It can be tough to parent and care for a child with hemophilia. As much as parents and caregivers love these children, the ongoing care and treatment of this disease takes a toll. I’ve seen it in the families I work with and now there’s a new survey aiming to gauge just how difficult this journey is for families.
At the recent meeting of a global group supporting bleeding disorders – the International Society on Thrombosis and Haemostatis Congress – Novo Nordisk shared results from a study they conducted about the caregiver’s experience based on a “Hemophilia Associated Caregiver Burden” scale. This scale is designed to assess the emotional stress, financial burden, and other psychological issues associated with caring for a child with hemophilia.
The majority of caregivers, 74% of them, live daily with a feeling of dread that the child in their care could be injured, feeling especially fearful about this possibility when they are not with their child. Similarly, three-quarters of caregivers feel sad at times as a result of activity limitations they feel are necessary for a child with hemophilia. The financial burden of hemophilia can also weigh heavily on families; with 53% of caregivers noting that the financial costs associated with hemophilia has impacted family life.
Emotional stress, financial burdens, and impacts on the caregivers themselves were even more likely to be present if a child developed inhibitors, in addition to hemophilia.
Here at BioPlus Specialty Pharmacy, we understand these challenges of caring for a child with hemophilia and that’s part of the reason why we work so hard to make everything else about a family’s pharmacy experience as easy as possible. We want to ease the caregiver’s burden as much as we can, so families can spend less time worrying and more time living life.
Von Mackensen S, Wisniewski T, Urgo J, et al. Pilot test of the first hemophilia-specific burden scale for caregivers of children with hemophilia in the United States—the HEMOphilia associated CAregiver Burden scale (HEMOCAB™). Poster presented at: International Society on Thrombosis and Haemostasis (ISTH) 2015 Congress; June 20-25, 2015; Toronto, Canada.
Press release. New Novo Nordisk data demonstrate caregiver burden and prevalence of pain in people living with hemophilia. PRNewswire June 24, 2015.