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

Abstract

Families managing serious health conditions in children are often burdened not only by the challenge of health management but also by the heavy weight of stigma. To assist these families, various physical and digital support systems have been established to address their emotional and informational needs. 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. We discovered that, although a wide range of support systems were available, most participants chose to engage selectively with or completely withdraw from them. Using the ecological systems theory, we elucidate the presence of health-related and unintended stigmas associated with support systems across different ecological layers. Our work provides a comprehensive and dynamic perspective on these stigmas, considering technological, interpersonal, institutional, and social factors. By examining how stigma arises in social interactions, we introduce and 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.