PB1210 - Exploring the Mental Health and Resilience of Youth Diagnosed with Hemophilia: A Scoping Review

Background: Hemophilia is a significant bleeding disorder characterized by a deficiency in or presence of defective coagulation factors. Since severe hemophilia is typically inherited and diagnosed at an early age, this chronic disease poses social, emotional, and physical challenges for youths with ongoing needs for coping. The Resilience in Illness Model (RIM) proposed by Haase et al. (2014) suggested that resilience could be an important regulator of various factors in supporting youth to cope with chronic medical conditions (i.e. promoting perceived social support, courageous coping and reducing illness-related distress). However, current research that explores the role of resilience in managing hemophilia among youths is scarce.

Aims: Thus, a systemic scoping review was conducted, which aims to explore the relationship between mental health and resilience in adolescents and young adults (ages 10-24) diagnosed with hemophilia.

Methods: A systematic scoping review was conducted for which three databases were screened: Ovid MEDLINE, Ovid Embase, and PsycInfo. Our search strategy and inclusion/exclusion criteria yielded the initial studies. With duplicates removed, 209 studies were screened for titles and abstracts. 31 studies were included for full-text screening and 7 studies were selected for data extraction and final inclusion.

Results: Resilience was found to be protective against psychological distress and promote mental health among youths with hemophilia. Specifically, coping strategies such as practicing spirituality (i.e. faith identification and belief in “divine mercy”), participation in physical activity, and the presence of social support systems were found to be the most effective in promoting resilience within this population.

Conclusion(s): Given the significance of resilience in the relationship between hemophilia and mental health outcomes, implementation of resilience-oriented interventions into the clinical practice of hemophilia should be considered. Recommendations are made to expand research to consider resource support, including digital mental health technologies, that could be well-integrated into pediatric care to develop a daily resilience routine.