Survivorship Experiences of Chinese Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study

doi:10.21203/rs.3.rs-2691540/v1

Background: The number of global hematopoietic stem cell transplantation (HSCT) survivors is increasing rapidly. Survivors encounter many challenges, but studies regarding survivorship experiences in China are scarce.

Objective: This study aimed to explore the survivorship experiences of Chinese patients with hematological cancers after HSCT and to describe the impact of HSCT on survivors’ lives.

Methods: Descriptive qualitative research was employed. Purposive sampling was used to recruit HSCT survivors who were treated in Zhejiang Province from June 2021 to June 2022. Audio-recorded semi-structured interviews were conducted, transcribed verbatim, and analyzed via conventional content analysis.

Results: Fifteen HSCT survivors aged 18-59 years participated in this study. Four themes and 11 subthemes emerged: (1) transplant being harder than you thought (body function impaired, forced to modify diet, disturbed by survivorship uncertainty), (2) difficulty blending into circles (limited activity space, suffering from discrimination), (3) adjusting value judgment (health being a top priority, contributing to family as much as possible, feeling worthless), and (4) still being the lucky one (recovered better than others, genuine relationships acquired, self-improvement achieved).

Conclusion: This study offers insight into subjective survivorship experiences of patients with hematological cancers post-HSCT within a Chinese sociocultural context. It also presents changed perceptions of HSCT, life alterations, adjusted value judgments, and positive self-evaluation since treatment.

Implications for Practice: Nurses can provide person-centered survivorship care based on understanding the survivorship experiences and needs of Chinese HSCT survivors. Intervention programs and informational materials should be developed to address difficulties encountered by Chinese HSCT survivors.

Cancer survivors

Experiences

GVHD

Qualitative research

Survivorship

Hematologic malignancies refer to cancers that affect the bone marrow, blood, and lymph nodes. In 2020 alone, 1,278,362 new cases were reported globally.¹ Hematopoietic stem cell transplantation (HSCT) is a curative therapy for hematologic malignancies and includes autologous hematopoietic stem cell transplantation (auto-HSCT) and allogeneic hematopoietic stem cell transplantation (allo-HSCT). Auto-HSCT (reinfusing stem cells derived from the patient’s own hematopoietic stem cells) results in less transplant-related morbidity but presents a higher risk of disease relapse. Allo-HSCT uses the stem cells from an unrelated donor and has a lower risk for disease recurrence but has a higher risk of treatment-related mortality and complications, such as graft-versus-host-disease (GVHD).² Globally, HSCTs have been increasing continuously since 2006 (median increase 5.9% for auto-HSCT and 6.8% for allo-HSCT per year to 2016); the total number increased from 46,563 in 2006 to 82,718 in 2016.³ To date, 1.5 million HSCTs have been performed globally.³ With decreasing cancer death rates and steadily improving HSCT outcomes (62% survival for one year post-HSCT),⁴ the number of HSCT survivors also continues to grow.

Despite this success, survivors are more likely to experience many challenges during their survivorship. According to quantitative findings, HSCT survivors experience various late complications. Examples from a study of 67 survivors more than two-years post-transplant in Korea included fatigue (80.6%), dry eye (37%), oral pain (34.3%), joint pain or stiffness (20.9%), and chronic GVHD in 54% of allo-HSCT survivors.⁵ The participants also reported impaired quality of life and psychosocial morbidity.⁵ In findings from a study in the United States of 181 survivors, health insurance difficulties and economic stress were mentioned.⁶ Most importantly, HSCT late effects may persist for a long time.⁷

The abovementioned quantitative studies failed to provide a deeper understanding of how HSCT survivors perceive these challenges and the HSCT’s impact on the survivors’ lives and how they manage these challenges. In contrast, qualitative research can help answer these questions by exploring survivorship experiences of patients with hematologic malignancies post-HSCT. This methodology documents insights into HSCT survivors’ experiences and can improve survivorship care and management. Qualitative research also informs the development of survivor-centered interventions and informational materials to help this population better cope with survivorship challenges.

To date, several qualitative studies from multiple countries (the United States, the United Kingdom, Canada, Australia, Germany, Netherlands, Belgium, Jordan, Japan and Singapore) have explored survivorship experiences of HSCT survivors from various perspectives. Researchers have investigated the impact of HSCT on quality of life, life experiences and long-term effects, living with GVHD, spirituality, coherence, self-management, stress and coping strategies, healthcare and financial needs, and returning to work.^8–18 Findings from these studies included negative experiences and restrictions in survivorship,^8,11 job insecurity and decline in work capacity.^9,14 However, they also documented positive experiences including cognitive coping,¹⁷ acknowledging the meaningfulness of the HSCT experience,^15,18 reliance on spiritual or religious resources,¹⁰ progressively learning self-management,¹⁶ as well as valuing the importance of participating in health decision-making.^12,13 Nevertheless, qualitative reports on the survivorship experiences of Chinese HSCT survivors are still lacking at present.

In qualitative research, researchers investigate experiences or phenomena as constructed by cultural, historical, social and individual contexts.¹⁹ Therefore, qualitative researchers take natural contexts where individuals or groups function into consideration while exploring or describing phenomena. Generalization is not a guiding principle in qualitative research in contrast to quantitative research.¹⁹ Due to differences in Chinese culture (e.g., collectivism versus individualism), socioeconomic status and healthcare systems, research in the aforementioned countries (especially Western countries), means existing survivorship findings may not be suitable for understanding Chinese HSCT survivors’ experiences. Although much is known about the lives of survivors of common cancers such as breast cancer²⁰ or colorectal cancer,²¹ the understanding of the experiences of hematological cancer survivors post-HSCT is limited. Therefore, the aim of this study was to explore the survivorship experiences of Chinese patients with hematological cancers after HSCT and describe the HSCT’s impact on their lives.

Design

This study applied a descriptive qualitative research design²² to explore the survivorship experiences of Chinese HSCT survivors. Descriptive qualitative research draws general tenets from naturalistic inquiry,²³ and aims to produce straight descriptions of a phenomenon organized in a way that fits the data best (low-inference interpretation).²²

Recruitment and Participants

Based on clinical records, purposive sampling was used to recruit HSCT survivors treated at X hospital in X Province, China. A maximum variation sampling was used based on age, gender, education level, marital status, financial status, religious belief, disease type, and HSCT types.

The inclusion criteria included: (1) a confirmed medical diagnosis of hematological cancer, (2) at least 100 days after HSCT,^10,17 (3) no relapse of their cancer, (4) at least 16 years old while undergoing their HSCT and at least 18 years old when interviewed, (5) understand and speak Chinese, and (6) willing to share HSCT survivorship experiences. The exclusion criteria included psychiatric disease, cognitive impairment, or severe physical impairments. Seventeen HSCT survivors were invited to participate, and two males refused due to a time conflict and a lack of interest.

Ethical Considerations

The Medical Ethical Committee of XX approved this study (No. XX). Written informed consent was obtained from participants prior to each interview. Confidentiality was ensured, and all results are presented anonymously. Only the research team had access to the research data stored securely either on a password-protected laptop or in a locked cabinet.

Data Collection

Data were collected between June 2021 and June 2022. Based on the literature on the experiences of HSCT survivors^{8–12, 14,15} and clinical experience of local hospital hematologists and hematology nurses, an interview guide was developed (Table 1). The overarching intent of these interview questions was in line with the research objectives, which were to inquire about facets of HSCT survivorship experiences from the survivors’ perspectives as broadly as possible (e.g., impacts on daily life, positive changes, and negative changes).

All audio-recorded, semi-structured interviews were conducted with participants face-to-face by XX or XY, except for two. These two required online video interviews due to COVID-19 quarantine requirements. Each researcher maintained a neutral countenance. Probing questions were used to clarify participants’ responses. For example, when one participant mentioned that his appearance had changed due to skin GVHD, XX asked, “You just mentioned skin GVHD. Please tell me more about your experiences of altered appearance.” Field notes recorded the details of the interview environment, interactions, and nonverbal signs after each interview. All interviews were transcribed verbatim. The length ranged from 45 to 123 minutes, with an average of 84.67 minutes. The participant’s spouse was present during three interviews. The interview settings were shown in Table 2.

Data Analysis

Data were analyzed using conventional content analysis by XX, who has experience in applying this method, and analysis was simultaneously conducted during data collection.²⁴ First, XX read the interview transcript multiple times to gain an overall understanding of the survivor’s experience. Then, XX manually analyzed the transcript using line-by-line coding to identify possible coding units that captured key ideas and descriptions of survivorship experiences. Subsequently, XX contrasted these coding units and condensed coding units to a more abstract level based on shared characteristics. Last, several abstracted coding units were extracted and grouped into subthemes and themes through an inductive and iterative process. Chinese was used for analyzing the qualitative data. Themes, subthemes and related quotes were translated to English for writing the report by XX, bilingual in Chinese and English, with experience translating qualitative research reports. The translation results were reviewed and checked by the three researchers (also the authors), who also read and understand English and Chinese. Disagreements in translation were resolved by discussion. Data saturation was achieved after the 11th interview when the three researchers began to repeatedly hear similar responses and noted no emergence of new subthemes or themes related to survivors’ experiences.²⁵

Rigor

Several strategies were used to enhance rigor.^26,27 Credibility and authenticity were achieved by establishing trusting relationships with participants (acquainting with all participants before the interviews) and reviewing transcripts twice for accuracy. Criticality and integrity were obtained by writing reflective journals continuously. For example, we self-reflected on how our roles (XX, a female hematology nurse with five years of clinical experience and XY, a female head nurse for hematology with eight years of experience) could have influenced interviews and data analysis.

A total of 15 HSCT survivors aged 18–59 years participated in this study. Sample characteristics are shown in Table 3. Four themes and 11 subthemes were identified as important aspects of survivorship experiences of Chinese patients with hematological cancers after HSCT (Table 4).

Theme 1: Transplant Being Harder Than You Thought

Nearly all participants considered HSCT to be a tough treatment, but they had opted to receive it because they had fully hoped for life after HSCT. Nevertheless, after experiencing various post-transplant challenges as a survivor, they realized that HSCT was harder than they had thought.

BODY FUNCTION IMPAIRED

Lack of strength was a common physical impairment among HSCT survivors. They had experienced reduced strength after chemotherapy and before transplantation. However, compared to that experience, their exhaustion during HSCT survivorship was much more severe and persistent. One participant noted, “Now (after transplantation) I have no strength to carry my son or other things that I used to be able to.” (P7)

Impaired fertility and vision were also examples of changed body functions, which were related to HSCT conditioning regimen and ocular manifestations of GVHD, respectively. Confronting the high probability of long-term infertility and/or decreased vision, survivors felt these outcomes were highly unacceptable (especially young survivors who noted they had known little about these late effects before HSCT). One participant stated, “When I heard this (almost no chance for me to get pregnant), I immediately started crying. It’s so hard to accept this! I was so young! I deeply want to have my own child, like other healthy young girls can!” (P11)

FORCED TO MODIFY DIET

Due to medication side effects and HSCT-related complications, many survivors experienced noticeable dietary changes. Some participants mentioned that they had increased appetite, could not help eating more, but still did not feel full while taking steroids. “I am still taking steroids now…Even though I had eaten up two big bowls of rice and half of a pork leg, I was still not full and wanted to eat more.” (P1) In contrast, a loss of appetite due to a reduced sense of taste was another common issue among survivors. “When I ate salty food, there seemed to be no taste in my mouth. I could taste sweet things a little, so I ate congee with sugar for almost a week. Now I do not feel like eating at all. Look, my tongue is coated so white and thick!” (P6)

Despite having a normal appetite, a few participants had no choice but to limit eating large amounts of food owing to severe oral mucositis or chronic oral GVHD, and some even fasted because of GVHD involving their gastrointestinal tract. A participant mentioned, “To avoid irritating these oral ulcerations and worsening the pain, I limited my diet to a large extent, with only Chinese steamed eggs, sponge cake, and milk.” (P4)

DISTURBED BY SURVIVORSHIP UNCERTAINTY

Many participants expressed that their current lives were filled with uncertainty, mainly due to the uncertainty of relapse. In their minds, if cancer returned, all their efforts and family’s efforts to fight their cancer and all hardships they had borne were utterly wasted. Therefore, when they felt a little physical discomfort, heard the news of a relapse or death among other patients, or approached the date of their routine checkups, they became very anxious, worried, or even terrified. A participant shared, “Each time before the bimonthly bone marrow biopsy, I felt so much stress. I felt so terrified and worried a lot about the result (if [the] cancer relapsed)!” (P8)

Severe GVHD also put survivors of an allo-HSCT at a loss. They did not know when their GVHD would be cured or if it even could be cured. Confronted with the involvement of several organs, a continuously weakening body, and seemingly endless symptoms of GVHD, some felt desperate, helpless, and regretful about their transplant decision, and even blamed themselves. “It has been two years (since allo-HSCT), but I am still so sick, weak, and listless! This terrible situation seems endless…I am extremely regretful of my transplant decision, because it brought too many unexpected problems!” (P5)

Theme 2: Difficulty Blending Into Circles

Gaining a sense of belonging is especially crucial for everyone who live in collectivistic cultures, such as China. Integrating into social circles is the primary strategy to achieve this feeling. However, for HSCT survivors, there were some obstacles.

LIMITED ACTIVITY SPACE

During survivorship, especially the first three years, many survivors experienced a significant reduction in activities they could do. This primarily resulted from fear of infection and weakness in their legs due to a lack of energy. In those moments, home became the safest place for the survivors to stay. One male participant stated, “I wore a mask and walked (outside) for just a little while. When I got home, I felt tired and coughed, and then I had a high fever and had to see a doctor. Since then, I have rarely gone out except for going to the hospital.” (P5)

Some survivors decided to stay indoors due to fear of getting COVID-19. “The new variant of COVID-19 was more contagious. Thus, I chose not to go out but stayed at home except for something necessary.” (P12) Another participant stayed at home because of her weak legs. “I seldom went out because I was more likely to fall due to weak legs after HSCT.” (P13)

SUFFERING FROM DISCRIMINATION

When discharged and returned to their usual living conditions, some HSCT recipients realized that they and their families were being treated differently by others compared to their experiences before the onset of illness and transplantation, including being bullied by neighbors due to their history of cancer. This was more common in rural areas in China. “I was looked down upon by my neighbors. They spread gossip and rumors about my illness and treatment widely. They even did not let their children play with my son!” (P7)

Skin changes are prevalent among HSCT survivors. When survivors with noticeable skin changes went out, they felt that they were looked at by strangers on the road in a weird way, and a few even mentioned being described by others as monsters. “Several days ago, I was taking a walk with my wife in the 501 City Square. Suddenly, a child said loudly, ‘Mom, it’s a monster! His skin is so strange and terrifying!’” (P4)

Young HSCT survivors were at a significant disadvantage while looking for a marriage partner. This was not only because of their history of cancer but also due to their impaired reproductive function after HSCT. One participant said, “When we broke up, he told me, ‘No one will stand for a woman who can’t be pregnant.’ Immediately, it seemed like all my hope for marriage was over. It’s so painful!” (P11)

Theme 3: Adjusting Value Judgments

Value judgments refer to the judgment of the usefulness of something or someone. This is changeable and is often determined or changed by a comparison.

HEALTH BEING A TOP PRIORITY

After experiencing the unforgettable effects of cancer treatment, all participants realized that their health was the most important to them. During survivorship, participants regarded their hard-won, post-HSCT body as equivalent to a rebirth and treasured it very much. They actively adopted several strategies to maintain physical and psychological well-being, such as eating a healthy diet (e.g., avoiding food regarded as stimulating from the perspective of traditional Chinese medicine, such as mushrooms, eggs, and mutton), being physically active, maintaining hobbies, keeping a diary to jot down thoughts and regulating their body using Chinese medicines. “As long as whatever it was would be beneficial to my health, I would do it. For example, I played piano for half an hour every day, which made me happy.” (P3) “The major change was that I stopped drinking soft drinks.” (P14)

Some survivors believed in geomantic omens (feng shui), an ancient Chinese art of selecting auspicious sites.²⁸ To achieve balance and harmony in a way that will bring health and peace, they changed where they lived or rebuilt homes. “A geomancer (feng shui expert who determines aspects of the house that are out of balance and inharmonious based on ancient Chinese metaphysics and personal experiences²⁹) said the location of the back door of my house was ominous and inharmonious. Now the back door is blocked, and I moved to live in another building, just in case (my health) would be influenced by that inharmonious environment.” (P10)

CONTRIBUTING TO THE FAMILY AS MUCH AS POSSIBLE

Family is a core component of Chinese society. Most Chinese people are family oriented rather than individually oriented, a main characteristic in Western countries. Family support received during treatment and survivorship strengthened the participants’ belief that they should contribute to their family as much as possible. Even though they were immersed in a desperate situation, they still tried to make contributions. “Although I was admitted to the hospital, I am still working via mobile phone…I must shoulder responsibility as a father!” (P4)

Some participants changed their family roles and contributed to the family differently. “I never touched the broom or mop before illness. However, now, I often do some cleaning and cooking.” (P1) Another weak survivor felt her value to family lay in contributing by doing simple housework. “Whenever I felt a little bit of strength, I watered the flowers or washed the basin. At that time, I felt that I was a person who was useful to family!” (P15) Accompanying family members was another way to make a family contribution. “No one knows when the cancer will come back. Therefore, I try to spend as much time as I can with them [family members].” (P12)

FEELING WORTHLESS

Feeling worthless was a value judgment that HSCT survivors made toward themselves. This was often generated among survivors who were dissatisfied with their health conditions, economic conditions, or intimate relationship status. The dramatically changed life conditions made some survivors long for their past lives. When the memories of bad events came to their minds, they felt wronged, and in the meantime, they evaluated themselves as failures. “I often cried while driving. My life has failed in everything! At school, I was an underachieving student with poor academic performance. At 23 years old, my father passed away. At 26 years old, I was diagnosed with cancer. Now, my marriage has ended in a divorce. I am a total loser!” (P7)

Some married female HSCT survivors lived under the same roof as their natural parents and relied on them in various ways during survivorship. This phenomenon brought rumors that humiliated one female survivor and her family. “I was so useless! I have married, but I still live with my natural parents and depend on them. They not only paid all my medical fees and took care of me, but they also looked after my son!” (P6)

Theme 4: Still Being the Lucky One

Compared to individuals with cancer or other HSCT survivors who were in a worse situation than they were, some survivors felt that they were still fortunate.

RECOVERED BETTER THAN OTHERS

Some participants regarded patients with a blood cancer who entered the transplantation ward and underwent transplants at a similar time as comrades-in-arms. They kept in touch with each other during survivorship. Through communication, some survivors realized that they belonged to the category of patients who had recovered well, and this generated a sense of luck in the midst of misfortune. “I was fortunate! You see, I recovered well after transplantation. However, another survivor who I knew was still disturbed by low platelet levels and always felt fatigued.” (P1). Another participant said, “Among so many allo-HSCT recipients, I think I am probably the one who recovered the best. That year, three patients with hematological cancers who were 45 years old underwent transplantation, including me. But now, only I am still alive!” (P2)

GENUINE RELATIONSHIPS ACQUIRED

After experiencing cancer and treatment, most HSCT survivors recognized who their true friends were and who deserved to be treated sincerely. “I often did my best to help my friends. However, only a few visited me while I was in treatment or even afterwards. Now, I see clearly who my sincere friends are who deserve genuine friendship and who are just fair-weather friends.” (P2)

Tests of relationships also occurred in marriages. One participant realized that her husband truly loved her. “I have to say that my husband was so sincere to me and treated me so well! Before illness, he worked outside the home and did not care about family things. But this time, everything associated with illness, transplant and complications has been well handled by him.” (P9) Another participant was also aware of how sincerely his wife had supported him. “Since diagnosis, my wife always accompanied me and told me firmly, ‘This disease must be treated. If the worst situation comes, we could sell our house.’ I was deeply moved! In contrast, another patient in the same ward was left by his wife.” (P1)

SELF-IMPROVEMENT ACHIEVED

Many people desire a reputation based on material possessions (e.g., house, car), and some even pursue purchases far beyond their financial ability. However, for some survivors, this irrational behavior had changed. They focused more on their real needs and made choices based on their corresponding abilities. “I used to be so concerned about face (mian zi) and always wanted to be better than others before I got sick. However, now, I have become more practical and do things mainly according to my abilities rather than for the sake of saving face.” (P2)

Some participants became empathic and gained more understanding of others. “…I sometimes lost temper with my mother…I’ve become more understanding and often try to stand in her shoes to think through many things.” (P6)

To our knowledge, this is the first qualitative study focused on experiences of Chinese hematological cancer survivors after HSCT. Our findings revealed challenges that survivors face and how they cope with them. It also provided insights into some understudied research areas.

The subtheme “forced to modify diet” reflected that HSCT survivors had no choice but to change their diets due to medication side effects and HSCT-related complications. Similar findings were made in studies from the UK⁸ and Japan.¹⁷ As reported in a study in the United States, up to 90% of 90 HSCT survivors did not adhere to a good quality diet, resulting in nutritional deficiencies.³⁰ One possible reason for poor diet found in our study was a “reduced sense of taste.” Consistent with our findings, a significant hypogeusia for salt was reported by 15 survivors of HSCT in an earlier retrospective Italian study³¹ and a previous prospective cross-sectional Brazilian study of 61 HSCT survivors.³² However, more evidence is still needed because long-term taste dysfunction among HSCT survivors has not been well studied thus far.

Another potential cause of poor diet shown in our study was “oral complications.” In a recent study in the United States, of the participants who had survived an allo-HSCT, more than 70% suffered from dry mouth, or a reduction in saliva output, and 58.6% were diagnosed with chronic GVHD of the oral mucosa.³³ Due to limited information on the oral health of Chinese HSCT survivors, further investigations are warranted. For some HSCT survivors disturbed by oral mucositis, green tea mouthwash³⁴ or Chamomilla recutita mouthwash³⁵ might be cost-effective treatments for improving oral health. However, these prospective solutions still require high-quality trials to confirm. Diet habits are formed related to local culture, and diet practices are associated with contexts. Qualitative analyses to achieve a deeper understanding of Chinese HSCT survivors’ diet experiences are warranted.

Congruent with previous studies,^8,12,15,17 the finding that survivors were “disturbed by survivorship uncertainty” was also noted in our study. One main source was illness-related uncertainty. HSCT survivors often connected symptoms or even slight discomforts with negative events such as relapse, which evoked negative emotions. Learning and developing self-management expertise through interventions could be seen as one crucial strategy to reduce uncertainty.¹⁶ However, current self-management interventions mainly target survivors of breast cancer, prostate cancer, or melanoma rather than survivors of hematological cancerspost-HSCT,^36,37 suggesting an avenue for further research.

Another uncertainty source was related to persistent GVHD. Due to this, some participants found what HSCT provided was not the quick cure they had wished for, but rather a life much worse than before and in which they were nearly wholly controlled by treatment side effects. When the psychological gap between expectations and outcomes was especially large, regret for treatment decisions became apparent. In one study of 184 HSCT survivors in the United States, the percentage of allo-HSCT survivors expressing regret reached 15%.³⁸ HSCT decision regret may relate to insufficient information about HSCT side effects provided to patients before transplantation. As the HSCT treatment decision is a “preference-sensitive” decision,³⁹ shared decision-making is suggested.

“Limited activity space” is a subtheme that highlights a shrunken social world for HSCT survivors. A “diminished world,” described as “a small world,” was also found among Australian HSCT survivors.¹¹ A lack of energy, such as weak legs mentioned by our participants, was one cause of limited activity. As reported by others, fatigue is a highly prevalent symptom among HSCT survivors and can even last for years posttreatment.⁴⁰ Targeted interventions, such as music therapy and mindfulness, are recommended to address fatigue for HSCT survivors.⁴¹ Exercise has also been treated as an approach to reduce fatigue.⁴² Nevertheless, in consideration of the heightened risk of infection and insufficient energy experienced by many survivors, suitable and effective exercise should be investigated, and individually tailored fitness plans need to be developed.

“Suffering from discrimination” due to an impaired body image was mentioned not only by Chinese HSCT survivors but also by HSCT survivors in Belgium (e.g., being judged or stared at because of certain visible physical consequences).¹⁸ Our participants depicted that they were seen as monsters by strangers on the road owing to chronic skin GVHD and had suffered the loss of romantic relationships because of infertility. Notably, more than 70% of HSCT survivors felt less physically and sexually attractive, and almost 40% had body image dissatisfaction in a study from Korea.⁴³ Whether or not a relationship exists between experiencing discrimination due to altered appearances and internalizing body image dissatisfaction among HSCT survivors requires further investigation. Moreover, fertility assessment and reproductive health preservation should be prioritized at the initial diagnosis for HSCT candidates.

Surprisingly, we found that not only had the survivors encountered discrimination, but their family members had as well, even their children. This may be related to two reasons. First, there is limited public knowledge about hematological cancers and HSCT in China. The second is Chinese collectivist culture traits. In a collectivist society, in-groups, such as families rather than individuals, are considered the basic unit of society.⁴⁴ When HSCT survivors were regarded as “an ominous symbol,”⁴⁵ their family members were also seen as ominous. In the public’s eyes, proximity to survivors of cancer can bring bad luck (e.g., cancer)⁴⁵ and this bad luck can be acquired even by approaching their family members.

The subtheme of “feeling worthless” is associated with a significant imbalance in the HSCT survivors’ experiences of kindness received and kindness returned. Influenced by traditional family norms of proverbs such as “a married-out daughter is like spilt water,” married daughters are traditionally considered to be no longer part of their family line but instead to be a member of her husband’s family; these females are seen as having no economic value to their natal family and are not expected to need continued support.⁴⁶ When one married participant found that her natal family still supported her wholeheartedly even though they had not gained substantial returns (e.g., money from her husband’s family), a strong sense of worthlessness was evoked. For those survivors, the theme found in our study as “still being the lucky one” may help the survivors appreciate the love and support of their family through the positive view of having a genuine relationship. Moreover, achieving value-related interventions, such as meaning-centered group psychotherapy⁴⁷ or acceptance and commitment therapy,⁴⁸ require testing in HSCT survivors to establish their efficacy in helping them live meaningfully.

Implications for Clinical Practice and Research

This study is a novel addition to the literature regarding HSCT survivors. Understanding the experiences and needs of Chinese HSCT survivors can help healthcare providers create cancer survivorship care plans and assist nurses in offering person-centered survivorship care. Compared to existing findings from Western countries, some new findings characterized by Chinese culture are presented and interpreted, such as the crucial problem of “difficulty blending into circles” because of the emphasis on belongingness and social connectedness in a collectivist culture, or the phenomenon of how survivors value family by contributing as much as they can. Similar culture-centric concerns include health maintenance strategies that rely on geomancy or traditional Chinese medicine and feeling worthless while living with natural parents after marriage, which is attributed to the influence of traditional notions. Meanwhile, this study provides a foundation for developing intervention programs and informational materials for preventing and managing some survivorship-related issues, such as physical functional impairment, reductions in diet-related quality of life, and cancer and treatment-related discrimination. Psychological problems, including “disturbed by survivorship uncertainty” and “feeling worthless,” deserve more attention. Related strategies such as “mind-body resiliency intervention,”⁴⁹ “self-management intervention”¹⁶ and “value achieving interventions”^47,48 might be feasible for reducing uncertainty across the survivorship, promoting meaning, finding value and improving psychological well-being but still need to be examined in Chinese HSCT survivors. In addition, healthcare providers should disseminate accurate knowledge and information about hematological cancers and HSCT to the public to reduce disease and HSCT-related discrimination. Last, the potential positive effects generated by the formation of a positive attitude of “still being the lucky one” require further exploration.

Limitations

This study has some limitations. First, participants were recruited based on clinical records from one hospital. The longest time post transplantation was 41 months, and only four survivors were employed full-time. Due to regional disparities in economic growth and healthcare resource allocation in China and the higher possibility of encountering more challenges among those who work full-time or who have experienced longer survivorship with a complex trajectory of returning to society,¹⁴ studies involving these survivors may enrich current findings. Second, in consideration of various adverse treatment effects and complications following allo-HSCT and auto-HSCT, further research focusing on the separate survivorship experiences of Chinese allo-HSCT survivors and auto-HSCT survivors or targeting the GVHD experiences of allo-HSCT survivors exclusively might generate other patterns. Third, the presence of the participant’s spouse in three interviews may have influenced the HSCT survivors’ openness while talking. A participant who has an individual interview has a higher likelihood of practicing self-reflection and expressing something deeply personal due to the confidential nature of the one-to-one setting compared to those interviewed with a spouse present.⁵⁰ Fourth, two interviews were conducted using video chat, and thus, a few nonverbal signs may not have been obvious enough to be observed through a video screen, even though the interviews were conducted smoothly with a stable internet connection, good camera quality, and a clear microphone.

This qualitative study provides novel insights into the subjective survivorship experiences of patients with hematological cancers post-HSCT within the sociocultural context of China. The survivors’ changed perceptions of HSCT, life alterations, adjusted value judgments, and positive self-evaluation are presented, which can help nurses provide person-centered survivorship care. This study finds that HSCT is harder than the Chinese HSCT survivors had thought. More attention should be given to solving the challenges encountered by Chinese HSCT survivors during their survivorship, such as impaired body function, being forced to modify one’s diet, survivorship uncertainty, limited activity space, discrimination, and feelings of worthlessness.

The authors declares that there is no conflict of interest.

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Table 1 • Interview Guide
1. Please share with me your experiences after hematopoietic stem cell transplantation.
2. Please share with me your daily life during survivorship.
3. Please share with me what impact hematopoietic stem cell transplantation has had on your life.
4. Please share with me any positive changes you have experienced post-hematopoietic stem cell transplantation.
5. Please share with me any negative changes you have experienced post-hematopoietic stem cell transplantation.

Table 2 • Interview Settings
Location	N
Participants’ homes	4
Wards	2
Western-style fast-food restaurants	2
Physician’s offices	2
An office in the participant’s company	1
Hospital canteen	1
Head nurse’s office	1
WeChat videos	2

Table 3 • Sample Characteristics (N = 15)
Characteristic	N
Age, in years
Mean	36.3
SD	11.7
Gender
Male	7
Female	8
Marital status
Single	3
Married	10
Married but separated	1
Divorced	1
Education level
Primary or less	2
Secondary	7
Tertiary or above	6
Occupation
Full-time employment	2
Freelancer or self-employed	3
Part-time employment	2
Full-time employment but current sick leave	2
Unemployed and not looking for work currently	5
Retired	1
Religion
Christianity	1
Buddhism	5
Catholicism	1
No religion	8
Personal monthly income, CNY
Mean	5756
SD	11219.2
Tumor type
Acute lymphocytic leukemia	6
Acute myeloid leukemia	5
Non-Hodgkin lymphoma	3
Myelodysplastic syndrome	1
HSCT type
Allo-HSCT	12
Auto-HSCT	3
Duration after HSCT (in months)
3–6	0
6–12	4
12–18	2
18–24	5
24–30	1
30–36	2
> 36	1
GVHD involving organs
Skin	6
Skin and eyes	1
Skin, eyes, liver, gastrointestinal tract	1
Skin, eyes, lung	1
Liver, mouth, gastrointestinal tract	1
Mouth	1
Eyes	1
NA	3
Current general health status
Excellent	6
Good	6
Fair	1
Poor	1
Very bad	1

Abbreviations: Allo-HSCT, allogeneic hematopoietic stem cell transplantation; Auto-HSCT, autologous hematopoietic stem cell transplantation; CNY, China yuan; GVHD, graft-versus-host-disease; NA, not applicable; SD, standard deviation.

Table 4 • Themes and Subthemes
Themes	Subthemes
Transplant being harder than you thought	• Body function impaired
	• Forced to modify diet
	• Disturbed by survivorship uncertainty
Difficulty blending into circles	• Limited activity space
Difficulty blending into circles	• Suffering from discrimination
Adjusting value judgment	• Health being a top priority
	• Contributing to family as much as possible
	• Feeling worthless
Still being the lucky one	• Recovered better than others
	• Genuine relationships acquired
	• Self-improvement achieved

Survivorship Experiences of Chinese Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study

Status:

Journal Publication

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Abstract

Introduction

Methods

Results

Discussion

Conclusion

Declarations

References

Tables

Status:

Journal Publication

Version 1