Figure 1.
A diagram representing the relationship between the burdens of illness, treatment, and caregiving experienced by families with children with severe LAD-I. The central part of the diagram highlights the burden of illness, characterized by recurrent severe infections and inflammatory complications, a complicated journey to diagnosis, and social and physical restrictions. Surrounding this central part, the burden of caregiving is depicted, characterized by worry and uncertainty, financial strain, the need to rearrange life around the disease, and isolation and alienation. The burden of treatment is shown as dependent on the treatment type, including antimicrobial prophylaxis, gene therapy, and allo-HSCT, each with its own set of challenges. The entire diagram is framed within the context of the constant risk and fear of infection.
Model demonstrating the experiences of six families experiencing severe LAD-I. A graphical representation of the relationship between the burdens of illness, treatment, and caregiving experienced by families with children with severe LAD-I. The burden of illness is characterized by recurrent, severe infections and inflammatory complications, a complicated journey to diagnosis, and social and physical restrictions. The burden of caregiving is characterized by worry and uncertainty, financial strain, the need to rearrange life around the disease, and isolation and alienation. The burden of treatment is dependent upon the treatment type. Each burden exists within the context of the constant risk and fear of infection.