No 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.

Introduction Chronic diseases, after diagnosis, involve changes that have to favour coping with the new situation. The resources used will help control, manage and adapt to the disease. The psychological aspects may be influencing how the individual faces the situation. Aim To assess whether perceptions or beliefs and illness behaviour influence the choice of coping strategies for young and adult patients with haemophilia. Methods Multicenter cross‐sectional descriptive study. We recruited 63 patients with haemophilia A and B, adolescents, young and adults, and both types of treatment. A clinical and sociodemographic data sheet, the Coping Strategies Inventory (CSI), the Illness Perception Questionnaire‐revised (IPQ‐R) and the Illness Behaviour Questionnaire (IBQ) were used. Results Patients with haemophilia use appropriate coping strategies, both cognitive and behavioural. Most of them are on‐demand treatment, and despite arthropathy, they perceive good control of haemophilia. However, patients in prophylactic treatment are those employed more maladaptive coping strategies, less perception of control and hypochondriacal behaviour to the disease. The age variable may be relevant but we did not find significant differences. Conclusions Coping strategies used by patients with haemophilia are adequate. Although it is noted that the perception of the disease, its controllability or not, affects illness behaviour and consequently how coping with haemophilia. These are based on personal characteristics, cognitive and attitudinal dispositions that the individual consciously use to solve or face adverse situations. The analysis of coping styles of patients could be a tool for professionals to manage properly the disease.

Sports activity in children with hemophilia is associated with an improved quality of life and joint health. It is also associated with improved psychosocial wellness.