社会福祉法人はばたき福祉事業団 オフィシャルサイト

Independence and future challenges for children of a cancer patients or a survivor.

Ms.Tomoko Omata, a lecturer of Department of Social Welfare, Faculty of Human Studies at Musashino university

Introduction

Thirty years ago, childhood cancer was challenging, incurable, and refractory disease. Needless to say, the situation still keeps same as before. Childhood cancers are leading cause of death by disease among children for a bunch of years. Thanks to dramatic improvement of medical care, for both children and adults, cancer is curable now.

When I suffered from leukemia at the age of 13 just thirty years ago, it was notorious as an incurable disease. My patents could have a surge of panic at the moment.
As for me, I happened to read Germany medical book and assumed that I would be happy if I could survive by 20 years old without any reason. I somehow survive thanks to a series of fortunes such as treatment, effectiveness of drugs, and dedicated efforts by my primary physician.

It has been twenty years since I worked for childhood cancer. I have an opportunity to meet many health care providers, educator, people related to childhood cancer, families of their children with cancer, and peers having childhood cancer. I also conducted a brief survey that clarified, to some extent, the current state of people with the lived experience of childhood cancer.

In this report, I suffered from leukemia when it was once considered an incurable disease. While outlining my 20 years of works and change from incurable to curable. I would like to discuss what support cancer children and survivors want and what they are getting now.

1 What happens after a childhood cancer diagnosis?

Once a person experiences fatal disease, he/she feels like losing his/her past life and turning 180 degrees around.
This situation applies equally to children. Moreover, it is natural that the fact will cause serious damage to parents more than child.

As in my experience, I didn’t recognize that I suffered from childhood cancer. I went to hospital in my town on several occasions. The pediatrician who came from Tokyo on the temporally payroll and diagnosed my disease by accident. It is known to address the question of length and determinants of the time interval from the onset of symptoms to the diagnosis of child hood cancers
Because it occurs from internal body, namely, cell itself, other examination suggests an alternate diagnosis so that it is difficult to reach an accurate diagnosis.

Examination and treatment was conducted in only specialized hospital. In most of the cases, the therapeutic regimen was long-term and hard. “Maruku” was to aspirate the bone marrow fluids by inserting biopsy needle directly into the bone. It was nothing like fear and suffering for children. Because of drip infusion and infection prevention, they experienced physical limitations in daily living activities. A top priority ensures treatment. As a result, not only their playing like working but learning opportunity was lost.

Moreover, there have been long standing problem with respect to notification of disease to children twenty years ago. Adults around children seriously worry about when and how they tell it.

Some peers accidentally came to know their disease later because notification was not common sense thirty years ago. Solving complex involved in advantages and disadvantages of notification, timing, condition, and parents thought is not easy matter. In the circumstances of childhood cancer, there exist two types: The former is a child who is given a notification of cancer. The latter is the parents or caregivers who think about their children better than anyone and decide whether to notify them.
Those make the inevitable situations complicated even more.

Side effect of cancer treatment varies from person to person. When children suffer from solid tumor, a part of body may to be removed through incision, which eventually results in scar or damage. Besides, side effect of serious treatment could induce another illness as well as problems under treatment, followed by developing as a late complication. I also experienced breast cancer five years ago.

Treatment for rescuing life may impact on mental as well as physical aspects

2) Life after discharge from a hospital
Fortunately, even after leaving hospital, it is not easy to return to school. There are many problems such as weakness of physical strength, early leaving or tardiness due to hospital visit, absence from school, and lack of understanding from school. Scar from surgery and appearance change impose a heavy burden on adolescent child even worse. It almost goes without saying that attending school is in itself inherently stressful. Furthermore, long absence makes a negative impact on scholastic ability and admission for school.

 

 

Friends or acquaintances seek for explanation of his/her absence or injury. If he/she can’t make a good case for it, that itself may at times lead to bullying. I have heard of rumors about “leukemia transmission” even advances in science.

Looking back on my experiences, I suffered from repeatedly giving same explanation to my friends and missing school for a whole day due to decline in physical weakness and hospital visit.

After reentering school, next obstacles are admission for advanced school. Regarding admission to a school,
It is not always to go to school due to delay study, physical strength, and understanding of school. Consequently, their selections lead to a narrow window of opportunity. It is necessary to explain disease condition and treatment to school and relevant people at the time of admission examination or after entering school.
Job search is harder than advancing school. First, permanent damage and failure cause to narrow a job category. My peer suffers various late complications due to child brain tumor. Physical condition varies from day to day or even within a day. That is why he/she has a difficulty in getting his/her desire job. If work absence exceeds one year, he/she is distressed whether to notify their disease at job interview because of blank in their resume. When starting working, he/she needs to make efforts to ask for understanding of workplace about taking medicine, treatment, and hospital visit. When the boss or workplace is changed, he/she will have to explain from the beginning. Discharge means they have to be out of place which is defended by hospital in certain aspects. Thereafter, he/she has to overcome various obstacles including re-entering school.
It is always necessary to judge when and how to tell others about your diseases to a greater or lesser extent in particular. With regards to treatment, it is required for him/her to explain of childhood cancer treatment to the physician when he/she has a regular follow-up or a stable dose as well as hospital visit with clinical examination and treatment because of another illness.
If he/she is suspected of being recurrence or developing as a late complication, pediatrician is incapable of responding to adult patient so that he/she will find hospital.
When he/she reaches adulthood and gets older, he/she lives in another place due to life-changes such as life, employment, job relocation, and moving. Under those circumstances, he/she needs to choose another hospital.

3) Family issue
Someone in family has an illness, which has an impact on other family member life to some extent. If their children have a fatal disease related to childhood cancer, it may have a negative impact beyond our imagination. Parents are concerned about the life of their children, their treatment and hospital as well as their future life. They tend to ask the reason why their children suffer childhood cancer or seek for another reason such as family history, heredity and parenting.
In addition to mental burden, there are many heavy stressful things. As an example, financial burden related to medical expense and hospital visit payment, disturbance of their life cycle by hospital visit, explanation of disease condition to relevant association with their children and circumstances. As shown above, these factors critically lead to social stress on their parents.
Not only parents but also siblings are forced to compromise their life cycle. Parent often direct concern to the disease child. Siblings suffer from a sense of guilt because of assuming responsibility for causing his/her disease. They don’t know what his/her condition is.
Due to the sanitary reason, siblings can’t visit patient room and have to wait outside so they often have a sense of loneliness.
In my case, my mother stayed at grandmother’s home near the hospital so my sister and father were compeled to stay at our home for more than six months. Looking back on these days, my parents and sister appeared to have a serious burden I guess.

 

2 Current status of support for childhood cancer patients and survivors.
Current status of support on clinical treatment.
As a cure rate of childhood cancer increases from 70% to 80%, Researchers and relevant parties are currently conducting work study considering mental stress related to treatment and reduced risk of developing a late complication.
As I stated examination of Maruku before, For little children, administration of local anesthesia not but anesthesia should be chosen. As for treatment, it is up to adolescent child is to decide whether it is given local anesthesia or anesthesia in certain hospital.
In the case of specialized hospital, there are child life specialists that put themselves in the position of children, clinical psychotherapist dealing with mental problem, and nursery teachers helping to play with hospitalized children.

As far as learning opportunity is concerned, there are hospital schools in specialized hospital and university hospital. However, procedure is required to obtain a learning opportunity in hospital school. If hospital is organized by another local government, it is necessary to change to special room in hospital school.
Some local governments provide disease children in hospital with learning opportunity from the hospitalized day. Others can’t allow them to transfer to special room in hospital after three months later. It depends on the case.
With respect to financial assistance, Japanese government provides children with specific chronic disease to cover or reduce major medical expense health with national health insurance.
2) Current status of support after staying in the hospital.
After discharge from hospital, it is usual for each individual to consult office in local government or support center for children and family.
Nursery teachers and homeroom teachers are responsible for consulting an explanation of disease and learning problem with disease children and their parents.

After reentering school, one hospital provide disease children and their parents with an opportunity to discuss people related to hospital school (homeroom teacher and nurse coordinator) and healthcare professionals (primary care physician, nurse, social workers, etc)

When going to high school or university, or getting a job, they have to do it themselves due to their specific reason. There are patients and their family association engaging information exchanges and consultation in each area. For survivors with childhood cancer that have difficulty in getting a job, one organization start supporting a service including working experience.

As for adult consultation, On the basis of medical record, there are some hospitals which provide medical record to other hospitals and set up long-term follow-up outpatient department to visit other diagnosis and treatment department.

3) Current status for support of their family.
Healthcare professionals continue to support for disease children depending on the situation not only during hospital stay but even after leaving hospital. When they are hospitalized far away, there are some patients　organizations offering a cheap accommodation in order to support for their life.

Regarding siblings of children with a disease, some volunteer groups, in spite of their small numbers, provide a service to play together and conduct program to recover mental strains by playing while their parents visit hospital.

In response to various events after developing childhood cancer, we prepare a variety of support and coping.
Of course, there are many support services beyond my understanding.

In order to challenge the existing problems with the use of these supports, there are the gap in support system depending on healthcare facility and area.

Support for disease children and their families, is variously different depending on location where they live and hospital where they receive treatment. Due to difficulty in access to information, they don’t receive a proper help they need.

3 Independence of patients with childhood cancer and survivors.
1) About independence
When considering the usage of term “independence”, it could vary from situation to situation. According to the dictionary of Daijirin, definition of independence is to accomplish things based on their efforts without their other’s help and control. When we consider what the independence is for patients with childhood cancer and survivors, necessary relationship and support may vary from person to person.

I would like to define the independence of patients with childhood cancer and survivors as self-fulfillment for themselves. In addition, it is necessary to share common sense for not only patients themselves but also people involve in childhood cancer after discussing what can and should be for their independence.

2) Character of support for children with cancer and survivors of childhood

Purpose of support is as follows: Children with cancer and survivors of childhood cancer can live comfortably, having disease experiences, as well as permanent damages and complications.

Character of support for children with cancer and survivors of childhood can be mainly categorized into four groups. Firstly, it is dependent on specific individuality, referring to recurring events after child development of childhood cancer. However, recurring events are dependent on specific individuality influenced by their background including disease, severity, treatment, personality rearing environment, family status, living location and education, so support system should be different, considering their complicated situations. Thus, flexible support is required on the basis of their detailed background.

Secondary, despite improved cure rate of childhood cancer, no one can predict when problem will happen, or how it will be from hospitalization to hospital discharge and even after growing up for a long time. When it happens, regardless of where they live, it is necessary to set up a possible system to provide smooth consultation and support for them. Thirdly, there is little available social support. To make matters worse, it is extremely low chance when a person becomes 20 years old or over.
Individuals with childhood cancer, even after cure, are required to visit the hospital due to potential risk of reoccurrence and late complication.
They are liable to pay for 30% of medical cost when they are 20 or over. Although other benefits are applicable depending on other cases, it isn’t always fulfilled if the disease caused by the childhood cancer.

Last of all, it is not sufficient for survivors with childhood cancer to be independent only when they face the emerging difficulties and are given a support.
As they grow up an adult from the age of occurrence of childhood cancer, people around them are actively responsible for their life. For professionals related to childhood cancer, the important keyword is to conduct “total care” with patients, their families and all relevant healthcare providers. Professional healthcare providers such as physicians, nurse, and physiotherapist, Speech-Language-Hearing Therapist, nursery teacher, social worker, psychologist, CLS, nursing teacher as well as people related to education that involved in total care. After discharge from hospital, it is important for disease children to receive a continuous total care in the area that they are living.
3) Necessary support system for independence
Based on character of support for children with cancer and survivors of childhood, we suggest these five elements are necessary for support systems as follows.

1) Support for strength and importance of individuality
2) Viewpoint of total care, achievement of social skills, participation and promotion for individual awareness.
3) Establishment of long-term follow-up system from childhood cancer onset to adult
4) Elimination of the gap of support system
5) Fulfillment of available social resources
It is thought that supporters play an important role in conducting 1)-4) of the above. When doing so, it is important to focus on a long time and continued supporter without changing with each cycle. In order to coordinate concrete psychosocial support, necessary social resources and healthcare providers,
Social worker appears to be appropriate for representing interests involved in patients and their families.　
Social worker is the occupation called “Shakai Fukushishi”, which is national license approved by Japanese government. They engage in social welfare work. On the basis of fee-for-service reimbursement system in medical system, it is difficult to implement continuous work in medical front because they are not approved as an evaluation of work performance and allocation standard. As stated before, in spite of necessity, nurse teacher and CLS are not appropriately allocated in pediatric care. It is urgent to provide a necessary resource, having an authority and duty for them in order to conduct support system. However, things do not work out when setting up health care professionals there. Each specialist is required to have expertise about childhood cancer and skills with support team, sustain qualification and conduct training for improvement.

Final words
Childhood cancer, as its name suggests by, most often occurs in children. Children are growing and developing rapidly. 70-80% of childhood cancers are currently curable. Rescuing disease children was the biggest challenge 30 years ago so the idea of “independence” didn’t exist at that time. As time goes by, support system for change is required. While keeping up growing and developing children as an escort runner, support from their relevant people is required in order to promote independence from society.
Among my peers, they can’t work the job they want because of physical and social reasons. They want to be independent from parents who guard their children and, hope to live by themselves. It is an immediate issue to create the framework for them since now is the time to cure childhood cancer.
Furthermore, structuring support system for childhood cancer eventually leads to fulfilling the similar system for people experienced a chronic disease during children or disabled persons.