Haemophilia : the official journal of the World Federation of Hemophilia · 2022
Socio-emotional repercussions of severe haemophilia A in the daily lives of children.
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Alves Feitoza de Andrade Iara, Castanheira Nascimento Lucila, Albuquerque de Paula Weslla Karla, Rocha Guimarães Tania Maria, Leite Meirelles Monteiro Estella Maria, Pereira Linhares Francisca Marcia, De Moraes Lima Marinus, de Lavor Coriolano Marinus Maria Wanderleya
Аннотация
INTRODUCTION AND AIM: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSION: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSION: 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.