Only four people participated in face-to-face interviews with researchers, and 17 chose online video interviews instead owing to the COVID-19 outbreak. Table 2
provides a summary of the respondents' percentage distribution. As shown in Table 3
, we found 4 themes, 14 sub-themes, and 38 codes. These needs of informal caregivers included: needs for relieving psychological stress, requirement for on-campus assistance, demands for medical help, and the desire for financial aid. Below is a description of these requirements in more detail.
Needs for relieving psychological stress
According to the majority of informal caregivers (15/21) who reported psychological stress, both caregivers and young patients needed psychological support. (#01, #02, #03, #04, #05, #09, #12, #13, #15, #16, #17, #18, #19, #20, #21).
Relieving the psychological pressure of caregivers
During the first year of surgery, the informal caregivers (#01, #02, #03, #05, #15, #16, #18) were primarily troubled by complications, especially the presence of symptoms associated with craniopharyngioma, such as headache, blurred vision, abnormal urine, high body temperature, and so on. Any discomfort expressed by the child has the potential to increase their level of mental stress. It was not an overstatement to say that everything the doctor said to them both before and after the procedure stuck in their minds. The location of craniopharyngioma, the difficulty of surgery, and the unpredictability of the child's future health made them feel utterly out of control. So, after the initial period post-surgery, the main psychological concerns of informal caregivers (#04, #05, #12, #13, #20) were the recurrence of craniopharyngioma and the fear of returning to work. Caregivers (#01, #02, #03, #04, #09, #16) were so preoccupied with the health of their patients that they almost forgot about their own responsibilities. They were afraid to shift their focus in life when they should have gone back to work. Almost half of the caregivers were full-time caregivers who were permanently immersed in their children's illness and pain. In addition to height and weight, when postoperative patients reached puberty, the development of secondary sexual characteristics and fertility came to the attention of caregivers (#12, #16, #20, #21). Traditionally, it has been assumed that brain surgery has an impact on a person's intelligence. Only a few informal caregivers (#15) described how uncomfortable they felt about the stigma associated with head surgery and potential mental impairment.
#16 Well, I don't have a job. I haven't been working since he got sick. I've been taking care of him the whole time. After the operation, because he is often ill from time to time, I always worry about it. I have been feeling nervous like this for several years now, from the early days when he was diagnosed to post-operation. As he has been constantly unwell, I don't care about anything else. Taking care of him is almost my whole life.
#13 How can I not be worried that my son isn't developing? If he could develop, I would have no trouble, but I feel like I can't live now. Professor Li said, if the treatment is timely, he may improve, otherwise I have two sons and face losing one, and in our village, this is especially difficult because of tremendous social pressure to have offspring.
Relieving the psychological pressure of minors
In terms of children, many caregivers (#04, #05, #09, #12, #18) reported that their adolescent patient was more irritable after surgery than before. Some caregivers described their sadness and confusion about this, and they thought what they felt was detrimental to maintaining a positive relationship. One minor patient (#04) expressed suicidal thoughts to the informal caregiver we examined, with the caregiver expressing helplessness at the time. Even with the aid of wigs, some caregivers (#03, #12, #15) did not know how to deal with short hair and scars following surgery. The imprint of the ventriculoperitoneal drainage tube in the neck also upset children and their parents. These traces of illness act as a catalyst for low self-esteem and shame, which loom over children and caregivers (#12, #21) like an inescapable cloud. One of the appeals of informal caregivers is helping young patients out of psychological distress.
#21 He often asks, “Mom, why do I need surgery?” He also frequently asks me why he is different from everyone else. He feels like he is the only person in the world who gets sick all the time.
#04 He doesn't pay attention to learning anymore, he used to be very sweet and fond of learning, but he doesn't read books anymore. He gets angry easily, loses his temper, and says he wants to die (crying).
#12 She is just a little bit grumpier than before…she often asks if her scars are visible. Actually, her hair can cover her scars, but girls love to look pretty. She is worried about looking different. She had a ventriculoperitoneal drain, and that drain tube shows marks in her neck when she is sitting. When I heard this, I told her not to tell anyone too much about her illness, and to say that it is just a blood vessel, but who would believe that lie?
Requirements for campus aid
Twelve of the young patients were still pursuing their education, whereas nine of them were not. Among caregivers of patients who were not in school, most (7/9) expressed concerns about their children's healthcare, which was one of the factors that led to the children's suspension from school (#03, #05, #06, #08, #09, #12, #14, #15, #19, #20).
One of the frequent complications of craniopharyngioma surgery is visual impairment, which restricts children's participation in physical activities. Caregivers (#09, #15) of children still enrolled in education reported that the children did not participate in physical education. However, because obesity is another common postoperative complication, it was necessary for them to engage in exercise for weight control. They required specific advice from the physical education teacher at their school regarding the appropriate form and level of exercise.
#09 When he was discharged from the hospital, the doctor said he could take gym classes. The teacher of physical education believes that the child's physical condition is unsuitable for physical education, and that the school should be concerned about it in order to prevent accidental injuries. Since then, he hasn't taken PE classes anymore. We want our child to have suitable physical activity in school. After all, he tends to put on weight. The school hospital is not highly qualified. There's nothing we can do.
Healthcare services provided by school hospitals
For a long time, primary and secondary schools only had infirmaries, whose primary function is to provide very basic emergency care. There are three types of services that informal caregivers (#03, #06, #08, #14, #19, #20) expect school infirmaries to provide. Firstly, informal caregivers found it difficult for their children's 24-h urine output to be recorded at school, which was used as a reference during health reviews. According to their descriptions, they are willing to pay for health monitoring services provided by school infirmaries. The second kind of assistance they seek is medication management for school-age children. Due to intense academic pressure, children in China have to wait two or three weeks before they are permitted to take vacation in school. During school days, children were required to self-medicate, which is like a bomb attached to their body, with the potential to explode and injure themselves. Finally, physical education in schools should not be the responsibility of the physical education teachers alone. School hospitals should also provide guidance and monitoring of children's sports.
#06 Children only have one holiday following three weeks of schooling. During the three weeks of school, children are left to their own devices to take their medications, exercise, eat, and monitor their health. There are school doctors on-site, but they deal solely with emergencies and not special needs kids like her, which is why her father has consistently opposed allowing her to return to school.
Eliminating verbal violence in schools
A minority of caregivers (#12, #15) were of the opinion that it is inappropriate to make jokes about illnesses. Some unofficial caregivers (#09, #12, #15) expressed concern that children who experience verbal abuse at school may become depressed for a prolonged period of time. School teachers and students should show their concern for children after craniopharyngioma surgery rather than making inappropriate jokes on them.
#15 She suffered from low self-esteem as a result of some young boys in her class making inappropriate jokes and remarks about her scars and short hair. In actual fact, educators in schools need to be properly advised.
Special education needs for children
For a child with a severe visual impairment, one informal caregiver (#05) wanted the child to have the skill to earn a living when they became an adult. However, special education schools are mostly located in urban areas. Long distance is thus a worry for the child's family that lives in a rural area. The informal caregiver argued for the establishment of special schools in rural areas so that caregivers like her could conveniently care for kids following craniopharyngioma surgery.
#05 After the operation, she still has blurred vision. Her hobbies are tearing paper, folding paper, and drawing. When I asked her if she would like to go to a special school, she was very willing to go and was looking forward to the prospect. However, after I inquired, I discovered that such schools are only found in the larger cities. Because of where we live in the country and the fact that our child's body is unhealthy, we are concerned that she will be bullied if she moves anywhere else.
Demands for medical help
Four types of medical assistance are required. They are acquiring medical knowledge, having convenient and dependable access to medical care, need for technological advancement, and expectations of multidisciplinary collaboration (02, #04, #05, #06, #07, #08, #09, #10, #11, #17, #18).
Acquiring medical knowledge
Informal caregivers (#08, #10) who did not have friends or relatives working in the medical field and who did not possess medical knowledge themselves found it extremely difficult to take care of the children after surgery. More than half of the respondents in this study came from a county or township with a low education level. They struggled to quickly pick up the medical knowledge they required, despite receiving health education at the time of discharge. Informal caregivers (#07, #10, #18) were less likely to accurately describe the condition of the child to doctors if they lacked basic medical knowledge. The needs of caregivers included the improvement of current health education manuals and the creation of electronic versions of health management manuals.
#07 I don't think my child feels cold now. Her hands and feet are red with cold, but she never says she feels cold. If you ask her if she is cold, she says no. (Question: Did you take her temperature? Is she hypothermic?) Yes, we measured her, but she didn't have a fever. She didn't have a high temperature. (Questions: Well, do you know what hypothermia is?) I don't know. No one ever told me that. But I always thought the point of taking your temperature was to see if you had a fever.
#08 We had the fourth operation performed in ** Hospital in Beijing. I think a benefit in comparison with this hospital is that for the postoperative recovery period, they provided some guiding pictures that can be seen on mobile phones. It would be nice if they could be more detailed.
Convenient and dependable access to medical care
Many children who had craniopharyngioma surgery were not vaccinated against COVID-19due to their weakness. During the COVID-19 pandemic, the informal caregivers (#09, #18) had great concerns about hospital treatment and regional outbreaks across China. To the researchers' surprise, informal caregivers were unaware that hospitals were already offering online treatment and medication prescriptions in the early stages of the COVID-19 outbreak. During the regional lockdown, a few informal caregivers (#06, #07) also expressed a desire to receive treatment in primary hospitals if they could have faith in the quality of community-level healthcare.
#09 The prevention and control policy of the COVID-19 pandemic is strict again, and we are unwilling to travel far for our child to see a doctor. He is weak and we have not yet dared to vaccinate him. Could you help us communicate with the attending doctor to adjust the medicine? (QUESTION: Have you heard of online therapy?) No, we only know that we can make an appointment on the public WeChat account to see the results of the test, but no one ever mentioned online treatment.
#07 My child's illness is particularly complex, so I can't trust the medical services offered by county hospitals, but if the hospital had better medical conditions than it does right now, I would prefer to seek medical care locally.
Needs for technological development
Unhappy with the technology in place, one informal caregiver (#07) offered suggestions, such as whether children's illnesses might be less harmful if they were screened earlier. Another caregiver (#11) also wanted a device that can easily monitor a child's urine output at school, just as watches can monitor heart rate and breathing.
#07 If there is a community focused on this disease, I hope doctors focus on early screening research, so that families like ours can get the right advice and avoid wasting time. For about a year, she received ineffective treatment before an accurate diagnosis was made.
Expectations of multidisciplinary cooperation
After surgery, the requirement for caregivers (#10, #11, #17) to visit or alternate between several departments was a significant burden. Close coordination between various hospital departments is necessary to fully take into account complications, weight, height, and tumor recurrence management.
#10 His blood was taken at the endocrinology department of another hospital, and his hormone levels were checked. They claimed he had larger breasts, lower levels of testosterone and higher levels of estrogen. Soon after, we checked to see if the tumor had recurred, and the surgeon said we needed a gamma knife. In the Growth and Development department, the doctor said the child needed a growth hormone injection. We are afraid for the child's growth, development, and tumor recurrence. The main reason is that his illness is extremely complex and requires careful consideration.
The necessity of health review reminders
Although the medical staff instructed the patient's caregivers to give regular reviews at the time of discharge, a few caregivers (#05, #18) claimed that their busy schedules made it difficult for them to keep track of the precise time of reviews. These rare phenomena might be related to the lack of knowledge of caregivers. This inferred the necessity for medical personnel to regularly remind unpaid caregivers to assist kids with health reviews in order to prevent irreparable harm to kids' growth and development.
#18 The child hasn't been reviewed yet. I was the only one left in the family to take care of her. Her uncle mainly paid for the medical treatment. I'm old and not well-educated, so I can't remember a lot of things. Sometimes she has to worry about what she's supposed to do. You mean she needs a review? What needs to be checked?
The need for medication management
On the one hand, informal caregiver (#02, #04) feedback revealed that there have been instances where younger children have stopped taking medication on their own. When the child was away from the caregiver's supervision, especially during the school day, medication compliance was poor. Informal caregivers wanted medical staff to teach children to take their medication on time, because they believe physicians have complete authority over the children regarding medication and treatment. However, given that hormonal medications directly affected private matters such as spermatorrhea, informal caregivers (#04, #18) reported that they and their adolescent patients wanted to be involved in dosage formulation.
#04 Now that the testosterone level in his blood is normal, I asked the doctor who said that he could reduce his dosage by one pill, as he said that my kid only needs to take one pill in the morning or in the evening. However, my son (#04) responded that he doesn't want to decrease his dosage or stop taking oral testosterone because he went a long time without experiencing spermatorrhea and is now experiencing it.He thought himself that he ought to continue the dose.
#02 He stopped taking the medication on his own initiative, which led to his hospitalization. When we asked him why, he responded that he didn't want to take it, didn't think he should take it, and didn't know much about it.
The desire for financial aid
The economic pressure of informal caregivers was immense. According to the description of informal caregivers (#09, #13, #14, #17, #19, #20), there were three compelling appeals, as listed below. First, postoperative children accepted health reviews mainly in the outpatient department. The cumulative cost of outpatient visits was significant for their families. They hoped that promoting the inclusion of outpatient expenses into medical insurance reimbursement could be implemented as soon as possible. Second, children who have had craniopharyngioma surgery must take medication for the rest of their lives. Some families could not afford expensive medicine, such as growth hormone. They hoped that the medical reimbursement of chronic diseases would cover these illnesses. Third, the recurrence of craniopharyngioma in children still requires multiple treatments. Caregivers hoped that the preferential medical insurance policy could be adjusted for such postoperative children. As described above, nearly half of the informal caregivers were full-time caregivers, and most of them were parents of minor patients, so the effect on family income was clear. In addition, with the occurrence of COVID-19 outbreaks on occasion, household income, like that of the majority of typical families, has further decreased. As a result, some underprivileged informal caregivers submitted applications to the social charity platform, which was a clear indication of their need for financial assistance.
#14 She's undergone three surgeries so far. All costs, then, had to be borrowed for. Then I paid for the last surgery by crowdfunding on the ** platform. I can now say that I'm broke. Now, I'm working. I try my best to treat my child, just to be worthy of my heart.
#13 The cost of each treatment is around 5000 yuan, which is expensive for our family. Because my child needs to take medicine for life, I wanted to apply for chronic disease reimbursement. If this worked, it might be cheaper to get medicine at the hospital. However, following consultation, we have learned that this condition is not categorized as a chronic illness, so the expenses cannot be covered.