Falling and rising in the vortex of cancer: children’s adaptation with cancer: a qualitative study | BMC Psychology

Experiences of children with cancer in terms of adaptation were described as falling and rising in the vortex of cancer. Based on this concept, children are constantly trying to adapt to their disease based on their disease recovery/exacerbation status and support systems.

Physical challenges

The physical challenges experienced by these children included disruption in breathing pattern, disruption in nutritional pattern, disruption in activity and rest pattern, collapse of the protective system, unpleasant accompaniment of pain, and agitated nerves. The mother of a participant mentioned: “Every time his disease relapses, he breathes with difficulty and must receive oxygen all the time.” (Participant 4).

The field note about disruption in nutritional pattern: “The child felt nauseated and loudly gagged several times.” The mother stated: “She hasn’t even had water and her stomach is completely empty.” (Field note 3).

A 17-year-old adolescent said: “I experience weakness and malaise because of the medication. I feel dizzy”. (Participant 2)

A doctor said: “They experience hair loss due to the side-effects of the medications. Their skin is dried or discolored on the face, eyebrows, and eyelids. White lines may appear on the nails.” (Participant 20).

A 13-year-old boy said: “I was in a lot of pain. I could not sleep at night because of it. I had to take a bath and pour warm water on it to relieve pain. My mom kept massaging my feet, but the pain wouldn’t go away.” (Participant 21).

Fragile self-concept

Based on the findings, extensive and debilitating cancer can lead to a “distorted body image” in the physical self and a “fragile personal self” in the personal self-component. “Feeling of ugliness following hair loss” and “efforts to regain fitness” were the major concepts of distorted body image.

A 10-year-old boy said, “I’m not happy about my hair loss; I feel embarrassed. I have become ugly. I was very pretty when I had hair.” (Participant 7).

The aunt of a patient mentioned: “He is really sad because he has been obese due to the medications. He hardly do exercise to lose weight with the help of his father.” (Participant 12).

“Apprehension”, “emotional behaviors”, “fragile spirituality”, “threatened future”, and “efforts for positive thinking” lead to an “unstable personal self” in children with cancer.

“Apprehension” was abstracted from “rumination of hospitalization” and “distress and torment of diagnostic-therapeutic methods”. The thought or experience of painful diagnostic and therapeutic methods made these children feel distressed and tormented constantly. A 13-year-old girl stated, “I couldn’t sleep until 5 in the morning last night because I knew I’d be hospitalized the next day. I kept thinking how many venous catheters they’d be placing.” (Participant 22).

These children demonstrated “emotional behaviors” such as “crying”, “agitation”, “impatience”, “discomfort”, and “grumpiness”. A 17-year-old boy stated, “I’ve become angry, stubborn, and cross. I do not want to use my disease as an excuse. However, it’s something others have to accept. Anyone who sits on these beds will start nagging and being stubborn.” (Participant 3).

The patients and their families took refuge in religious and cultural beliefs to control and manage the stress caused by cancer. These children and their families believe in invoking God and saints for recovery. Thus, when their patients are not recovered and the treatment is prolonged, they start complaining to God and the saints. One of the participants said: “I used to tell God, ‘Cure all the patients who are at the hospital. Then cure me too. Don’t let me suffer too much. Sometimes, I complained to Him about being ill.” (Participant 22).

Upon experiencing “lost health and beauty”, “endangered academic-occupational future”, “disrupted life routine”, and “endangered life expectancy” as well as with the prolongation of the treatment process and lack of recovery, some children lost their hope and spirits, and became depressed over time. A nurse declared the following about a 17-year-old boy: “His mother says he has thought about suicide several times.” (Participant 18).

Some children believed that maintaining their spirits affected their recovery. One of the participants said: “When this happened to me, I decided to make myself happy, instead of being sad. I keep telling myself it’s like a cold and I’ll be fine one day. I imagine the future when I’m fine.” (Participant 21).

Difficulty of role transition

A child’s primary role in the family is that of a child and a student, and playing these roles is difficult under the effect of cancer. However, in most cases, children tried to demonstrate “responsibility despite cancer” by “adjusting responsibility at home” and “continuing education despite difficulties”. A mother mentioned: “During treatment, she kept cleaning her room; even when she was in a poor physical condition.” (Participant 22).

A 16-year-old girl stated: “At the beginning of the disease, I asked my doctor, ‘What will happen to my studies?’ He replied, ‘A teacher will attend the ward.’ When we went back home, we hired a tutor, also my elder sister and brothers helped me. I went to school only for the exams.” (Participant 1).

Loss of income (secondary role): Some adolescents used to work and earn money for themselves and their families, and the disease led to the loss of their jobs and income. A 17-year-old boy stated, “I used to be a street vendor, but, physically, I can’t do it anymore.” (Participant 5).

Trying to tolerate cancer (tertiary role) expresses the participants’ experiences in making efforts to accept the patient role. Primary categories were: “in search of diagnosis”, “cancer bottlenecks”, “treatment adherence”, and “reduction the social activities”. Many children and families ignored the primary physical symptoms and turned to “self-treatment”; this led to a “delayed visit to the doctor”. A participant mentioned: “My foot hurt so much. I took a pack of Ibuprofen a week, with no effect. Then, I told my dad, ‘Let’s go to a doctor or hospital and see what it is.’ (Participant 21).

The participants declared that, after the diagnosis of cancer, they faced “cancer bottlenecks” including efforts to understand cancer, hiding the disease from others, not accepting the limitations, and the need for the passage of time. These children were making “efforts to understand cancer” by understanding it through experience, asking others, searching the Internet, and reading books. A 17-year-old boy said, “No one has told me its cancer. I searched the Internet and found what it was. When I ask my mother, she says it’s not cancer.” (Participant 5).

Many children did not wish for others to know their diagnosis and the reason was the fear of being abandoned by them. This is why they did not wear a hat or mask because it would attract attention, and it would bother them if their family would tell others about their disease. A 13-year-old boy said, “People kept asking me why my hair was falling. I was fed up with all these questions. I was afraid they’d leave me if they’d know what my disease was.” (Participant 21).

“Lack of adherence to doctors’ orders”, “lack of adherence to isolation and “lack of adherence to dietary restrictions” were evidence for “not accepting the limitations”. A mother said, “The doctor wouldn’t allow me to send him to school, but I do because he really likes to go.” (Participant 4).

The adaptive behaviors experienced by these children included “adherence to doctors’ orders”, “performing diagnostic and therapeutic tests”, “adherence to isolation”, and “searching for a healthy lifestyle”. When the researcher was present in the field and during patient visits, a 17-year-old patient posed the following questions to his doctor: “What can I eat? Would take-out be harmful? Can I go to my friend’s birthday party? Would riding a motorbike hurt me? Can I go to the gym?” (Field note 3).

Due to the nature of the disease or the medication side effects, these children experienced a “reduction in social activities”. A participant mentioned: “Before this disease, I had a black belt in Karate. But after the disease, I had to quit it.” (Participant 5).

Disruption of the path to independence

In this study, significant others included the family, friends, relatives, teachers, ward psychologists, nurses, and doctors.

“Others’ educational role”, “others’ dutifulness”, “boosting morale”, “normalization”, and “continuing relationships with others” were among the children’s empowering behaviors by significant others, while “a sense of debt to the family” and “entertaining oneself alone” were the children adaptive behaviors.

Children felt a debt to the family because the family took the trouble of maintaining hygiene, took care of them, felt sad because of their illness, and had financial problems because of the disease. Some children made “efforts to compensate for the family’s troubles” by thanking their mothers for always accompanying them in the hospital, improving their relationship with the family because of their support, and studying during treatment. The aunt of a participant said: “My niece used to say, ‘I should compensate for this disease and the trouble it has caused for my family by studying and education’” (Participant 12).

“Social isolation” and “emotional conflict with others” were the significant others’ limiting behaviors towards the children, whereas “envying others’ health” and “having expectations of others” were among the children’s maladaptive behaviors. A 10-year-old girl noted, “My friends laugh at me; they call me bald. I don’t like to be called bald. It offends me. I don’t play with them anymore.” (Participant 6).

A 10-year-old boy declared: “When I watch healthy children playing from the window, I feel sad because I can’t play like them” (Participant 23).

In the focus group discussion, one of the participants mentioned the following about the nurse’s crying during cannulation: “Ms.…[the nurse] has cannulated half my veins; she cried when she saw my state.” (Participant 23).

According to the participants, support systems included the family, the healthcare system, the educational system, the members of charity associations, and insurance companies. Almost all the significant others for the children were part of their support system as well. The preliminary categories of this subcategory were “the financial problems of the family”, “a lack of an integrated and purposive healthcare system”, “lack of specialized insurance”, “sufficiency of the educational system”, and “benefits of the charity associations”.

A nurse said: “We had a patient, the family of whom did not have a good economic status; he was really sad and had not coped with his disease. He was hurt more because there was also a financial burden to bear. There was once a boy, almost the same age as him, with the same disease, but better economic status. Our other patient had coped with his disease better because of the better economic status of his family” (Participant 17).

The “lack of an integrated and purposive treatment system” included a delay in providing services to patients, inappropriate time of some nursing and therapeutic care, and lack of facilities in the ward and medication challenges. The most important concerns of the children admitted to the ward were “inappropriate time of some therapeutic and diagnostic measures or nursing cares”. A participant mentioned: “They used to wake me up at 3 in the morning for cannulation” (Participant 23).

Uninsured families or those with low-coverage insurance were in trouble paying for the treatments. A mother said, “His treatment is too expensive and there’s no one to support us. We visited State Welfare Organization and The Mahak Foundation; they said, ‘It’s a difficult-to-treat disease and not covered.’…. only pays a part of the costs of medications. We pay for the rest of the treatment costs, even though my husband is a worker” (Participant 9).

The stimulants belonging to each mode are presented in Table 2.