The indirect impact of haemophilia on caregivers is an important aspect of care. Caring for a child with haemophilia can cause hardship for the caregiver, resulting from personal sacrifice, financial impact, emotional stress, and compromised health.

The caregivers may find themselves in the position of having to give up work to care for their child, at least in the years following diagnosis. In fact, 40% of caregivers who work part-time make this choice specifically because of their child’s haemophilia.

Haemophilia is, moreover, unpredictable; bleeding occurs without warning, requiring in-hospital evaluation and treatment. Flexibility for caregivers is, therefore, critical, as they may have to go to the hospital without advance notice, resulting in disruption of their daily routine, that of the affected children and their siblings.

You may also need to go to regular hospital appointments, which can be time-consuming and financially burdensome. Traveling long distances or long periods of time to specialised centers has a proven impact on caregivers.

Another well-recognised additional stress load is that resulting from the development of alloantibodies (inhibitors) against Factor VIII or IX concentrates. In fact, caregivers of children with inhibitors show higher levels of anxiety and stress.



  • von Mackensen S, Myrin Westesson L, Kavakli K, et al. The impact of psychosocial determinants on caregivers’ burden of children with haemophilia (results of the BBC study). Haemophilia. 2019;00:1–9. https://doi. org/10.1111/hae.13684
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Learn more about the meaning of the words you read on this page and learn about the entire glossary on hemophilia.

A group of proteins with enzymatic functions involved in the clotting process.

All clotting factors are assigned a Roman numeral, although each one also has a proper name.

Some are produced by the liver, whereas others are synthesised by the endothelial cells that make up the inner lining of the blood vessels.

A protein belonging to the clotting factor category, a group of enzymes involved in the blood-clotting process.

It is encoded by a gene on the long arm of the X chromosome.

Factor VIII is also known as anti-haemophilic factor (AHF).

Product containing a high concentration of freeze-dried factor VIII, used for replacement therapy in the treatment of haemophilia A.

A ereditary genetic illness, characterised by a deficiency of clotting factor VIII, that exposes the individual to a greater risk of both internal and external bleeds.

Haemophilia A is more common in males, whereas females tend to be healthy carriers of the condition.

The typical symptoms of the condition include haemarthroses (joint bleeds) and haematomas (muscle bleeds).

Antibodies produced by the immune system of patients with haemophilia, following an infusion of replacement factor VIII.

The inhibitors recognise the infused factor VIII and bind with it in a specific manner, thereby neutralising its effect.

Condition that occurs when factor VIII activity is between 1% and 5%.

Condition that occurs when factor VIII activity is between 1% and 5%.

Therapy for the treatment of haemophilia A, consisting in the intravenous administration of the lacking factor VIII, thereby restoring a correct blood-clotting process and preventing bleeds.

Replacement therapy can be administered in accordance with two treatment regimens: as on-demand or prophylactic therapy.

Condition that occurs when factor VIII activity is <1%.