Illness conversations: Self-disclosure among children and youth with chronic illnesses

Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of disclosure among children and youth with chronic illnesses. We conducted a review of the literature to understand the process of disclosure among children and youth with chronic illnesses in the context of peer-based relationships.

A narrative review was completed using three databases. The search yielded 11 articles that utilized various research designs.

Most of the literature was qualitative in nature. Most children and youth engaged in non-disclosure and concealment which is born out of fears of discrimination. Fewer children and youth engaged in unplanned disclosure, passive disclosure, partial disclosure, and open disclosure. Children and youth carefully consider who they are disclosing to and perceptions about other peoples' responses strongly impact disclosure. Children and youth disclose verbally, behaviorally, and in written form. Disclosure is associated with both positive and negative effects, such as confidence, self-advocacy, and distress.

Health providers and researchers should critically support disclosure and empower children and youth with the resources they need to be agents in their own disclosure decisions.