`Having cancer changed my life, and changed my life forever': survival, illness legacy and service provision following cancer in childhood

Abstract

Objectives: To explore how having cancer in childhood influences social and personal wellbeing in young adulthood. Methods: Questionnaires (55) eliciting lengthy written responses and in-depth interviews (32) were used with male and female survivors of cancer in childhood (aged between 18 and 28 years). Analysis drew on a combination of grounded-theory techniques and narrative analysis. Results: Three key areas are outlined relating to the characterization of survivorship by participants. These include highlighting survival as not necessarily a simple end to a cancer story, issues relating to post-cancer bodily self-concept and its gendering, and, efforts at managing uncertainties through medical interactions and information gathering. Discussion: Participant stories in this study illustrate that even in long-term survival, cancer is present as a web of ongoing influences from the original disease and treatment, as well as the social and personal aftershocks that can occur well after malignant cells have been controlled. Findings highlight the necessity for complex redevelopment of healthcare services and social support provisions for this growing population.