Haemophilia 2010; an exploration of the lived experience of boys with haemophilia

There is a paucity of psychosocial research into living with haemophilia from a child’s perspective. Published works focus predominantly on the impact of HIV infection which occurred in the mid 1980’s. Since then treatment has been improved and intensified so that most children with severe haemophilia are treated with intra-venous infusions every other day to prevent bleeding. This means that children can lead near normal lifestyles, yet it is not normal to be expected to learn to self-infuse and self-manage a long term condition from a young age. This thesis provides a cohesive body of work examining life with haemophilia from the child and young person’s perspective. The aims of the study were to capture the views of children across a wide age range using a variety of age appropriate research methods, which play to the strength of individual children. The voices of children as young as four years of age are included and shed light on very young children’s views of living with long term health issues. Twelve peer-reviewed published papers form the main body of the thesis. These represent a significant contribution to haemophilia psycho-social research of the last decade and are already impacting on future studies and outcomes monitoring measures for people with haemophilia and related bleeding disorders