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This article discusses, from a psychological perspective, the life experience of the adult and ageing person with haemophilia, including psychological issues, aspects of his personal and social integration, decision-making, communication and other factors that may affect treatment adherence and quality of life. The aim was to provide haematologists and healthcare staff with knowledge and resources to improve communication and support for adult persons with haemophilia, and raise awareness on psychosocial issues related to quality of life, sexuality and aspects associated with ageing with haemophilia. Adulthood is a period of many personal and social changes, and ageing with haemophilia is a relatively new phenomenon due to increased life expectancy in this population. Patients have to adapt to the disease continuously when facing new expectations, life projects and issues arising with increasing age, so the healthcare team should be ready to provide support. A good therapeutic alliance with the patient must be accompanied by assessment and counselling in aspects including satisfaction, perceived difficulties and barriers, and emotional needs. Raising awareness of all this will result in the patient benefiting from the recent improvements in treatments.

Introduction: Hemophilia is a chronic disease, and as such it can affect the perceived competence of patients, especially children. A negative perception can result in psychosocial problems and maladjustment. A positive perception makes the person feel able to cope with the challenges of everyday life. Aim: Evaluate the self‐perception of children with hemophilia compared with group of children without disease, and assessing whether the disease affects their personal development. Methods: Cross‐sectional study. The sample was 58 children aged 8 to 12 years, 53% PHW and 47% healthy children, the average age 10.8 (SD: 1.20). We recorded clinical and physical data, the Self‐Perception Profile for Children (SPPC) and a Physical Activity Questionnaire (FELS‐PAQ). In the group of hemophilia we assess their status joint (HJHS) and physical functioning (HAL) children version. Results: PWH show good joint status (M = 5.87; SD = 8.7), and a physical functionality within the average (M = 69.29, SD = 29.1). There are no significant differences between healthy children and PWH in self‐perception, both show a high perception of themselves (M = 23.4, SD = 6.67). Regarding physical activity, we observe significant differences in Sport Index (P < 0.05) and Work Index (P < 0.01), in the latter, the healthy children are worse than PWH severe. Positive correlation between age and perception of sporting competence (r = 0.25) and negative correlation with BMI (r = −0.25). Positive correlation between age and total score of physical activity (r = 0.29) and Leisure index (r = 0.26). Positive correlation between the perception of sports competence and Leisure index (r = 0.30). Discussion/Conclusion: The impact of prophylactic treatment in children with hemophilia has involved a normalization in their lives. Differences with children without disease hardly exist, being essential to continue promoting adherence to treatment and education the child to their situation to achieve a good self‐care and autonomy throughout their life Sin financiación 2.768 JCR (2017) Q2, 32/71 Hematology 1.277 SJR (2017) Q1, 30/134 Hematology No data IDR 2017 UEM

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.