Care experiences of primary family caregivers during the transition period for Allo-HSCT patients leaving the sterile laminar flow ward: A Qualitative Study

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Methods Using the phenomenological research method in qualitative research, purposeful sampling was employed to conduct semi-structured interviews with primary family caregivers of allogeneic hematopoietic stem cell transplant patients at the Bone Marrow Transplant Center of a tertiary-level hospital in Jinan City, Shandong Province, China. Data were coded, categorized, and themes were extracted using Colaizzi's 7-step analysis method. Results A total of 15 participants were included, yielding three themes: role transition and role overload leading to increased emotional stress, insufficient caregiving knowledge and fragmented information increasing caregiving challenges, and personal resource depletion resulting in caregiving dilemmas. Conclusion primary family caregivers of Allo-HSCT patients have negative caregiving experiences, with some caregiving needs remaining unmet. The study results call for healthcare providers to promptly address and repeatedly assess caregivers' multidimensional needs and caregiving challenges, incorporate the perspectives of primary family caregivers into post-transplant patient rehabilitation care, and establish diversified support mechanisms for cancer rehabilitation within the Chinese healthcare system. allogeneic hematopoietic stem cell transplantation post-transplant transition period primary family caregivers caregiving experiences and needs qualitative research Introduction Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is currently an important method for treating hematological malignancies [ 1 ] . Patients undergo chemotherapy pretreatment, stem cell infusion, and hematopoietic reconstitution within a sterile laminar flow chamber [ 2 , 3 ] . The entire treatment cycle imposes significant physical and mental strain not only on patients but also on their primary family caregivers. Primary family caregivers [ 4 ] are individuals who live with the patient, spend the most time providing physical, emotional, and daily care, and do so without compensation. Within the closed sterile laminar flow ward, they can only communicate with the patient via phone or video, while other patient needs are met by medical staff. Upon returning to a general ward or home care, this does not signify the patient’s disease has been cured, Rather, the responsibility for managing the patient's symptoms increasingly shifts from the hospital to the family, with primary family caregivers—non-professional caregivers—assuming the nursing responsibilities originally assigned to healthcare professionals during hospitalization. These include managing pain and fatigue symptoms, managing medications, preventing infections [ 5 , 6 ] ,providing emotional support, facilitating effective communication between patients, caregivers, and healthcare providers, and engaging in self-education throughout the process [ 7 ] . Primary family caregivers with unclear skills in patient care and disease knowledge will directly participate in patient care, and the critical moment of transitioning out of the sterile laminar flow chamber during the transition period is undoubtedly a major challenge. A study reported that 89% of primary family caregivers described this care pressure as traumatic [ 8 ] . “Transition” refers to the process of shifting from one state, stage, or form to another [ 9 , 10 ] .Transitional care model (TCM) is a care model used during the treatment and rehabilitation stages of a disease, where patients require transfer and transition between healthcare institutions at various levels or between different healthcare departments within the same institution due to changes in the diagnostic and treatment environment and care needs [ 11 ] . The importance of this during the transition period is not only reflected in medical personnel, but also deserves exploration from the perspective of caregivers [ 9 ] . Fitch's Supportive Care Needs Theory [ 12 ] proposes addressing caregivers' physiological, informational, psychological, emotional, spiritual, social, and practical needs [ 13 , 14 ] to understand their care experiences [ 15 ] . Currently, healthcare systems rarely address the unmet needs of primary family caregivers as part of patient care plans. This study uses the Caregiver Needs Theory and Timing Theory as theoretical models, conducting semi-structured interviews with primary family caregivers of Allo-HSCT patients to deeply explore their care needs and experiences during the transition period after patients leave the sterile laminar flow ward, aiming to provide new insights for clinical care. 1Methods 1.1Research Design This study employs the phenomenological research method within qualitative research to explore the caregiving experiences and needs of primary family caregivers during the transition period for patients undergoing Allo-HSCT. This study adheres to the Comprehensive Reporting Standards for Qualitative Research (COREQ). 1.2 Sample Purposive sampling was used to select primary family caregivers of patients who underwent Allo-HSCT at the Bone Marrow Transplantation Center of a tertiary-level hospital in Jinan City, Shandong Province, from October 2024 to June 2025 as the study subjects. Inclusion criteria: (1) Primary family caregivers of patients undergoing allogeneic hematopoietic stem cell transplantation who have transitioned out of the sterile laminar flow ward; (2) Age between 18 and 65 years; (3) Able to communicate normally. Exclusion criteria: (1) Severe cognitive impairment or inability to communicate normally; (1) Refusal to have the interview content recorded via audio or written documentation. All participants in this study provided informed consent and voluntarily participated in the study. Guided by descriptive phenomenological research methodology, with qualitative research data saturation as the criterion, 15 participants were included after interview information reached saturation. The general characteristics of the participants are presented in (Table 1 ). Table 1 General information of respondents (n = 15) Respondent Code Gender Age Educational level Occupation Relationship with patients Care experience Care time (hours) Duration of care (months) P1 Male 42 high school worker husband and wife No 14 7 P2 Male 50 junior high school freelance father and daughter No 15 12 P3 Female 48 junior high school freelance mother and daughter No 24 11 P4 Male 29 undergraduate worker husband and wife No 20 9 P5 Male 40 undergraduate worker husband and wife No 15 10 P6 Female 63 elementary school retirement grandparent and grandchild No 18 8 P7 Female 42 undergraduate retirement husband and wife No 22 10 P8 Female 41 elementary school farmer Mother and son No 24 9 P9 Male 32 graduate student worker husband and wife No 10 9 P10 Female 41 undergraduate worker mother and daughter No 8 8 P11 Female 54 elementary school farmer Mother and son No 24 15 P12 Female 42 junior high school farmer husband and wife No 16 4 P13 Male 48 high school freelance husband and wife No 12 12 P14 Female 40 undergraduate worker husband and wife Yes 12 8 P15 Female 31 undergraduate worker husband and wife No 14 12 1.3 Data Collection Methods All interviews were conducted by the first author using a one-on-one, face-to-face, semi-structured in-depth interview method to collect data, following the principle of information saturation. The interviews were conducted in the head nurse's office, beginning with casual topics to ease into the formal interview. During the process, the purpose, significance, and methods of the study were explained to the interviewees, and informed consent forms were signed. The interviews were conducted in a friendly and natural manner, with open-ended questions and no leading suggestions. The main interview content included the following: (1) What were your feelings when you were informed that the patient was about to leave the sterile laminar flow ward? (2) What were your primary supportive care needs when the patient left the sterile laminar flow ward? (3) What were the reasons for the unmet care needs? (4) What were your feelings and experiences during the care process? With the patient's consent, the entire interview was recorded, key points were promptly noted down, and the interviewee's facial expressions and body language were observed and recorded. The interview lasted 30 minutes. 1.4 Data Analysis Methods Within 24 hours of each interview, the results of each interview were analyzed by two researchers from the team (who had received training in qualitative data analysis methods). The identified themes were shared and discussed among the entire team until consensus was reached. Qualitative interviews were analyzed using Colaizzi's seven-step phenomenological data analysis method: (1) transcribing interview data into text for careful reading; (2) identifying important statements; (3) coding recurring, meaningful perspectives; (4) re-categorizing coded data; (5) integrating results to provide a detailed description of the research phenomenon; (6) condensing detailed descriptions into a structural framework; (7) returning to the research subjects for validation. 1.5 Ethical Considerations This study was approved by the Ethics Committee of Shandong First Medical University Affiliated Provincial Hospital. In accordance with the Declaration of Helsinki, all participants were informed that participation was voluntary, could be withdrawn at any time without any reason, and would not result in any negative consequences. Additionally, the data were kept confidential. To minimize costs, interviews were scheduled at times convenient for the participants. 2 Results 2.1 General Demographic Data This study included 15 participants, Average age 40. The relationships between the participants and the patients were as follows: 5 cases were parent-child relationships, 9 cases were spousal relationships, and 1 case was a grandparent-grandchild relationship. None of the primary family caregivers had prior caregiving experience or training. The daily caregiving duration ranged from a maximum of 24 hours to a minimum of 8 hours. For detailed information, please refer to Table 1 . 2.1 Role Transition and Role Overload Exacerbate Emotional Stress The primary family caregivers transitioned from being “family members” to “24-hour professional caregivers,” and the change in their caregiving roles led to a significant increase in mental stress and negative emotions. Nine participants exhibited weaker caregiving roles and expressed concerns about their ability to provide accessible and sustained care. 2.1.1 Panic from not transitioning into the caregiver role in a timely manner Primary family caregivers often lack adequate caregiving knowledge and skills and have not established caregiving routines. During the transition period when the patient moves out of the sterile laminar flow ward, caregivers may experience feelings of chaos, stress, and helplessness. The caregiver is an employed worker, and in his own words, recent work demands have left him with little time or energy: “The patient requires constant care in the later stages, but I haven't been able to coordinate my work schedule. The news came too suddenly, and I don't know what to do.” (P10) “My first reaction was, ‘So soon? I don't feel prepared to care for the patient yet.’” (P12, a female caregiver who participated in caring for the patient through four treatment cycles) When faced with a special patient who has just exited the sterile laminar flow chamber, the primary caregiver feels anxious and overly cautious, exhibiting self-doubt and self-criticism during the care process. The caregiver awkwardly scratched her head and muttered, “Before, I just had to cook for him and send him to the transplant ward entrance. The nursing inside was so rigorous and meticulous. Now that he's out, I'm afraid I'll be careless and not do a good job.” (P14) 2.1.2 Fear and Anxiety Regarding Changes in the Patient's Condition As a fully protected environment, the sterile laminar flow chamber allows specialized medical and nursing staff to continuously monitor changes in the patient's condition and perform various medical and nursing procedures. However, leaving the sterile environment reduces the sense of security for both patients and their families. Ten participants expressed anxiety about caring for patients during the high-risk period for complications. “Throughout the patient's treatment cycle, I have been meticulous and cautious. What concerns me most is whether the stem cell transplant will be successful after reinfusion and whether her body can withstand it afterward. I am afraid that the patient's condition may change, so whenever there is a change in test results, I become anxious and unable to sleep for several nights.” (P15) “I feel it's a bit too early to leave the sterile laminar flow ward now. Will my son experience changes in his condition after leaving? How capable are the medical staff outside? Are they adequately equipped? Can they respond promptly if issues arise?” (P8, a middle-aged woman caring for her son 24 hours a day) 2.1.3Confusion about the prolonged care period ahead Transplant therapy is a long and uncertain process. Medical uncertainties such as recurrence, rejection, and short- and long-term complications cause primary family caregivers to lose their sense of time regarding when they can return to normal life, leading to prolonged uncertainty. “The child has been inside for nearly a month, and I've been suffering for a month. Now that the transplant is over, how much longer will it take before we can be free?” (P11, an older mother caring for her son 24 hours a day) " This has truly been a dark period. When will it end?" (P3, covering her face and crying) Primary family caregivers not only face the prolonged care period but also endure the frustrations and hardships of the care process. “My wife frequently becomes irritable and is not proactive in following the doctor's treatment plan even in the sterile laminar flow chamber. Now that we've just left the sterile laminar flow chamber, she argues with me over every little thing that doesn't meet her expectations. Why can't she understand my situation?” (P4 is a 29-year-old primary caregiver) “It feels like caring for him is my sole responsibility. The entire family constantly monitors my caregiving actions and words. His sister, his parents—they only care about the patient. No one understands my hardships and difficulties. Other family members put a lot of psychological pressure on me.” (P7 is a woman who provides 22-hour uninterrupted care for a patient) 2.2 Insufficient care knowledge and fragmented information increase care challenges Post-transplant care for hematopoietic stem cell transplantation is extremely demanding, yet caregivers often receive only brief, fragmented verbal instructions in the hospital, followed by interference from online information, creating a vicious cycle of “knowledge gaps—information noise—mental exhaustion.” Eighty percent (12/15) of caregivers reported that this adds an invisible layer of burden to an already high-stress care task. 2.2.1 Need for diverse types of care information When primary family caregivers begin participating in patient care, the information required extends beyond assisting with meals and daily living activities. It also includes medication safety, emotional support, monitoring adverse reactions, and symptom management after the patient leaves the sterile laminar flow ward. Multiple primary family caregivers demonstrated a strong desire to acquire knowledge about multidimensional aspects of patient care. “Once the patient leaves the sterile laminar flow chamber, I will be the primary caregiver. How should I assist with her daily living activities? Are there any dietary restrictions? Can the patient engage in physical activity? How should I handle the items used?” (P6, an elderly participant over 60 years old who has been caring for her grandchild long-term) “Although I have a higher education, I lack medical-related information. Some medical knowledge is very profound and complex. Now that the patient has just been discharged from the ward, I also want to do something, but I don't know where to start or if I'm doing it correctly. I still need more guidance from doctors and nurses.” (P9, Doctor of Materials Science) When a patient's negative emotional reactions and adverse disease symptoms persist outside the sterile laminar flow chamber, primary family caregivers become more urgent in seeking relevant care information. “The symptoms were already bad in the sterile laminar flow chamber, with diarrhea lasting for several days. Upon returning home, how should such a special patient be cared for in the later stages? We still need to consult doctors and nurses more often.” (P10) Compared to ordinary caregivers, primary family caregivers of Allo-HSCT patients are more concerned about the patient's subsequent treatment and disease progression. “The child's father will still experience graft-versus-host disease, right? We want to understand the possible disease progression during the post-transplant care process, what we need to observe, and what symptoms to watch out for.” (P7) 2.2.2 Selecting clear and effective information from diverse sources In the information age, there is rarely a shortage of information. Instead, the abundance of information obtained through various channels often interferes with primary family caregivers' judgment and decision-making. Uncertainty is the most common obstacle to information for cancer patients' caregivers. “I often learn online, but there is an overwhelming amount of information available on the internet, in videos, and in brochures. I don't know how to filter through it all. It seems like I know a lot, but in reality, I'm still confused.” (P1) A caregiver expressed frustration: “The patient has been experiencing diarrhea during the transplant period. There are various opinions about the patient's diet, and I don't know which ones are true and which ones are false. I'm afraid that my mistakes might lead to a worsening of the condition.” (P8, a middle-aged rural woman with low educational attainment) 2.2.3 Reshaping Care Perceptions from a Modern Medical Perspective Modern medical diagnosis and treatment of diseases, as well as functional recovery and health maintenance after transplantation, have long transcended the traditional scope of “in-hospital medical practices.” For primary family caregivers, the entrenched belief that patients are entirely dependent on hospitals reinforces external locus of control and weakens self-efficacy. During the interviews, three participants exhibited poor initiative and blind optimism regarding the patient's post-transplant condition. “We are all non-professionals; when caring for the patient, there are some things we can't anticipate, and some tasks are beyond our capabilities. There are doctors and nurses outside, so we just need to perform basic care.” (P13, a 48-year-old male who is older and more stubborn) “After the transplant, there's nothing much to worry about. Being able to leave the sterile laminar flow ward means you're already halfway there.” (P2) On the other hand, primary family caregivers tend to focus too narrowly on certain aspects, leading to cognitive narrowing and overemphasis, often neglecting the realities of care. For example, caregivers often focus solely on the importance of a sterile environment, ignoring the impact of prolonged confinement and isolation in the treatment environment on the patient's psychological state. “The environment inside the sterile laminar flow ward is indeed sterile. Ordinary wards and home environments have too many bacteria. Even if the indicators meet the requirements, it's too early to leave the sterile laminar flow ward now. You should stay inside for a while longer.” (P1) 2.3 Personal resource depletion leads to caregiving difficulties Primary family caregivers endure both physical and psychological distress during the patient's treatment cycle. When the energy and time of primary family caregivers are overly depleted, it reduces their motivation to provide care and also fails to meet the patient's care needs. 2.3.1 Physical and mental exhaustion leads to expectations for family support During the transplant transition period, primary family caregivers may feel overwhelmed by the challenges of managing the patient's symptoms and disease progression, leading to expectations for assistance from other family members. “I'm getting older now, and I don't know how much longer I can keep going. My physical strength and abilities are declining. My children's parents are separated and not around, so there's no one to help me share the burden.” (P6, an elderly woman raising her grandson alone, expressed her helplessness) “I feel like I'm sick too. I often can't sleep for several nights. Sometimes I take a pill prescribed by the doctor for insomnia. I just tough it out. There's also a newborn baby at home who needs care, and my parents have already helped me a lot.” (P9) Overburdening the primary caregiver depletes their energy, reduces their motivation to provide care, and also fails to meet the patient's care needs. “There's also a child in school at home, and no one helps with childcare. Now I'm running back and forth between the hospital and school. Sometimes I'm very tired. The patient's meals are prepared hastily and not on time, and their clothes are washed carelessly. I'm no longer as meticulous and careful as before.” (P12, a female caregiver bearing the multiple pressures of caring for elderly family members, children, and patients) “When will this end? Life feels so bleak. I wish someone could take my place.” (P3, a female caregiver providing full-time 24-hour care for 11 months) 2.3.2 Self-neglect and strong social needs After leaving the sterile laminar flow chamber, patients rely on their primary family caregivers to meet all their needs beyond professional medical care. Caregivers devote a significant amount of time and energy to caregiving, which severely impacts their communication patterns, work performance, and social roles. “Now treatment is the most important thing for the whole family. There’s no time for personal social activities or leisure. There’s no time for myself. I’m constantly focused on him. The only topics of conversation are how the test results are today and what the treatment will be tomorrow.” (P5) “Now that the child has undergone the transplant, there can be no room for carelessness at this critical moment. I’ve taken another week off from work.” (P10) Primary family caregivers endure both physical and psychological strain during the patient's treatment cycle. They often exhibit negative emotions, hostility, and fatigue toward people and situations. “This has been a dark year. As a family member, I don't want to go through this prolonged ordeal again. Thinking about it makes me feel depressed, and I lose interest in everything.” (P13) 2.3.3 Insufficient economic support due to income disruption and mounting medical expenses The treatment cycle for malignant blood diseases is relatively long, and the costs associated with diagnosis, medication, and care impose a significant financial burden on families. Additionally, families must contend with the risk of disease recurrence following transplantation, often feeling overwhelmed by the prospect of further treatment. “I have to take time off work every day, and there are no other sources of income. To undergo the transplant, I’ve already borrowed a lot of money from family and friends. After the transplant, I still need to face the ongoing treatment, which will continue to require funds.” (P5 spoke with his head down, sounding dejected) “My child was just born, and there are expenses on all sides. My parents are also in poor health and take medication regularly. We never purchased major illness insurance, and we are now unable to afford the high medical expenses. We are now raising funds from society to meet the needs of the subsequent treatment.” (P4) 3 Discussion During the recovery phase following Allo-HSCT transplantation, primary family caregivers typically provide 24-hour care services daily and are highly involved in managing the patient's subsequent physical symptoms. This study recruited 15 participants, all of whom reported experiencing significant caregiving stress and severe psychological burdens during the caregiving process. This aligns with findings from multiple studies [ 16 , 17 ] , which indicate that family members of hematopoietic stem cell transplant patients exhibit the same frequency and severity of mental symptoms as patients themselves. A longitudinal qualitative study by scholar Tan on primary family caregivers of transplant patients showed that caregivers' emotional responses changed with the patients' symptoms, and they tended to hide their negative emotions more when they were with the patients [ 18 ] . Therefore, it is essential to prioritize the mental well-being of primary caregivers and provide targeted psychological interventions tailored to their specific characteristics. Before transplantation, assess and screen primary caregivers at risk [ 19 ] , and implement psychological interventions such as mindfulness training, stress management, psychological education, and cognitive behavioral therapy [ 20 , 21 ] . Effective coping skills can identify and improve stressors that cause psychological, emotional, and behavioral distress in primary caregivers, while also increasing awareness of stress-inducing factors and motivating primary family caregivers to actively cope. Clearly and accurately explaining the patient's prognosis to the primary family caregivers after cell therapy is also an important measure to reduce psychological distress in family primary caregivers [ 22 ] . Eighty percent of participants reported that insufficient care knowledge and fragmented information exacerbate care challenges. Education is not a one-time activity but requires adjustment based on the various stages of the Allo-HSCT process and the patient's disease status at the time of education [ 23 ] . Effective, continuous care is a fundamental requirement for primary family caregivers during the transition period out of the sterile laminar flow ward. Strengthening knowledge and cognition can alleviate the uncertainty caused by knowledge gaps among primary family caregivers and more effectively address patients' care needs [ 24 ] . Therefore, healthcare institutions should establish an integrated online-offline information platform [ 6 , 25 ] . Online, medical staff can use transplant-related WeChat official accounts, short video platforms, and WeChat groups to provide primary family caregivers and patients with health education videos, expert live lectures, and other resources; Offline, they can offer professional and authoritative knowledge and skill guidance to primary family caregivers and family members through on-site thematic lectures, distribution of guidance manuals, and nursing consultation sessions. For patients with special circumstances, a “one-patient-one-file” needs list should be established 24 hours before the patient leaves the transplant ward to reduce the care-related challenges faced by primary family caregivers. This should be done by creating a dynamically updated electronic record that integrates basic care knowledge and skills into a targeted health education plan. The interview results indicate that most primary family caregivers face various challenges, including physical exhaustion, poor health, social isolation, and economic pressure. However, their supportive needs remain unmet, consistent with the findings of quantitative studies [ 26 , 27 ] . Primary family caregivers, as the care group for patients receiving Allo-HSCT, should also be considered as recipients of healthcare professional care. Healthcare professionals should first guide primary family caregivers to practice self-regulation and self-management, such as maintaining a regular diet and good sleep patterns, and promptly regulating their emotional state. When they reach their physical and mental limits, they should actively seek family support and, if necessary, have other family members help alleviate the care burden. At the same time, healthcare professionals can establish caregiver peer learning groups to encourage caregivers to exchange and learn from one another. Support from peers can enhance personal emotions such as a sense of belonging, confidence, and self-esteem, thereby protecting individuals from the negative effects of stress [ 28 , 29 ] . The experiences of peers enable primary family caregivers to make advance judgments and preparations regarding care decisions, reducing fear and uncertainty while enhancing hope. Allo-HSCT is a challenging treatment that imposes a significant financial burden on families [ 30 , 31 ] . Prior to transplantation, thorough communication about financial matters should be conducted with patients and their families to help them prepare in advance. Explanations regarding the use of medical expenses and relevant medical insurance policies should be provided to families, and financial pressure should be alleviated through commercial insurance, major illness reimbursement, and other channels. Additionally, assistance should be provided in applying for Red Cross major illness assistance and charitable foundation transplantation-specific funds. This study also has limitations. The study subjects were limited to a single hospital, making it difficult to generalize the findings to other hospitals or countries. Additionally, with the increasing prevalence of paid caregivers, although all study subjects were primary family caregivers for patients, there were differences in the duration and frequency of care provided by each caregiver, as well as variations in their care needs. In the future, it may be beneficial to further refine the categorization and conduct more in-depth investigations into different types of caregivers. 4 Conclusions This study identified the care experiences and needs of primary family caregivers during the transition period of leaving the sterile laminar flow ward through qualitative interviews. The results indicate that primary family caregivers face significant care-related stress and negative care experiences, with some care needs remaining unmet. The findings urge healthcare professionals to promptly address and repeatedly assess caregivers' multidimensional needs and care-related challenges, and to establish diversified support mechanisms for cancer rehabilitation within China's healthcare system. Declarations 5 Ethics approval and consent to participate This study was approved by the ethics committee of shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, China (SWYX:NO.2023 − 423). 6Author contribution All authors contributed to the study conception and design, FF S collected the data, FF S and JH W analyzed and interpreted the data, FF S and XY L drafted the article. All authors read and approved the final manuscript. 7 Competing interest The authors declared that they have no conflict of interests. 8 Funding statement The authors declare that no funds, grants, or other support were received during the preparation of this manuscript. Author Contribution All authors contributed to the study conception and design, FF S collected the data, FF S and JH W analyzed and interpreted the data, FF S and XY L drafted the article. All authors read and approved the final manuscript. Acknowledgement We would like to express our gratitude to the primary family caregivers of patients who underwent hematopoietic stem cell transplantation for their participation in this study, for sharing their experiences, and for collaborating with healthcare professionals to contribute to the patients' recovery. We also extend our thanks to the research partners who contributed to this study, acknowledging their efforts in data collection and analysis.This study was supported by shandong Provincial Hospital Affiliated to Shandong First Medical University. The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript. References Zhang WJ, Ma LF, Wang ZHM, et al (2021) Investigation of limb muscle mass and influencing factors in patients undergoing allogeneic hematopoietic stem cell transplantation. Chin J Tissue Eng Re13:1999–2004. Li LCH, Guo YP (2022) Quality of life and influencing factors in leukemia patients after hematopoietic stem cell transplantation. Jilin Med09:2584–2586. 10.3969/j.issn.1004-0412.2022.09.092 Balassa K, Danby R, Rocha V(2021)Haematopoietic stem cell transplants: principles and indications. 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Transpl Immunol71:101535. doi: 10.1016/j.trim.2022.101535 . Epub 2022 Jan 7 Xie LL(2018)Construction and Application Research of a Caregiver Care Skills Training Course for Patients Undergoing Hematopoietic Stem Cell Transplantation. Soochow University, 2018. El-Jawahri A, Jacobs JM, Nelson AM, et al(2020)Multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation: A randomized clinical trial. Cancer126(8):1758–1765.doi: 10.1002/cncr.32680. Epub 2020 Jan 3 Song YY, Zhu XM, Lu Y, et al(2020)Study on the trajectory of changes in quality of life and influencing factors in patients undergoing allogeneic hematopoietic stem cell transplantation. Chin J Nurs06:867–872. doi: 10.3761/j.issn.0254-1769.2021.06.011 Eickmann S, Wolff D, Kobbe G, et al(2024)Barriers and Facilitators in Continuous Medical Education Related to Allogeneic Stem Cell Transplantation: A Qualitative Study of Physicians. Oncol Res Treat47(4):136–144. doi: 10.1159/000536429 Guo J, Liu L, He C, et al(2025)Traditional Chinese Baduanjin Exercise With Nursing and Peer Group Support in the Care of Patients After Allogeneic Hematopoietic Stem Cell Transplantation: Evaluation of Application and Survival Analysis. Cancer Nurs. Published online January 29. doi: 10.1097/NCC.0000000000001460 Dovern E, Nijland SJAM, Braamse AMJ, et al(2025)Study Changes in the quality of life of adults with sickle cell disease following allogeneic stem cell transplantation: A mixed-methods, prospective cohort study. Hemasphere9(3):e70100. doi: 10.1002/hem3.70100 Hill JA, Moon SH, Chandak A, et al(2022)Clinical and Economic Burden of Multiple Double-Stranded DNA Viral Infections after Allogeneic Hematopoietic Cell Transplantation. Transplant Cell Ther 28(9):619.e 1-619.e8 . doi:10.1016/j.jtct.2022.06.016 Additional Declarations No competing interests reported. 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Wang","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA6klEQVRIiWNgGAWjYBACNvnHBx98qJCQY2NvPvggoaKGsBY+hrRkwxlnbIz5eY4lGzw4c4ywFjmGHDNh3ra0xJkzctQkH7YwE+EwhmNpDLxthxM3HMhhq0hsYGPgb+9OwK+FsfnYA4lzh403HDh77EbiDhkGiTNnN+DXwsyWbmBQdlh2w8G+tBuJZ9gYDCRyCWhh4zGTSGA7zLjhMI9ZQWIbMxFaeIBaDrSlKc5s4zFjIE6LBFuyYQM4kNmSJRLOHOMh6Bf5GcwHH/8BRSUwTj/+qKiR42/vxa8FA/CQpnwUjIJRMApGAVYAAIVoTS5Puze8AAAAAElFTkSuQmCC","orcid":"","institution":"Shandong Provincial Hospital Affiliated to Shandong First Medical University","correspondingAuthor":true,"prefix":"","firstName":"Jianhong","middleName":"","lastName":"Wang","suffix":""},{"id":528196593,"identity":"25e590a9-3897-4a4c-be1d-54334bd67186","order_by":2,"name":"Xiaoyan Li","email":"","orcid":"","institution":"The Second Hospital, Cheeloo College of Medicine, Shandong University","correspondingAuthor":false,"prefix":"","firstName":"Xiaoyan","middleName":"","lastName":"Li","suffix":""}],"badges":[],"createdAt":"2025-08-21 12:23:17","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7426124/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7426124/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":93623327,"identity":"0d6b79db-b597-4f0a-9703-1c50e8610619","added_by":"auto","created_at":"2025-10-15 18:24:49","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":44173,"visible":true,"origin":"","legend":"","description":"","filename":"Manuscript.docx","url":"https://assets-eu.researchsquare.com/files/rs-7426124/v1/a488619ae35022cb032a270d.docx"},{"id":93623523,"identity":"22118d0c-ea83-40f4-8841-b8945b409642","added_by":"auto","created_at":"2025-10-15 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18:24:49","extension":"xml","order_by":3,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":96922,"visible":true,"origin":"","legend":"","description":"","filename":"280296a24c354116bd86ee080a4d69001enriched.xml","url":"https://assets-eu.researchsquare.com/files/rs-7426124/v1/6bce42e24504a69ba073fcb1.xml"},{"id":93623330,"identity":"6abb5445-c28d-4a51-94fd-5b104c278081","added_by":"auto","created_at":"2025-10-15 18:24:49","extension":"xml","order_by":4,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":93893,"visible":true,"origin":"","legend":"","description":"","filename":"280296a24c354116bd86ee080a4d69001structuring.xml","url":"https://assets-eu.researchsquare.com/files/rs-7426124/v1/677c66e5c1c5497319b51691.xml"},{"id":93623329,"identity":"3ab8a798-42d9-491f-b9ec-d5a8b21a2151","added_by":"auto","created_at":"2025-10-15 18:24:49","extension":"html","order_by":5,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":103776,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7426124/v1/2bb03b9f551a45dbdffc78af.html"},{"id":102964562,"identity":"bb88716d-1240-488d-aa5a-ef319f216b8a","added_by":"auto","created_at":"2026-02-19 04:22:48","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":995212,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7426124/v1/3eb299bf-a1ba-49b5-9f1b-d9f85f8ca757.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Care experiences of primary family caregivers during the transition period for Allo-HSCT patients leaving the sterile laminar flow ward: A Qualitative Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAllogeneic hematopoietic stem cell transplantation (Allo-HSCT) is currently an important method for treating hematological malignancies \u003csup\u003e[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]\u003c/sup\u003e. Patients undergo chemotherapy pretreatment, stem cell infusion, and hematopoietic reconstitution within a sterile laminar flow chamber \u003csup\u003e[\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]\u003c/sup\u003e. The entire treatment cycle imposes significant physical and mental strain not only on patients but also on their primary family caregivers. Primary family caregivers\u003csup\u003e[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]\u003c/sup\u003e are individuals who live with the patient, spend the most time providing physical, emotional, and daily care, and do so without compensation. Within the closed sterile laminar flow ward, they can only communicate with the patient via phone or video, while other patient needs are met by medical staff. Upon returning to a general ward or home care, this does not signify the patient\u0026rsquo;s disease has been cured, Rather, the responsibility for managing the patient's symptoms increasingly shifts from the hospital to the family, with primary family caregivers\u0026mdash;non-professional caregivers\u0026mdash;assuming the nursing responsibilities originally assigned to healthcare professionals during hospitalization. These include managing pain and fatigue symptoms, managing medications, preventing infections\u003csup\u003e[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]\u003c/sup\u003e,providing emotional support, facilitating effective communication between patients, caregivers, and healthcare providers, and engaging in self-education throughout the process \u003csup\u003e[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]\u003c/sup\u003e. Primary family caregivers with unclear skills in patient care and disease knowledge will directly participate in patient care, and the critical moment of transitioning out of the sterile laminar flow chamber during the transition period is undoubtedly a major challenge. A study reported that 89% of primary family caregivers described this care pressure as traumatic \u003csup\u003e[\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]\u003c/sup\u003e. \u0026ldquo;Transition\u0026rdquo; refers to the process of shifting from one state, stage, or form to another \u003csup\u003e[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]\u003c/sup\u003e.Transitional care model (TCM) is a care model used during the treatment and rehabilitation stages of a disease, where patients require transfer and transition between healthcare institutions at various levels or between different healthcare departments within the same institution due to changes in the diagnostic and treatment environment and care needs \u003csup\u003e[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]\u003c/sup\u003e. The importance of this during the transition period is not only reflected in medical personnel, but also deserves exploration from the perspective of caregivers\u003csup\u003e[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]\u003c/sup\u003e. Fitch's Supportive Care Needs Theory \u003csup\u003e[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]\u003c/sup\u003e proposes addressing caregivers' physiological, informational, psychological, emotional, spiritual, social, and practical needs\u003csup\u003e[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]\u003c/sup\u003eto understand their care experiences\u003csup\u003e[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]\u003c/sup\u003e. Currently, healthcare systems rarely address the unmet needs of primary family caregivers as part of patient care plans. This study uses the Caregiver Needs Theory and Timing Theory as theoretical models, conducting semi-structured interviews with primary family caregivers of Allo-HSCT patients to deeply explore their care needs and experiences during the transition period after patients leave the sterile laminar flow ward, aiming to provide new insights for clinical care.\u003c/p\u003e"},{"header":"1Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003e1.1Research Design\u003c/h2\u003e\u003cp\u003eThis study employs the phenomenological research method within qualitative research to explore the caregiving experiences and needs of primary family caregivers during the transition period for patients undergoing Allo-HSCT. This study adheres to the Comprehensive Reporting Standards for Qualitative Research (COREQ).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e\u003ch2\u003e1.2 Sample\u003c/h2\u003e\u003cp\u003ePurposive sampling was used to select primary family caregivers of patients who underwent Allo-HSCT at the Bone Marrow Transplantation Center of a tertiary-level hospital in Jinan City, Shandong Province, from October 2024 to June 2025 as the study subjects.\u003c/p\u003e\u003cp\u003eInclusion criteria: (1) Primary family caregivers of patients undergoing allogeneic hematopoietic stem cell transplantation who have transitioned out of the sterile laminar flow ward; (2) Age between 18 and 65 years; (3) Able to communicate normally. Exclusion criteria: (1) Severe cognitive impairment or inability to communicate normally; (1) Refusal to have the interview content recorded via audio or written documentation. All participants in this study provided informed consent and voluntarily participated in the study. Guided by descriptive phenomenological research methodology, with qualitative research data saturation as the criterion, 15 participants were included after interview information reached saturation. The general characteristics of the participants are presented in (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e).\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eGeneral information of respondents (n\u0026thinsp;=\u0026thinsp;15)\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"9\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRespondent Code\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eGender\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eAge\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eEducational level\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u003cp\u003eOccupation\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c6\"\u003e\u003cp\u003eRelationship with patients\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c7\"\u003e\u003cp\u003eCare experience\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c8\"\u003e\u003cp\u003eCare time (hours)\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c9\"\u003e\u003cp\u003eDuration of care (months)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP1\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e42\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ehigh school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e7\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP2\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e50\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ejunior high school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efreelance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003efather and daughter\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP3\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e48\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ejunior high school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efreelance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003emother and daughter\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e11\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP4\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e29\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e20\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP5\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e40\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP6\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e63\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eelementary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eretirement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003egrandparent and grandchild\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e18\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP7\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e42\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eretirement\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e22\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e41\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eelementary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efarmer\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eMother and son\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP9\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e32\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003egraduate student\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e9\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP10\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e41\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003emother and daughter\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP11\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e54\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eelementary school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efarmer\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003eMother and son\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e24\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e15\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e42\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ejunior high school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efarmer\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e16\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e4\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP13\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e48\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003ehigh school\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003efreelance\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e40\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e8\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eP15\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e31\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003eundergraduate\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003eworker\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003ehusband and wife\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c7\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c8\"\u003e\u003cp\u003e14\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c9\"\u003e\u003cp\u003e12\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e\u003ch2\u003e1.3 Data Collection Methods\u003c/h2\u003e\u003cp\u003eAll interviews were conducted by the first author using a one-on-one, face-to-face, semi-structured in-depth interview method to collect data, following the principle of information saturation. The interviews were conducted in the head nurse's office, beginning with casual topics to ease into the formal interview. During the process, the purpose, significance, and methods of the study were explained to the interviewees, and informed consent forms were signed. The interviews were conducted in a friendly and natural manner, with open-ended questions and no leading suggestions.\u003c/p\u003e\u003cp\u003eThe main interview content included the following: (1) What were your feelings when you were informed that the patient was about to leave the sterile laminar flow ward? (2) What were your primary supportive care needs when the patient left the sterile laminar flow ward? (3) What were the reasons for the unmet care needs? (4) What were your feelings and experiences during the care process?\u003c/p\u003e\u003cp\u003e With the patient's consent, the entire interview was recorded, key points were promptly noted down, and the interviewee's facial expressions and body language were observed and recorded. The interview lasted 30 minutes.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec6\" class=\"Section2\"\u003e\u003ch2\u003e1.4 Data Analysis Methods\u003c/h2\u003e\u003cp\u003eWithin 24 hours of each interview, the results of each interview were analyzed by two researchers from the team (who had received training in qualitative data analysis methods). The identified themes were shared and discussed among the entire team until consensus was reached. Qualitative interviews were analyzed using Colaizzi's seven-step phenomenological data analysis method: (1) transcribing interview data into text for careful reading; (2) identifying important statements; (3) coding recurring, meaningful perspectives; (4) re-categorizing coded data; (5) integrating results to provide a detailed description of the research phenomenon; (6) condensing detailed descriptions into a structural framework; (7) returning to the research subjects for validation.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003e1.5 Ethical Considerations\u003c/h2\u003e\u003cp\u003e This study was approved by the Ethics Committee of Shandong First Medical University Affiliated Provincial Hospital. In accordance with the Declaration of Helsinki, all participants were informed that participation was voluntary, could be withdrawn at any time without any reason, and would not result in any negative consequences. Additionally, the data were kept confidential. To minimize costs, interviews were scheduled at times convenient for the participants.\u003c/p\u003e\u003c/div\u003e"},{"header":"2 Results","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\u003ch2\u003e2.1 General Demographic Data\u003c/h2\u003e\u003cp\u003eThis study included 15 participants, Average age 40. The relationships between the participants and the patients were as follows: 5 cases were parent-child relationships, 9 cases were spousal relationships, and 1 case was a grandparent-grandchild relationship. None of the primary family caregivers had prior caregiving experience or training. The daily caregiving duration ranged from a maximum of 24 hours to a minimum of 8 hours. For detailed information, please refer to Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e\u003ch2\u003e2.1 Role Transition and Role Overload Exacerbate Emotional Stress\u003c/h2\u003e\u003cp\u003eThe primary family caregivers transitioned from being \u0026ldquo;family members\u0026rdquo; to \u0026ldquo;24-hour professional caregivers,\u0026rdquo; and the change in their caregiving roles led to a significant increase in mental stress and negative emotions. Nine participants exhibited weaker caregiving roles and expressed concerns about their ability to provide accessible and sustained care.\u003c/p\u003e\u003cdiv id=\"Sec11\" class=\"Section3\"\u003e\u003ch2\u003e2.1.1 Panic from not transitioning into the caregiver role in a timely manner\u003c/h2\u003e\u003cp\u003ePrimary family caregivers often lack adequate caregiving knowledge and skills and have not established caregiving routines. During the transition period when the patient moves out of the sterile laminar flow ward, caregivers may experience feelings of chaos, stress, and helplessness.\u003c/p\u003e\u003cp\u003eThe caregiver is an employed worker, and in his own words, recent work demands have left him with little time or energy: \u0026ldquo;The patient requires constant care in the later stages, but I haven't been able to coordinate my work schedule. The news came too suddenly, and I don't know what to do.\u0026rdquo; (P10)\u003c/p\u003e\u003cp\u003e\u0026ldquo;My first reaction was, \u0026lsquo;So soon? I don't feel prepared to care for the patient yet.\u0026rsquo;\u0026rdquo; (P12, a female caregiver who participated in caring for the patient through four treatment cycles)\u003c/p\u003e\u003cp\u003eWhen faced with a special patient who has just exited the sterile laminar flow chamber, the primary caregiver feels anxious and overly cautious, exhibiting self-doubt and self-criticism during the care process.\u003c/p\u003e\u003cp\u003eThe caregiver awkwardly scratched her head and muttered, \u0026ldquo;Before, I just had to cook for him and send him to the transplant ward entrance. The nursing inside was so rigorous and meticulous. Now that he's out, I'm afraid I'll be careless and not do a good job.\u0026rdquo; (P14)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec12\" class=\"Section3\"\u003e\u003ch2\u003e2.1.2 Fear and Anxiety Regarding Changes in the Patient's Condition\u003c/h2\u003e\u003cp\u003eAs a fully protected environment, the sterile laminar flow chamber allows specialized medical and nursing staff to continuously monitor changes in the patient's condition and perform various medical and nursing procedures. However, leaving the sterile environment reduces the sense of security for both patients and their families. Ten participants expressed anxiety about caring for patients during the high-risk period for complications. \u0026ldquo;Throughout the patient's treatment cycle, I have been meticulous and cautious. What concerns me most is whether the stem cell transplant will be successful after reinfusion and whether her body can withstand it afterward. I am afraid that the patient's condition may change, so whenever there is a change in test results, I become anxious and unable to sleep for several nights.\u0026rdquo; (P15)\u003c/p\u003e\u003cp\u003e\u0026ldquo;I feel it's a bit too early to leave the sterile laminar flow ward now. Will my son experience changes in his condition after leaving? How capable are the medical staff outside? Are they adequately equipped? Can they respond promptly if issues arise?\u0026rdquo; (P8, a middle-aged woman caring for her son 24 hours a day)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section3\"\u003e\u003ch2\u003e2.1.3Confusion about the prolonged care period ahead\u003c/h2\u003e\u003cp\u003eTransplant therapy is a long and uncertain process. Medical uncertainties such as recurrence, rejection, and short- and long-term complications cause primary family caregivers to lose their sense of time regarding when they can return to normal life, leading to prolonged uncertainty. \u0026ldquo;The child has been inside for nearly a month, and I've been suffering for a month. Now that the transplant is over, how much longer will it take before we can be free?\u0026rdquo; (P11, an older mother caring for her son 24 hours a day) \" This has truly been a dark period. When will it end?\" (P3, covering her face and crying)\u003c/p\u003e\u003cp\u003ePrimary family caregivers not only face the prolonged care period but also endure the frustrations and hardships of the care process. \u0026ldquo;My wife frequently becomes irritable and is not proactive in following the doctor's treatment plan even in the sterile laminar flow chamber. Now that we've just left the sterile laminar flow chamber, she argues with me over every little thing that doesn't meet her expectations. Why can't she understand my situation?\u0026rdquo; (P4 is a 29-year-old primary caregiver)\u003c/p\u003e\u003cp\u003e\u0026ldquo;It feels like caring for him is my sole responsibility. The entire family constantly monitors my caregiving actions and words. His sister, his parents\u0026mdash;they only care about the patient. No one understands my hardships and difficulties. Other family members put a lot of psychological pressure on me.\u0026rdquo; (P7 is a woman who provides 22-hour uninterrupted care for a patient)\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec14\" class=\"Section2\"\u003e\u003ch2\u003e2.2 Insufficient care knowledge and fragmented information increase care challenges\u003c/h2\u003e\u003cp\u003ePost-transplant care for hematopoietic stem cell transplantation is extremely demanding, yet caregivers often receive only brief, fragmented verbal instructions in the hospital, followed by interference from online information, creating a vicious cycle of \u0026ldquo;knowledge gaps\u0026mdash;information noise\u0026mdash;mental exhaustion.\u0026rdquo; Eighty percent (12/15) of caregivers reported that this adds an invisible layer of burden to an already high-stress care task.\u003c/p\u003e\u003cdiv id=\"Sec15\" class=\"Section3\"\u003e\u003ch2\u003e2.2.1 Need for diverse types of care information\u003c/h2\u003e\u003cp\u003eWhen primary family caregivers begin participating in patient care, the information required extends beyond assisting with meals and daily living activities. It also includes medication safety, emotional support, monitoring adverse reactions, and symptom management after the patient leaves the sterile laminar flow ward. Multiple primary family caregivers demonstrated a strong desire to acquire knowledge about multidimensional aspects of patient care.\u003c/p\u003e\u003cp\u003e\u0026ldquo;Once the patient leaves the sterile laminar flow chamber, I will be the primary caregiver. How should I assist with her daily living activities? Are there any dietary restrictions? Can the patient engage in physical activity? How should I handle the items used?\u0026rdquo; (P6, an elderly participant over 60 years old who has been caring for her grandchild long-term)\u003c/p\u003e\u003cp\u003e\u0026ldquo;Although I have a higher education, I lack medical-related information. Some medical knowledge is very profound and complex. Now that the patient has just been discharged from the ward, I also want to do something, but I don't know where to start or if I'm doing it correctly. I still need more guidance from doctors and nurses.\u0026rdquo; (P9, Doctor of Materials Science)\u003c/p\u003e\u003cp\u003eWhen a patient's negative emotional reactions and adverse disease symptoms persist outside the sterile laminar flow chamber, primary family caregivers become more urgent in seeking relevant care information. \u0026ldquo;The symptoms were already bad in the sterile laminar flow chamber, with diarrhea lasting for several days. Upon returning home, how should such a special patient be cared for in the later stages? We still need to consult doctors and nurses more often.\u0026rdquo; (P10)\u003c/p\u003e\u003cp\u003eCompared to ordinary caregivers, primary family caregivers of Allo-HSCT patients are more concerned about the patient's subsequent treatment and disease progression. \u0026ldquo;The child's father will still experience graft-versus-host disease, right? We want to understand the possible disease progression during the post-transplant care process, what we need to observe, and what symptoms to watch out for.\u0026rdquo; (P7)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec16\" class=\"Section3\"\u003e\u003ch2\u003e2.2.2 Selecting clear and effective information from diverse sources\u003c/h2\u003e\u003cp\u003eIn the information age, there is rarely a shortage of information. Instead, the abundance of information obtained through various channels often interferes with primary family caregivers' judgment and decision-making. Uncertainty is the most common obstacle to information for cancer patients' caregivers. \u0026ldquo;I often learn online, but there is an overwhelming amount of information available on the internet, in videos, and in brochures. I don't know how to filter through it all. It seems like I know a lot, but in reality, I'm still confused.\u0026rdquo; (P1)\u003c/p\u003e\u003cp\u003eA caregiver expressed frustration: \u0026ldquo;The patient has been experiencing diarrhea during the transplant period. There are various opinions about the patient's diet, and I don't know which ones are true and which ones are false. I'm afraid that my mistakes might lead to a worsening of the condition.\u0026rdquo; (P8, a middle-aged rural woman with low educational attainment)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec17\" class=\"Section3\"\u003e\u003ch2\u003e2.2.3 Reshaping Care Perceptions from a Modern Medical Perspective\u003c/h2\u003e\u003cp\u003eModern medical diagnosis and treatment of diseases, as well as functional recovery and health maintenance after transplantation, have long transcended the traditional scope of \u0026ldquo;in-hospital medical practices.\u0026rdquo; For primary family caregivers, the entrenched belief that patients are entirely dependent on hospitals reinforces external locus of control and weakens self-efficacy. During the interviews, three participants exhibited poor initiative and blind optimism regarding the patient's post-transplant condition.\u003c/p\u003e\u003cp\u003e\u0026ldquo;We are all non-professionals; when caring for the patient, there are some things we can't anticipate, and some tasks are beyond our capabilities. There are doctors and nurses outside, so we just need to perform basic care.\u0026rdquo; (P13, a 48-year-old male who is older and more stubborn)\u003c/p\u003e\u003cp\u003e\u0026ldquo;After the transplant, there's nothing much to worry about. Being able to leave the sterile laminar flow ward means you're already halfway there.\u0026rdquo; (P2) On the other hand, primary family caregivers tend to focus too narrowly on certain aspects, leading to cognitive narrowing and overemphasis, often neglecting the realities of care. For example, caregivers often focus solely on the importance of a sterile environment, ignoring the impact of prolonged confinement and isolation in the treatment environment on the patient's psychological state. \u0026ldquo;The environment inside the sterile laminar flow ward is indeed sterile. Ordinary wards and home environments have too many bacteria. Even if the indicators meet the requirements, it's too early to leave the sterile laminar flow ward now. You should stay inside for a while longer.\u0026rdquo; (P1)\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\u003ch2\u003e2.3 Personal resource depletion leads to caregiving difficulties\u003c/h2\u003e\u003cp\u003ePrimary family caregivers endure both physical and psychological distress during the patient's treatment cycle. When the energy and time of primary family caregivers are overly depleted, it reduces their motivation to provide care and also fails to meet the patient's care needs.\u003c/p\u003e\u003cdiv id=\"Sec19\" class=\"Section3\"\u003e\u003ch2\u003e2.3.1 Physical and mental exhaustion leads to expectations for family support\u003c/h2\u003e\u003cp\u003eDuring the transplant transition period, primary family caregivers may feel overwhelmed by the challenges of managing the patient's symptoms and disease progression, leading to expectations for assistance from other family members.\u003c/p\u003e\u003cp\u003e\u0026ldquo;I'm getting older now, and I don't know how much longer I can keep going. My physical strength and abilities are declining. My children's parents are separated and not around, so there's no one to help me share the burden.\u0026rdquo; (P6, an elderly woman raising her grandson alone, expressed her helplessness)\u003c/p\u003e\u003cp\u003e\u0026ldquo;I feel like I'm sick too. I often can't sleep for several nights. Sometimes I take a pill prescribed by the doctor for insomnia. I just tough it out. There's also a newborn baby at home who needs care, and my parents have already helped me a lot.\u0026rdquo; (P9)\u003c/p\u003e\u003cp\u003eOverburdening the primary caregiver depletes their energy, reduces their motivation to provide care, and also fails to meet the patient's care needs.\u003c/p\u003e\u003cp\u003e\u0026ldquo;There's also a child in school at home, and no one helps with childcare. Now I'm running back and forth between the hospital and school. Sometimes I'm very tired. The patient's meals are prepared hastily and not on time, and their clothes are washed carelessly. I'm no longer as meticulous and careful as before.\u0026rdquo; (P12, a female caregiver bearing the multiple pressures of caring for elderly family members, children, and patients)\u003c/p\u003e\u003cp\u003e\u0026ldquo;When will this end? Life feels so bleak. I wish someone could take my place.\u0026rdquo; (P3, a female caregiver providing full-time 24-hour care for 11 months)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec20\" class=\"Section3\"\u003e\u003ch2\u003e2.3.2 Self-neglect and strong social needs\u003c/h2\u003e\u003cp\u003eAfter leaving the sterile laminar flow chamber, patients rely on their primary family caregivers to meet all their needs beyond professional medical care. Caregivers devote a significant amount of time and energy to caregiving, which severely impacts their communication patterns, work performance, and social roles.\u003c/p\u003e\u003cp\u003e\u0026ldquo;Now treatment is the most important thing for the whole family. There\u0026rsquo;s no time for personal social activities or leisure. There\u0026rsquo;s no time for myself. I\u0026rsquo;m constantly focused on him. The only topics of conversation are how the test results are today and what the treatment will be tomorrow.\u0026rdquo; (P5)\u003c/p\u003e\u003cp\u003e\u0026ldquo;Now that the child has undergone the transplant, there can be no room for carelessness at this critical moment. I\u0026rsquo;ve taken another week off from work.\u0026rdquo; (P10)\u003c/p\u003e\u003cp\u003ePrimary family caregivers endure both physical and psychological strain during the patient's treatment cycle. They often exhibit negative emotions, hostility, and fatigue toward people and situations. \u0026ldquo;This has been a dark year. As a family member, I don't want to go through this prolonged ordeal again. Thinking about it makes me feel depressed, and I lose interest in everything.\u0026rdquo; (P13)\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec21\" class=\"Section3\"\u003e\u003ch2\u003e2.3.3 Insufficient economic support due to income disruption and mounting medical expenses\u003c/h2\u003e\u003cp\u003eThe treatment cycle for malignant blood diseases is relatively long, and the costs associated with diagnosis, medication, and care impose a significant financial burden on families. Additionally, families must contend with the risk of disease recurrence following transplantation, often feeling overwhelmed by the prospect of further treatment. \u0026ldquo;I have to take time off work every day, and there are no other sources of income. To undergo the transplant, I\u0026rsquo;ve already borrowed a lot of money from family and friends. After the transplant, I still need to face the ongoing treatment, which will continue to require funds.\u0026rdquo; (P5 spoke with his head down, sounding dejected)\u003c/p\u003e\u003cp\u003e\u0026ldquo;My child was just born, and there are expenses on all sides. My parents are also in poor health and take medication regularly. We never purchased major illness insurance, and we are now unable to afford the high medical expenses. We are now raising funds from society to meet the needs of the subsequent treatment.\u0026rdquo; (P4)\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"3 Discussion","content":"\u003cp\u003eDuring the recovery phase following Allo-HSCT transplantation, primary family caregivers typically provide 24-hour care services daily and are highly involved in managing the patient's subsequent physical symptoms. This study recruited 15 participants, all of whom reported experiencing significant caregiving stress and severe psychological burdens during the caregiving process. This aligns with findings from multiple studies \u003csup\u003e[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]\u003c/sup\u003e, which indicate that family members of hematopoietic stem cell transplant patients exhibit the same frequency and severity of mental symptoms as patients themselves. A longitudinal qualitative study by scholar Tan on primary family caregivers of transplant patients showed that caregivers' emotional responses changed with the patients' symptoms, and they tended to hide their negative emotions more when they were with the patients \u003csup\u003e[\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]\u003c/sup\u003e. Therefore, it is essential to prioritize the mental well-being of primary caregivers and provide targeted psychological interventions tailored to their specific characteristics. Before transplantation, assess and screen primary caregivers at risk\u003csup\u003e[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]\u003c/sup\u003e, and implement psychological interventions such as mindfulness training, stress management, psychological education, and cognitive behavioral therapy\u003csup\u003e[\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]\u003c/sup\u003e. Effective coping skills can identify and improve stressors that cause psychological, emotional, and behavioral distress in primary caregivers, while also increasing awareness of stress-inducing factors and motivating primary family caregivers to actively cope. Clearly and accurately explaining the patient's prognosis to the primary family caregivers after cell therapy is also an important measure to reduce psychological distress in family primary caregivers \u003csup\u003e[\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]\u003c/sup\u003e.\u003c/p\u003e\u003cp\u003eEighty percent of participants reported that insufficient care knowledge and fragmented information exacerbate care challenges. Education is not a one-time activity but requires adjustment based on the various stages of the Allo-HSCT process and the patient's disease status at the time of education \u003csup\u003e[\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]\u003c/sup\u003e. Effective, continuous care is a fundamental requirement for primary family caregivers during the transition period out of the sterile laminar flow ward. Strengthening knowledge and cognition can alleviate the uncertainty caused by knowledge gaps among primary family caregivers and more effectively address patients' care needs \u003csup\u003e[\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]\u003c/sup\u003e. Therefore, healthcare institutions should establish an integrated online-offline information platform \u003csup\u003e[\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]\u003c/sup\u003e. Online, medical staff can use transplant-related WeChat official accounts, short video platforms, and WeChat groups to provide primary family caregivers and patients with health education videos, expert live lectures, and other resources; Offline, they can offer professional and authoritative knowledge and skill guidance to primary family caregivers and family members through on-site thematic lectures, distribution of guidance manuals, and nursing consultation sessions. For patients with special circumstances, a \u0026ldquo;one-patient-one-file\u0026rdquo; needs list should be established 24 hours before the patient leaves the transplant ward to reduce the care-related challenges faced by primary family caregivers. This should be done by creating a dynamically updated electronic record that integrates basic care knowledge and skills into a targeted health education plan.\u003c/p\u003e\u003cp\u003eThe interview results indicate that most primary family caregivers face various challenges, including physical exhaustion, poor health, social isolation, and economic pressure. However, their supportive needs remain unmet, consistent with the findings of quantitative studies \u003csup\u003e[\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]\u003c/sup\u003e. Primary family caregivers, as the care group for patients receiving Allo-HSCT, should also be considered as recipients of healthcare professional care. Healthcare professionals should first guide primary family caregivers to practice self-regulation and self-management, such as maintaining a regular diet and good sleep patterns, and promptly regulating their emotional state. When they reach their physical and mental limits, they should actively seek family support and, if necessary, have other family members help alleviate the care burden. At the same time, healthcare professionals can establish caregiver peer learning groups to encourage caregivers to exchange and learn from one another. Support from peers can enhance personal emotions such as a sense of belonging, confidence, and self-esteem, thereby protecting individuals from the negative effects of stress\u003csup\u003e[\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]\u003c/sup\u003e. The experiences of peers enable primary family caregivers to make advance judgments and preparations regarding care decisions, reducing fear and uncertainty while enhancing hope. Allo-HSCT is a challenging treatment that imposes a significant financial burden on families\u003csup\u003e[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]\u003c/sup\u003e. Prior to transplantation, thorough communication about financial matters should be conducted with patients and their families to help them prepare in advance. Explanations regarding the use of medical expenses and relevant medical insurance policies should be provided to families, and financial pressure should be alleviated through commercial insurance, major illness reimbursement, and other channels. Additionally, assistance should be provided in applying for Red Cross major illness assistance and charitable foundation transplantation-specific funds.\u003c/p\u003e\u003cp\u003eThis study also has limitations. The study subjects were limited to a single hospital, making it difficult to generalize the findings to other hospitals or countries. Additionally, with the increasing prevalence of paid caregivers, although all study subjects were primary family caregivers for patients, there were differences in the duration and frequency of care provided by each caregiver, as well as variations in their care needs. In the future, it may be beneficial to further refine the categorization and conduct more in-depth investigations into different types of caregivers.\u003c/p\u003e"},{"header":"4 Conclusions","content":"\u003cp\u003eThis study identified the care experiences and needs of primary family caregivers during the transition period of leaving the sterile laminar flow ward through qualitative interviews. The results indicate that primary family caregivers face significant care-related stress and negative care experiences, with some care needs remaining unmet. The findings urge healthcare professionals to promptly address and repeatedly assess caregivers' multidimensional needs and care-related challenges, and to establish diversified support mechanisms for cancer rehabilitation within China's healthcare system.\u003c/p\u003e"},{"header":"Declarations","content":"\u003ch2\u003e5 Ethics approval and consent to participate\u003c/h2\u003e\n\u003cp\u003eThis study was approved by the ethics committee of shandong Provincial Hospital Affiliated to Shandong First Medical University, Jinan, China (SWYX:NO.2023\u0026thinsp;\u0026minus;\u0026thinsp;423).\u003c/p\u003e\n\u003ch2\u003e6Author contribution\u003c/h2\u003e\n\u003cp\u003eAll authors contributed to the study conception and design, FF S collected the data, FF S and JH W analyzed and interpreted the data, FF S and XY L drafted the article. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003ch2\u003e7 \u003cstrong\u003eCompeting interest\u003c/strong\u003e\u003c/h2\u003e\n\u003cp\u003eThe authors declared that they have no conflict of interests.\u003c/p\u003e\n\u003ch2\u003e8 Funding statement\u003c/h2\u003e\n\u003cp\u003eThe authors declare that no funds, grants, or other support were received during the preparation of this manuscript.\u003c/p\u003e\n\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\n\u003cp\u003eAll authors contributed to the study conception and design, FF S collected the data, FF S and JH W analyzed and interpreted the data, FF S and XY L drafted the article. All authors read and approved the final manuscript.\u003c/p\u003e\n\u003ch2\u003eAcknowledgement\u003c/h2\u003e\n\u003cp\u003eWe would like to express our gratitude to the primary family caregivers of patients who underwent hematopoietic stem cell transplantation for their participation in this study, for sharing their experiences, and for collaborating with healthcare professionals to contribute to the patients\u0026apos; recovery. We also extend our thanks to the research partners who contributed to this study, acknowledging their efforts in data collection and analysis.This study was supported by shandong Provincial Hospital Affiliated to Shandong First Medical University. The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eZhang WJ, Ma LF, Wang ZHM, et al (2021) Investigation of limb muscle mass and influencing factors in patients undergoing allogeneic hematopoietic stem cell transplantation. Chin J Tissue Eng Re13:1999\u0026ndash;2004.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLi LCH, Guo YP (2022) Quality of life and influencing factors in leukemia patients after hematopoietic stem cell transplantation. 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Transplant Cell Ther 28(9):619.e\u003cdiv class=\"ExternalRefDOI\"\u003e1-619.e8\u003c/div\u003e. doi:10.1016/j.jtct.2022.06.016\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"allogeneic hematopoietic stem cell transplantation, post-transplant transition period, primary family caregivers, caregiving experiences and needs, qualitative research","lastPublishedDoi":"10.21203/rs.3.rs-7426124/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7426124/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e\u003cp\u003eTo explore the care experiences and needs of primary family caregivers during the transition period after Allo-HSCT leave the sterile laminar flow ward.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003e Using the phenomenological research method in qualitative research, purposeful sampling was employed to conduct semi-structured interviews with primary family caregivers of allogeneic hematopoietic stem cell transplant patients at the Bone Marrow Transplant Center of a tertiary-level hospital in Jinan City, Shandong Province, China. Data were coded, categorized, and themes were extracted using Colaizzi's 7-step analysis method.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eA total of 15 participants were included, yielding three themes: role transition and role overload leading to increased emotional stress, insufficient caregiving knowledge and fragmented information increasing caregiving challenges, and personal resource depletion resulting in caregiving dilemmas.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eprimary family caregivers of Allo-HSCT patients have negative caregiving experiences, with some caregiving needs remaining unmet. The study results call for healthcare providers to promptly address and repeatedly assess caregivers' multidimensional needs and caregiving challenges, incorporate the perspectives of primary family caregivers into post-transplant patient rehabilitation care, and establish diversified support mechanisms for cancer rehabilitation within the Chinese healthcare system.\u003c/p\u003e","manuscriptTitle":"Care experiences of primary family caregivers during the transition period for Allo-HSCT patients leaving the sterile laminar flow ward: A Qualitative Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-10-15 18:24:44","doi":"10.21203/rs.3.rs-7426124/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"8c07a4ef-76f3-4cab-af5a-45e8a7f3bad2","owner":[],"postedDate":"October 15th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-02-18T22:09:12+00:00","versionOfRecord":[],"versionCreatedAt":"2025-10-15 18:24:44","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7426124","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7426124","identity":"rs-7426124","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}