Survival protection of patients undergoing hematopoietic stem cell transplantation: grounded theory.

Introduction

The HSCT is an effective and high-priced treatment method for patients with blood malignancies. More than five thousand HSCTs are performed every year around the world [ 1 ]. For many patients, the only way to get rid of the disease is HSCT. These patients are actually willing to start the process since it is the only way to save their lives [ 2 ].

Taking into account that the COVID-19 pandemic came to be one of the challenges of the society, patients undergoing HSCT are considered to be one of the most vulnerable groups to this disease. Amonoo and Sahu demonstrated that even though the COVID-19 pandemic has changed numerous aspects of HSCT, such as the recovery status [ 3 , 4 ], it did not aggravate the distress, fatigue, or quality of life [ 5 ]. According to the Walpole’s qualitative thematic synthesis study on Multiple Myeloma (MM), patients who experienced HSCT were feeling fearful of dying. They reported that they felt they had actually ‘died’. Patients who experienced negative physical symptoms normally internalize their hopelessness and avoid their families [ 6 ] and as a result individuals’ vulnerability increases during this time. Patients are eager to receive care, support, and spiritual services to meet their needs and alleviate their pain. It is worth mentioning that it is necessary to pay attention to the physical, cognitive, social, and psychological pressures posed on patients [ 6 , 7 ].

Sociopsychological factors could affect the short-term survival of patients. Receiving support from significant others and desirable emotional support before transplant is directly related to a lower post-transplant mortality rate of patients [ 8 ]. Patients who were single, having poor compatibility, having a history of psychological distress, and having cognitive problems prior to transplant, demonstrated short-term post-transplant survival in some studies [ 9 – 12 ]. Approximately half of the patients tolerating distress up to one year demonstrated psychological distress, obsessive–compulsive, loneliness, and delirium. In addition, they showed general anxiety regarding their health such as loss of memory and depression [ 13 – 18 ]. Depression can lead to behaviors such as smoking and alcohol abuse, which will result in poor treatment and poor Health-Oriented Quality of Life (HOQoL) [ 19 – 21 ]. Depression during hospitalization predicts a shorter lifespan in patients [ 20 – 22 ]. Limitations due to physical disability, reduction of individuals’ activities in society, fatigue and weakness, being affected by the self-image, intimate relationships, social isolation, feeling of lack of choice, and the special need for attention are psychological effects experienced by patients who undergo transplant [ 23 , 24 ]. Some studies suggested that HSCT had a significant impact on individuals’ lives for an unpredictable period of time [ 25 ]. Zamanizadeh et al. obtained three main themes including, death shadow, living with uncertainty, and life disturbances from the condition of patients undergoing HSCT and the problems experienced by them [ 26 ]. Farsi et al., studied patients with Leukemia undergoing HSCT. They found the following themes: (1) Feelings of fear and hope, which varied over time. (2) Intuition that consisted of signs perceived around the patients. Besides, patients used coping styles such as low hopefulness, submission, and weak fighting spirit which led to lower possibility of post-HSCT patient survival [ 27 ].

Accordingly, the need of HSCT patients and their caretakers for psychological and spiritual support increases [ 24 , 28 ]. Accompaniment is essential for preserving the patient’s resistance and staying alert for any possible side effects after the transplant procedure [ 29 ]. However, the association of pain with anxiety and depression as risk factors for distress and weakness of the immune system are psychological challenges for the healthcare team [ 30 , 31 ].

Substantial evidence indicates that there is a number of adverse and challenging consequences of treatment for patients undergoing HSCT including anxiety, depression, and mental adjustment. [ 32 – 36 ]. There are also some conflicting results on the effects of psychological factors on the survival of patients after treatment. Psychological challenges have played a dual role in health outcomes among HSCT patients. They can both negatively impact recovery, function, and mortality, and a higher risk of graft vs. host disease (GVHD), and also psychological challenges lead to better engagement with treatment and a variety of superior health outcomes. [ 8 , 10 , 21 , 37 , 38 ]. Patients undergoing HSCT report a high prevalence of psychological challenges, which can negatively impact the recovery, function, and mortality and a higher risk of GVHD. This study aimed to determine the psychological experiences of these patients to clearly learn the psychological aspects of the HSCT process in order to provide psychological services according to the mental conditions of patients.

Research methods

This study seeks to determine the psychological process of the HSCT patients. This qualitative study utilized the Strauss and Corbin approach (2015) toward the grounded theory [ 39 ]. Transplant experience is formed on account of social interaction with others, as well as, how people react and respond to them. All of these factors and components affect this experience. The grounded theory approach is used to discover the beliefs and meanings that are the basis of actions. It assesses the rational and irrational aspects of behaviors. It also displays how logics are combined together to affect peoples’ responses to the events through action and reaction (39).

The population of this study comprised patients undergoing HSCT. The sample included HSCT patients hospitalized in Taleghani Hospital, located in District 1 of Tehran. All interviews were held at the hospital during the HSCT process. The interviewed patients were hospitalized and were also recovered from HSCT. The researchers were familiar with the in-depth qualitative interview method. All the interview transcripts and codes were also controlled and feedback was given by the research team. In order to obtain maximum variance of experiences and to also better understand patients’ psychological process during the HSCT, the interviews were not limited to the patients’ experiences and the healthcare team was also included. The sampling strategy was adapted to the patients’ experiences and their willingness for interviews.

The participants consisted of 12 patients and a family member, one physician, one nurse, one infection control lead of the ward, and a psychologist of the ward. A total number of 17 participants were interviewed. The interviews were carried out in the time interval of January 2021 to July 2021. The inclusion criteria of the study included individuals with HSCT experience, individuals who were interested in participating in the research and speaking the same language as the researcher in order to be able to transfer the concepts and thoughts of patients.

At first, the researcher introduced herself to the participants and explained that they were researching the experiences of transplant patients. To obtain a better and deep understanding of the psychological experience of the transplant procedure the unstructured interviews were carried out in the patients’ rooms privately. Participants were asked to respond to general questions about their experience with transplant procedures during hospitalization or how they dealt with the transplant. The interviews continued with open-ended questions such as “please tell me about how you reacted when you realized that you should undergo transplantation” or “please tell me about your experience when you underwent the process of transplant.” Also, other open-ended questions about the behaviors of their relatives or healthcare workers during the process of transplant such as “tell us about how others and your relatives reacted when they were informed of the necessity of transplant and in the course of transplantation,” or “how was your experience regarding the healthcare workers in the course of transplantation” were included. Theoretical sampling was employed to collect data from individuals that maximized the opportunity to complete the characteristics, the dimensions of the concepts and to discover the differences and the relations about the concepts [ 39 ]. The criteria for determining the sample size was theoretical saturation. This means not discovering a new concept in terms of properties and diversity of their dimensions. Every time a similar concept was found, the researcher asked questions for more clarity. Interviews continued until the saturation was met, after 15 interviews. Two more interviews were conducted to gain more confidence. Researcher did not start the study with available theories. The grounded theory was the inductive approach [ 39 ]. The researcher did not direct the participants toward the responses. They let the opportunity for the theory to be completely formed from the data generated by the participants. After the initial interviews, theoretical samples were continued on the basis of the formed concepts and assumptions. In total, 19 interviews (the repetitive interviews were performed with two participants) were carried out for 30 to 90 min with 17 participants. Tables 1 and 2 show the specifications of the participants. Table 1 Specification of participants # Diagnosis Type of transplant Age Sex Marital status Occupation 1 Acute lymphocytic leukemia Autologous 42 Female Married Teacher 2 Hodgkin’s disease Autologous 38 Female Married Housewife 3 Acute myeloid leukemia Autologous 27 Female Married Housewife 4 Acute myeloid leukemia Autologous 44 Male Married Self-employed 5 Myelodysplastic syndromes Allogeneic (Haplo) 42 Female Married Housewife 6 Chronic lymphocytic leukemia Allogeneic (fully matched) 44 Male Married Lawyer 7 Acute lymphocytic leukemia Allogeneic (fully matched) 30 Female Married Employee 8 Multiple myeloma Autologous 44 Male Married Employee—theater actor 9 Amyloidosis Allogeneic (Haplo) 32 Male Married Worker 10 Hodgkin’s disease Autologous 18 Male Single Student 11 Non-Hodgkin’s lymphomas Allogeneic (fully matched) 43 Female Married Housewife 12 Acute lymphocytic leukemia Autologous 18 Female Single Student Position Sex 13 Physician Male 14 Infection control lead of the ward Female 15 Nurse Female 16 Patient’s companion Female 17 Psychologist Female Table 2 An instance of how theories were formed Meaning units (selected text) Codes Sub-concepts Concepts Some patients became obsessed due to the extreme stress and constantly asked questions or became extremely sensitive and annoyed by the smallest health problems Patients show symptoms on account of the severity of fear, dread, and thoughts Intolerance Threat to survival They would start nagging at the sight of the tiniest spot. Every time you go to their room, they might ask you if you have washed your hands. Every time you go to them, they want to know about their treatment process and cell count and it aggravates their anxiety Extreme irritability and sensitivity of patients to contamination I told them about my poor financial status. The doctor told me that I only have two options, either I forget about transplantation or find someone to financially support me Need for financial support Lack of financial support I missed my family because I have a little child and it made it much more difficult The hardship of loneliness because of being away from their child Separation from family

Data analysis

The data were analyzed via the Strauss and Corbin Approach [ 39 ]. The analysis started immediately after the interviews. First, the recorded interviews were transcribed. After repetitive examination, to obtain a general understanding of the content, the words and sentences were read for several times and coded. By a constant comparative analysis, the extracted data were compared in terms of similarities and differences and the common concepts were classified. Finally, the core and subsidiary categories and subcategories were created.

The five steps of the Strauss and Corbin Approach are as follows:

Steps one and two

Open coding and development of concepts in terms of features and dimensions were implemented. In these steps, the interview transcripts were repeatedly read and reviewed in order to immerse in the data and obtain a general understanding. The key sentences and concepts in each line and paragraph were identified and coded either using the participants’ words and expressions or based on the meanings conveyed by the data. Each interview was analyzed and coded prior to conducting the next one. While analyzing the data, we repeatedly asked ourselves, “What is happening in the data?”. Moreover, we constantly compared the new data with the existing ones in order to identify the key concepts. Throughout open coding, we not only conceptualized the data but also attempted to identify and generate categories. In other words, the codes which were similar in meaning were grouped into categories. The categories were labeled with more brief titles. Categories were facilitated to identify the hidden patterns in the data and the selection of participants to code the interviews.

Step three

Analyzing data for context. The interview transcripts were reviewed to explore the context that formed the main concern.

Step four

In this step, bringing the process into the analysis was completed. In this stage, the process of patients’ reaction to the HSCT through action/interaction/emotions was explored. By reviewing the interviews, the researchers discovered the strategies that the patients had adopted to deal with their main concern, along with the intervening factors in choosing these strategies and their consequences.

Step five

The core concept was identified in this step. All concepts were integrated around this concept (Fig. 1 ). Fig. 1 Schematic plan of the theory of survival protection of patients undergoing HSCT

In the data analysis process, while carrying out the constant comparison of the data, memo writing was performed as a crucial technique in the analysis [ 40 , 41 ]. To increase the credibility of the data, the interviews were read for several times. The gathered data through the interviews were approved with codes by the research team consisting of experts, who were well-known researchers in the field of qualitative research. In addition, methods such as working on data for a long period of time, spending a sufficient amount of time for collecting data, and approving the codes by the participants were used [ 42 ]. After each patient discharge, the researcher made an appointment with the patient at the hospital clinic. When they came to the clinic for their next visit, the obtained concepts from the interviews were presented. Concepts were also presented to the nurse, infection control officer, and also psychologist of the BMT ward. Increasing the dependability of the findings of the research was acquired through working with the participants, as well as using methods such as constant comparison of the data, data collection process revision, and data analysis by the team members [ 43 ]. To achieve confirmability, all stages of the research including data collection, analysis, and theme formation were all fully described [ 44 – 46 ]. To increase the transferability, the disparate experiences of the participants in the different levels of participation were used with the different demographic characteristics such as age, sex, and education [ 40 , 47 , 48 ]. Table 2 shows an instance of forming the concepts.

Findings

Analysis of the data [ 39 ] resulted in the development of four main categories. The main concern according to the patients’ experiences was “threat to survival.” Another concern of patients arising from the context was “attention deficit.” The core concept (main strategy) was “survival protection.” The consequences of strategies were “debris removal and fondness for life while on the alert for transplant rejection.” These concepts were developed based on patients’ HSCT experiences and the findings were enriched through interviewing with experts of the BMT ward. This means, the theory was based on patients’ experiences.

The main strategy of the participants in addressing HSCT (core concept) was “survival protection.” They used this strategy through compulsory acceptance, self-control, restlessness and secrecy and spirituality in response to the “threat to survival” as their main concern. The participants reported that factors such as feeling anxious about death, reducing tension, avoiding the previous periodic treatments, and feeling the need depending on supernatural force, played enhancing roles in adopting the strategy of survival protection. Due to the active nature of the previously mentioned strategy, the outcome of it was “debris removal and fondness for life.”

Threat to survival (main concern)

Threat to survival was revealed as the main concern in reviewing interview transcripts. In addition to the main concern, “attention deficit” was found as a secondary concern in patients. Actually, most of the participants suffered from death anxiety. The majority of HSCT patients were extremely anxious due to lack of knowledge of the transplantation process, the nature of the disease, and the dread of ineffective treatment. This anxiety originates from the dread of recurrence of the disease, transplant rejection, GVHD complications, and death. Being separated from their loved ones and also from their work are the factors causing stress in these patients. “Actually, I didn’t want to be hospitalized, I didn’t know anything about the HSCT. I was afraid to die here.” (Participant No. 3).

Being hopeful while being afraid

There is a simultaneous experience of hope for recovery after transplantation and fear of the treatment result in many patients. Due to a lack of knowledge and ambiguity about the transplant process, patients make scary images in their minds (such as performing a heavy surgery, taking cells from the bone marrow, and bleeding). “I didn’t know anything. I was very scared before hospitalization. Once I searched, a photo came up and I saw six physicians standing over the patient with big needles, I was very scared. On the first day of hospitalization in the BMT ward, the infection control lead of the ward explained the process to me, then I calmed down.” (Participant No. 10).

Intolerance

Patients have to stay on the waiting list for a long time, perform long and various tests and bear a long period of ambiguity, in order to eventually start with the transplant procedure. This long-term entrance made participants anxious and impatient. Furthermore, being lonely and tolerating the difficulty of chemotherapy to destroy unhealthy cells before transplantation and expecting the blood cells to increase after transplantation made patients intolerant. An 18-year-old girl said: “I felt alone in the room, I was not able to go out, no one came along to talk to me, and I was all alone in pain and hardship. It was very difficult. I was confused, I cried so much that they let my mother come along with me. Now that my mother is beside me, I feel a bit better.”

Separation from family

The feelings expressed by the patients during hospitalization include a longing for the family, feeling guilty about leaving their children alone, valuing family relationships for the patient, feeling lonely, and needing to be accompanied to encourage the patient during treatment. “Before entering the BMT ward, I was afraid and had severe anxiety. I had a one-year-old child, I was scared of death and unfortunate events because of my child. If I were single, I would not have the same idea.” (Participant No. 9).

Attention deficit (second concern)

Under-stress patients need more attention than usual. Attention deficit is the need for more attention in patients. Transplant patients suffer from a weak immune system and at the same time, they are mentally and psychologically vulnerable, dependent, and fragile. It is a challenge for them to bear any negligence and lack of attention to their needs. A patient’s daughter said: “We have plenty of work to do for my mother. When she was hospitalized, we used to prepare pink embroidered clothes for her. Every day we washed them and brought them back to the hospital. Whenever we expressed our fatigue, she would get upset and think that we were not understanding her. We would become the bad guys in the end.” (Participant No. 16).

A patient was discharged but due to GVHD, he was hospitalized in the BMT ward. After recovery he said: “I got GVHD and was very sick. Whenever the nurse took care of my request late, I became pessimistic and angry at her and threatened to sue you all if something bad happened to me!” (Participant No. 6).

Ignoring patients’ needs

Some patients faced an unfinished operating room, incomplete equipment needed for catheter installation, inappropriate anesthesia, and extreme stress. Defects in service to patients made them feel neglected. For example, a 42-year-old man said: “When the port was installed and removed in the operating room, I was very annoyed, their anesthesia did not work, they put the stitches without anesthesia, I endured it. I wish they would anesthetize me. Installing a port is a type of surgery, so it is better to anesthetize the patient.” (Participant No. 4).

Facing lack of understanding

Patients’ resilience against stress by lack of facilities becomes very weak. In terms of vulnerability, their psyche is like a baby who needs all the care and quick access to support resources. Any shortcomings and delays in handling and taking care of them caused distress and anxiety in patients. “I had to go to the first floor, for the CT. We must take care of using the elevator. We have to ride alone. I was wearing thin clothes and I was shivering. CT is on the first floor. I don’t have hair; I was very cold. I came back and told them, can you please get out of the elevator, i must be alone in the elevator, I am a patient of the BMT ward. Eventually, none of them came out. They didn’t know about our situation.” (Participant No.5).

Living in uncertainty

There was uncertainty for patients both about the process of transplantation and the effectiveness of HSCT. Ambiguity about the recovery, non-recurrence of the disease, and the level of the patient’s ability in the fields of work, social activities, communication, and sexual performance after transplantation became the cause of their resentment. An 18-year-old girl hospitalized in the BMT ward said: “I have a concern now, I can’t tell you, but honestly, I don’t know what these heavy chemotherapy drugs are doing to my body, what will be the effect later, do you know what I’m saying?” For example, can I get married and have a relationship? Can I have a baby? I do not know. (Participant No. 12).

The processes

Patients were facing the “threat to survival” (their main concern), and they employed several strategies including compulsory acceptance, self-control, restlessness and secrecy, and spirituality. All of these strategies are conceptualized as “survival protection” which was the core concept of the study according to the patients’ experiences. Survival protection reflects a set of strategies that patients used consistently in order to survive. A 43-year-old female patient said: “Sometimes the nurse wanted to do something that made me feel nervous and I constantly asked questions, or they told me that my cell count did not raise yet and it made me anxious. But I didn’t say anything because if I constantly asked questions, it might have annoyed them and it could cause tension.” (Participant No. 11).

A 42-year-old female patient said: “I get anxious when my cell count does not raise. I turn off my phone so that no one can increase my stress and I discuss my concerns with a nurse or physician and they tend to help me relax.” (Participant No. 1).

Compulsory acceptance

The first property of the survival concept was compulsory acceptance. The mental state of the patients to accept the transplant treatment was the result of the severe experiences of the previous treatment and the fear of repeating the previous hardships, as well as, the threats made by the physician and the adverse consequences of not accepting the transplant treatment. In addition, observing the consequences of the other patients who had not accepted the transplant treatment was a challenge. “At first, I always said why am I here, why did I become like this? Why should I be here for the best days of my life? Most of it was negative, but I said there is no other way. I have to go through this stage of life. I accepted my situation by force. It’s very hard for me.” (Participant No. 7).

Self-control

One of the measures that patients take to preserve their spirit, is planning for the time of hospitalization including watching movies and series, listening to music, dancing, finding entertainment, making a daily journal, praying, distracting themselves, hiding their discomfort from others to preserve their spirit, creating a family channel, providing daily reports of their state, making efforts to elevate their spirit, becoming inspired by the nature, and self-knowledge. “I have been seeing that mountain in my room for 26 days. Believe me, I prostrated before this mountain every morning. That is, I saw the greatness of God in it. The mountain means patience and it really helped me. It means being strong.” (Participant No. 6)

Restlessness and secrecy

Although the participants tried to manage their stress but sometimes, they couldn’t manage to do so. Patients feel anxious and internalized through depression or in some cases externalize it with demanding behavior. According to healthcare workers, the majority of patients try to manage their emotions by staying calm and avoiding complaining. However, according to the statements of healthcare workers, approximately 20% of patients become restless. They tend to ask repetitive questions and press nurse calls numerous times. They need somebody to tend to them every moment and talk to them in order to be assured. “One of the patients, who is my friend, had decreased blood platelets yesterday. I came to know through my friends on our WhatsApp group. I was very worried that I would become the same. I got nervous. The nurse told me to block my friends, and that this news will not help me. Patients’ bodies are different.” (Participant No. 2).

The ward nurse stated: “Patients are divided into two groups. Some of them do not say anything. They are calm. They do not speak as if they are silently managing their stress and reducing tension. But others may be aggressive. They ask questions, call the nurses or even cry, and somehow relieve their stress.” (Participant No. 15).

Spirituality

Observing the signs of Divine kindness and attention in patients helps them to remain relaxed. Instead of passively complaining, they actively accept the fate that God decided for them. Trusting God leads to preserving peace, accepting the treatment and its outcome, certainty, and tolerating the psychical and psychological agitations. “I trusted in God. I am weak, God is gracious to me and nothing else. I do not know how much you believe in healing. The first process was very difficult for 20 days. The three antibiotics were very heavy. One night in a dream I saw a sign of Hazrat Abolfazl. I had a dream. I dreamed that an acquaintance came and sat next to me on a chair (my name is Reza) Hazrat Abolfazl said, “Go and tell Reza, you will be fine.” The next morning my fever stopped.” (Participant No. 4).

The context

Data analysis demonstrated that factors such as the “nature of the disease,” “physical and psychological vulnerability of the patient,” “uncertain future,” “the association of personality type of patient with the treatment process,” “low number of nurses,” “lack of knowledge of people regarding the necessity to be considerate of patients’ situation,” “insufficient social facilities,” and “concerns about treatment expenses” threat the survival of patients.

Nature of the disease

The nature of the disease is important in determining the outcome of the transplantation. Patients with Acute Lymphocytic Leukemia (ALL), which normally occurs in young people, resist transplant treatment. The prognosis for the patients with AAL was very poor after the HSCT. “Some patients have very high expectations of the transplant while the physician disagrees. For example, for ALL diseases, the doctor has a 50–60% chance of effective transplantation. After the transplant, they say that if we had known that the transplant was not completely effective, we would not have had the transplant at all.” (Participant No. 14).

Physical and psychological vulnerability of patient

Patients who undergo HSCT are susceptible to infections. On account of their physical weakness and special situation, they are extremely sensitive to receiving physical and psychological support. The slightest harshness and failure to practice hygienic protocols can be regarded as a threat to their survival. “My mother was very impatient in the quarantine room but on the other hand, very afraid of Corona, she was terrified every time she went to take a CT scan. She said that I feel calm only inside the HSCT section. Elsewhere in the hospital the shadow of death is following you.” (Participant No. 16).

Uncertain future

Patients become anxious because they do not know what the future holds. Occupational and physical capability, the possibility that the disease might not relapse and a transplant is not rejected, the possibility that GVHD does not occur, fertility, and marriage (for single patients) are the main concerns. These concerns result in the mental preoccupation of patients and reduce their sleep and mental peace. “I can’t sleep at night, I’m all wondering what happens. Is the transplant going well? What should I do in quarantine for a few months? Can I have children? I’m all thinking I’m worried I cannot sleep at night.” (Participant No. 7).

Association of personality type of patient with the treatment process

By reviewing the interviews, the patients’ personality types, and the previous life conditions of the patients, their interactions with the main family (primary family) affect their psychological experience of transplantation. In patients with appropriate social interactions, these relationships served as psychological capital and improved their motivation and energy. “I`m very sociable. We were a big family. When I was admitted to the transplant department, I created a family channel of 80 people and wrote about myself every day for the members of the channel.” (Participant No. 6).

Lack of nursing manpower

One of the issues that caused patients to feel ignored by the healthcare workers was the delay in responding. Sometimes this delay lasted for a long time and they fell asleep. Some patients considered this delay to be due to a lack of manpower and were considerate, but they were getting furious. “Nurses are tired. Each nurse must treat seven patients. They do not hire more nurses. The government rarely helps the Bone Marrow Transplantation (BMT) ward. Only a charity supports this ward. They (nurses) cannot handle patients very well.” (Participant No. 5).

Insufficient social facilities to provide the treatment expenses

Considering the financial pressure and massive expenses of treatment, patients were worried. This is crucial, and governmental or social institutions should facilitate financial problems for patients. “I got super expensive syrup. I got three syrups, 3 million tomans each. The dose of ATG was 19 million tomans. Before being admitted, the doctor said that your transplant was extremely difficult. You have to have someone from outside to have a bag of money to support you.” (Participant No. 9).

Factors affecting the process of survival protection

Reviewing the interview transcripts indicated the intervening factors in the use of strategies. Some of these factors were identified as facilitators and some as barriers. The main barrier to survival protection was death anxiety while the three main catalysts of this process included reducing tension, avoiding previous periodic treatments, and feeling the need to depend on supernatural force.

Death anxiety

Almost all patients experience the fear of death. The feeling of restlessness is caused by this fear. Fear of death was the basis of many patients’ behaviors, including seeking reassurance from the treatment staff, obsession, aggression, and depression. “Whenever a nurse comes to my room and I feel that the nurse has not disinfected her hands, I am afraid of infection and death. I always ask her to wash her hands.” (Participant No.7).

Reducing tension

Patients seek peace so that they avoid tense situations. As they stay alone for about one month in a room at the BMT ward, they try to keep calm and concentrate on the treatment. “I was very annoyed during catheter installing, but I didn’t say anything. I didn’t want to have a fight and controversy and lose my peace” (Participant No. 4)

Avoiding previous periodic treatments

A dominant motive of patients to be involve in HSCT was avoiding past periodic treatments and chemotherapy difficulties. “As I was tired and bored of heavy chemotherapy and its stress, I did accept the HSCT.” (Participant No. 7).

Feeling the need to depend on the supernatural force

Patients experience the sense of hope and fear at the same time. To overcome the fear, they need the supernatural force of God. They feel stronger through trusting in God. Some of them considered these difficulties as a gift to pay more attention to God. “Whenever I get tired of this illness and long-term therapy, I shift my thoughts towards God. I feel that the power of God covers me and I am not afraid anymore” (Participant No. 11)

The consequences of the process

As explained earlier, the outcome of strategies applied by participants was “debris removal and fondness for life while on the alert for transplant rejection.” Considering physical weakness, participants tried to rebuild themselves for a normal life. The participants doubt normal life after the transplant, and at the same time, they are vigilant to transplant rejection. They should define life tasks based on their new physical, mental, and psychological strength. Also, most of them sought to follow their interests.

A 43 years woman said: “I will definitely learn to play the guitar when I get better. I was always interested in it, but I never pursued it seriously.” (Participant, No. 1).

Another patient stated: “I have always loved farming. I will leave the government job and go for agriculture.” (Participant, No. 4).

New beginning

By the time their blood cells were increasing, hope started to blossom in their lives. After long-term uncertainty, hardship, and loneliness participants made new decisions for their relationships with others, and with God, had new meanings in life, and made changes in their priorities. “I told myself that if I leave here safely, I will start a new life. Both for myself and my family. I have done wrong things before, I understand. I want to start a new life. I want to do good things.” (Participant No. 9).

Peace in life

The review of the interviews showed that participants look for peace and calmness. They leave their heavy matters behind. They care more about their own happiness and that of others. Patients aimed to keep calm after discharge and they deeply hoped that they could cope well with stress and receive good enough care from their families. “I used to play an important role in the family and take a lot of responsibility, but it was stressful for me. Now I don’t want all those responsibilities anymore. I want to live more easily and be away from stress.” (Participant No. 4).

Altruism

Patients understood each other better when they were weak and in pain. They showed a sense of altruism and empathy toward other patients. “I am very interested in sharing my experiences with patients who are hospitalized after me in this ward. I would like to intellectually and emotionally help them and give them hope. As much as I can, I will buy everything necessary for the patients.” (Participant No. 5).

On the alert for transplant rejection

Participants kept being alert about signs of graft rejection. At the time of discharge, patients regularly ask about post-transplant care, signs of infection, or rejection of the transplant. Some prefer to remain in the ward under care. “When patients are discharged, they are more worried about the rejection of the transplant and keep asking about it.” (Participant No. 15).

Theoretical explanation of survival patients undergoing hematopoietic stem cell transplantation

The participants’ main concern was the threat to survival, in the context of insufficient social facilities, uncertainty about their future, shortage of the number of nurses, and lack of people’s knowledge about these patients. So, these patients experience excessive amounts of stress. Patients’ personality facilitates or aggravates the difficulties of the treatment process. It made them decide how they wanted to deal with the treatment process. In the course of this process, they have become physically and psychologically vulnerable which resulted in attention deficit. They have higher expectations from healthcare workers and their families. When faced with a threat to their survival, HSCT patients tend to become more protective of survival. Reducing tension and avoiding previous periodic treatment motivated them to use strategies like compulsory acceptance, spirituality, self-control, restlessness, and secrecy. These strategies led the survival protection to become the main strategy of the patients. These strategies help remove debris, rebuild their character, and become fond of life, which elevates patients’ spirits to continue lives and enjoy a new beginning, peace in life, and altruism. On the other hand, they are on the alert for transplant rejection symptoms, and sometimes they are discharged from the HSCT while suffering from anxiety. Figure 1 provides a theoretical explanation of survival protection.

Discussion

This study aimed to discover the psychological process experienced by Iranian patients who underwent HSCT. The results suggested that the nature of the disease, uncertainty about transplant treatment, the physical and psychological vulnerability, as well as, the association of the personality type of the patient with the process of treatment led to a threat to the survival of patients. Shortage of the number of nurses, lack of knowledge of people about the special condition of patients, their extremely weak immune systems, and insufficient social facilities intensified Attention Deficit. In this situation, patients accept the treatment and apply spirituality, self-control, restlessness, and secrecy. These strategies are conceptualized as “survival protection.” Walpole and Farbicka revealed that patients who are more vulnerable and dependent on experts increase their enthusiasm to receive care, support, and spiritual service [ 6 , 7 ]. In addition to their findings, the present study shows that patients know that they play a vital role in their survival and the effectiveness of treatment. They entertain themselves using strategies such as a virtual relationship with their family when they face the core concern (threat to survival). Patients become keen to reduce their tensions and aggressions during stressful situations by finding meaning and meaningful relations with professionals (which was conceptualized as self-control). It is worth mentioning that spirituality is one of the prevailing strategies in the Iranian culture. Upon trusting the Divine force, patients accepted the difficult situation and to some extent kept themselves calm. The studies demonstrated that patients who reported a “lack of spirituality” (lack of spiritual and religious support), manifested a higher post-transplant mortality rate within one year [ 20 ]. Moreover, spiritual well-being as a positive psychological structure has a significantly positive relationship with Health-Related Quality of Life (HRQoL). According to the systematic study by Zheng et al., spirituality in transplant patients emerged in two main forms, i.e., “belief in God and fate” and a “positive view of the disease.” However, to carry out an effective intervention in this regard by nurses and physicians, it is essential to acquire a better understanding of spirituality in various cultures [ 49 ]. In this study, patients regarded the disease as God’s test and a way to become closer to God, a tool to strengthen their belief in God, and increase the presence of God in their life instead of “self-orientation.” They were in search of finding the meaning that God intended for them.

In a Farsi study, patients stated that dreams and intuitions led to changes in their perception. It was a factor in relieving their mood or, conversely, weakening their mood and stress. The same experience was met in the present study. Some patients stated that they were affected by seeing some dreams physically, emotionally, and psychologically.

In Zamanzade’s model, patients suffered from uncertainty during HSCT which conceptualized as a Limbo. He focused on the mortality dimension of HSCT. The patients’ lives are endangered with different threats in different stages of HSCT which may result in death. In the above-mentioned study, patients’ coping styles such as low hopefulness, submission, weak fighting spirit, distraction, and stressful mental preoccupations had a direct relation with a lower possibility of patient survival after HSCT. In another study, greater distress, severe impaired psychological well-being in patients when dealing with transplantation [ 50 ] resulted breaking off their relationships that have been associated with poor clinical outcomes including decreased quality of life (QOL) [ 51 ] and diminished immune response [ 52 ]. In contrast, in the theory of “survival protection,” patients often tried to maintain their spirits, vitality, and hope through acceptance, spirituality and self-control. The role of hope, spirituality, and self-control in addressing threat to survival was prominent. Patients reported that they go through the transplant process with hope and trust in God. Emotional support from family members (through social network), writing diaries, focusing on goals and dreams, strengthening their relationship with God, breaking up with anxious relatives and receiving emotional and spiritual support from nurses were effective and useful strategies in increasing mood and strengthening the spirit of fighting in patients. The research showed that social network and social connectedness could enhance the well-being of HSCT. Survivors were able to re-establish and re-integrate into their social life with the support of their families, friends, and employers [ 53 ].

In contrast with the results of Pillay’s research that none of the psychosocial factors were predictors of survival in HSCT patients, in the present study patients benefited from psychological factors (such as acceptance, self-control, spirituality) and social capital (family support) when facing a threat to survival. These copings lead to debris removal and fondness for life while on the alert for transplant rejection. In terms of coping strategies, there were differences between the results of the present study and previous studies. Coping responses characterized by less hopefulness, more acceptance [ 54 ], weaker fighting spirit, distraction [ 55 ] and anxious preoccupation [ 15 ], denial, and avoidance [ 27 ] were associated with poor post-HSCT survival. Rumination, suppression, and avoidance coping were found to increase daily Negative Affect (NA) and decrease Positive Affect (PA). On the other hand, reflection, reappraisal, acceptance, social sharing and problem-solving strategies enhanced daily PA [ 56 , 57 ]. Coping may constitute relevant protective or risk factors for changes in daily mood. In the stress-coping model by Lazarus and Folkman (1984), coping is one of the main variables responsible for patient adjustment [ 58 ].

Oncological treatments can lead to physical, cognitive, psychological, or social distress [ 31 ], as well as a meaning crisis [ 59 ]. Distress can cause disability and is undiagnosable [ 59 ]. The feeling of induced loneliness can cause a spiritual crisis in a person [ 60 ]. Distress, anxiety, and depression could be risk factors for HSCT. This is while they are commonly assessed before or after the HSCT process and lead to different survival results. Not all studies have found a significant relationship between depression and HSCT treatment (e.g., Pereira, 2010). The present study was not in line with Pereira et al.’s study as it revealed that distress caused participants apply dysfunctional coping with the threat to survival (restlessness and secrecy). One of the factors that caused distress was nature of disease this result was in line with Jabbour et al. While dose-intensification strategies have led to a significant improvement in outcomes for pediatric patients, the prognosis for the elderly remains very poor. Despite a high rate of response to induction chemotherapy, only 30–40% of adult patients with ALL will achieve long-term remission [ 61 ].

There is little evidence of patients’ coping strategies during HSCT. These are mostly assessed after the HSCT process. The last studies were retrospective evaluations to assess patients’ psychosocial functioning. In addition, previous studies have mostly used quantitative instruments to evaluate the performance of patients, while the present study has illustrated coping strategies and the reason for using these strategies by patients during transplantation through in-depth interviews and qualitative methods. Studies indicate that an increased number of symptoms were related to more intense symptom-related coping behaviors [ 58 , 62 – 64 ]. Coping strategy is viewed as a response to perceived stress (e.g. somatic burden) and is directed at regulating stress outcomes (emotion and affect). In addition to the previous affect model studies, the present research reflected the consequences of these strategies in the lifestyle and change in patients’ insight toward life (e.g. peace in life, new begging, and altruism).

Clinical implications

As the research provided the patients’ psychological experiences of HSCT, it operatively paved the way for nurses and psychologists to provide psychological and spiritual services. Actually, psychologists must help patients to express their emotional feelings. Psychologists should address negative cognition and emotion leading to dysfunctional coping which reduces positive affect and increases depression. Negative emotions or suppressing them leads to dysfunctional strategy, being silent to prevent tension or aggressive behavior. In addition, informing patients to use healthier coping styles like problem-focused coping skills, training them to seek for receiving social and family support during the HSCT process, and being assertive in their social environment, protect their immunity and safety after HSCT. Nurses should establish a secure relationship with patients so that a better therapeutic alliance can occur. They should also be alert that some dysfunctional coping styles are signs of a psychiatric disorder so that a psychologist or psychiatrist can interevent. According to the survival protection theory, there is a serious need to prepare protocols to improve the psychological status and educate patients before the HSCT treatment.

Conclusion

According to the findings of the present study it can be suggested that dealing with HSCT affects various personal and social aspects of life. The contextual factors causing threats to survival and attention-deficit include both personal and social dimensions of a patient’s life. Based on the results of the present study, HSCT patients enter the BMT ward with a threat of survival, and some express anxiety. Some patients manage their stress through introjecting anxiety. Recognizing the patient’s concern and generalizing it to all patients helps to reduce the fear of death. Also, patients should identify and accept unpleasant emotions together with a psychologist or nurse. Actually, patients and their families deal with extreme tension and stress. This shows the necessity of psychological care, social work, and counseling together with pharmaceutical and medical services. Patients can benefit from existential theory and spiritual care to deal with “death anxiety.” Considering the dependence of patients on healthcare staff, especially nurses, increasing the number of informed and trained nursing manpower is essential.

Limitations and recommendations

This research did not interview the companions of patients (except for one). The process of transplantation does not merely affect the patients, it even influences and agitates their families, relatives, and friends as well. Therefore, conducting deep and qualitative studies on the companions of patients can be desirable. It is recommended to use the results of this research in psychological interventions and constructing tools in order to measure how patients deal with HSCT.

Publisher's note

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Acknowledgements

The authors hereby express their deepest gratitude to the Science and Research Branch of Islamic Azad University that supported the research, as well as the president and employees of the Bone Marrow Transplant ward of Taleghani Hospital, and the patients who patiently assisted us in conducting this research.

Author contribution

All authors contributed to the study’s conception and design. Zahra Mohamadifard wrote the manuscript and was involved in data collection and interviewed patients. Zahra Mohamadifard and Fazlollah Ahmadi collaborated on data analysis. Ali Fathi-Ashtiani guided the research and assisted in the writing of the manuscript. Bita Nasrolahi and Ali Fathi-Ashtiani supplemented the manuscript. Abbas Hajifathali provided the opportunity to attend the BMT ward at Taleghani Hospital. All authors have read and approved the final manuscript.

Data availability

The verbal data generated and analyzed during the current study are not publicly available due to the privacy and the protection of the participants.

Declarations

Ethical approval

The code of ethics with the ID No. of (IR.IAU.SRB.REC.1400.152) was obtained from the Committee for Ethics and Research of the Science and Research Branch, Islamic Azad University. The participants were asked for their permission to record the interviews and they were ensured of the full confidentiality of their information.

Consent to participate

An informed consent to participate in the present study was obtained from all the participants.

Consent for publication

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

Competing interests

The authors declare no competing interests.

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