Information needs of teenagers with cancer: developing a tool to explore the perceptions of patients and professionals

Abstract

People with cancer require information in order to fashion coping strategies appropriate to their personalities and circumstances. A cancer diagnosis during the years of adolescence poses particular challenges if developmental tasks are to be completed in addition to coping with diagnosis and treatment. For this exploratory pilot study, a card-sort instrument was developed to elicit the information priorities of teenagers with cancer and the beliefs of the professionals involved in their care. The teenagers' priorities were information about their diagnosis, prognosis and treatment. This was accurately perceived by the professionals. The professionals overestimated the importance of information regarding the impact of illness upon the teenagers' lifestyle, particularly concern for their appearance, and underrated their need for information about the future. The card-sort game developed for this study was positively evaluated, and enabled teenagers to consider their priorities and make their needs known. With further development, it has potential in research and clinical applications to allow professionals to meet teenagers' information needs more confidently and so support coping.