Living a secret: Disclosure among adolescents and young adults with chronic illnesses
D Kaushansky, J Cox, C Dodson… - Chronic …, 2017 - journals.sagepub.com
D Kaushansky, J Cox, C Dodson, M McNeeley, S Kumar, E Iverson
Chronic illness, 2017•journals.sagepub.comObjectives 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 …
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 …
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.