The experience of chemotherapy-induced peripheral neuropathy among childhood cancer survivors

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 side effect of chemotherapy which impacts the peripheral nervous system and results in a variety of sensory and motor abnormalities such as numbness, pain, muscle weakness, or impaired coordination. While CIPN is poorly understood in general, there is a particularly poor understanding of the experience of CIPN among CCS, which leads to lack of appropriate support for maximizing physical function and quality of life. This qualitative study used narrative analysis with a phenomenological influence to understand the lived experience of CIPN among five CCS between the ages of 18 and 30. Semi-structured interviews and photo-elicitation were used. Photo-elicitation involves utilizing photographs to enhance the participant's expression of their experience. 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 that impact vocation, schooling, and other social roles important in the lives of adolescent and young adult CCS. These findings support the need for the development of interventions to 're-build the connections' CCS are lacking, as well as focused clinical assessments to identify this under-appreciated condition.