Children and Youth's Experience with Relapsed or Refractory B-Cell Acute Lymphoblastic Leukemia Undergoing CAR-T Cell Therapy: A Narrative Inquiry

Abstract

Background: Children and youth with relapsed or refractory B‑cell acute lymphoblastic leukemia treated with chimeric antigen receptor-T cell therapy have an uncertain trajectory.

Aim: To explore the pivotal moments of their experience during chimeric antigen receptor T‑cell therapy.

Methodological approach: A narrative inquiry methodology guided this study. Semi‑structured, age‑appropriate participatory interviews were conducted with three children and youth and two parents.

Findings: Five pivotal moments were identified: (1) from "the toughest moment" to empowerment: time surrounding diagnosis of relapsed B‑ALL; (2) "one of the worst days we had in the hospital": being restrained during leukapheresis; (3) when relationships help counterbalance feeling "stuck in a room": hospitalizations; (4) "the most important part": leaving the hospital; and (5) being "more aware" of their experience when telling their story: after receiving CAR‑T cell therapy.

Conclusion: Listening to children's and youths' voices provides experiential insights that may inform pediatric oncology nursing practice and research.