Self-management needs, strategies and support for individuals with sickle cell disease in developing countries: a scoping review.

Abstract

Sickle cell disease (SCD) poses a significant global health burden, particularly affecting individuals in developing countries with constrained healthcare resources. While research on self-management in the context of SCD is emerging, it has predominantly focused on primary studies. The aim of the scoping review was to identify and map self-management needs of individuals living with SCD, the strategies they employed to meet those needs, and the support interventions available to them. The review was conducted following the Askey and O'Malley's framework to examine the landscape of SCD self-management research. Searches were conducted in PubMed, Scopus, Embase and Dimensions AI, with additional searches in other databases from inception to June 2024 included. Evidence from 14 studies was synthesised to identify self-management needs, strategies and interventions for individuals with SCD. The review identified diverse self-management needs among individuals with SCD, including knowledge deficits, emotional challenges, physical limitations and barriers to healthcare access. Various self-management strategies were reported, such as nutritional management, psychological coping techniques and proactive healthcare management. Self-management interventions, predominantly delivered by healthcare professionals, focused on providing education, skills training and support to individuals with SCD. The outcomes of self-management interventions consistently demonstrated significant improvements across various dimensions, including self-efficacy, knowledge enhancement, self-care practices and psychological well-being among individuals with SCD. This scoping review underscores the importance of addressing the diverse self-management needs of individuals with SCD through tailored interventions and support systems to enhance overall well-being and disease management. Healthcare professionals should prioritise the implementation of multidisciplinary self-management interventions that encompass medical, emotional and social aspects of care to effectively support individuals with SCD in managing their condition. Future research should focus on longitudinal studies to assess the long-term effectiveness of self-management interventions in improving patient outcomes.