Your child has his/her own way of dealing with his/her illness. The age and how your child learns play an important role in this. It is important to take your child seriously and help him grow up with his/her possibilities and limitations. Your child may also have questions about the future. That's very normal. It's good to talk about that with each other.

Talk to your child

You may have questions about if, when, and how to tell your child that things can't get any better. There is no ready answer to this. There are points for attention, even if you want to prepare for questions or reactions from your child. Keep it simple. Explain in your own words what it means. You can start with something your child already knows, such as, "You know you had to go to the doctor the other day?" followed by what's going on. Stay open and honest. Children will notice if you don't tell them everything.

Brother(s) and/or sister(s)

Your child's illness also affects the other children in your family. In practice, it is sometimes quite a job to let your family work as normally as possible. It can also be difficult for your other children, the brother(s)/sister(s), to be able to (continue to) do their own things. It is good to pay attention to this and to talk about it with each other.

Dealing with emotions

For you as a parent or caregiver, it may be difficult to show your emotions, out of protection for your child(ren). But your child often notices that something is wrong. It is precisely sharing your feelings that gives your child the opportunity to express and share his/her own emotions as well. It's important for children to know that their feelings - and yours - are allowed to be there.

Daycare / school / BSO / sports etc.

If your child goes to school or childcare, it is important that you have good contact with this organization.

Drawing: Alexander 8 years old
Source: Tanja van Roosmalen, grief and loss therapist, remedial educationalist

If you have received the message that your child is no longer getting better, you and/or your child may feel sad, anxious and gloomy about it. These are completely normal feelings after getting to the news.

Living in uncertainty

It may be that shortly after the diagnosis it is not clear exactly how your child's illness will develop. Your family's life is changing enormously and it is difficult to predict what the future will bring. Good contact with all involved (care) professionals is important. Contact with a patient association or fellow sufferers can provide guidance in this regard.

Anxiety and depression

Depression and anxiety in a child are common consequences of getting bad news and (very major) stressors for the family. You can read more about this in the guideline for pediatric palliative care in the first paragraph of the chapter 'Recognizing and Treating Symptoms' Anxiety and Depression (pages 50-62).

Emotions

In addition to fear and sadness, as a parent you can also experience feelings of powerlessness, frustration and anger. But feelings of guilt and shame are also common. Everything is possible and nothing is strange. Read more about ' Parents of a seriously ill child .'

Support

Being a parent of a seriously ill child demands a lot from you and sometimes there is almost no time or space to reflect on the consequences. Every parent has their own way of dealing with the situation. In every region there are psychosocial care providers (filtering on psychosocial care in care organizations) who can think along with you, for example about your concerns, about the best way to talk to your child(ren) or how to ensure that you, as a parent, are fully keeps holding.

The podcast series 'Living Loss' , created by Edith Raap and Irene Sies, is about the recurring feelings of sadness and grief when you are the parent of a child with a disability or chronic condition. They talk to parents and care providers and try to bridge the gap between them. How do parents experience living loss and how can counselors support parents.

There are all kinds of people and organizations in your area that play a role in the life of your family. Friends, neighbours, colleagues, classmates, clubmates. But also the general practitioner, day care, after-school care, sports clubs. They may even see you more often than immediate family. Below we share some tips to involve them in your family, in a way that suits you.

Care for your family and partner relationship

The disease process affects both you as a parent, as a person, and in your shared parenting. But it also affects your relationship as partners. Paying attention to this and continuing to talk to each other is important.

Social environment

Your immediate environment is of great influence. Asking your social contacts for help can offer support. Want to know more about this? Read more here .

Professional assistance

You can reach out to professional help for support. At the municipality and agencies you will find more information about aids / adjustments and laws and regulations at municipalities and agencies.

You can use a children's home care organization , a nursing home for children, informal care , respite care or a children's hospice to temporarily take over the medical care of your child.

For all cultural questions and questions about life, spiritual aspects, church / faith you can go here .

Healthcare organizations

On Care in your neighborhood you will find all information and contact details of care organizations.

Signpost

As a parent of a child who needs intensive and/or pediatric palliative care, you suddenly find yourself in the world of care, institutions and laws. Often this world seems to be a kind of jungle that is difficult to get through. This Guide helps to get an overview when it comes to aids, school & care, treatment choices and work & care, for example. For each subject you will find tips, information about money and rules and help desks.