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