The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious Illnesses

DOI

Families managing serious health conditions in children are often burdened not just by the challenge of health management but also by the heavy weight of stigma. To assist these families, a variety of physical and digital support systems have been established to address their emotional and informational needs. In our study, we interviewed 32 children and parents living with serious chronic pulmonary illnesses to gain insights into their experiences with both their conditions and support systems in place. We discovered that although a wide range of support systems was available, most participants chose to selectively engage or completely withdraw from them. Through the lens of Ecological Systems Theory, we shed light on the presence of health-related stigma and unintended stigma associated with support systems across different ecological layers. Our work provides a comprehensive and dynamic perspective on stigma, considering technological, interpersonal, institutional, and social factors. By examining how stigma arises in social interactions, we delve into the concept of "stigma work" and offer design considerations for more empathetic support systems that attend to individuals and groups with stigmatized health conditions, identities, or experiences.