As the number of childhood cancer survivors (CCS) is increasing, it is imperative to understand the late effects of childhood cancer therapy to optimize their health and quality of life. Chemotherapy-induced peripheral neuropathy (CIPN) is an unpleasant effect of chemotherapy that affects the peripheral nervous system. This qualitative study uses narrative analysis with a phenomenological influence to understand the lived experience of CIPN among five CCS utilizing photo-elicitation. The lived experience of CIPN is characterized by "a condition of disconnection" with three subthemes: (1) disconnection between mind and body, (2) disconnection between anticipated potential and reality, and (3) disconnection between survivors and support. The condition of disconnection leads to a variety of negative physical and emotional performance outcomes. These findings support the need for refined clinical strategies for identifying this underappreciated condition and further development of interventions to "rebuild the connections" that CCS are lacking.
Keywords: AYA; adolescents and young adults; late effects of cancer; survivorship; symptom management.