Living a secret: Disclosure among adolescents and young adults with chronic illnesses

Abstract

Objectives This qualitative study examines how and why adolescents living with visible and invisible chronic illnesses choose to share their condition with individuals within their social environments. Methods A sample of 25 adolescents were recruited from five subspecialty services: Spina bifida, rheumatology, cardiology, cystic fibrosis, and renal transplant/dialysis. Recruits completed a semi-structured interview designed to explore: (1) to whom adolescents disclose their conditions, (2) motivation and conditions under which they disclose, (3) content of disclosure, and (4) barriers to disclosure. Results Family members closely connected to treatment or management are most likely to be primary targets of disclosure. Regardless of social network size, respondents disclosed their illness to few peers. Common reasons for disclosure were perceived trust and shared experience with illness and disability. Reasons for withholding disclosure include perceived fear of rejection, pity, and perceptions of being seen as vulnerable or different. Discussion Disclosure was found to be influenced by (a) the visibility of a condition, (b) the anticipated response from the recipient, (c) practical needs, and (d) a decision that disclosure is justified. These findings inform clinical practice, warrant the need for further study, and insinuate practical solutions to combat the socio-emotional impact of nondisclosure among adolescents.