African mothers: Raising boys with haemophilia in the UK

Open access

Abstract

Disparities in haemophilia care between developed and developing countries persist despite the best efforts of the World Federation of Hemophilia (WFH). With limited availability of and access to coagulation factor concentrates in developing countries, people with haemophilia (PWH) are frequently left prone to lifethreatening bleeds. The experiences that sub- Saharan African mothers face raising a child with haemophilia are challenging. This study explores the difficulties faced by those who have moved to the United Kingdom, as well as their experiences in their countries of origin. Interviews were carried out with four mothers of children diagnosed with severe haemophilia A from Cameroon, the Democratic Republic of Congo, Nigeria and Somalia. Each of these mothers had the same experience of limited or no access to haemophilia care in their countries of origin. On moving to the UK, they experienced feelings of guilt about their ability to access treatment for their sons while others in their families are unable to access treatment. Awareness has been raised by these women and shared with African communities in the UK. In addition, two mothers have engaged in active fundraising in an attempt to establish haemophilia care in their home countries. This adds further to their need for support.

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