The experience of living with a chronic illness during adolescence: a critical review of the literature.

Aims: To identify and critique literature on the adolescent lived experience of chronic illness; describe the lived experience; and to make recommendations for clinical practice.

Background: Young people with chronic illness have the same developmental issues as those who are healthy. However, development can be disrupted by treatment and repeated hospitalisation. While the physical consequences of chronic illness on development have been established, the subjective personal experience is less known.

Design: Literature review.

Methods: Electronic databases and hand searches were made of the literature published between January 1990-September 2007. Literature was eligible for inclusion if it involved adolescents between 10-19 years, and published in English and used qualitative methods of data collection. Methodological quality was assessed using the criteria described by Cesario et al. [Journal of Obstetrics, Gynaecology and Neonatal Nursing 31 (2002) 31].

Conclusions: Twenty studies were identified involving young people with a wide variety of chronic illnesses. The study quality was variable, however, generally the majority was assessed as being good or fair. Seven common themes were found between the identified studies: developing and maintaining friendships; being normal/getting on with life; the importance of family; attitude to treatment; experiences of school; relationship with the healthcare professionals; and the future.

Relevance To Practice: As there was commonality in themes between studies strategies to lessen the burden of chronic illness during adolescence do not necessarily need to be disease specific. Nurses need to focus on treating the young person rather than their illness.