title: 'What colour is my cancer?' The experience of teenagers and young adults who are shown their cancer samples through a microscope.
abstract: One of the well-known needs of teenagers and young adults with cancer (TYAs) is their quest for knowledge about their illness and its treatment. As well as this they desire to be treated as partners and as an integral part of the team who care for them. This small exploratory study aims to address these issues in the development of a unique project where the young people were given unprecedented access to their own cancer samples and to the professional experts who analyse those samples. This small cohort of 31 TYAs, aged 13-24 years, were invited to look at their samples under a microscope and discuss it with the experts; of these 4 declined. A number of questionnaires, containing both open and closed questions, were given before, immediately post and one month after the viewing session. The results were analysed using SPSS13 and content analysis. The study was able to establish that viewing cancer samples had no measurable effect on the TYAs gaining of new knowledge, sense of control or choices that they made. However, it did show how the young people felt in light of actually 'seeing' their own cancer, and how this seemed to improve the overall perception of their disease. This is a new body of knowledge that requires further, more detailed, rigorous work.
authors.affiliation: Teenage and Young Adult Cancer Service, St James's University Hospital, Beckett Street, Leeds, West Yorkshire LS9 7TF, UK. sue.morgan@leedsth.nhs.uk
authors.forename: Sue
authors.initials: S
authors.lastname: Morgan
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000367:Age Factors; D001707:Biopsy, Needle; D015331:Cohort Studies; D003116:Color; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007150:Immunohistochemistry; D008297:Male; D008853:Microscopy; D009369:Neoplasms / Q000473:pathology* / Q000523:psychology; D010353:Patient Education as Topic; D010358:Patient Participation / Q000706:statistics & numerical data; D010817:Physician-Patient Relations; D018570:Risk Assessment; D012737:Sex Factors; D011795:Surveys and Questionnaires; D014342:Truth Disclosure; D055815:Young Adult