A qualitative evaluation of an adolescent cancer unit.

ABSTRACT

MULHALL A., KELLY D. & PEARCE S. (2004) European Journal of Cancer Care13, 16-22 A qualitative evaluation of an adolescent cancer unit The Expert Advisory Group on Cancer (1995) recommended that cancer centres in the UK should make provision for adolescents with cancer. However, although their number is growing, only a small number of specialist adolescent cancer units currently exist, and teenagers may often be treated in more general settings. To date, no formal evaluation of adolescent cancer units has taken place. This study adopted a qualitative approach to evaluate the first specialist adolescent oncology unit, which was established in the UK 10 years ago. The aim was to provide insight into the culture of the unit; the experiences of patients and parents on the unit and the staff who worked there; and how the unit was valued by these groups. Semi-structured interviews were conducted with 10 teenagers with cancer, 10 parents and 14 professionals. Systematic non-participant observation of routine activities in the unit was undertaken also. Interview transcripts and observational data were analysed to identify key themes and categories. Six categories emerged from the data (1) cancer and the cancer unit although the word cancer had negative connotations, it provided a common supportive bond for adolescents and families on the unit; (2) what it feels like over time key points in the adolescent cancer experience were emphasized as significant. These included diagnosis, end of treatment and recurrence of cancer; (3) physical structures and facilities these were focused around the needs of adolescents with cancer and helped to provide a suitable environment of care; (4) the social context approaches to care were relaxed in nature and suited the needs of adolescents and their families; (5) the family there was an emphasis on maintaining normal routines whilst managing the impact of cancer on family relationships; and (6) specialism and expertise the availability of an expert team of professionals with specialized insight into adolescents' needs was pivotal to creating an appropriate environment of care. In conclusion, the complex care and treatment needs of adolescents with cancer may best be met by specialist units.