Navigating isolation- barriers and multidimensional support needs in symptom self-management for HSCT patients within laminar airflow rooms: a descriptive qualitative study.

Background

Hematopoietic stem cell transplantation (HSCT) is a therapeutic procedure that replaces a patient’s original pathological hematopoietic stem cells with healthy ones to restore hematopoietic and immune functions [ 1 ]. It is the most effective treatment for malignant hematological diseases, severe bone marrow failure, and certain solid tumors [ 2 ]. Between 1957 and 2019, the estimated number of allogeneic HSCT and autologous HSCT procedures performed worldwide exceeded 1.5 million [ 3 ]. HSCT improves overall and disease-free survival in many patients with malignant and nonmalignant hematological diseases [ 4 ]. However, owing to regimen conditioning, a protective isolation environment, lengthy treatment procedures, and high transplantation costs, the burden of HSCT represents a significant challenge for patients [ 5 , 6 ]. Patients typically experience a variety of physical symptoms, such as nausea, vomiting, and oral mucositis, as well as varying degrees of psychological problems, such as anxiety and fear [ 7 , 8 ]. Patients may experience distress due to their inability to tolerate the physical symptoms arising from HSCT. Consequently, restricting patients’ access to potential sources of support can be perceived as an obstacle that undermines their positivity, which may exacerbate physical discomfort [ 9 , 10 ]. This dual impact on physical and mental well-being can create a vicious cycle, ultimately undermining confidence and the capacity for self-management [ 11 ]. Symptom burden can have a significant negative impact on an individual’s physical, psychological, social, and spiritual well-being [ 12 ].

Currently, patients in laminar flow cleanrooms rely primarily on the support of healthcare providers (HCPs). Serving as the only point of contact with patients during isolation, HCPs are responsible for providing specialized clinical care, conveying essential health information, continuously assessing patient conditions, administering timely interventions if symptoms or complications occur, and ensuring daily care. However, the current clinical reality demonstrates the difficulty in meeting each patient’s individualized 24/7 symptom management needs and capturing subtle changes in real time [ 13 ]. Evidence suggests a relationship between reduced symptom burden and effective self-management [ 14 ]. Symptom self-management is defined as a dynamic, self-directed process in which individuals implement behaviors aimed at identifying, preventing, alleviating, or reducing the incidence, frequency, duration, intensity, and degree of distress, complications, and unpleasant emotions associated with symptoms, all of which help to achieve optimal body function [ 15 ]. Active self-management, as the patient is the first person to perceive symptoms, is key to achieving early recognition and timely response. However, several studies have highlighted that the current state of symptom self-management remains unsatisfactory [ 11 , 16 ]. Many patients experience internal predicaments when managing their symptoms owing to a lack of information, symptom coping skills, and inadequate symptom perception [ 17 ]. In addition, patients who are inexperienced or unfamiliar with self-management strategies, particularly those receiving treatment for the first time, may experience negative emotions, such as anxiety and fear, and a sense of losing control over their health [ 11 ]. In contrast to other HSCT contexts, patients in isolation settings are restricted from direct contact with family members. The previous model, in which family members shouldered the primary caregiving responsibilities, has been disrupted, leading to the absence of key care roles [ 18 ]. Familial involvement may increase the patients’ motivation in self-management [ 19 ]. Patients engaged in family caregiving demonstrated greater adherence to self-management programmes than those who were not, suggesting that a lack of such involvement can be a detrimental factor [ 20 ]. This highlights the urgent need to develop and implement effective symptom self-management interventions.

Therefore, it is imperative to explore the requirement for self-management of symptoms in this population. The morbidity and distress caused by HSCT-related symptoms can result in various demands [ 21 ]. While the current research highlights the significance of symptom self-management for HSCT patients [ 17 , 22 ], it rarely addresses the specific needs of these patients, particularly those within laminar airflow rooms. Gaining a comprehensive understanding of these needs is crucial to guide the design and implementation of effective symptom management in HSCT patients.

Methods

Study design

A descriptive qualitative study was conducted from October 2023 to January 2024 using semi-structured face-to-face interviews. Symptom management theory (SMT) consists of three core concepts: symptom experience, components of symptom management strategies, and outcomes [ 23 ]. This theory can serve as a guide to explore symptom experiences, evaluate management strategies, and measure adverse outcomes. Therefore, we used SMT for the qualitative study design, which also served as an interview guide for this study. We adopted descriptive qualitative methods to explore symptom self-management strategies, aiming to identify the barriers and needs for symptom self-management in adult patients with HSCT within laminar airflow rooms. We used the SMT as the theoretical framework, and the study was conducted in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [ 24 ].

Setting and participants

We recruited participants from a HSCT center of a large tertiary hospital in Fujian Province, China. The HSCT center is the largest transplant center in Fujian Province, with 32 single-bed transplant wards. The HSCT ward is an unaccompanied laminar airflow room where family members and caregivers are not allowed to enter. The protective isolation protocol at this center established a standardized clinical pathway and a highly controlled care environment. Patients were confined to laminar airflow rooms continuously from the initiation of conditioning phase until hematopoietic engraftment. Their daily care was facilitated by a dedicated nursing team with a nurse-to-patient ratio of approximately 1:1.5, integrated with daily ward rounds. As visitors were not permitted, patients’ only source of human contact was with staff, who completed a rigorous sequence of hand disinfection, sterile gowning and mask fitting upon entering the room. Within the cultural context of China, where family members are typically deeply involved in hands-on care and daily support, the isolation protocol redirected all immediate, in-person dependencies for daily needs and problem-solving exclusively to HCPs. Purposive sampling was conducted for participant recruitment and data collection from October 2023 to January 2024. Inclusion criteria were (a) 18 years old and above; (b) undergoing HSCT for the first time; (c) were aware of their diagnosis and prognosis; and (d) able to communicate fluently in Mandarin. The exclusion criterion was a current or past mental illness. Maximum variation sampling was used to recruit a heterogeneous sample of patients according to age, sex, education, marital status, type of HSCT, donor source and disease diagnosis.

All participants were recruited face-to-face by a researcher, QHC. Initially, the researchers reviewed the patients’ medical records for sociodemographic and disease characteristics. Next, we established contact with the patients, explained the purpose and content of the study, and obtained written informed consent.

Data collection

To further adjust and refine the draft interview guide, the female researcher, QHC, purposively selected two eligible patients for a pre-interview, modified the interview guide based on their feedback, and developed the final interview guide (Table 1 ).

Table 1 Interview guide 1. How did you manage and cope with the symptoms you experienced in laminar airflow rooms? 2. Did you encounter any difficulties during the coping process? What sources of support did you seek? 3. How did you obtain information regarding symptom self-management? What difficulties did you encounter? What types of support would be helpful? 4. If a platform were available to assist you with symptom self-management, how would you prefer its design to be implemented? Abbreviations: HSCT, hematopoietic stem cell transplantation

Each interview was conducted by QHC to ensure consistency. Prior to the interviews, the interviewer systematically conducted in-depth theoretical studies of the relevant research and was mentored by a professor with extensive experience in qualitative research. The interviews were in-depth, one-on-one, and took place in a single transplant ward, with no other people present. The interview time was usually between 15:30 and 16:30 or between 18:30 and 20:00 to avoid the time when the patient was undergoing treatment, resting, or eating. All interviews were audio-recorded, and the interviewees’ facial expressions and body language were recorded. When no new codes were extracted, the data were considered saturated, and another patient was interviewed to determine data collection saturation.

Data analysis

Data collection and preliminary analysis were conducted concurrently and data collection ended when data saturation was reached. Demographic data were analyzed using IBM SPSS Statistics, version 26.0. Two researchers, QHC and JYC, verified the accuracy of the transcribed text before analysis, and the recordings were professionally transcribed within 48 h. Content analysis methods were used to analyze the qualitative data [ 25 ]. Two researchers with experience in HSCT, including one doctoral nursing researcher, JYC, and one master of nursing researcher, QHC, analyzed the data to reduce subjectivity. The data were encoded using NVivo (release 1.2, QSR). Throughout the interview process, field notes were taken to capture contextual information, non-verbal cues, and reflections, which were analyzed alongside the transcribed texts to enrich the data interpretation. First, researchers independently listened to the audio recordings multiple times to gain a clear understanding of the content and then carefully reviewed each interview transcript to conduct the coding process. During the coding and thematic analysis, particular attention was paid to potential variations in experiences based on participants’ disease diagnoses. Final themes and subthemes were developed through discussions between the two researchers. In the case of any disagreements regarding the extracted themes, an experienced nursing professor, RH, was consulted to determine the most appropriate theme. This process ensured the rigor and validity of the findings.

Rigor

Multiple strategies were used to ensure rigor. First, to ensure a representative sample, sampling strategies considered the participants’ age, sex, marital status, education, and transplant type. Second, to ensure credibility and reduce subjectivity, we used investigator triangulation, in which two researchers independently extracted themes during data analysis. Third, to conduct reliable research and ensure the validity of the results, all researchers received rigorous training in qualitative research methods through a program covering interviewing techniques, thematic analysis, and coding procedures. This provided them with the skills and knowledge necessary to conduct reliable research and ensure validity of the results. Finally, to enhance confirmability, researchers were actively engaged in self-reflection through team debriefings.

Ethical considerations

This study was approved by the Ethics Committee of the Fujian Medical University (IRB Ref No: 2023/83), and it adhered to the ethical principles outlined in the Declaration of Helsinki. All participants provided both verbal and written informed consent prior to participation. The participants volunteered their time and were not financially compensated for their participation. To ensure confidentiality, all data were anonymized and personal identifiers were removed from the transcripts.

Results

The interview transcripts presented in the results were translated by the bilingual research team.

Characteristics of the participants

A total of 23 patients were contacted for this study, of which 1 patient refused to be interviewed because of illness. Consequently, 22 patients were included in the final analysis. Interview duration averaged 23 min. The patients’ ages ranged from 18 to 56 years, with a median of 34.5 years. Other characteristics of the patients are summarized in Table 2 .

Table 2 Demographic and clinical characteristics ( n = 22) Variables N (%) Sex Male 8(36.36) Female 14(63.64) Education level Primary school or below 1(4.54) Junior high school 7(31.82) Senior high school 3(13.64) Bachelor’s degree or above 11(50.00) Marital status Married 13(59.09) Single, divorced, or widowed 9(40.91) Diagnosis Leukemia 14(63.64) Lymphoma 2(9.09) Multiple myeloma 3(13.64) Myelodysplastic syndrome 2(9.09) Aplastic anemia 1(4.54) Type of transplant Autologous HSCT 5(22.73) Allogeneic HSCT 17(77.27)

Fundamental themes

Three themes and 11 subthemes reflecting the barriers to and the need for symptom self-management were observed among patients who underwent HSCT (Fig. 1 ). These themes included limited awareness of symptom self-management, barriers to information acquisition, and multidimensional support needs.

Fig. 1 Themes and subthemes

Theme 1: limited awareness of symptom self-management

Subtheme 1: dependency

Some patients exhibited a high level of dependency on symptom management. They expressed concerns about the potential risks of taking independent actions, fearing that incorrect self-management might worsen their condition. These patients often believe that guidance from HCPs is the only valid method to manage their symptoms, thereby neglecting the important role of self-management in the disease treatment process.

“There’s no way to deal with it. I don’t know what there is to deal with. Tell the doctor that it’s best if I do whatever he tells me to do. Otherwise , it’s worse if I make a mistake.” (P15) .

“If the doctor gives me medicine and tells me to take it , I take it; if he tells me to endure it , I endure it. I will do whatever the doctor says.” (P17) .

In addition, some patients reported that family members played a protective role during the treatment process, aiming to reduce their psychological burden and decision-making responsibilities. However, this may limit the patients’ autonomy and sense of responsibility in self-management, further intensifying their reliance on others.

“Well , I have sick so everything else is handled by my family… I don’t know much about my condition; it’s mostly my husband and my sister who talk to the doctor.” (P7) .

“My family basically does all these things (related to the treatment of the disease) , so I don’t want to know any more about it. I just need to lie over here and cooperate with the treatment.” (P10) .

Subtheme 2: passive suffering

The symptoms experienced during HSCT, including nausea, vomiting, and fatigue, as well as practical issues, such as vascular access, have been shown to significantly deplete patients of energy and motivation. This physical challenges makes it difficult for patients to translate their self-management intentions into actions, thus resulting in a pattern of passive suffering where they endure the discomfort until it reaches an intolerable level. This phenomenon has been most frequently reported among patients undergoing high-intensity conditioning, reflecting their sense of helplessness and passivity in symptom self-management.

“When I experience nausea and vomiting I usually tolerate it. For example , when I have diarrhea , the whole person will be more tired and I will have less appetite. In this case , I probably wouldn’t be able to get much help from the nurse. ” (P5) .

“I tend to endure it if possible , but if I really can’t bear it anymore , there’s nothing I can do because I’ve already tried my best……I thought about exercising here , but I felt so exhausted that I decided against it. I might as well be a couch potato , since that was my initial plan—to do some radio calisthenics. After attempting just two sets , I found my hands and feet incredibly tired. I told myself , ‘Forget it , better be obedient and not engage in unauthorized activities.’” (P19) .

Theme 2: information acquisition barriers

Subtheme 1: lack of courage and skills in communication

Due to the lack of knowledge and skills in symptom self-management, patients often rely on HCPs and their peers as their preferred sources of information. However, some patients lack the courage and skills to communicate, and they choose to avoid in-depth discussions with others for fear of increasing their psychological distress or receiving inappropriate advice. Patients also find it difficult to express their doubts to HCPs. These communication barriers limit the access to valuable information regarding symptom management and self-care.

“Everyone has their own difficulties; asking too many questions might , in turn , cause others to feel psychologically uncomfortable , or perhaps they might find it hard to express themselves , right? So I seldom ask about these things.” (P6) .

“One is the embarrassment of asking , for example , I feel the medical staff might think. Isn’t it just a fever? Just lie down quietly. I think that to myself and I’m too embarrassed to ask. I’m not sure if asking would even lead to a solution or anything. It’s just like that. The key is that I don’t know how to ask.” (P20) .

Subtheme 2: clinician time constraints

As the primary point of contact for patients in laminar airflow wards, HCPs perform essential medical procedures and provide daily care. Nevertheless, the consequences of understaffing and excessive workloads frequently manifest in suboptimal communication between HCPs and patients. Patient reports indicate that within laminar airflow environments, clinician time constraints significantly reduce opportunities for comprehensive patient-provider communication and delivering individualized care. This can result in patients’ information needs not being met.

“I just feel that the doctors here are really too busy… Just these few doctors have to deal with so many of our patients.” (P6) .

“I also wish the nurses could communicate with me more and teach me more. For example , how to prevent vomiting and how to deal with fatigue.” (P13) .

Subtheme 3: overwhelming and diverse online information

Patients generally lack a deep understanding of HSCT and attempt to find answers online. However, the vast amount of information available online, coupled with its variability, makes it difficult for patients to identify accurate, authoritative, and personally relevant information. This information overload increases patients’ anxiety and uncertainty, which affects their self-management of symptoms.

“At present , I’m still in a state of confusion. I just search online for some fragmented information , which isn’t very accurate. I don’t know who to trust; there are various opinions and different perspectives.” (P11)

These are all pretty much the same, just for reference, you can’t trust them completely.

Theme 3: multidimensional support needs

Subtheme 1: need for proactive symptom management

Patients demonstrated strong concern about potential symptoms that may arise during transplantation (such as diarrhea and vomiting), expressing a desire to understand the causes of these symptoms and take self-management measures to prevent their occurrence. Some patients believe that preventing these symptoms is more important than treating them, particularly when the symptoms appear without a clear cause, which often leads to anxiety.

“For example , when I have diarrhea , I just want to ask what I should do. I don’t know why I have diarrhea , because I usually eat normally , so of course I worry , why suddenly diarrhea?” (P3) .

“Symptoms like vomiting , diarrhea , mouth ulcers—how to prevent them in advance , I think that’s more important , more important than treatment.” (P11) .

“Also , generally when such things happen , the financial situation is often difficult , so I try to avoid it , like preventing infections , and also , if possible , it would be best if eating problems can be resolved.” (P1) .

Subtheme 2: timely and effective symptom response need

During HSCT, patients typically experience multiple symptoms of discomfort that affect their physical and mental states. Some patients mentioned taking certain self-management measures to cope with various symptoms during transplantation, but they found the effects unsatisfactory.

“For vomiting , if you keep suppressing it , it won’t go away. You have to throw it all up , then it stops. Afterward , drinking a bit of water to cleanse the mouth is fine. Then , if you have an appetite , eat a little more , but if you don’t , just let it go; otherwise , vomiting is very uncomfortable.” (P19) .

Therefore, the patients expressed a desire for more effective self-management strategies to relieve symptoms and reduce discomfort.

“I want to know when symptoms like vomiting will ease a bit. When will the discomfort in my body subside?” (P13) .

“I’m relying on my little bit of experience to stop vomiting , besides medication , and I’ll ask the nurse if there’s anything they can help me with. I also hope the nurse can communicate with me more and teach me more , like how to stop vomiting and how to deal with fatigue.” (P14) .

Subtheme 3: internal support and self-regulation

Many patients facing physical discomfort brought about by illness and treatment, experience psychological pressure and distress. However, only a small number of patients reported being able to independently adjust their mindsets and emotions, drawing on internal support to better manage symptoms and cope with challenges during treatment, thereby promoting recovery.

“When I’m not feeling well , I just don’t want to talk , but everything else is fine. When I can’t eat , I get irritated and want to take it out on my family.” (P12) .

“Illnesses need to be treated. Crying and complaining is also part of the treatment , and then we continue to cooperate; maybe the outcome will be better.” (P2) .

“We need to regulate our mindset , face it bravely.” (A10) .

Subtheme 4: longing for family and friends’ support and companionship

During HSCT, the patients highly value the support and companionship of their families and friends. Through visits, emotional encouragement, and social support from loved ones, patients gain psychological comfort and strength, particularly when experiencing physical discomfort and fatigue. Additionally, concerns, words of consolation, and encouragement from friends contribute to providing comfort and emotional support and enhance their confidence in self-coping.

“The greatest help from family members is to take care of the logistical support for us , such as preparing the three meals , and also providing some emotional comfort… Ideally , it would be great if the visit could happen , too. (Because) here (the patient points to the transparent visitation window in the room) , it was originally possible to visit , but I heard that later the visitation was stopped due to the COVID-19.” (P11).

“Sometimes I tell my friends that I’m so tired , and they comfort me with a few words. Just hearing that makes me feel a bit more at ease.” (P19).

Subtheme 5: peer support

Peer support from fellow patients plays an important role in patient self-management. The shared identity as patients undergoing similar medical experiences creates a foundation of trust and mutual understanding, enabling the exchange of nuanced, practical knowledge that may not be covered in standardized patient education. The majority of patients expressed a desire to communicate with others who have similar experiences, hoping to exchange medical information, gain practical self-management strategies, and gain psychological comfort and strength.

“I have a friend who just left here about a month and a half ago. I’ve talked to her a bit. I’ve also met some other patients at this hospital before. We’d all mention some things to pay attention to during our chats.” (P1) .

“We encourage each other and share knowledge , such as how to deal with symptoms when they occur.” (P21).

Subtheme 6: looking forward to an interactive information platform

Patients expressed their anticipation of an interactive information platform that would enable them to conveniently access professional information. Additionally, they conveyed their preferences for the platform design.

“It’s about the different symptoms that appear at different stages , and then there will be a record like this. I think it’s quite good.” (P12).

“Most nurses are female , while I am male. For instance , some (perianal care guidance) might be a bit inconvenient. It would be great if help could be provided online to solve the problem.” (P10).

“For instance , for patients who have had treatment experiences within laminar airflow rooms before , if their messages , experiences or encouragement are left and seen by us , they should all be of some help to us.” (P13).

Discussion

This study aimed to explore the barriers and needs related to symptom self-management among patients in laminar airflow rooms who underwent HSCT. The findings indicate that patients with HSCT face diverse barriers to symptom self-management, including limited awareness, difficulty in obtaining information, and the need for multidimensional support.

Effective self-management is crucial for improving treatment outcomes and recovery [ 26 ]. However, we found that some patients exhibited limited awareness of symptom self-management and were highly dependent on HCPs and their families. This may stem from a subconscious perception of weakness, a medical culture that emphasizes professional authority over patient involvement and lack of self-management knowledge. Additionally, discomfort, limited social support, and poor communication with HCPs may contribute to this issue [ 27 – 29 ]. Pronounced reliance on family members can be understood as a manifestation of a paternalistic patient-family relationship, which is often influenced by cultural values that prioritize familial responsibility and authority. In such cultural contexts, family members are regarded as the primary decision-makers in healthcare. This relational dynamic can further diminish the patients’ awareness and motivation to engage in self-management [ 30 , 31 ]. We also found that the majority of patients opted to “endure” discomfort, a behavior potentially influenced by the cultural norm of “endurance” [ 32 ]. In this context, minor ailments are often seen as challenges to be endured rather than actively addressed, which may limit the patients’ willingness to seek proactive solutions or engage in preventative care.

Although some patients were aware of self-management, practical barriers hindered their effective use. Access to reliable scientific information is critical for symptom management, infection prevention, and quality of life improvement [ 33 ]. Patients often turn to Baidu, RedNote, or Tiktok for related information, but the overload and variable quality of information make it difficult to identify trustworthy and helpful content. In addition, the busy schedules of HCPs and patients’ psychological concerns limit timely and effective guidance. The issue of the patients’ psychological concerns is congruent with the findings of Nickola et al. [ 34 ]. In their study, an important aspect for patients with cancer was the fear of being refused, similar to that expressed by patients with HSCT in our study. Previous research has shown that self-management efficacy in patients with HSCT is negatively correlated with passive coping strategies. This finding indicates the need for enhanced self-management education to help patients develop proper awareness, increase their confidence in symptom self-management, and offer consistent and accessible support throughout the process [ 35 , 36 ].

This study showed that patients required multidimensional support within laminar airflow rooms, highlighting a strong desire for information on symptom self-management. Some patients expressed interest not only in learning how to manage symptoms but also in understanding their causes and receiving early prevention information. Most participants were particularly concerned with identifying effective self-coping strategies to alleviate their discomfort as quickly as possible. This aligns with the findings of Nguyen et al. [ 37 ], who found that mastering the knowledge of symptoms and symptom relief skills can help patients overcome self-management difficulties and alleviate various symptoms. Furthermore, the fact that majority of the patients in this study wished to manage their symptoms with the help of an interactive information platform further demonstrated their quest for improved symptom self-management. These needs underscore the importance of a care approach that emphasizes the early identification, comprehensive assessment, and proactive management of distressing symptoms to alleviate suffering [ 38 ]. Our findings also showed that social support, particularly from family and peers, plays a critical role in the emotional well-being of patients. Family support is especially crucial, as it provides both material and emotional reassurance [ 39 ]. One study demonstrated that patients undergoing HSCT who received strong family support showed better symptom management and faster recovery [ 40 ]. However, the limitations of laminar airflow rooms, which restrict direct contact with family members, mean that patients should rely on digital forms of communication, such as video calls and text messages, to maintain these vital emotional connections. This is consistent with the cultural context in which families are seen as a primary source of emotional security, with patients frequently turning to family members for comfort.

Additionally, peer support emerged as a significant need in our study, with patients recognizing its potential benefits, such as fostering emotional resonance and providing shared experiences that can reduce psychological distress and improve the overall quality of life [ 41 , 42 ]. Amonoo et al. [ 43 ] also noted that, while opportunities for peer support may be limited, their importance is still acknowledged by patients. However, ensuring the quality and relevance of peer interactions remains challenging. Patients have raised concerns about the applicability of peer-sharing strategies, highlighting the risk that misinformation or poor communication may exacerbate the psychological burden [ 44 ]. This concern underscores the importance of HCPs being vigilant in guiding peer interactions to avoid negative outcomes, as emphasized in previous research [ 45 ].

In addition, some patients demonstrated self-regulation, drawing on internal strength to cope with the challenges of HSCT. Self-motivation, which includes traits, such as optimism and self-confidence, complements external support systems and is essential for navigating the challenges of HSCT treatment. The findings of Biagioli et al. [ 46 ] support our observation, showing that patients who cultivate internal resilience mechanisms, such as optimism, experience better recovery and overall well-being. However, in our study, only a minority of participants reported being able to mobilize such internal resources effectively. The psychological distress problems of patients continue to persist [ 47 ]. Individual’s social network plays a significant role in their mental health. This disparity between the potential benefit of self-regulation and patients’ frequent inability to utilize it indicates the importance of providing external psychosocial support for this group, rather than relying solely on the patients’ own coping abilities [ 48 ].

To effectively address the multidimensional support needs of patients in symptom self-management, this study proposes the following solutions: (1) Enhanced Clinical Education Systems: Clinical nursing staff should prioritize enhancing symptom education, especially during critical phases such as the protective isolation period of HSCT, when the symptom burden is most severe. Comprehensive guidance on symptom self-management should be provided to empower patients to manage their symptoms effectively. (2) Social Support Optimization: Social support systems, including family members and peers, play a crucial role in helping patients build psychological resilience. Optimizing social support through training, assessment, and supervision can promote proactive coping strategies. Professional guidance should be provided when necessary to ensure that patients receive appropriate support. (3) Technology-enabled Support Platforms: The development of specialized online platforms that utilize mobile health technologies can offer patients a safe environment for receiving support and sharing information. These platforms would maximize emotional support, facilitate information exchange, and foster a sense of community. (4) Encouraging Positive Perspectives: Clinical interventions should focus on helping patients recognize the positive aspects of their lives. By guiding patients to identify the sources of hope and motivation, HCPs can enhance their confidence and drive them to manage their symptoms effectively. These strategies may help bridge the gap between current clinical practices and individualized needs of patients, thereby promoting better symptom management outcomes.

Limitations

Some limitations of the qualitative approach of this study should also be noted. First, the use of an interview guide may have influenced the final themes. Patients should have rather been allowed to speak freely without prompts. Second, although the participants in this study were from multiple provinces across the country, which enhanced the geographic diversity of the sample, the single-hospital setting limited the generalizability of the findings. Significant variations in healthcare resources, socioeconomic factors, and regional policies between provinces may have affected the broader applicability of our results. Finally, the study participants were all adults; therefore, the findings may not be applicable to children, adolescents, or the older population.

Conclusions

Despite the limitations, our qualitative study provides insights into the barriers to self-management, including limited awareness of self-management, difficulties in accessing reliable information, and the need for multidimensional support within laminar airflow rooms. Patients expressed a strong desire for information and social support from family, peers, and HCPs as well as an interactive information platform. These findings suggest that HCPs should enhance patient symptom education, particularly during the protective isolation phase of HSCT. Furthermore, the involvement of family and peer support systems is essential to enhance psychological resilience and promote proactive coping strategies. Ultimately, the provision of comprehensive and tailored support may empower patients to better manage their symptoms, which would improve their overall quality of life.

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Qionghong Chen and Jingyi Chen contributed equally to this work.

Acknowledgements

We thank all the involved personnel that contributed to this research. This study could not have been accomplished without the contribution of the patients who agreed to participate.

Authors’ contributions

Qionghong Chen: Writing – original draft, Investigation, Formal analysis, Data curation, Conceptualization.Jingyi Chen: Writing – review & editing, Formal analysis, Data curation.Chengyang Li: Writing – review & editing, Data curation.Xinyue Fang: Data curation.Yong Wu: Resources, Project administration.Rong Hu: Writing – review & editing, Supervision, Methodology.

Funding

This work was supported by the 2023 Fujian Provincial Middle-aged and Young Teachers Education and Scientific Research Project (Science and Technology Category) (JAT231032).

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study was approved by the Ethics Committee on Biomedical Research of Fujian Medical University (reference number 2023/83). It conformed to the principles of the Declaration of Helsinki.

Informed consent was obtained from all individual participants included in the study.

Consent for publication

The authors affirm that participants provided informed consent for publication of their de-identified quotes from the interviews.

Competing interests

The authors declare no competing interests.

Abbreviations

Hematopoietic stem cell transplantation

Healthcare providers

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