Hope trapped in difficult conditions: children’s experiences with leukemia

Abstract

Background

Cancer is a life-threatening challenge for children with leukemia, and hope is essential for coping with it.

Objective

The aim of this study was to explore the experiences of Iranian children with leukemia that diminish their sense of hope.

Interventions/methods

This qualitative study used a content analysis approach. Data were collected through art-based interviews with 23 school-aged children with leukemia at Tehran Children’s Medical Center Hospital. The data were analyzed in three stages: identifying semantic units, classifying and labeling codes, and reporting results.

Results

The analysis yielded three main themes: physical problems (8 codes), limitations related to treatment protocols and the hospital environment (21 codes), and peers’ negative reactions (3 codes). These factors were found to reduce hope among children living with leukemia.

Conclusions

Hospitalization and treatment protocols are often perceived a hopeless experience for children with leukemia. Hope-based interventions should be considered to enhance their quality of life.

Implications for practice

In providing holistic care to children with leukemia, healthcare providers, particularly nurses, should inspire hope by recognizing and addressing children’s unique experiences.

Introduction

According to the World Health Organization’s 2025 report, an estimated 400,000 new cases of cancer are diagnosed annually among children and adolescents aged 0–19 years. Among these cases, acute lymphoblastic leukemia is the most common type of childhood cancer [1]. A study published in 2019 reported that Iran has the highest number of children with leukemia among the countries of South and Central Asia [2]. Leukemia is the most common childhood cancer in Iran and is associated with approximately a 50% chance of cure and survival [3]. Findings from qualitative studies on children’s experiences with leukemia indicate that they struggle with life-threatening and stressful conditions throughout their illness, making it difficult yet essential for them to maintain and nurture hope [4]. The experience of hope is inseparable from the cancer journey and differs before and after diagnosis [5]. Although individuals may possess an innate or general hope for life, in different situations such as illness they may experience a new and situational form of hope, one that carries a specific and temporary meaning [6]. Previous studies show that children and adolescents with cancer experience hope in diverse ways, with the meaning of hope during illness often tied to concepts such as recovery [7–9]. Hope is a crucial element in enabling patients to respond effectively to the challenges of illness, yet its intensity varies throughout the disease trajectory. This means that different circumstances during illness and treatment can diminish patients’ sense of hope [10]. A qualitative study with four children aged 6 to 9 years showed that aggressive treatments, hospitalization, and painful procedures made it difficult for them to sustain hope [4]. In general, the level of hope among children with chronic illnesses is lower than that of their healthy peers, and changes in hope are associated with health outcomes [11]. For example, reduced hope in children with cancer can negatively affect their quality of life, contributing to increased depressive symptoms, decreased self-esteem, lower health-related quality of life, [12] reduced medication adherence and active coping, [11] and heightened psychological distress [13]. Considering the importance of hope in the lives of children with cancer, and the limited information on factors that reduce hope from the perspective of children with leukemia, further qualitative studies are needed. In particular, studies that directly involve children in interviews can provide a more comprehensive understanding of their lived experiences of hopelessness in the context of cancer. Such insights are vital for healthcare providers in pediatric oncology to identify the factors underlying hopelessness [14]. Furthermore, one of the fundamental needs of children with cancer is spiritual support, and nurses who care for these children play a key role in inspiring hope in the face of difficult disease-related circumstances that may otherwise diminish it [15]. Therefore, this qualitative study, using a content analysis approach, was designed to explore the experiences of Iranian children with leukemia in situations that reduce their sense of hope.

Method

We adopted a qualitative design based on conventional content analysis, as described by Hsieh and Shannon [16]. Content analysis has grown significantly as a qualitative research method in the field of health studies. Content analysis aims to provide knowledge and understanding of the phenomenon under study. It is a research method that involves the subjective interpretation of text data through systematic classification and identification of themes or patterns. Conventional content analysis is typically employed in qualitative study designs aimed at describing a phenomenon when there is limited existing theory or research literature on the phenomenon [16]. A conventional approach to content analysis was considered the most appropriate method for this study because it allows for an in-depth exploration of children’s experiences with cancer and hope without imposing preconceived categories.

The target population of the present study included children with acute lymphoblastic leukemia (ALL), aged 6 to 12 years, who were willing to participate in the study, able to speak Persian, and physically and mentally capable of taking part in the interviews. Exclusion criteria included children who passed away during the study, withdrew consent, or became physically or psychologically unable to continue participating. Using participant selection via purposive approach, 23 children with leukemia who were undergoing chemotherapy in the oncology department of a children’s hospital in Tehran were included in the study. In this study, only children with leukemia were interviewed; family members and medical staff were not included as participants. We aimed to include participants with a range of illness experiences from those newly diagnosed to those experiencing relapse in order to gain a broader understanding of the phenomenon under study. To conduct successful in-depth qualitative interviews with children with cancer, especially in the pediatric cancer ward, the first author established rapport with the children, gained their trust, and respected their preferences regarding the time and place of the interview. The researcher also allocated sufficient time for each child and avoided rushing. For instance, interviews were divided into shorter sessions of up to 45 min, conducted at different times or on separate days when necessary. Additionally, age-appropriate techniques such as drawing and play were employed to help the children express their thoughts, experiences, and feelings more easily.

Interviews conducted by the first author, a female pediatric nurse with several years of clinical experience in pediatric and training in qualitative research methods. Before starting the interviews, the researcher explained her role (as a researcher and not part of the children’s care team) and clarified the study purpose to both children and their parents. Participants were informed that the researcher was independent of their clinical care, which minimized potential power imbalances. Informed consent was obtained from the child’s caregiver, and then the child’s verbal consent to participate in the study. All interviews were conducted individually with each child, either in the children’s hospital room or in the department’s playroom, based on the child’s preferences. In these individual interviews, children described their personal experiences regarding situations or factors that diminished their sense of hope.

For qualitative interviews with school-aged children, experts in qualitative research with children believe that the arts-based participatory approach can be used to encourage and support children in expressing their feelings, thoughts, and experiences, as well as to enrich the depth of the interviews [17]. Following artistic methods recommended by previous researchers in qualitative studies with children, this study used drawing and play techniques to interview children with leukemia about experiences related to situations that diminished their sense of hope [18]. In the drawing technique, children with leukemia were first asked to explain:

1. What happened when you were admitted to the hospital?

2. What was your experience of the disease?

3. What does hope mean to you?

4. What would you like to happen to you in the future, and why is this important to you?

5. At what times did your illness make you feel sad and hopeless, and what helped you feel better?

Next, they were asked to use a white sheet of paper and colored pencils to draw a picture of their experience of living with cancer, particularly focusing on moments of hopelessness. Once the children completed their drawings, the interviewer asked

1. What does this picture show?

2. How does it relate to your sense of hope?

3. Why did you feel a loss of hope in the situation depicted?

4. In what other situations have you felt a loss of hope, and why?

In the play technique, hand or finger puppets shaped like animals were used to interview five children under the age of nine who did not want to draw. First, the child was introduced to the fictional character of the puppet. For example, “This little rabbit came today to meet the children in the hospital and be their friend. He has some questions he would like to ask you. Would you like to be his friend?” In some cases, the child was given a puppet to discuss the reason for their hospital stay with another puppet, which was controlled by the researcher on behalf of the puppet’s character. The children were then interviewed through a puppet play game using the prepared interview questions.

Before conducting the interviews, we consulted with a clinical psychologist at the hospital to develop strategies for addressing negative emotions that might arise during the conversations. Prior to the interviews, we spoke with the parents to explain the potential for negative emotions and discuss ways they could support their child. During the interviews, we carefully monitored the child’s emotional state. If we observed signs of significant distress or anxiety, we immediately paused the interview or changed the topic. After the interview, if needed, the child was referred to the hospital’s counseling and psychology unit to receive professional emotional support. In addition to semi-structured interviews, we used art-based data collection methods, such as drawing and playing. These methods helped children express their experiences more comfortably and indirectly and created a calming environment that reduced potential emotional tension and encouraged them to participate in the study.

Reflexive notes were kept throughout the study. The researcher acknowledged that her prior clinical experience could potentially influence the interpretation of data, and reflexive journaling was used to maintain awareness of these influences during analysis. Interviews were audio-recorded with permission. In addition, children’s drawings were used as supplementary data to enrich and triangulate the interviews. Recruitment continued until data saturation was achieved, meaning no new codes or themes emerged from the interviews. The research team transcribed all interviews verbatim and checked the transcripts against the audio recordings for accuracy. The data were coded independently by the first and second author. Any discrepancies in coding were resolved through discussion until consensus was reached. Themes were extracted from the data. MAXQDA qualitative analysis software was used to organize and manage the data. Member checking was carried out, and a summary of the preliminary findings was shared with a subset of participants to confirm accuracy and credibility.

Data analysis was carried out using the qualitative content analysis approach with three distinct stages [17]. In the preparation stage, semantic units were identified and defined. In the organization stage, codes or labels were assigned to the relevant semantic units. These codes were then grouped based on similarities and differences, with each category receiving a unique label and being further abstracted. Finally, in the reporting stage, the researchers articulated the phenomenon under study by presenting the codes, categories, and supporting evidence extracted from the participants’ textual descriptions. To ensure scientific rigor, the five criteria proposed by Guba and Lincoln were applied [19]. Credibility was enhanced through member checking with the participating children. Dependability was strengthened by conducting peer debriefing. Confirmability was ensured by providing a comprehensive and transparent description of the research process, including data collection, analysis, and concept development, which allowed for traceability of the findings. Transferability was addressed by offering a clear and detailed account of the study process, enabling readers to judge the applicability of the findings in other contexts. Authenticity was achieved through the researcher’s proficiency in interviewing, coding, and data analysis, supported by the necessary skills and training.

Results

In the current study, 10 boys and 13 girls with leukemia at different stages of cancer, from diagnosis (5 children), treatment (11 children) to relapse (7 children), participated in individual interviews, in which they described their experiences of the impact of cancer and hope. From the perspective of children with leukemia, hope in this context can mean a cure; however, the meaning of cure is related to overcoming the physical, mental, and social hardships caused by the disease and hospitalization. Based on their individual experiences, children described a complex of unpleasant events related to leukemia, referred to as the “disease fence,” which made them feel confined and contributed to decreased hope. A clear example is a drawing and interview with a 9-year-old boy, who depicted hope as a person in chains and represented the perceived problems of cancer in the form of a character called “sadness.” He explained that “hope is a prisoner of the difficulties of the hospital, like being afraid of needles, staying away from dad in the hospital, and not playing in the hospital” (Participant number 12) (Fig. 1). Overall, the experience of the “disease fence” consisted of three main categories: “physical problems,” “limitations of treatment protocol and hospital environment,” and “peers’ negative reactions.” From the perspective of children with leukemia, these challenges made them feel confined, as if life itself were a fence. This confinement was distressing for them, yet they maintained hope for a cure as a way to overcome the barriers imposed by the disease (Table 1).

Fig. 1.

A 9- year- old boy drew a picture describing how hope is trapped in the difficulties of the hospital

Table 1.

Theme, Sub-Theme, and Coding Table

Theme	Sub-theme	Example of cods
Physical problems	-	Pain
		Fever
		Nausea and vomiting
		Loss of appetite
		Weakness and fatigue
		Loss of hair
		Mouse and throat sore
		Skin rash
limitations of treatment protocol and hospital environment	Food, activity and interaction	Not allowed to eat chips, pizza or ice cream
		Travel restrictions
		Not allowed to participate in outdoor play and entertainment programs
		Reduced interaction with others
	Needles and serums	Painful
		Stressful
		Cannot play or drawing with it
		Cannot move with it
		Have to stay in bed
	Away from lovely things, person and events while hospitalized	Absent from school
		Miss the family members
		Miss the toys
		Miss the home
		Miss the classmates
		Miss shopping
	Lack of Happiness at the hospital	Locked playroom, mostly
		Less interesting toys in the playroom
		Not being allowed to play in the hospital yard
		Lack of child-friendly design
		Lack of entertainment programs
Peers' negative reactions	-	labeling a cancer boy or girl
		labeling a dying child
		Avoiding interaction

Theme 1: Physical problems

Based on the individual experiences of children with leukemia, each child reported physical problems caused by the disease and treatment complications, such as frequent fever, acute and chronic pain, weakness and fatigue, nausea and vomiting, hair loss, mouth ulcers and skin rashes, were uncomfortable and disruptive. These physical problems occurred at all stages of the disease, with varying severity, and led each child to experience a loss of hope. For example, a 11-year-old girl said “Every day I have a new story, every day I have a problem. Once I had a fever, once my back hurt, once my heart hurt. I felt that I had no hope for life” (Participant number 3). Another 8-year-old girl explain “The first time I got sick I felt very disappointed, I was disappointed in myself because my throat was sore and I couldn’t eat, my stomach hurt. My hands and feet hurt too” (Participant number 18). In explaining his painting, the 12-year-old boy referred to his inability to walk due to bone pain and said “This is me on the hospital bed, unable to walk. It was as I had died because my foot hurt and I couldn’t walk; but now I can walk and feel hope. At that time, I felt hopeless. I mean I don’t have any hope for myself that I will get better and get out of this situation’ (Participant number 7) (Fig. 2).

Fig. 2.

A 12-year-old boy drew a picture describing how he felt hopeless when he was hospitalized and unable to walk

Theme 2: Limitations of treatment protocol and hospital environment

According to the experiences of children with leukemia, treatment protocol and hospitalization, are associated with many difficulties. This refers to the problems and unpleasant experiences of children with leukemia during treatment process and hospitalization, which can diminish their sense of hope.

Food, activity and interaction

Each child described how the restrictions imposed by the treatment program, including limitations on food, physical activity, and social interaction made their lives revolve around a series of care and treatment requirements, which became a key factor in diminishing their sense of hope. In this regard, an 11-year-old girl said “I lost hope in the beginning of my illness because the doctor told me that I shouldn’t eat pizza because it’s not healthy for me. Not eating pizza was a deprivation for me and I felt hopeless. I really liked pizza” (Participant number 8). Children with leukemia are also restricted in activities outside the home, such as playing outdoors, going to the park, attending parties, shopping, or traveling. For some, these conditions make staying at home disappointing, as if they were imprisoned. Moreover, restrictions on outdoor activities reduce their social interactions with friends, relatives, and acquaintances, which further reinforces a sense of being trapped by the disease. The 6-year-old girl expressed “I am tired of staying at home all the time. I want to go out and play. It was snowing and I wanted to make a snowman and play in the snow, but I couldn’t, I was disappointed. Because I’m sick, I can’t see my friend, so I have to stay at home. I cannot see my aunts and relatives. I am sad, I am disappointed. Because the doctor did not allow it” (Participant number 2). Similarly, an 8-year-old girl said “I have bad thoughts coming into my head. She says, ‘Don’t go to the hospital or the doctor.’ Because it makes me sad. I can’t do everything I want, like play or go to the park” (Participant number 14) (Fig. 3).

Fig. 3.

An 8-year-old girl drew a picture describing how she felt hopeless when she has to hospital for chemotherapy

Needles and serums

For children with leukemia, hospitalization means a series of uncomfortable and intrusive discomforting, which in some cases can diminish their sense of hope. The 11-year-old girl said “The hospital is difficult. They all give us injections, sometimes they take a vein or take blood. Hope is waiting for something good to happen and that is to get better. If we get better, we’ll be fine and we won’t go to the hospital’ (Participant number 3). The 12-year-old boy said “The first day I was in hospital I was disappointed because they put needles in me. Now I’m not afraid of needles, but I want to get well soon so that I don’t have to go to hospital again” (Participant number 7). The 6-year-old girl said in describing her drawing that “In this my room in hospital. I am hopelessness. I cannot go out of bed because I have drug and serum infusion " (Participant number 2) (Fig. 4).

Fig. 4.

A 6-year-old girl drew a picture describing how he felt hopeless when she was under drug and serum infusion

In addition to the painful and anxiety-provoking aspect of aggressive treatment procedures, each child with leukemia reported that they were unable to move freely due to continuous serum and drug therapy. These individual restrictions on movement and activities led them to feel trapped or isolated. One 10-year-old boy described his personal experience of constant medication and activity limitations as being imprisoned in the hospital He said “It’s like we’re prisoners here, everything is tied to our hands, and we can’t go out and play. Here is the prison of this serum and drugs, like chains tied to our hands and feet. The nurses are also prison guards” (Participant number 5).

Away from lovely things, person and events while hospitalized

Being away from friends, family, home and toys, school or favorite activities are among the other frustrating challenges a child with leukemia faces when hospitalized and away from the normal routine of life. The 7-year-old boy said “I have no hope when I am in hospital. I don’t like the hospital. I miss my toys; I want to go home and not be hospitalized” (Participant number 1). The 9-year-old boy expressed “I miss my classmates because I should be isolation. I feel disappointed. But if I get well soon, I will go to school” (Participant number 15). The 7-year-old girl said “I miss my father. I miss my brother. I want to go home” (Participant number 19). An 11-year-old girl said “I don’t like hospital because I miss some favorite activates when I am hospitalized such as shopping for New Year. I feel sad, maybe even disappointed. Because I like shopping” (Participant number 13). A 10-year-old girl said “I don’t like hospital because I am missing my dad” (Participant number 13) (Fig. 5).

Fig. 5.

A 10-year-old girl drew a picture to describe how she felt hopeless when she was undergoing chemotherapy and away from her father

Lack of happiness at the hospital

From the perspective of each with leukemia, the time spent in the hospital without enjoyable activities is very long, boring and difficult, and being in this situation can be accompanied by a feeling of hopelessness. It should be explained that the pediatric cancer ward in the present study had a capacity of 15 patient beds and a playroom, but the walls were only minimally decorated with cartons. The 7-year-old boy said “I want to play in the yard or run in the corridor, but I can’t. There’s nothing in the ward, just the beds. I get bored. There is only a playroom and sometimes the rest is closed” (Participant number 14). A 7-year-old girl explained “I get bored here. There is nothing to entertain me. We are all in the room. The toys in the playroom are repetitive. Some of them are ruined, so I am disappointed because there is no happiness” (Participant number 9). An 11-year-old girl highlighted the insufficient attention from nurses to building a loving relationship and trying to make children happy. She said “The nurses just inject the medicine and fix my head and leave. They give us nothing. As if they have no duty to make us happy. If they make us happy, we will be happy and we have hope” (Participant number 4). An 8-year-old boy described his drawing as follows: “I am in hospital. My room has a window. It has stairs. I want to get out of the hospital. The playroom here is not always open” (Participant number 23) (Fig. 6).

Fig. 6.

An 8-year-old boy drew a picture to describe how she felt hopeless when he was undergoing chemotherapy and could not play

Theme 3: Peers’ negative reactions

Individual children with leukemia experienced different feelings and responses when interacting with their peers, which are sometimes painful and bitter for them. They were given hurtful labels, such as a “different child”, “cancer child” or “a child doomed to die”, which makes them feel that they are living an abnormal and hopeless life. The 12-year-old boy said “Sometimes I feel sad and disappointed because some of my friends call me “cancer boy” (Participant number 17). An 11-year-old girl expressed “I was in class, one of my classmates said you have cancer, I don’t want to sit near you at same desk. Once my friend said cancer means you are going to die, I told her that I am taking medicine and I am getting better” (Participant number 4). An 8-year-old girl said “I don’t talk about my illness at school, but they want to ask and say that chemotherapy is deadly, because you have cancer” (Participant number 10).

Discussion

By exploring the individual experiences of children with leukemia, our study revealed that the concept of hope amidst the hardships of living with cancer often feels like being confined within a fence of cancer-related challenges. In this qualitative study involving school-aged children, each child described their personal journey; while some maintained a belief in recovery, they often likened their experiences to being trapped by an adversary they referred to as chemotherapy [20]. The results of a review study in 2024 showed that children and adolescents with cancer maintain hope for recovery, and hope is characterized by features such as a sense of happiness, quality of life, and adaptive behavior, a sense of safety and comfort, and trust in others [8]. Our study revealed that for Iranian children with leukemia, the hope for recovery is closely linked their desire to overcome the challenges posed by the disease and the difficulties of hospitalization. Scientific evidence further supports that children with cancer endure significant physical, psychological, and social distress as a result of their treatment [21]. The results of the present study showed that from the point of view of school-age children with leukaemia, physical, social and psychological changes in their life can be accompanied by a decrease in their sense of hope. According to the scientific literature, one of the most common experiences of children with cancer is the suffering causd by disease, and among them, younger children express physical suffering due to the invasive procedures, while older children express social discomfort and emotional distress more frequently. The experiences of children with cancer show that they attempt to adapt to the hardships of the disease while maintaining a sense of optimism about the future [22]. Children hospitalised for cancer experience pain, suffering, anxiety, or life-threatening situations that can lead to feelings of hopelessness [8]. Since the children in the current study identified physical problems caused by leukemia as factors reducing their sense of hope, the importance of nursing interventions to manage pain and alleviate unpleasant physical symptoms becomes more prominent. In this regard, nursing guidelines recommend effective management of physical pain and distress using both pharmaceutical and non-pharmacological methods [23]. For example, the results of a study in Iran showed that individual play therapy can reduce pain and enhance the sense of hope in 8–12-year-old children with leukemia [24].

In addition to physical pain and discomfort, children with leukemia face various restrictions, especially during hospitalization, which create a sense of imprisonment and consequently reduce their sense of hope. In general, the findings of the present study confirm that hospitalization is an unpleasant experience for children, as the medical environment is less similar to their natural environment and daily life. Hospitalization is associated with numerous difficulties, including stress and pain from invasive procedures, restricted movement due to continuous fluid therapy or chemotherapy, separation from friends, home, and family, disruption of school routines, unmet needs for recreation and entertainment, and insufficient communication skills of some doctors and nurses. In this regard, the study by Gibson et al. showed that children and adolescents with cancer often perceive restrictions in their lives during hospitalization, such as the closure of playrooms and separation from school and friends, describing the experience as being imprisoned in a cage called the hospital [25]. It seems that children with leukemia share similar psychological experiences with other children with cancer regarding chemotherapy and hospitalization, and our study highlighted how these experiences diminish their sense of hope. From a nursing perspective, it is worth noting that nurses can play a crucial role in fostering hope among children with leukemia by ensuring safety, considering their needs and preferences during hospitalization, creating cheerful and child-friendly environments, building relationships based on love and attention, and providing opportunities for play [7].

Another important but less discussed issue in the literature is the role of society in shaping children’s experiences and perceptions of hope. The present study revealed that peers and friends can sometimes weaken the sense of hope in children with leukemia. In some developing countries, including Iran, cancer remains a taboo subject, and patients and families often avoid mentioning the word cancer in daily communication due to fear of negative social reactions. In some cases, families may even hide the disease rather than openly seeking hope and social support [26]. Therefore, promoting a culture of health through the active role of society, media, and voluntary support groups can be an effective strategy to strengthen hope among children with cancer [27]. One limitation of our study is that the results are context-specific, derived from children with cancer in one hospital setting, which may limit their transferability to other cultural or clinical contexts. In addition, because the study relied primarily on children’s verbal responses and artistic expressions, some experiences may not have been fully articulated. Children may have lacked the vocabulary to describe certain feelings, may have chosen to withhold sensitive information, or may have expressed themselves in ways that were open to multiple interpretations. As a result, some aspects of their lived experiences might not have been completely captured in the findings. For future research, it is recommended that interventions based on the experiences of the children in the present study be implemented and their effect on improving their hope be measured.

Conclusion

Children with leukemia face many challenges in life due to the limitations and hardships associated with their illness. This underscores the importance of support from healthcare professionals, particularly nurses, who serve on the front lines of patient care. To deliver high-quality and comprehensive care, nurses must recognize their pivotal role in fostering hope among children with leukemia. This involves providing care grounded in the lived experiences of these children, addressing moments of despair, and effectively managing the factors that contribute to feelings of hopelessness. Potential interventions to reduce the barriers referred to as the “walls of the disease fence” that surround hope may include redesigning ward environments, involving volunteer groups to entertain children, training staff and nurses, and facilitating communication with the outside world through various means.

Authors’ contributions

Both authors designed the study. The first author collected and analyzed the data and wrote the draft of the manuscript. The second author contributed to the data analysis and review of the manuscript.

Funding

There was no funding.

Data availability

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

Declarations

Ethics approval and consent to participate

The Ethics Committee at Tehran University of Medical Sciences approved this study in 2018 (IR.TUMS.FNM.REC.1397.038). Informed consent to participate in the study was obtained from all children and their caregivers or guardians. This study adhered to the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.