Introduction
Indications for bone marrow transplantation in pediatrics can be classified according to the type of underlying disease, distinguishing between proliferative diseases of the hematopoietic system, congenital and acquired non-oncological diseases, as well as congenital metabolic disorders [1].
In 2023, a total of 47.731 hematopoietic cell transplantations were performed in Europe on 43.902 patients in 696 centers across the continent. Of these, 20.485 (42.9%) were allogeneic transplantations, while 27.246 (57.1%) were autologous ones [2]. The number of hematopoietic cell transplantations in Poland alone in 2023 reached 1.989, including 1.261 autologous transplantations [3].
Diseases requiring bone marrow transplantation are chronic conditions. Therefore, patients admitted to the Transplantation Center as well as their parents usually have already had a lot of experience connected with previous hospitalizations. Their hospital stay lasts about 4-6 weeks in the case of an uncomplicated transplantation, or longer in the event of severe complications that may threaten the patient’s life. The entire transplantation treatment process consists of several stages: obtaining hematopoietic cells, preparing and storing the cells until the procedure, preparing the recipient, and performing the transplantation procedure itself [4]. Post-operative complications can be divided into two categories: with regard to their cause and with regard to their timing. The first group includes complications related to the preparation for transplantation and those resulting from the introduction of foreign tissue into the recipient’s body. These are primarily two types of reactions: host-versus-graft and graft-versus-host. In terms of time of occurrence, we distinguish between two groups of complications: acute, up to 100 days after transplantation, and chronic, beyond this period. Regardless of the cause of the complications, they have a significant impact not only on the physical and mental condition of the patient, determining the prognosis and long-term health effects, but also on the emotional state and social functioning of their family [5].
The period of hospitalization and the time following the hospital discharge are associated with the disorganization of family harmony, separation, and negative emotions. Usually, one of the parents becomes the primary caregiver for the child, giving up their job and previous social roles. This generates the risk of an unfavorable financial situation for the family. What is more, the siblings of a child undergoing a bone marrow transplantation also experience negative emotions – separation from one of their parents, instability, and anxiety about their brother’s/sister’s health can lead to various mental health disorders and reduced self-esteem [6].
In some cases, siblings are donors for allogeneic transplants. This situation is extremely difficult for the child due to the need to undergo a series of diagnostic tests and the apheresis procedure. It is also accompanied by anxiety related to the medical procedures performed, as well as a sense of threat to their physical and psycho-emotional well-being [6-10].
Moreover, the period after the patient’s discharge from the transplantation center following a successful transplantation procedure bears no resemblance to the reality before the illness. Regular check-ups at the Transplantation Clinic, diagnostic tests, fear of recurrence of the underlying disease, and social isolation generate negative emotions in the patient and their immediate family. Transplantation is, undoubtedly, a procedure that gives the patient a chance to fully return to social life and adapt to their environment. However, it is a long-term process that proceeds gradually, requiring the transplant recipient and their loved ones to develop new coping mechanisms [11].
The psycho-emotional well-being of the family is an important predictor of the emotional state of children and adolescents undergoing bone marrow transplantation [12]. Therefore, holistic nursing care should take into account the psychological aspects of both the child and their caregivers. Pediatric patients in life-threatening situations experience high levels of anxiety, depression, irritability, sleep disturbances, and pain during the course of their illness, diagnosis, and treatment [13,14]. Understanding the determinants of the emotional state which the parents of children after bone marrow transplantation experience and optimizing nursing care that also focuses on the patient’s caregivers can contribute not only to better bio-psycho-social functioning of parents, but also to better long-term health and developmental outcomes in children [12].
Aim
The aim of the study was to assess the levels of anxiety, depression, irritability (aggression), and stress intensity in parents whose children had undergone bone marrow transplantation, taking into account potential predictors, including coping strategies and perceived social support.
Research materials, methods, and tools
The study applied a diagnostic survey method using standardized research tools: the Berlin Social Support Scale (BSSS) (1. Perceived available support), the modified Hospital Anxiety and Depression Scale – HADS-M, the Perceived Stress Scale – PSS-10, and the shortened version of the Coping with Stress Inventory – Mini COPE.
The BSSS scale is a questionnaire used to measure cognitive and behavioral dimensions of social support. The questionnaire consists of five independent subscales: Perceived Available Support (8 statements), Need for Support (4 statements), Seeking Support (5 statements), Currently Received Support (15 statements), and Protective Buffering Support (6 statements). For the purpose of the current study, only the first part of the questionnaire: Perceived Available Support was used. Respondents rated the truthfulness of the statements on a scale from 1 to 4, where “1” meant “completely untrue” and ‘‘4” meant “completely true.” The results obtained were interpreted according to the principle: “the higher the score for a given scale, the greater the intensity of a given type of support” [15].
The HADS scale is used in screening tests to assess the severity of depressive and anxiety disorders. The questionnaire consists of 16 questions divided into 3 subscales that allow for the assessment of emotions: depression, anxiety, and aggression. The anxiety and depression subscales each consist of 7 questions, while the aggression subscale consists of 2 questions. Each item is scored on a scale of 0 to 3 points.
Statistical analyses for each subscale except the HADS-I included a breakdown by category: Low, Medium, High. An analysis of the respondents’ answers was performed in accordance with the instructions of the authors of the scale and the authors of its adaptation [16,17].
The PSS-10 scale consists of 10 questions concerning subjective impressions related to stressful situations, behavior, and coping methods. The questions are rated on a 5-point Likert scale from 0 to 4, where “0” means strong negation and “4” means complete approval. The maximum number of points that can be obtained is 40 – the level of perceived stress increases in direct proportion to the number of points obtained. The results are presented as sten standards [18].
The Mini-COPE questionnaire contains 28 statements comprising 14 coping strategies, such as: active coping, planning, positive reframing, acceptance, sense of humor, turning to religion, seeking emotional support, seeking instrumental support, distraction, denial, venting, substance use, withdrawal, and self-blame [19]. The method is most often used to measure available coping, i.e., the assessment of typical ways of reacting and feeling in situations of intense stress. Mean values and standard deviations serve as norms for adults aged 20–65 and for students [18].
The data collection process also involved the use of a self-designed survey questionnaire, which included questions concerning the socio-demographic data of the respondents, aspects related to their experience connected with their child’s illness, and stressors which affected them.
Organization and course of the study
The study included 67 parents whose children were hospitalized in the Transplantation Center and consulted on an outpatient basis at the Transplantation Clinic of the University Children’s Hospital in Krakow between January and April 2025.
The criteria for inclusion in the study were: child’s condition after bone marrow transplantation, minimum 2 weeks after bone marrow transplantation, voluntary consent to participate in the study, knowledge of spoken and written Polish.
The exclusion criteria for the study were: the terminal phase of the child’s disease and an immediate threat to the child’s life.
Before deciding to participate in the study, each parent was provided with verbal and written information about the purpose of the study, its course and the possibility of withdrawing from the study at any stage without giving a reason. The parents were informed that neither refusal to participate in the study nor participation in it would affect the quality of medical care and treatment provided. The group of selected parents gave voluntary consent for the collected material to be used for publication.
The authors of the survey ensured respondents’ anonymity, confidentiality of the data and privacy. In order to prevent the identification of parents by any other people unrelated to the survey, all information provided by respondents was coded and non-numerical information was removed. The survey was conducted in accordance with the ethical principles of the Declaration of Helsinki. The course of the study was approved by the Research Ethics Committee of the Jagiellonian University - Collegium Medicum (No. 118.0043.1.507.2924).
Results
The study covered 67 parents aged between 21 and 59. The study group was dominated by women (70.1%, N=47), rural residents (55.2%, N=37) and married people (82.1%, N=55). The parents’ financial status was most often assessed as good (56.7%, N=38) or average (25.4%, N=17). Respondents most often declared that they had higher education (47.8%, N=32) or secondary education (37.3%, N=25).
More than half of the respondents worked full-time (50.7%, N=34), but a significant number of them were unemployed (38.8%, N=26). The time from diagnosis to bone marrow transplantation ranged from 1 to 42 months, with a mean of 10.81 months (SD=9.23). For 50.7% (N=34) of children, the waiting time for transplantation exceeded 6 months. The period from bone marrow transplantation to the study ranged from 1 month to 45 months (mean=3.39 years; SD=6.24). More than half of the children (55.2%, N=37) had undergone bone marrow transplantation at least one year prior to the study. The most common type of transplantation was allogeneic one (76.1%, N=51). Rehospitalization was necessary in 80.6% (N=54) of children. At the time of the study, 64.2% (N=43) of children were in remission.
Details regarding the characteristics of the study group are presented in Table 1.
Table 1
Characteristics of the study group
The main complications that occurred in children in connection with conditioning prior to the bone marrow transplantation procedure and after the transplantation included hair loss, weakness, weight loss, loss of appetite/change in taste, nausea, vomiting, infectious complications, diarrhea, and mucosal ulceration. Under 1/3 of children experienced also other types of complications.
Levels of anxiety, depression, and aggression in the study group Anxiety was the predominant emotion in the examined group of parents. Parents experienced higher levels of anxiety (9.82 points) than depression (7.76 points). The level of aggression was 3.39 points – Table 2.
Table 2
Level of negative emotions in parents (HADS-M)
| HADS-M | M | SD | Min | Max | Q1 | Me | Q3 |
|---|---|---|---|---|---|---|---|
| Anxiety | 9.82 | 4.24 | 1 | 19 | 6 | 9 | 13 |
| Depression | 7.76 | 4.83 | 0 | 20 | 4 | 8 | 11 |
| Aggression | 3.39 | 1.55 | 0 | 6 | 2 | 4 | 4 |
The results indicating the risk of anxiety disorders were obtained in 38.8% (N=26) of parents of hospitalized children, and the results corresponding to the borderline condition were observed in 31.3% (N=21) of respondents. In turn, the results suggesting the absence of anxiety disorders occurred in 29.9% (N=20) of the participants of the study.
The results indicating no depressive disorders were confirmed in 44.8% (N=30) of parents, borderline values for depression were obtained in 29.9% (N=20) of respondents, and the results interpreted as a risk of depressive disorders were observed in 25.4% (N=17) of parents.
Level of perceived stress in the study group
The average stress level among parents of children hospitalized in the Transplantation Center was 21.03 points (SD=6.88) and ranged from 6 to 36 points. A high stress level was observed in 55.2% (N=37) of parents, an average level in 32.8% (N=22) of them, and a low level in 11.9% (N=8) of the respondents.
Level of social support in the group of parents whose children underwent bone marrow transplantation
The overall level of perceived available social support among parents was 3.34 points and was higher in terms of information support (3.42 points) than emotional support (3.27 points).
The demand for support amounted to 2.90 points and was similar to the level of support sought (2.67 points).
The overall social support currently received was rated by parents at 3.22 points and was similar in terms of emotional support (3.27 points) and instrumental support (3.21 points), and lower in terms of information support (2.98 points). The level of satisfaction with the social support currently received was 3.31 points, and the level of buffering and protective support fluctuated around 2.74 points – Table 3.
Table 3
Social support (BSSS)
It was the immediate family that provided support for parents during their child’s illness (76.1%, N=51), followed by their partner (73.1%, N=49), and, to a lesser extent, the parents of other children in the hospital room/ward (58.2%, N=39), nurses (50.7%, N=34), parents (50.7%, N=34), friends (46.3%, N=31) or doctors (46.3%, N=31) – less often other people/institutions.
The parents surveyed indicated that they had received some (44.8%, N=30) or full (31.3%, N=21) support from medical staff. More than two-thirds of parents strongly confirmed that they had received sufficient support from the nursing team (67.2%, N=45). The access to a psychologist during their stay at the facility was confirmed by 22.4% (N=15) of parents.
The parents surveyed preferred active coping (2.28 points), planning (2.17 points), seeking emotional support (1.92 points), and acceptance (1.80 points), whereas they tended to use psychoactive substances (0.46 points) or humor (0.65 points) to the least extent – Table 4.
Table 4
Parents’ coping strategies (Mini-COPE)
Selected variables and levels of stress, anxiety, depression, and aggression in parents
The age of the child significantly differentiated the level of anxiety among parents. A lower level of anxiety was observed in the group of parents of older children, above 10 years of age (p=0.0107). The longer the time since bone marrow transplantation, the lower the levels of anxiety (p=0.0227) and depression (p=0.0068) were observed in respondents. Moreover, it was shown that the greater the sense of exclusion from society due to the child’s illness, the higher the reported levels of stress (p=0.0086), anxiety (p=0.0015), and depression (p=0.0004). The lack of support from medical and nursing staff also exacerbated parents’ anxiety (p=0.0030, p=0.0083) and depression (p=0.0469, p=0.0306) – Table 5.
Table 5
Levels of anxiety, depression, aggression, stress, and selected factors related to parents
The gender of the parent was statistically significant in determining the stress levels of the respondents. No correlation was found between gender and levels of anxiety, depression, and aggression. However, mothers experienced higher stress levels than fathers (Z=-1.996, p=0.0459). Higher stress levels were found in parents living in cities compared to parents living in rural areas (Z=-3.188, p=0.0014). Marital status and family structure did not determine the level of stress, anxiety, depression and aggression reported by the subjects (p>0.05). Lower levels of anxiety were found in parents who benefited from psychological care during their child’s hospital stay (p=0.0423). No similar relationship was found for stress, depression, and aggression (p>0.05).
Selected clinical variables in children after bone marrow transplantation and the level of stress, anxiety, depression, and aggression in parents
Higher levels of stress (Z=-2.769, p=0.0056), anxiety (Z=-3.639, p=0.0003), and depression (Z=4.474, p<0.0001) were confirmed in parents of children after autologous transplantation.
Lower levels of stress (Z=-3.790, p=0.0002), anxiety (Z=-3.554, p=0.0004) and depression (Z=-4.065, p<0.0001) were observed in parents of children diagnosed with aplastic anemia, acute lymphoblastic leukemia, or autoimmune diseases compared to parents of children diagnosed with neuroblastoma. The level of stress, anxiety, depression, and aggression in parents was not significantly associated with the need for rehospitalization of the child (p>0.05). No statistically significant differences in the level of stress, anxiety, depression, or aggression were found depending on the current phase of the child’s disease (p>0.05).
Stress coping strategies and levels of stress, anxiety, depression and aggression
Stress coping strategies such as positive reframing, acceptance, sense of humor, and turning to religion were more often chosen by parents who experienced lower levels of stress, anxiety, and depression. Parents with higher levels of stress, anxiety, depression, and aggression were more likely to resort to denial, venting, and self-blame. Parents with higher levels of aggression more often turned to psychoactive substances and withdrawal compared to the group of parents with lower levels of aggression (Table 6).
Table 6
Levels of anxiety, depression, aggression, stress versus coping strategies in a group of parents of children who underwent bone marrow transplantation (Mini-COPE)
Levels of perceived stress, anxiety, depression and aggression versus perceived available social support
A higher level of stress, anxiety, and depression is accompanied by a lower overall level of perceived social support available to parents, as well as a lower level of available information support and lower assessment of currently received information support. However, the level of buffering and protective support tends to increase in these circumstances. Parents with higher levels of anxiety showed a higher need for support (p=0.0262), and parents with higher levels of depression rated the support they currently received lower (p=0.0270) - Table 7.
Table 7
Levels of anxiety, depression, aggression, stress and social support (BSSS)
Discussion
Hematopoietic stem cell transplantation is a standard treatment for many life-threatening diseases [1]. However, the course of treatment at a transplantation center and recovery after the transplantation procedure are complex and carry the risk of many complications. The underlying disease and therapeutic process can have a negative impact not only on the condition of the pediatric patient undergoing the procedure, leading to emotional distress [20], but also on their parents and loved ones [7,9].
A child’s illness is a psychologically stressful experience for their caregivers [21,22]. An additional factor generating negative emotions is the need to change the family’s current functioning, connected with giving up a professional career, modifying social roles, financial problems, the need to move to a transplant center, traveling to check-ups, and caring for other family members [23,24]. Such prolonged emotional tension can result in anxiety disorders, depression, incidents of aggression, or even PTSD (Post-Traumatic Stress Disorder) [25-27].
In order to ensure high-quality nursing care, interventions aimed at reducing stress and anxiety in parents of hospitalized children are essential, especially during this difficult period [28]. Despite the wide range of applications of HSCT in the pediatric population, the issue of assessing the mental well-being of patients’ parents remains an under-researched area [29]. It has been pointed out that the psycho-emotional state of parents has a significant impact on their ability to perform caregiving and parenting duties, which in turn determines the therapeutic and developmental outcomes achieved by children [30].
The aim of the current study was to identify selected determinants of the emotional functioning of parents of children who underwent bone marrow transplantation.
The results obtained constitute a multidimensional source of information on the level of stress, anxiety, depression, and coping strategies in the group of parents studied. The impact of socio-demographic, clinical, and psychosocial factors on the emotional state of caregivers, their strategies for coping with difficult situations, and their perception of available social support were also taken into account.
The results of studies conducted in the field of pediatric hematology and transplantology at various research centers using different research tools confirm the high level of stress and negative emotions among parents of pediatric cancer patients and those undergoing bone marrow transplantation [21,26,31,32]. The results of the current study also provide similar conclusions.
The results obtained in the study group indicate the possibility of anxiety and depressive disorders in 38.6% and 24.5% of respondents, respectively. Just as in the studies presented by Rahmani et al. [20], Cepuch et al. [21], Al Qadire et al. [26] and Pinquart et al. [33] and, anxiety constituted the dominant component of the emotional state of parents of children after bone marrow transplantation, which may have resulted from uncertain prognosis regarding survival after transplantation, the risk of recurrence of the underlying disease, the possibility of complications, and the fact that parents were forced to resign from other social roles in which they fulfilled themselves before their child’s illness. The level of anxiety and depression in the current study is comparable to the results presented in the reports by Dermatis et al. [34] and Virtue et al. [35], which also pointed to the particularly important role of anxiety in the process of adaptation of parents/caregivers to their child’s illness.
More than half of the respondents reported high levels of stress (55.4%). Mothers experienced significantly higher levels of stress than fathers, which was consistent with the results obtained by Pawełczak-Szastok et al. [36] in a study analyzing stress in families of pediatric cancer patients. The results obtained can be explained by the fact that women more often take on the role of the primary caregiver during hospitalization, hence their emotional burden is generally higher than that of fathers. Similar conclusions were presented by Cepuch et al. [21], but in the cited report, high stress levels in the group of parents of children with hematopoietic and lymphatic system cancers affected almost 70% of the respondents. The differences in stress levels obtained in the current report and the results presented by Cepuch et al. [21] may result from different criteria for selecting the study group - the cited report only included parents of children and adolescents during hospitalization, which may have determined higher stress levels among respondents.
In the current study, the levels of anxiety, depression, and stress were lower among parents of older children. They decreased over time after transplantation, similarly to the results presented by Phipps et al. [37], and Bemis et al. [38], who indicated that the reduction in negative emotions may be related to readaptation to life at home and elimination of the immediate threat to the child’s life. The caregiver also returns to fulfilling other, previously neglected social roles, which results in stress relief.
Higher levels of stress, anxiety, and depression were found in parents of children who underwent autologous transplantation. This result is surprising, as autologous transplantation is characterized by a lower percentage of serious complications and mortality. This perspective is most likely a consequence of the diseases that are indications for autologous transplants (solid tumors, e.g., neuroblastoma), which have a much more serious prognosis in terms of recovery and 5-year survival. This phenomenon was also described by Ullrich et al. [29], pointing to the long-term thinking of parents, which goes beyond the period of transplantation. This is confirmed by lower levels of stress, anxiety, and depression in the group of parents of children with aplastic anemia, acute lymphoblastic leukemia, or autoimmune diseases, compared to parents of children with neuroblastoma. Furthermore, parental stress, depression, and anxiety were not significantly associated with the need for rehospitalization of the child or the current phase of their underlying disease. This may indicate a high level of adaptation of caregivers to hospital conditions and the difficult life situation they find themselves in.
The coping strategies chosen by parents depended on the intensity of negative emotions. Parents with high levels of stress, anxiety, depression, and aggression were more likely to choose unconstructive methods such as denial, venting, and self-blame. In addition, caregivers with higher levels of aggression were more likely to use psychoactive substances and resort to withdrawal compared to parents with low levels of aggression. Similar results in this regard were presented by Maleki et al. [40] and KruszeckaKrówka et al. [41].
The level of available social support was assessed by the parents of children who underwent bone marrow transplantations as relatively high. In their opinion, the level of information support was more important than the level of emotional support – this stems from the need for reliable knowledge about the child’s current health condition, their prognosis and the diagnostic, care and treatment methods used. Moreover, the higher the level of stress, anxiety, depression, and aggression among the respondents, the lower the level of support they considered to be available. Similar results were also presented by Norberg et al. [42,43] in two independent studies, pointing to the particular importance of a supportive environment in the process of adapting to a child’s illness at every stage, including the period after hospital discharge. It is noteworthy that the expected support received from the medical ward staff and access to psychological support during hospitalization also had a positive effect on reducing the level of anxiety and depression in caregivers of children undergoing HSCT.
Limitations of the presented study include a small group of respondents and the fact that they were treated at only one transplantation center. When planning further studies on the emotionality of parents of children after bone marrow transplantation, it is worth establishing multi-center scientific and research cooperation in order to objectify the results obtained. It is also worth taking into account the differences between the condition of parents of hospitalized children and the emotional functioning of parents of children after their hospital discharge. It would also be advisable to use a PTSD severity scale in the diagnostic survey, as PTSD is often a consequence of prolonged exposure to chronic and acute stress. Scientific literature addressing the emotional state of parents of children after HSCT emphasizes the need for further research that would have a real impact on providing tools to maximize the emotional well-being of caregivers in such a difficult life situation.
Implications
Based on the current study, it seems appropriate to implement routine assessment of the emotional state of parents/caregivers of children after bone marrow transplantation, as well as to learn about the coping mechanisms they use and their sense of available support, in order to plan individualized, holistic care. Such systemic measures may contribute to better long-term health outcomes for children and support their psychosocial development. The value of the report lies in the use of publicly available research tools that are accessible to parents in terms of content and form and do not require interpretation by a psychologist. However, it should be noted that the results of self-report questionnaires are only an indication of the risk of emotional disorders, but do not constitute a formal diagnosis.
Conclusions
Parents of children who had undergone bone marrow transplants, especially mothers, people living in cities, and those affected by a sense of social exclusion, showed high levels of stress. The dominant emotion among the respondents was anxiety. The time since the transplant as well as its type were significant predictors of the level of stress, anxiety, and depression in parents. Higher levels of negative emotions were associated with choosing unconstructive coping strategies, a lower overall level of perceived available social support, and a higher need for support.
