Chronically Ill Adolescents' Experiences of Communicating with Doctors: a Qualitative Study

Purpose: To explore the experiences of chronically ill adolescents in communicating with health professionals, including the identification of factors which hinder or facilitate their use of health professionals as an information source.

Methods: 63 adolescents (11-16 years) with a chronic condition (cystic fibrosis, diabetes, epilepsy, juvenile chronic arthritis, or Duchenne muscular dystrophy) were interviewed, and subsequently took part in two group discussion meetings with other adolescents of a similar age with the same condition. Data were analyzed using the framework method involving data reduction, data display, and conclusion-drawing and verification.

Results: Factors affecting the openness and effectiveness of communication included: duration and frequency of contact; gender; perceived attitudes towards adolescents; the communication skills of the adolescent and health professional; and the presence of parents and medical students/trainee doctors. The type of information needed also affected whether the adolescents felt able to discuss an issue with a health professional. Adolescents were reluctant to raise personal or sensitive issues or to ask questions that revealed poor adherence. A perceived lack of interest in the wider impacts of having a chronic condition on day-to-day life was also a barrier to adolescents discussing difficulties at school and socio-emotional problems.

Conclusions: Communication and information provision are key roles for health professionals, yet this study highlights a population with potentially high levels of information need who are facing considerable barriers to addressing these needs. Steps taken to improve adolescent-health professional communication need to address a range of practical, attitudinal and behavioral factors.