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.

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

“…Adolescents, in particular, have been shown to lack basic self‐management skills such as treatment routines, ability to identify and act on bleeds, re‐ordering medicine, self‐infusing and communicating with the HTC to receive optimal care . Also, current YWH have grown up with intensive PTX resulting in a lifestyle much similar to that of their peers with higher HRQoL and less disability compared to earlier patients .…”

“…Overall, the main patient‐related barriers (b) are lacking knowledge about haemophilia, including low perceived benefit of PTX . Forgetfulness, poor self‐management and self‐efficacy as well as lacking disease acceptance are crucial barriers . Full self‐management includes “the ability to seek, understand and apply health information to participate in health decisions and the daily management of symptoms and treatment as well as the physical and psychosocial consequences and lifestyle changes following from chronic disease” .…”

“…The present qualitative review examined adherence to PTX in YWH . We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH's disease perceptions, characteristics, health‐related QoL and needs . The outcome is an overview of the latest published recommendations to support treatment adherence in YWH during the transition from family‐oriented care to self‐care and from paediatric to adult care.…”

Hemophilia Care in the Pediatric Age

“…Hemophilia does not predispose to any mental illness, but the person with hemophilia and his environment may greatly benefit from having professionals help them manage to adapt to the disease, cope with the experience of suffering and overcome the difficulties caused by chronicity, achieving the best quality of life (QoL) possible [76]. Psychosocial and cultural factors exert an influence on patients’ QoL and the cultural background plays an important role [77].…”

“…Communication with the healthcare team could promote, at this stage, new strategies of problem solving in parents, enhancing their self efficacy and empowerment [76]. For example, at the beginning, it is usual that the child is overprotected, but this behavior is not useful for the child’s psychological and social development and the team could help parents to adapt their strategies.…”