Socio-emotional repercussions of severe haemophilia A in the daily lives of children.

Abstract

Haemophilia A, in its most severe form, can have serious repercussions, including issues that are physical, emotional, affective, and social, particularly in childhood. This qualitative study aims to understand the socio-emotional repercussions of severe haemophilia A in children, based on their own testimonies and subjective expressions of their daily lives, in the contexts of the family, school and health service. Individual qualitative interviews were carried out using a playful approach through puppets with 15 children, aged 6-12 years old, in a service for the treatment of haemophilia, located in the northeast of Brazil. Data were analysed using inductive thematic analysis. Four themes were elaborated: (a) Reflecting how I am and how I relate to others; (b) Enjoying family moments; (c) Experiencing the school context: learning, affectivity and play; and (d) Dealing with haemophilia: acceptance and overcoming strategies. The experiences shared by children with severe haemophilia A and their daily needs should be the basis for guiding child-centred care. Encouraging self-care, including self-administration of the deficient factor, requires a partnership between health professionals, family members, school and child in the construction of therapeutic plans that consider the child's active participation.