Fear, coping and support- from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia

ABSTRACT

Purpose

To describe experiences of fear, coping, and support in 10–17-year-old children under treatment for acute lymphoblastic leukaemia (ALL).

Methods

A longitudinal descriptive qualitative design was adopted. Ten children participated in one to three interviews each (24 interviews in all). Interviews were analysed using a matrix-based qualitative method.

Results

The variety of fears described related to uncertainty, pain and medical procedures, bodily changes and loss of control, complications, professionals’ attitudes, affected school results, and social isolation. Children used various strategies to deal with fear: some more general, to cope with the whole situation, and others more related to specific events such as treatment and tests. The most reported strategies we labelled Accepting the situation, Positive thinking, and Being an active agent. Less favourable strategies were also reported. Health care professionals, families, and friends offered valuable, but different kinds of, support.

Conclusions

Children aged 10 to 17 undergoing treatment for ALL experience various fears. Each experience is individual and changes over time, but there are common patterns. Most children used problem-solving or emotional-regulation strategies, but withdrawal was also reported. Even children who can deal with fear need support from their health care professionals, families, and friends.

KEYWORDS:

• Children
• fear
• coping
• support
• acute lymphoblastic leukaemia

Introduction

The focus of this longitudinal design study was on how children 10–17 years with acute lymphoblastic leukaemia (ALL) describe what they are afraid of, how they handle cancer related fear, and what support they value during their illness. In this report, we use the concept child, rather than teen or young adult, in line with the UNICEF (1989).

ALL, the most common childhood cancer, has a survival rate of approximately 85% when treated with optimal risk-directed therapy (Pui et al., 2015). Adolescents in the Nordic countries during the period of the current study were diagnosed and treated according to the Nordic Society of Paediatric Haematology and Oncology (NOPHO) 2008 treatment protocol, which typically takes about 2.5 years. Initially, the treatment is intensive, with both intravenous and intrathecal therapy. After a year, oral medication becomes more common and hospitalizations decline (Toft et al., 2018).

Fear is an emotional and physiological response to a perceived external threat (Broome et al., 1990; Tamm, 2003). Research on fear in children with ALL (Dupuis et al., 2016; Leibring & Anderzén-Carlsson, 2019; Myers et al., 2014) less often focuses on adolescents. However, one study found that adolescent girls with various cancers experienced their fear as a private battle (Anderzén-Carlsson et al., 2012). Younger children with cancer have more fears about pain, sample-taking, and injections than healthy children in hospital settings (Coyne, 2006; Salmela et al., 2009). Previous negative needle-related experiences among children aged 4 to 13 years could make them afraid during future health care contacts (Lööf et al., 2019). However, children’s hospital-related experiences vary, as do their needs and wishes (Lindeke et al., 2006). Young adult cancer survivors reported having unmet needs during and after cancer treatment and feeling less attractive due to scars. They also rated lower satisfaction with their sexual function than controls (Olsson, Steinbeck, et al., 2018). Systematic reviews examining social outcomes among young cancer patients and young adult survivors show higher rates of social isolation, concerns about sexual intimacy and romantic relationships, strains on family relationships and higher rates of separation, illness-related employment difficulties and unemployment, and financial concerns and dependency (Mavrides & Pao, 2014; Pini et al., 2012; Warner et al., 2016). As young adult cancer survivors display some less favourable long-term outcomes it is important trying to prevent similar outcomes in those children who are currently under cancer treatment. Therefore, to limit the possible negative consequences of ALL illness and treatment in children and adolescents both in the short and long run, it is important to know their fears and worries during treatment, as well as how they deal with these.

Information on how adolescents with ALL cope with fear is lacking in the literature. Anderzén-Carlsson et al. (2012) found that emotionally present family, friends, and professionals helped prevent fear among adolescent girls with various cancer diagnoses. Salmela et al. (2010) divided coping strategies among children into three types of orientation: problems, emotions, and functioning. Studies show that active coping, for example telling HCPs when to start a needle procedure allows children aged 7 to 17 years (mean 12.4) a sense of control during treatment (Ayers et al., 2011), and coping mechanisms they believe are helpful often improve their overall well-being (Janin et al., 2018). To better support children, health care professionals (HCP) need to know the strategies young people use to cope.

Support and security from adults are generally important to all children under stress (Lööf et al., 2019), so it is reasonable to assume they are also important to children and adolescents with cancer who feel afraid. Olsson, Enskär, et al. (2018) suggest that young adult cancer survivors need psychological rehabilitation support from their HCPs during and after cancer treatment. Their study focused on improving poor sexual function and enhancing patients’ sexual lives, but the finding is likely relevant to other areas of life. Studies show that parents and HCPs provide important support to 5–9-year-old children undergoing treatment for ALL, although their roles differ (Leibring & Anderzén-Carlsson, 2021). Parents’ closeness, advocacy, and participation in their children’s care and pain relief during procedures are important in reducing the children’s fears. However, teenagers may find it disagreeable to find themselves dependent on their parents again at this stage of their development (Dominguez & Sapina, 2017).

Peer support and peer interactions are very important to adolescents with life-threatening illnesses. In fact, peer relationships are perhaps the most salient factor in the development of adolescents’ social and emotional well-being (French et al., 2013; Husson et al., 2017). Communication about cancer often prompts valuable social support and has been identified as central in significant relationships among adolescents (Janin et al., 2018).

Healthcare professionals have an important role in empowering fearful children (Kleye et al., 2021). Valuable support from HCPs may change over time and range from providing information and showing children the tools used in procedures to paying attention to their needs and desires. Transition into life after cancer, side effects from treatment, and anxiety about possible recurrence can cause different emotions and require different types of support to meet adolescents’ individual needs (Nathan et al., 2011).

Research about how children and adolescents with ALL—especially pre-teens and teenagers—experience and cope with fear and what kinds of support they value is sparse.

Aim

The aim of this study was to describe experiences of fear, coping, and support during treatment for ALL among children aged 10 to 17 years.

Method

Design

The study had a longitudinal descriptive qualitative design. Data were collected through 24 individual interviews (1–3 per child). The first interview was held approximately 2 months after diagnosis, the second after 1 year, and the third about 2.5 years after diagnosis, when the treatment was about to end or had ended. The interview data was analysed using a matrix-based qualitative analysis inspired by Miles et al. (2014). Qualitative methods are considered appropriate when the aim of a study is to understand an area that has been sparsely described (Morse & Richards, 2002) and are thus relevant for the present study. This study is part of a larger project about fear in 5–18-year-olds being treated for ALL and the first to focus on the older age group

Sample and setting

Eligible participants were recruited from November 2011 to September 2014 with the assistance of designated nurses at all six Swedish regional oncology centres for children. All newly diagnosed children aged 10 to 17 and their parents were informed about the study and the children were invited to participate. With the consent of those interested in participating, the nurse shared their contact details with the last author. She contacted the families, offered additional information and asked for informed consent for the child to be interviewed, and scheduled a time and place for the first interview. Although some of the children were older than 15, an age when children are regarded as competent to provide informed consent on their own, the parent in most cases also provided their informed consent. In total, 10 children (5 boys, 5 girls) aged 10 to 17 years at the first interview agreed to participate. Two children died during the study period, two denied the last interview, and one child was interviewed only twice, due to being treated in accordance with another shorter treatment protocol, which included a stem cell transplant, radiation, and chemotherapy. This treatment was not known at the enrolment to the study. The children reported some severe complications of their treatment: diabetes (n = 4), pancreatitis (n = 3), herpes zoster (n = 2), perforation in the gastric area (n = 2), pneumonia (n = 2), sepsis (n = 2), anaphylactic shock (n = 2), RS-virus, and damaged hip joints.

The study was approved by the Regional Ethical Review Board in Uppsala (registration number: 2010/195).

Data collection

The 10 children participated in one to three interviews during their treatment for ALL. In total, 24 interviews were conducted by the last author, a paediatric nurse and associate professor experienced in qualitative methods who had no previous professional contact with any of the children. Most interviews were conducted at the child’s home (n = 20), a few at the hospital (n = 3), and one at the child’s school, all in accordance with the wishes of the family. In eight of the interviews, one parent was present part of the time, but did not interfere much. All interviews were conducted in Swedish, as all participants were fluent in Swedish. The interviews lasted from 17 to 88 minutes (mean 38 min) and were digitally recorded and later transcribed by an experienced secretary.

The interviews focused on the children’s fears, their ways of coping with them, and what support helped them with those fears. Interviews were adapted to the age and development of each child (Kortesluoma et al., 2003). For example, the interviewer adapted the language to the child’s use of concepts and clarified questions that children seemed to have problems understanding. During the interviews, the children were asked to mark on a timeline of their illness when they had felt afraid. Our initial aim was to capture their worst fears, but we soon realized that these were not easy to define and it would be more meaningful to discuss all of their fears. The timeline helped the researcher to frame follow-up questions and the child to keep track. At the end of the first and second interviews, the children were asked whether the researcher could contact them again for the scheduled follow-up interview. Data were collected from November 2011 to January 2016.

Data analysis

To attain a longitudinal perspective we used a qualitative matrix methodology inspired by Miles et al. (2014), which had been helpful in analysing longitudinal data in the previous studies within the project (Leibring & Anderzén-Carlsson, 2019, 2021).

First, all interviews were read thoroughly by the first and last authors. Case-specific matrices were created in which the two authors inserted all the text mentioning fear, coping, and support from various actors during the three interview times (see Table 1 for an example).

Table 1. An example of how the case matrix was used for each participant. Information inserted could be quotations or paraphrasing the content from the interview. Every case matrix had the headings: most afraid of, also afraid of, coping-strategies, support from parents, support from health care professionals, and other support.

Participant #1	2 months	1 year	2.5 years
Most afraid of	Cancer diagnosis. Will I survive? What will happen?	Looking different: swollen, pale, and hairless.	Relapse. Having to endure falling ill again.
Also afraid of	Loss of bodily control. Being unable to eat and needing gastroenteral feeding. Weight loss. Vomiting. Needing enemas and not knowing how to administer them. Being though to ask silly questions. Catheter insertion. Lower grades at school. Bad news. Pain.	Not having the strength to join in activities.	Lumps. Falling ill again between less frequent check-ups.
Support from parents	Mom and Dad come with me to the hospital. They receive information and share later. Mom helps with feeding. Hugs.	Mom arranges for transportation. Offers sweets. Encourages.	Talks about feelings and emotions concerning termination of treatment. Assists in finding out the results of tests. Parents are always there for one. Asks about feelings.

We inserted text in the matrix as either direct quotations or paraphrases. Cross-case matrices were then created in which data from all case-specific matrices were inserted. Through visual examination of the data, it was possible to identify some recurrent abstract patterns that were used as headings in five final matrices: experienced fear, personal strategies, support from parents, support from HCP, and other support. Under each heading illustrating identified patterns (categories), we marked the aspects each child had mentioned, which allowed us to count how many children had described each fear, coping strategy, and type of support over time (Table 2).

Table 2. Example section of a numerical cross-case summary of children who report practising positive thinking.

	Practising positve thinking
	2 months	I year	2.5 years
Number of participants	10	9	5
Child 1		1	1
Child 4	1	1	1
Child 6		1	−
Child 8
Child 9	1	1	−
Child 11		−	−
Child 17	1	1	1
Child 19	1
Child 20		1	−
Child 23	1	1	−
Total	5	7	3

These matrices, together with the cross-case matrix, guided our initial write-up of the findings, and the original interview text helped us check the accuracy of our post-analysis findings. The first author was responsible for the analysis of fears and the last author analysed the data about coping and support. Both discussed the emerging patterns until they reached agreement.

The results will be described in text illustrating the content of the categories, as well is in figures visualizing the longitudinal perspective. Quotations will be used to give voice to the participants. They were carefully translated to English, and checked by all authors. The numbers following the quotations shows which child is quoted, as well as at which time point (interview 1,2 or 3) The frequency of children reporting about content related to the different categories are presented as exact numbers in the text and as percentages in the figures. The reason for using percentages in the figures is that the number of participants vary at the different time points, and to be able to illustrate changes over time, it was judged as appropriate to use proportions instead of exact numbers.

Findings

The findings will be presented under the three content areas of the interviews; Being afraid, Dealing with Fear and Support.

Being afraid

The children described a variety of fears focusing on uncertainty, bodily changes and loss of control, complications, pain and medical procedures, professionals’ attitudes, and social isolation. These fears varied during the treatment period; see Figure 1.

Figure 1. Children’s fears as reported during the treatment period.

Fears related to uncertainty (9 children)

Almost all children initially reported existential fears related to uncertainty about the diagnosis and the course of treatment. Some children expressed fear of dying: “ … not having been given a definite diagnosis yet, being afraid it would be a serious disease” (6:1). Others were more afraid of complications and of what would happen to them: “Well, I’m uncertain what will happen, and so on.” (1:1). These fears decreased over time.

Fears of physical changes and loss of control (7 children)

Physical changes and loss of control of bodily functions due to the medical treatment frightened the children. They feared looking different from before or from the norm, and some were unwilling to show their hair loss in public. “The worst was not to lose my hair, but to lose my eyebrows” (23:1). One child was bullied for his “moon face” and baldness.

Another child reported needing a wheelchair due to a treatment side effect and her fear of not being able to move around freely again: “Well, what I think about is not ever being able to participate in physical activities again” (17:3).

Some children expressed fears, especially at the beginning of treatment, around their inabilities to perform necessary activities such as using the toilet or administering enemas on their own. Others feared not being able to eat normally and felt being fed by an enterogastric tube or gastrostomy caused them even more trouble, pain, and fear.

Fears related to complications (7 children)

Especially one year into treatment, children feared complications that might cause further suffering or death. Such complications included infections such as sepsis and respiratory syncytial virus, abdominal ruptures, pancreatitis, and anaphylactic shock, while diabetes and other long-term complications caused other fears. The latter, were more related to pain and medical procedures, as well as to the social impact of these complications. Cortisone treatment induced fear and had a negative impact on children’s well-being. For example, it was creepy not to recognize yourself and your reactions, such as when experiencing severe hunger and mood swings: “Yes, the most difficult times were in January. That was when I had the high dose of cortisone” (8:2).

Fears of pain from medical procedures (5 children)

At the beginning of treatment, half the children reported being afraid of pain during medical procedures, particularly of the needles involved in finger pricking, subcutaneous or intravenous accesses. This fear decreased for all children but one, whose fear increased due to unsuccessful procedures. One child also revealed being afraid before the first bone marrow test. The child lacked information about being anaesthetized, as well as the consequences of the test:

I was very frightened. I didn’t know what I had to undergo. I was so nervous. I thought they were going to make an incision and remove some bone from me. And later, I found out that the cut was so tiny, leaving just a two-millimetre scar. (17:1)

The same child described fear of removing an adhesive dressing from the new subcutaneous access, which was hurting. “This fear, or rather, I didn’t know how much pain it would cause me. Now I know it doesn’t hurt, but it still makes me worry a bit.” (17:1)

Fears related to HCPs’ attitudes (4 children)

Children’s perceptions of HCP’s attitudes or competency could also raise fears. Furthermore, the children became afraid when HCPs expressed a lack of experience or knowledge, as well as when they used a non-child-friendly communication. One child whose pancreas had “stopped working” and who tried to convince the nurse that something was very wrong because of her severe abdominal pain, reported that the nurse did not believe her. The magnitude of the pain and the HCP’s ignorance scared her, as she experienced the pain revealing a life threatening condition “I told them that I had severe stomach pain, but they didn’t believe me.” (23.2) Another child wished that HCPs had explained that all questions would be welcomed and answered without judgement: “Well, I was afraid to ask stupid questions.” (1:1)

Fears of affected school results (3 children)

Three children reported fearing that their illness and treatment would have a negative effect on their school results. They were afraid of not keeping up with other children and not qualifying for higher education: “I’m afraid of not reaching the levels needed to enter the education that I’m interested in” (1.1)

Fears related to social isolation (3 children)

Some children revealed that the illness and treatment had an impact on their daily living. They felt isolated, lonely, and alienated when in hospital and unable to meet with their friends and engage in normal social activities: “The worst is not being able to spend time with my friends playing football … ” (9:1). Some suggested that they should be allowed to stay at home, even during the more intense treatments, because it would benefit their well-being.

Dealing with fear

The children described various strategies for dealing with their fears. Some were more general, aimed to cope with the whole situation; others were more related to specific situations, such as treatment and tests. These strategies ranged broadly from active to passive, from positive thinking to giving up entirely. For an overview of changes in coping over time, please see Figure 2.

Figure 2. Children’s strategies for dealing with fear during the treatment period.

Practicing positive thinking (8 children)

Eight of the ten children mentioned in at least one interview that positive thinking helped them deal with their fear. This was both a general strategy used in different situations and a specific strategy against their fear of dying: “I know that most children will survive. So, I’m one of them.” (23:1). Positive thinking included viewing the body and mind as strong and fit, believing in their own fighting spirit, or favourably comparing themselves with others in worse situations. It also included thinking ahead and believing in a better future: “No matter how frightened you are, or whatever troubles you have, you have to think that one day it will be over. It will be tough, but eventually everything will turn out just fine.” (20:2) Finally, positive thinking also meant being goal-oriented, and some described using strategies they had previously practised in sports such as having an internal drive, setting minor goals to achieve on the way to main goals, and competing against the disease: “[I said to myself] I will damn manage. That was my way of doing it … … I just simply tried even harder.” (1:2).

Accepting the situation (9 children)

Accepting the situation was a strategy almost all the children used. It was not often elaborated on, but frequently mentioned in terms of becoming accustomed to their illness, their fears, and the procedures they had to undergo. They described just enduring situations, without reflecting, waiting for the time to pass, or understanding the necessity of enduring unpleasant procedures: “Well, they do this to help me to beat the illness. So, you shouldn’t complain. I did think so every time: eventually, it will turn out okay.” (20:1). Children described continuing living their life one day at a time or by striving to live life as usual. They intentionally tried not to worry beforehand. Although some suffered from complications of the treatment, they expressed acceptance: “It is difficult, and it is hard to accept, but I have to, because that [hip issues, need of wheelchair and crutches] is reality and I cannot escape from it.” (17:3)

Humour was another way of managing, especially for children who had finally accepted their changed appearance because of treatment. Nevertheless, some described having to deal with rude peers at school. One boy described at his last interview that after having come to term with his illness trajectory, he could make use of his experience.

Sharing the fear (4 children)

Another strategy for dealing with fears was to share them with parents, HCPs, and perhaps friends. The children revealed talking with their parents about their fears around the illness and with both parents and HCPs about their fears around medical procedures. Sometimes children initially kept their existential fears, including the fear of ALL recurrence, to themselves, but when asked, they told their parents or HCPs:

Well, I haven’t specifically addressed this issue [fear of a relapse]. It was more like they asked “What will it be like now [after treatment”]? And then I am honest with them, that’s how it works. But I didn’t bring up the subject, “Shit, I am so scared of this and that”. No, we don’t sit down and talk for long’. (1:3)

Fear could also be shared in specific situations not only by words, but also by body language, such as eye contact or when reaching out to hold hand with a parent.

Being an active agent in treatment (10 children)

All children reported that being an active agent in their treatment helped them prevent fear or manage their fears. Expressions of agency included asking questions of HCPs about procedures, either directly or through parents. One child contacted another child who had been under treatment for a different malignancy and asked about that child’s experiences and for advice.

The children also did some procedures by themselves, such as administrating insulin after having developed diabetes as a complication of the treatment, as well as and removing subcutaneous cannulas and adhesive tapes. Furthermore, they reported about applying the topical anaesthetic cream before blood tests. The children also mentioned using individual strategies to prepare themselves during treatment and tests; using ice to numb the finger before pricking, watching or looking away from injections or blood sampling, and counting to three to prepare and feel relaxed. One child always focused on her favourite cuddly toy: “I always want to distract myself during blood sampling, by looking at something else … It helps … I always bring my cuddly toys, every time I go to the hospital” (23:1), while another said he did not want any preparation or information prior to procedures as these only increased his fear.

Being an active agent in treatment also included setting limits on how many tries the nurses were allowed during blood sampling or when using the subcutaneous access. The children talked about taking some control during procedures, for example, by stopping the use of topical anaesthetic cream, asking for a gift after tests and treatments, or asking the nurse to wait for the alcohol to evaporate before penetrating the skin with a needle. They could also ask for a certain nurse to be in charge or to have some nitrous oxide during a procedure known to cause fear. Although the children expressed their will, some revealed that their will was not always respected:

The doctors said “We will try with some antibiotics, to see if it works” [before deciding to remove the gastrostomy]. I said “Why not take it out now? I can’t stand it anymore.” But they didn’t listen to me’. (6:2)

In such cases, the only alternative was to surrender and let the treatment happen.

Three children specifically mentioned taking precautions to deal with their fears about complications or relapse. In general, they felt it was important to abstain from physical contact during some phases of treatment to avoid an infection. Two children specifically mentioned the importance of good hygiene regimens: “Well, I wash my hands often, and I avoid spending time with friends at school who are infected, and so on. That’s what I do [to avoid getting a life-threatening infection].” (4:2). One child mentioned being extra observant of bodily signs at the end of treatment and examining their lymphatic nodules daily in fear of relapse. Being an active agent also included informing peers at school about the illness and its complications, and some highlighted taking on responsibility for physical training to be regain walking ability.

Keeping the fear private (8 children)

Children revealed keeping some of their fears, such as “why me?” or “what if I will not be cured?” and fears about their changed appearance private and ruminating on their own. Some cut their hair before it fell out and some chose to wear a hat to hide their baldness. One boy mentioned always hiding his subcutaneous port under a t-shirt so that no one would notice or ask him about his treatment or condition.

Later in the process, some were more willing to share their feelings, but others found it hard to open up. Instead, friends who wanted to keep in contact were rejected. One child regretted having kept all their fears and frustrations about the illness and it consequences of the illness private and wished that they had been more open with family and friends. Others shared some, but not all, of their worries. Reasons mentioned for not sharing fears included a wish to regain their personal integrity at the end of treatment and to lessen the burden on their parents. One child described using a punching bag, instead of talking to someone to release anger and fear related to the illness and its consequences.

Distracting oneself (6 children)

To prevent thinking about their illness and their fears, children described distracting themselves by trying to keep on with ordinary activities like watching movies, reading books, being with friends, or going for walks or taking up physical activities or sports. Keeping up with friends was important not only as a distraction, but also for their general happiness and well-being. One girl mentioned actively asking friends to come and visit when complications of the treatment prevented her from joining in normal activities, and one boy talked about how happy he was to attend his sports team’s practice, despite being sad about not being able to participate: “When I had the strength, I kept in contact by visiting during practice, yes, I did … . I felt sad that I couldn’t participate, but it was worth going there anyway.” (9:1)

Escaping from fear (5 children)

Half the children tried to escape their fears by not thinking of their illness or avoiding calling it cancer. One said, “At that time I was so fed up with everything. I just wanted to be put to sleep until they’d cured me … … But that was not really an alternative”. (17:2) Others said they initially thought of the illness as a nightmare from which they would awaken. One child reported initial ambivalence to receiving information in order to escape the fear of facing a serious illness. Some described having problems recalling periods of severe illness during their treatment and were unable to reflect on their feelings about being in a critical condition. Others, who had lost their hair, described ignoring people who stared at them to avoid feeling different. One child who feared not succeeding in school described just deciding to think about these problems later.

Support

This last category focuses on the support the children described receiving from HCP, their families, and friends during their treatment for ALL and how they were helped to manage their fears.

Support from health care professionals

When asked about what HCPs did to help alleviate their fears, the children talked about Support through information about ALL and its treatment, Support through trust and empathy, and Support to endure scary procedures. Some children gave various examples of support, while some had problems identifying how HCPs supported them when they were fearful. For an overview of the results pertaining support from HCPs, see Figure 3.

Figure 3. Support from health care professionals during the treatment period.

Support through information about ALL and its treatment (9 children)

Information and knowledge reduced existential fears including fear of the unknown. This was most often mentioned at the beginning of treatment, but was also relevant when complications occurred later in the treatment period.

Not only was the content of information important to the children. They also focused on how information was provided. They appreciated when HCPs sat down with them when delivering important or frightening information, as opposed to standing in the doorway, as one child had experienced. The children wanted honest information, but delivered in a merciful way; they appreciated the positive attitude of HCPs who talked about the success rate for survival and reinforced their hope by talking about treatment regimens while remaining realistic about ALL’s potential lethality. Some preferred when HCPs did not use the word cancer. One child specifically mentioned appreciating when she and her mother were left on their own for a little while after first hearing about ALL and its prognosis. Another child found that HCP’s use of adapted visual material helped understanding the information about ALL. It was also reassuring to be informed about positive results of regular tests.

Another aspect of information said to decrease fear was information about upcoming procedures. Most children appreciated when the HCP explained what was going to happen and showed the tools that would be used. However, one child said such information made him even more scared, and he emphasized that HCPs should ask children about their preferences for information, instead of just providing information as part of a routine. “It looked awkward. Yes, it scared me. So, I don’t think they should show it [subcutaneous port] to children.” (19:2).

It was supportive when the HCPs explained that certain symptoms and reactions were normal during treatment for ALL. This lessened fear and stress for both children and their parents. Another aspect of information regarded as supportive was when social workers informed the children’s schoolmates about their condition, which made it easier to come back to school as the same person, but with different looks, needs and abilities.

Support through trust and empathy (10 children)

All children said HCPs made them feel safe and secure in one way or another. This feeling was based on the HCPs acting in a friendly, calm, and confident manner, both in general and in acute situations, for example, when a child had an anaphylactic shock from the medication:

Well, after they administered the adrenaline, they checked my blood pressure sort of every fifth minute. And they tried to calm me down, so that I shouldn’t … … They kind of sat next to me and stroked me like this. (4.1)

When HCPs were explicit about their extended experience and competency about what to do and how to handle equipment this lessened children’s anticipatory fears of procedures. The children also appreciated continuity in care with HCPs they trusted, as they know the child and their preferences.

The children also felt supported by HCPs joking, and when they listened to the child’s concerns while cheering them up, or just spent some time together, perhaps drawing. One child revealed having had support from a counsellor. Despite benefits of support from HCPs, there were also accounts of being unable to take advantage of HCP’s support.

Physiotherapists offered important support by teaching children simple movements and by being encouraging, which was especially comforting when feeling extremely weak. Finally, the hospital environment itself was also at times, described as a safe place representing friendliness, competence, and strict hygienic regimens, although some children felt the opposite.

Support to endure scary procedures (7 children)

Most children who described this type of support referred to fears during treatment and tests and appreciated the use of various methods to alleviate their fear of pain including topical aesthetics and tape-removing creams, sedatives, nitrous oxide, and general anaesthesia.

The children felt supported when the HCPs tried to meet their needs and wishes by distracting them, talking about their interests, reading them a story, or encouraging them to participate in various procedures. “Well, they said … all the time they sort of said ‘This will work out just fine’, and then I felt more relaxed and braver. I felt encouraged. They’re really good at that [being encouraging]”. (20:1). They also appreciated when the HCPs helped them find strategies to relax, such as deep breathing, to better endure a procedure and not panic.

Parental support

Parents provided their children with important types of support, which we categorized as Offering closeness and consolation (mentioned by all children at least once), Advocating for the child, Offering help with daily activities, Being encouraging, and Offering distraction during procedures (Figure 4). Some children gave many accounts of support, while some found it difficult to define what their parents had done to support them and alleviate their fears.

Figure 4. Parental support during the treatment period as described by the children.

Offering closeness and consolation (10 children)

Offering closeness and consolation was the support most mentioned by participants. The children shared many examples of this during the three phases of treatment covered by the interviews. At the first interview, this support was often related to the parent always being present at the hospital and at home and offering physical contact such as hugging and handholding. Parents also offered consolation by sharing the children’s fears of the diagnosis but also assuring their child that things would get better.

Yes, my mum comforted me … We were both so sad, but we said “it will work out just fine” [I will survive], like that … We kept close to each other … Perhaps we both comforted each other. (23:1)

One child whose parent had own experience of cancer thought the parent was especially able to understand and support them through the challenges.

At the second interview, parental closeness and consolation was less physical, but still important. Parents calmed their children and talked about their fears of relapse. “Mom and I have touched upon it at times, being really afraid that the cancer would strike back … … It would not be a nice thing, having to go through all of this again” (17:2). One child talked about a friend from the hospital who had died from complications. The parents had arranged an informal memorial service at home, which allowed this child to grieve and talk about sorrow and fears of developing similar complications.

Parental closeness and consolation were also important at the end of treatment. Parents expressed their love for the child, talked about feelings around terminating the treatment, and asked questions, but also waited for the child to be ready to talk. One child mentioned that the mother tried to reach out for talks, but the child was unable to respond at the time.

Advocating for the child (9 children)

Almost all children mentioned their parents’ advocacy for them as important. The single most reported support within this category was help gaining information about the illness and treatment. Parents could often provide answers to simpler questions and could ask the HCPs when they did not have the knowledge. Two parents documented their children’s condition and care during a time of extreme illness and sedation and shared this with them later, at what they considered an appropriate time:

Child # 20:2:

I know it has happened, because my dad has written it all down.

Interviewer:

OK, when did you read that then?

Child # 20:2:

When I was discharged, he showed it to me. But it was kind of the stuff I remembered anyway.

Interviewer:

That’s sounds a bit odd, that you had an awareness of what happened in a way?

Child # 20:2:

Yes.

Interviewer:

Was it good for you that he wrote it all down?

Child # 20:2:

Well, it doesn’t really matter to me. But I guess it is good, because then I got to know kind of what had happened.

Parents also advocated for their children by observing and reporting significant symptoms, disallowing repeated blood sampling, or sharing relevant information about the child’s fears with HPCs and others. One child described a situation where advocacy was missing, and expressed the wish that the parents had been on the child’s side, instead of on the physician’s side, when discussing the cause of pain.

Offering help with daily activities (80%)

The practical help varied over time and among the children. On the first occasion, children valued their parents offering them a ride so that they could join in with activities with friends. One child had difficulties with eating and appreciated their mother’s help with feeding. Another child appreciated when their parent provided them with topical aesthetic cream to use during blood sampling, and one found it helpful when their parents helped them with insulin and other needs due to the complication of diabetes. “‘How should I remember to take my insulin?’ That’s what worried me the most [when being discharged]”. When asked how they managed, the child said, “Mom, Dad, and I shared the responsibility” (23:1).

One year into treatment, the help most appreciated was related to managing daily medications. One parent also helped with breathing exercises to avert possible complications. At the last interview, the practical support mentioned was less defined.

Being encouraging (6 children)

The children mentioned quite briefly that their parents were encouraging, but they offered little further explanation. They said that their parents challenged them to talk about things they would enjoy doing in the short-term or mid-term future, when they would be cured : “My dad talks to me and I listen … … He talks about other things [than illness] and asks, ‘When you are cured, what do you want to do then?’, and such”. (6:2). Parents also assured their children that certain HCPs were reliable and had the skills and knowledge needed to take care of the child, which was encouraging. Finally, within this category there were also accounts of the parents pushing their children to attempt different things, which they would not have tried without this support.

Offering distraction during procedures (2 children)

Two of the ten children talked about the benefits of being distracted during medical procedures. One mentioned being bribed by sweets and the other related how their parent kept them amused by talking, showing films on the mobile phone, and playing music. This parent also encouraged the child not to look at the syringe during needle-related procedures.

Other support

Other support described by the children came from friends, extended family, and school (Figure 5).

Figure 5. The three categories of support reported by the children during the treatment period.

Friends who are there when needed (10 children)

All children described support from friends and time doing ordinary things with them as important. Friends visited at the hospital, kept in contact online, sometimes brought presents, and would talk about the child’s worries, and were encouraging. However, some children stressed that they did not want to talk to their friends about their illness, and one specifically said that he avoided seeing friends who would raise the topic.

Besides their usual friends, the children also talked about the new friends they had met. These friends currently had or had had cancer, too, which allowed the child to ask about specific issues. It was reassuring to be with these friends, who could understand their situation better than anyone else:

They are ill too, and thus they understand how it really feels. So, that was important to me to see them, too. Because then you can really talk about it [what it means to be ill]. The ordinary friends, of course they try to understand, but they cannot understand the same way, although they want to. (1:2)

Similarly, it felt special to spend time and share their experiences with other children needing support.

The (extended) family is important in difficult times (6 children)

Most children revealed that various family members offered support in different ways and visited them in hospital, offering distraction and comfort when times were difficult. They were good listeners and could offer good advice. One child said that an older relative had said “Everything must come to an end; happiness must come to an end, and that is true also for all the difficulties in life” (17:2), which made the child hope for a better future. Some children also mentioned feeling supported by grandparents helping take care of siblings, thus allowing their parents to spend more time with them at the hospital. One child specifically mentioned that she had missed visits at the hospital from her sibling, which would have made her time in hospital easier to endure.

Teachers help to keep up with school (6 children)

About half the children mentioned help keeping up with school as supportive and most reported help coming from a teacher. Teachers encouraged them to keep up with their studies and suggested what to prioritize. ‘Well, the teacher said, “It´s enough to reach ‘pass’ and try to take the examinations when you have the strength”, and so on. So that helped me to relax, knowing that I’ll manage’ (1:1). Sometimes teachers adapted the teaching environment. Some children felt supported when their teacher provided them with tasks similar to those of their classmates to perform when they could not attend regular school, and one child appreciated being offered education at home. The children also appreciated the collaboration between the teachers at their regular school and those at the hospital school, who shared their knowledge of the child and facilitated the child’s ability to keep up with school and attain necessary grades.

Discussion

The findings show that fear related to uncertainty was common at the start of treatment, fear related to complications was more often an issue one year into treatment and that the fear related to bodily changes increased during the illness trajectory. The children used a variety of strategies to cope with their fears, of which Being an active agent in treatment, Accepting the situation and Practicing positive thinking were the three most often mentioned. The children benefitted from various support from HCPs, such as information, emotional support and help enduring scary procedures. The parents primarily offered closeness and consolation, advocated for the children and offered practical help. Others, such as friends, extended family and teachers were also important sources of support.

Fear

Uncertainty was the most reported fear and included existential fears and fears of what the treatment might bring. Although this was most prominent at the time of diagnosis, it was still present for half of the children during treatment. This finding differs from patterns described by younger children (5–9 years) in a previous study within the greater project, who primarily described fears of dying and of relapsing at the end of treatment (Leibring & Anderzén-Carlsson, 2019). We do not know the reason for these differences, but it could depend on age and maturity, as it may be easier for older children to verbalize their feelings and emotions (Abrams et al., 2008). Age is believed to have an impact on what children fear (Nicastro & Whetsell, 1999).

Fears of pain and medical treatments were most prominent at the beginning of treatment, but lessened later, perhaps because more intense intravenous and intrathecal treatment were replaced by less intense treatments with fewer hospitalizations (Toft et al., 2018). Although this pattern is similar to that in the younger children (Leibring & Anderzén-Carlsson, 2019), it is surprising, as many of the children in the present study suffered from severe complications, which led to additional extensive treatment. However, the younger children revealed getting used to treatment (Leibring & Anderzén-Carlsson, 2019), and perhaps the older children did too, despite complications.

Fears related to physical changes and loss of control of bodily functions are not unique to this study. Teenage girls (14–16 years) having had cancer shared their experiences of such changes causing multi-dimensional fears (Anderzén-Carlsson et al., 2008). As opposed to the findings by Olsson et al. (2015), we found no fears around possible relationships with changed appearance, sexuality, and future (in)fertility. This could be because the children in the present study were younger than the participants in Olsson’s study, who were 15 to 29 years old (Olsson et al., 2015). Furthermore, we did not explicitly ask about their views of the future or sexuality and fertility. Instead, the topics that appeared from the interviews were initiated by participants themselves.

Dealing with fear

We identified in our results all three coping strategies for younger children defined by Salmela et al. (2010): problem-oriented (trying to eliminate the fear by seeking information, solving problems by oneself, or asking adults for help), emotional (trying to attain balance), and functioning-oriented (withdrawal, aggressive behaviour, hyperactivity, or play). Children who asked for information about ALL and various treatments used problem-oriented strategies. Accepting the situation and using positive thinking can be interpreted as emotional coping strategies, whereas functional coping was represented in children who distanced themselves from others and tried to escape from their fears, especially a year into treatment. Although the wish to escape might be expected closer to the diagnosis, the children using this strategy at a later stage may have been those suffering severe complications and feeling they had had enough and that their illness had taken an unwanted and unexpected turn. Trask et al. (2003) measured coping thoughts and behaviours in thirty-eight 11–18-year-old adolescents with various cancers. They reported using more engagement (problem solving, cognitive restructuring, expressing emotions, and searching for social support) than disengagement (problem avoidance, wishful thinking, social withdrawal, and self-criticism) strategies when coping with stressful situations, which is similar to our findings and perhaps considered to be more useful. Trask et al. (2003) also identified gender differences, where girls relied on engagement strategies more often than boys did. We did not make any such gender comparisons. Similar to findings in previous research, most children, irrespective of their age, wanted to participate in their treatment (Darcy et al., 2014; Kleye et al., 2021; Olsson et al., 2015).

In the current study, as well as in previous studies (Han et al., 2017; Leibring & Anderzén-Carlsson, 2021) there were connection between coping and support which is dependent on the child’s interaction with another person. According to Han et al. (2017), children’s coping strategies can be categorized as dependence on oneself, dependence on professionals and dependence on parents. In the findings, there are examples on the child’s dependence on parents and professionals, but also of parents or HCPs trying to support the child, who in turn rejects this support and at a later stage regret this.

Support

All children described parental closeness and consolation as important throughout their treatment. Previous research in adolescents with cancer identified talking with parents as a way of dealing with fear (Anderzén-Carlsson et al., 2012; Stegenga & Ward-Smith, 2009). However, some children also revealed a need to deal with their fears in private, which indicates a need for vigilance in adapting to children’s individual needs.

Parents have been found to be important for facilitating children’s social development, including meeting with friends and keep up with school (Janin et al., 2018). This was not a prominent pattern in the current results, although some narratives did mention the supportive nature of parents driving their children to activities and helping them keep in contact with school.

In the early phase of illness, information about ALL and its treatment, together with support during scary procedures were most prominent when describing support from HCPs. Later in treatment, it was more important that HCPs offered trust and empathy. However, as in previous findings (Anderzén-Carlsson et al., 2012) and mentioned above, some children wished to keep their fears private. Thus, HCPs must take care to decide whether to offer support or keep some distance (Anderzén-Carlsson et al., 2007). Darcy et al. (2016) argued that HCPs should support children during and after treatment and Mavrides and Pao (2014) emphasized HCPs’ need for guidelines to communicate with children. Williamson and Rumsey (2017) specifically highlighted the need for support to children with an altered appearance, but this was not identified in the current study.

The children in the present study did not generally ask for support at the end of treatment, but quite a few expressed fears and uncertainty about changes in their body and bodily functions. They expressed wishes for comfort, security, and emotional support from HCPs at end of treatment, in line with Olsson, Enskär, et al. (2018), who highlighted the children’s need for psychological support after the end of treatment.

The results show that it was important for the children to keep up with friends, as shown in previous literature on adolescents diagnosed with cancer (Anderzén-Carlsson et al., 2012; Stegenga & Ward-Smith, 2009). Previous studies including children at different ages (Anderzén-Carlsson et al., 2012; Darcy et al., 2014) have also highlighted the importance to these children of keeping up with school. For more than one reason this may be especially important in adolescence. School friends are especially important to adolescents (D’Agostini et al., 2011), and emancipation and high grades might be necessary for them to reach future educational and career goals. Therefore, it is important that parents and HCPs facilitate children’s keeping up with school. Furthermore, the results also highlight the importance of support from relatives, other than the parents, in line with the findings by Olsson et al. (2015).

Strengths and limitations

A major strength of this study is its longitudinal perspective, giving children an opportunity to voice their experiences of fear, their ways of managing their fears, and the support they valued over time. The repeated interviews often led to richer data as the children got to know the researcher and the interview situation. Some children, however, denied to participate in the last interview, which could have had an impact on the findings. Nevertheless, the longitudinal design made it possible to capture the children’s experiences at specific time points, rather than collectively in retrospect. This allowed us to investigate patterns over time and identify common changes. A possible limitation is the small sample, but despite including only 10 children the dataset comprises 24 individual interviews rich in data. Based on the rich data from repeated interviews we believe that we reached data saturation. No new themes emerged in the later interviews; only some new nuances that could be embraced in already identified themes. This feeling was later confirmed in the analysis. Despite using percentages when displaying the results, the ambition was not trying to generalize the findings beyond the study sample, but instead to offer an opportunity to follow the pattern of fear, the dealing with fear and what was regarded as valued support over time.

Conclusion and clinical implications

Children aged 10 to 17 undergoing treatment for ALL experience various fears. Their experiences are individual and change over time, but some common patterns were identifiable. Most of the children in this study used active strategies to deal with their fears, but some did not. Both parents and HCP played important, though different, roles in providing individualized support during the entire treatment period. Nevertheless, as more than half of the children at end of treatment revealed fears related to uncertainty and to changes in their bodies and bodily functions, it seems reasonable they should need post-treatment support.

Acknowledgments

We wish to thank all the children that participated in this research, and their parents who generously shared their time and effort by arranging for us to conduct the interviews. We also wish to thank the contact nurses at the Regional Child Oncology Centers who helped with the recruitment.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The authors elect not to share data for confidentiality reasons.

Additional information

Funding

The research was funded by The Swedish Childhood Cancer Foundation [Grant number PR2009-0016].

Notes on contributors

Ingela Leibring

Ingela Leibring is a registered nurse and midwife, with a BSc in Nursing and a Degree of Licentiate of Philosophy in Educational work. She holds a position as a lecturer at Karlstad University, Sweden. She has previously conducted research about fear in younger children with acute lymphoblastic leukaemia.

Annica Kihlgren

Professor Annica Kihlgren has a background as a registered nurse in haematology nursing. Today, she is working at the School of Health Science, Faculty of Health and Medicine at Örebro University, Sweden. She is teaching at undergraduate, graduate and postgraduate levels, with focus on nursing and qualitative methods.

Agneta Anderzén-Carlsson

Agneta Anderzén-Carlsson is a paediatric nurse and professor who currently holds a position as a researcher at Örebro County Region, Sweden, as well as a part time position at the Inland Norway University of Applied Sciences, Elverum, Norway. She has two major research focuses: the health and wellbeing of children and families and the psychosocial health of people living with deafblindness.