect bone marrow donors. Additionally, the participants in this study, who belonged to the AYA generation, exhibited concerns about the negative impact on their families, education, and employment.

The AYA generation has a lower bone marrow donor registration rate than other generations, with concerns about its impact on academics and employment cited as contributing factors⁶⁾.

This study revealed that donors often experience ongoing anxiety as a psychological and social challenge, before and after becoming bone marrow donors. Prior to donation, physicians explain not only the safety and necessity of becoming a bone marrow transplant donor but also the associated risks that can induce anxiety²⁶⁾.

After becoming a donor, this anxiety may be exacerbated by the unknowns of anesthesia, procedures, and the inherent risk to their own life, which cannot be entirely guaranteed. In other words, becoming a bone marrow donor is an extraordinary event, and the inherent uncertainty surrounding this treatment makes the decision to become a donor a significant stressor, potentially leading to various reactions and increased anxiety. Therefore, it is crucial that nurses thoroughly assess how donors cope with bone marrow collection and provide support by communicating the safety and risks involved.

Differences between related and unrelated donors

The results of this study identified differences in the issues faced by related and unrelated bone marrow donors. Patients undergoing bone marrow transplantation often experience conflicts in deciding whether to proceed with the transplant, with fear of death playing a significant role in their decision²⁷⁾. Related donors are likely motivated by their understanding of the recipient’s psychological state and driven by the desire to help and be of service. Unrelated donors also express the desire to “be of help to others”²⁸⁾. However, in the case of related donors, the depth of the familial relationship and history of interpersonal relationships may influence their decision to become donors.

Furthermore, related donors often struggle with feelings of responsibility, worry about whether they should donate, or fear that if the transplant fails, they might be blamed for the recipient’s (family member’s) death, leading them to make the decision to donate out of a sense of duty²⁶⁾. Previous studies¹²⁾ have shown that related donors tend to have a lower mental HRQOL than unrelated donors.

Consequently, it can be inferred that related donors face greater psychological burdens because they have fewer outlets to express their anxieties and thoughts, lack anonymity, and because of expectations and pressures from those around them. Bone marrow transplantation significantly impacts not only the quality of life (QOL) and survival of the recipient, but also the donor, who may also experience doubt, anxiety, and internal conflicts. It is crucial for nurses to sincerely acknowledge these psychological states and provide support that helps donors make decisions that they will not regret.

Strategies for increasing public awareness about bone marrow donation among the AYA generation

The results of this study revealed that many donors felt strongly influenced by social and cultural factors when considering hematopoietic stem cell donation. In terms of the relationship between hematopoietic stem cell donation and the psychosocial factors affecting bone marrow donors, it has previously been reported that “adjustments within the workplace and family” are the most significant factors affecting donation²⁹⁾. To become a bone marrow donor, individuals must visit medical institutions approximately eight times on week days for explanations and tests related to bone marrow and peripheral stem cell donation through the bone marrow bank. Donors are required to take >10 days off work; this includes hospitalization for the donation and post-donation health checks. Therefore, even if the donor has a strong willingness to donate, difficulties in gaining understanding from their workplace or family may become an obstacle, leading them to abandon the idea of donation.

It is hoped that by improving the awareness regarding donors in workplaces and local communities, donors who are willing to donate hematopoietic stem cells will be encouraged to actively approach their workplaces about the possibility of donor leave or the use of public leave for donors and to take action, such as using annual leave. Moreover, as family members of donors often experience anxiety, fear, and concerns about their impact on family life²⁶⁾, the implementation of strategies that reduce these emotions and provide effective information to deepen their understanding of the safety of hematopoietic stem cell donation, is essential.

Despite ongoing awareness campaigns, the number of bone marrow donor registrations in Japan has not shown a significant upward trend⁵⁾. Moreover, as a result of the recent spread of infectious diseases, there is a decreasing trend in bone marrow donor registration, which may affect patients awaiting allogeneic hematopoietic stem cell transplantation. Particularly among the AYA generation aged 15–39 years, bone marrow donor registrations are lower than in other age groups, with studies indicating that concerns about the impact of education and employment are contributing factors⁶⁾. Given these circumstances, there is a need to raise public awareness about bone marrow donation and carry out promotional activities aimed at increasing the number of donor registrations. Previous research²⁹⁾ suggests that a high frequency of blood donation is a concrete factor related to the willingness to cooperate in stem cell donation. Therefore, it is necessary to explore ways to use this information in blood bank coordination and donor registration programs.

In conclusion, healthcare providers need to deepen their understanding of donors’ needs in order to provide them with crucial support. Historically, despite recognizing the necessity of supporting bone marrow donors, healthcare providers have tended to focus their attention primarily on the recipients, with nursing and medical care being centered around them. This study suggests that donors, despite their anxiety regarding hospitalization, tests, long-term health, and discomfort associated with invasive medical procedures, as well as their desire to meet the expectations of others, may not have received sufficient care. Therefore, it is imperative for healthcare providers to deepen their understanding of donors, recognize that donors need support, and undertake awareness programs that promote a comprehensive understanding of bone marrow donation throughout society, by explaining the specifics of donor registration and the content of donor examinations.

Implications for nursing practice

The results of this study revealed that bone marrow donors experience physical pain and discomfort from invasive tests and medical procedures and are concerned about their long-term health. Despite these negative aspects, they generally view their experiences as donors positively. Previous research¹²⁾ has shown that bone marrow donors have greater self-esteem and a heightened sense of well-being following donations, and maintain a positive state of mental health. Similar psychological characteristics can be observed in fathers of children with chronic illnesses. These fathers are initially shocked by the reality of their child’s illness and face significant anxiety about the future. Despite the various stressors they encounter within their families and society, they often strive to support their children and spouses while viewing their stress as an opportunity for personal growth³⁰⁾.

The fact that bone marrow donors, despite their anxieties and discomfort, tend to view their experiences positively is an important insight into how to support them effectively.

Additionally, it is essential for nurses to reaffirm their role in supporting bone marrow donors and deepen their understanding of this demographic group, particularly the AYA age group. They play a critical role in the workforce and support economic and social security. Strategies should be developed to enhance understanding and promote bone marrow donor registration within this age group.

Study limitations and future directions

The limitations of this study include the possibility that the participants had a higher level of knowledge regarding bone marrow transplantation than the general population. Additionally, as the study used a qualitative descriptive design, its generalizability is limited. Future research should involve large-scale studies to clarify the specific psychological characteristics of AYA bone marrow donors and build on detailed practical and research-based approaches. Further examination of support strategies among AYA individuals is required to improve their understanding and increase donor registrations.

Conclusion

Based on the analysis of experiences of AYA bone marrow donors, seven categories and their constituent 23 subcategories were identified. Despite having a strong sense of mission and commitment as bone marrow donors, many participants experienced challenges specific to the AYA generation. These included opposition from the family, lack of understanding from employers and supervisors, inflexibility in testing and procedures, concerns about the negative effects on work and family life, and societal ignorance about bone marrow donation. Conversely, despite experiencing physical and psychological pain associated with hospitalization and different donation methods, donors often found positive meaning in their experience, interpreting it as fulfilling and worthwhile.

Based on these findings, it is crucial that nurses recognize the need for support for bone marrow donors and deepen their understanding of AYA donors in particular. As a significant sector of the workforce and contributor to the economy and social security, this group requires targeted efforts to increase awareness and registration for bone marrow donation.

Conflict of interest

There are no conflicts of interest to disclose in this study.

Funding information

This study was funded by the 4th SGH Cancer Nursing Research Grant.

Ethics approval and consent to participate

The Tokyo Healthcare University Human Research Ethics Committee approved this study (Approval Number: 022-03). Informed consent was obtained after the participants had been provided with a detailed explanation of the study objectives, in writing and verbally.

Consent for publication

We agree to the publication terms as outlined by your esteemed journal.

Author contributions

M.H. substantially contributed to the conceptualization of the study. K.S. and M.H. contributed significantly to the data analysis and interpretation. K.S. and M.H. contributed substantially to the manuscript drafting. All authors critically reviewed and revised the manuscript and approved the final version for submission.

Data availability statement

The datasets generated and/or analyzed in the current study are available from the corresponding author upon reasonable request.