Care givers and support
During the disease process of children with a brainstem glioma, many different care providers are usually involved, which can cause confusion.
It is important to discuss with your different therapists about how to reach them easily and what to you are able to specifically ask from them- what services do they provide?
Especially in the latter phase this is essential. Conversations with all concerned will help to develop a clear plan of care. This usually involves communication with:
- Oncology nurse
- General practitioner
- Home carers
- Social support worker
Ask the oncologist / oncology nurse how this can be organised.
Helpers in the hospital:
The role of different therapists are not the same in every hospital. Here we will try to describe who these different care providers are and what role they normally provide.
They are most often the supervisor of the entire disease process, but sometimes only seen during chemotherapy and in the final phase.
The oncologist can be responsible for treatment & medication so that it is clear to your home care and / or GP what medicines your child is taking. There might be a step-by-step care plan included.
This can help to provide the other care givers information on current treatment/goals and can also refer you to other healthcare providers, for example Social work, child psychologist or care workers outside the hospital.
Sometimes is the supervisor of the entire disease process, sometimes only at diagnosis.
Doctor responsible for irradiation.
Necessary if your child is anaesthetized for radiation because he / she is anxious or too young to be able to stand still.
Usually acts as a point of contact for all questions and is the main contact between you and the other therapists.
Many parents have good experiences with therapy from a child psychologist. Depending on the age of your child and his / her awareness of the situation, you can choose to talk to the psychologist only as parents and get advice from him / her how to guide your child and any siblings.
Older children can also benefit from talking to a psychologist.
Do not wait too long to request this help! After death, continuing psychological care for parents, brothers and sisters is recommended.
Choose your own psychologist. This process is so important, there should be a good rapport with your psychologist and / or Social worker. As is true for everything in this process, you have to feel comfortable to follow their advice. And if you really do not want any help, then that’s a choice you can make!
They are up-to-date with the latest laws and regulations. They manage concerns around PGB (Personalized Budget) but you can also contact them if you have any questions or need mediation with your employer. They are also aware of the possibilities for taxi / hospital transport, domestic assistance with monetary advice and can help you when requesting specific forms from the health insurer.
Care outside the hospital
It’s important to build a good relationship with the GP in order to care properly for your child at home.
Discuss any treatment limitations with your GP so that in an emergency the GP and ambulance are aware that, for example, ‘no complete resuscitation’ instructions are adhered to (no heart massage to be performed)
Ergotherapist (via hospital or rehabilitation center):
Should your child need aids, he / she can arrange this.
Rehabilitation physician or rehabilitation center:
Maybe your child likes to swim and can do this in a rehabilitation center.
Can come to visit at home, he / she can provide therapy. For example, to help with gentle stretch exercises to help spastic posture that can develop from prolonged lying.
For children it is important to go to school for as long as possible or at least to be involved with their class. Communicate with the teacher and make sure they are aware of your child’s needs. This may involve customized chairs and table, adapted learning materials, additional classroom assistance (possibly as a parent), video system for contact with the classroom from home.
This website has advice about aids for in the classroom: