We have identified three themes to describe the parents' distresses and appeals regarding the cognitive impairments of children with cancer. Each theme has its own subthemes, as outlined in Table 3.
Table 3 Themes and Subthemes of parents' experiences and needs with cognitive impairment in children with cancer
Theme
|
Subtheme
|
1.Parents face multiple distressing symptoms of cognitive in children
|
1a:Speech communication barriers
1b:Impaired Executive Function
1c:Attention Deficit
1d:Intellectual Disability
|
2.Persistent Negative Emotions
|
2a:Anxiety and Worry
2b:Complaints and Resentment
2c: Negative Avoidance
2d:Positive Experiences After Psychological Adjustment
|
3: Multiple needs
|
3a:Needs for Disease Information
3b:Need for Professional Management
3c:urgent need for more external support
|
Theme 1: Parents face multiple distressing symptoms of cognitive in children
1a:Speech communication barriers
In this study, a total of 12 parents reported that their children's language expression abilities were poor compared to children of the same age group. Speech disorders such as unclear pronunciation, difficulty in forming words, slow speech, and naming difficulties affected the children's communication in daily life, causing inconvenience for both the children and the parents.
Sometimes she speaks in a grumbling manner, sometimes she hums...When she gets anxious, she can suddenly utter a few words, but people who don't spend every day with her can barely understand her.(parent 3)
I feel that his communication skills are far behind those of children his age. He seems to have trouble organizing his language...Every time I communicate with him, it's quite challenging. When he gets anxious, I get anxious too.(parent 4)
1b:Impaired Executive Function
Executive function is a part of higher cognitive functions, including working memory, inhibitory control, reasoning, and problem-solving. Children with impaired executive function often exhibit behaviors lacking discipline and have difficulties planning and strategizing when doing tasks. Eleven parents in the study reported that their children had symptoms of impaired executive function in daily life.
Every time I ask him to do something, I have to call him many times before he responds. Sometimes he pretends not to hear me...I feel like he wasn't like this before he got sick. He used to be a very obedient child.(parent 5)
You can't ask him to complete more complex tasks, for example, he can't follow the steps to complete homework.(parent 8)
1c:Attention Deficit
In the study, eight parents reported noticing problems with concentration in their children compared to their peers.
He only has a three-minute attention span for everything... When he was in school, the teacher mentioned that he was often distracted during most of the class.(parent 1)
I feel that his ability to focus is shorter than other children's... He has difficulty concentrating well on any particular task.(parent 5)
1d:Intellectual Disability
Five parents reported in interviews that their child had an intellectual disability after being diagnosed with cancer.
I took my child to the pediatric department for an intelligence test after the (cancer) diagnosis, and the doctor told us that the child has a slight intellectual disability.(parent 3)
An intelligence test was conducted during school enrollment, and the results showed that the child's intellectual level is lower than that of other children."(parent 11)
Theme 2: Persistent Negative Emotions
2a:Anxiety and Worry
For preschool children, the impact of cognitive dysfunction primarily manifests in their language communication due to their tender years and limited independent living skills. Consequently, parents primarily fret over the daily welfare of these young children. However, as they grow older, and given the long-term consequences of cognitive dysfunction, parents' anxieties shift towards the future, specifically wondering whether the condition will hinder the child's academic pursuits, employment opportunities, and their capacity to live independently in adulthood.
I am quite worried about how this will affect my child's future studies and life. If the symptoms become more severe, will it affect their future development?(parent 1)
This may cause my child to have poor academic performance in the future. What will they do when looking for a job? But I hope it won't be that serious.(parent 7)
If we are not around in the future, how will they take care of themselves? My biggest concern is whether they will be able to live independently.(parent 15)
2b:Complaints and Resentment
The treatment of cancer has already taken a toll on the parents, draining them both physically and mentally. The emergence of cognitive dysfunction symptoms has further added to their burden, leading some parents to feel resentful and full of complaints.
I thought that once the cancer was treated, it would be fine. Now there is cognitive dysfunction. It's just unfair.(parent 4)
Why am I so unlucky? Everything bad seems to happen to me. I really feel so frustrated.(parent 16)
2c:Negative avoidance
When asked about managing cognitive impairments in children, some parents adopt a passive and avoidant mindset due to lack of confidence in symptom management.
My child is still so young and has suffered so much from the treatment. I really don't want to add any more burden to his treatment.(parent 3)
As long as my child's leukemia can be cured, it doesn't matter if he is a little less intelligent in the future.(parent 9)
Our current focus is still on curing the child's illness. As for the child's cognitive impairment, we will just take it one step at a time.(parent 11)
2d:Positive Experiences After Psychological Adjustment
In the course of caregiving, parents undergo positive growth experiences, evolving not only as nurturers but also as individuals. They unselfishly commit to providing comprehensive care for the child, diligently acquiring pertinent caregiving knowledge to ensure optimal care. Concurrently, they engage in self-reflection, delve into their innermost emotions, and embrace the challenges of self-growth, thereby bolstering their resilience in the face of adversity. This process aligns with the contemporary post-traumatic growth theory in positive psychology.
There's no other way...We have also learned about remedial measures for cognitive dysfunction online, and we do some cognitive rehabilitation training for our child at home.(parent 8)
For the sake of our child's future, we will work hard to help them recover.(parent 12)
Theme 3: Multiple needs
3a:Needs for Disease Information
During interviews, several parents revealed that they resorted to search engines, WeChat official accounts, and various other platforms to gather knowledge on cognitive decline and training methods for cancer-affected children. Nevertheless, they conceded that the information and advice dispensed through these mediums often lacked professionalism and credibility, oftentimes inundated with irrelevant or even misleading details. Many parents attributed the emergence of cognitive impairment symptoms solely to the child's non-attendance at school, failing to associate it with cancer. In the present study, 13 parents admitted to being unaware of cancer-induced cognitive impairment in children, while 5 parents admitted to encountering occasional online mentions of the condition but disregarding them. Collectively, all parents emphasized the inadequate availability of health-related information, emphasizing their urgent need for professional medical guidance to satisfy their knowledge requirements.
Is our child's condition serious? Will it have an impact on the future? How can I remedy it?(parent 8)
What is cognitive impairment?Our child just reacts a little slower. How does that mean cognitive impairment? Please explain this issue to me. Is it serious?(parent 11)
I know that chemotherapy may affect my child's cognitive function,but I don't know what the symptoms are,nor do I know how to detect and deal with them.(parent 5)
The majority of parents held the belief that the resolution of cognitive impairment would follow the cure of cancer. They considered it commonplace for children undergoing cancer treatment to exhibit symptoms such as inattention and compromised executive function. These parents attributed the emergence of these symptoms to the natural course of the disease, assuming that the prolonged hospitalization was the sole culprit behind their child's cognitive decline. They optimistically anticipated that their child's cognitive function would recover upon resuming school, without realizing the urgency of seeking medical attention promptly.
I feel that these are all caused by chemotherapy, as chemotherapy drugs will inevitably have side effects. But I think these will all improve after chemotherapy is completed.(parent 2)
These are all normal, because the child has been staying in the hospital. Once the illness improves and they return to school, they will be fine.(parent 6)
3b:Need for Professional Management
The majority of the participants in this study resided in a home care environment, where parents were burdened with a myriad of household chores and caregiving responsibilities alongside managing their child's cancer treatment. Given the widespread lack of knowledge regarding cognitive dysfunction treatment methods among parents, they actively sought assistance from social services, such as cognitive rehabilitation institutions. However, these institutions often lacked sufficient professionalism in disease care, systematic training, and extensive practical experience. Consequently, they were limited to training children in basic skills like language communication, numerical calculation, and other abilities, with most outcomes being less than satisfactory. Many parents expressed their desire for professional, targeted, and personalized institutions or individuals who could offer guidance, facilitating cognitive function training for their children while also educating them on cognitive training methods.
I just feel that if the staff are going to do cognitive training, they should have some basic knowledge. I don't even know if they can train my child in this ability.(parent 2)
We definitely need to choose a formal institution. I'm mainly worried that it won't be as good as what we can do at home and will delay our child's treatment progress.(parent 7)
I really need professionals to guide us, such as telling us about cutting-edge research results and how to achieve the best results.(parent 17)
3c:Need for multi-faceted support
Children are at a critical stage of rapid development of the nervous system and formation of cognitive function, and are more likely to have cognitive impairment after diagnosis of cancer24, 25. The immense psychological and economic pressure experienced by parents prompts them to eagerly seek support from schools, society, and other entities. However, a significant proportion of individuals lack a precise and comprehensive understanding of these children, erroneously believing that cancer is incurable and that affected children will be impaired in areas such as intelligence and language communication, leading them to be perceived as "mentally handicapped children." Additionally, some schools hesitate to enroll children who require long-term PICC, CVC, and intermittent leave, viewing them as abnormal and even refusing admission. These factors, often unnoticed, exacerbate the psychological pressure and caregiving burden borne by parents.
Some people think that my child is not very smart, he does not have many friends of the same age in life, the teacher at school also suggested that he repeat the grade, I really do not know what to do.(parent 12)
The issue of schooling is really troublesome. Some schools refuse to accept us outright for fear of taking responsibility. I hope that the government can pay more attention to these children and open up green channels for them.(parent 18)