Child and haemophilia

Diagnosis of haemophilia often causes parents to feel anxious, fearful of the child's health or even guilt. Many times, these feelings lead them to overprotect the child and limit their activities. This condition often causes the child to feel low self-esteem and deprives them of important daily joys and activities with children of their age. This approach does not promote the child's smooth psychosocial development, nor does it prevent bleedings.

So how should parents manage the diagnosis of haemophilia?

Parents and generally, the family environment of a child with haemophilia, must remember that children are always children. They need to play, run and participate in team activities with their peers like any other child. Parents need to understand that haemophilia is a part of their child's life and not the center of their world. They should therefore encourage them to play and have fun, with extra attention and some restrictions, where necessary. In this way, the child will grow up with confidence, sociability and autonomy.

It is important for the child to know from a young age what haemophilia is and how is treated it, but also to be actively involved in the prevention and treatment of bleeding episodes. Due to the disorder itself, the measures they need to take to avoid injury and the treatment’s delivery process, children with haemophilia may feel 'different' from their siblings or peers. After an injury, the pain and the possible restriction of movements can intensify this feeling.

Try to understand their feelings, explain the situation to them and give them an incentive to accept the treatment process: "The medicine helps to make your blood stronger. This way the pain will go away, and you will be able to play again with your friends, like the other kids!"

Maintain a safe home environment for infants and young children and try to foresee as many ways as possible to avoid injuries (falling from a swing, furniture corner injuries and sharp objects handling). Put non-slip strips in the bathroom and let the child play and run freely on soft floors or grass and not on hard or uneven ground.

However, keep in mind that these measures may reduce the risk of bleeding but do not eliminate it. All children with haemophilia develop bleeding at some point. Your child will learn to live with this condition, as you.

In case of injury, do not scold the child. Explain to them in a calm way the reason for the injury (e.g. they were injured on the knee because they rode a bike without wearing a kneepad) and remind them of what they must do to avoid a similar situation in the future (always wear a helmet and knee pad when riding a bike).

Τα άτομα με αιμορροφιλία εκδηλώνουν αιμορραγικά επεισόδια αυξημένης συχνότητας και διάρκειας συγκριτικά με τον υπόλοιπο πληθυσμό.

At school:

A child with haemophilia will go to school. Will not be excluded from team activities and class schedules, but they should avoid fitness exercises or sports that involve an increased risk of injury, such as football or basketball.

You should inform school staff and especially teachers and gym teachers about haemophilia and First Aids they have to offer the child in the event of an injury or internal bleeding.

The relationship with siblings:

A child's siblings with haemophilia may feel neglected or may feel guilty if their brother/sister with haemophilia develops a bleeding episode during a joint game. It is therefore important they know as much as possible about haemophilia and be given the opportunity to participate, on their own way, in its management.

Conversely, do not neglect the child who does not have haemophilia. Explain to them that the extra attention you give to their haemophiliac sibling does not mean that you love them more, but that they need more of your own care to avoid injury. In case of injury of the child with haemophilia, explain to their siblings that for some days you will have to spend a little more time with their brother/sister to take care of them until they feel better. J ust as you would if they had been injured.

Visiting a friend's house:

If the child visits a friend's home to play, let the parents know about haemophilia in a calm and positive way, avoiding the "dramatic descriptions" of bleeding episodes that can terrify them.

Inform them about the signs of internal bleeding and how to offer First Aids to your child in case of bleeding. Don't forget to give them your contact details so they can call you immediately in the event of an injury.

References:

1.Growing up with hemophilia Four Articles on Childhood by Dr. Peter Jones, Newcastle, Haemophilia Centre,
Newcastle upon Tyne, England 1994. Available at: http://www1.wfh.org/publications/files/pdf-1310.pdf
2.WFH. Guidelines for the management of haemophilia. 2012.
Available at: http://www1.wfh.org/publications/files/pdf-1472.pdf [Accessed 24 October 2019].
3.Lorig, K., et al. Patient Education: A Practical Approach. 3rd edition. Sage Publications, 2001.

Under the aegis of: Initiated by:
This information is intended to inform and update the public and may in no way serve as a substitute to consultation with a doctor or other professional health service.
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