title: Practical aspects of psychological support to the patient with haemophilia from diagnosis in infancy through childhood and adolescence.
abstract: Persons with haemophilia, living with their condition from infancy, require attention from a biopsychosocial approach, in which both the biological and the biographical dimension are addressed. These patients and their environment may benefit greatly from having professionals to help them manage, pre-emptively if possible, to adapt to the disease, cope with the experience of suffering and overcome the difficulties caused by chronicity. The ultimate goal of the interventions was to achieve the best quality of life possible with tailored objectives throughout the patient's life, including disease control, addressing the particular difficulties, and achieving optimal empowerment. This article aims to describe the role of Health Psychology and its professionals in supporting the young patient with haemophilia and provide a brief guide that might be useful for health professionals involved in his care. From the psychological perspective, this paper focuses on communication of diagnosis, the role and support of the family, issues during infancy, childhood and adolescence and how the healthcare team can address them to provide successful support.
authors.affiliation: Instituto de Investigaciones Sanitarias La Fe, Unidad de Hemostasia y Trombosis, Hospital Universitario y Politécnico La Fe, Valencia, Spain. garcia_mardas@gva.es.
authors.forename: M
authors.initials: M
authors.lastname: García-Dasí
authors.affiliation: Asociación Regional Murciana de Hemofilia, Murcia, Spain.
authors.forename: A
authors.initials: A
authors.lastname: Torres-Ortuño
authors.affiliation: Asociación Malagueña de Hemofilia, Malaga, Spain.
authors.forename: R
authors.initials: R
authors.lastname: Cid-Sabatel
authors.affiliation: Instituto de Investigaciones Sanitarias La Fe, Unidad de Hemostasia y Trombosis, Hospital Universitario y Politécnico La Fe, Valencia, Spain.|Hospital Universitario La Paz, Madrid, Spain.
authors.forename: J
authors.initials: J
authors.lastname: Barbero
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003376:Counseling; D006467:Hemophilia A / Q000453:epidemiology / Q000523:psychology*; D006801:Humans; D007223:Infant; D010348:Patient Care Team; D010817:Physician-Patient Relations; D000072858:Psychosocial Support Systems; D011788:Quality of Life; D055815:Young Adult
keywords: adolescence; childhood; family; haemophilia; infancy; psychological support