Facing life-threat during youth: a qualitative study on challenges, coping, and needs among adolescents and young adults with cancer

Abstract

Abstract Purpose While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases. Methods Face-to-face in-depth interviews were conducted with patients who were 18–39 years old at diagnosis. The interviews took place 2–5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis. Results Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs. Conclusion AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).