Spiritual pain as part of the hospitalization experience of children and adolescents with acute lymphoblastic leukemia: A phenomenological study

To explore the experience of hospitalization among children and adolescents in treatment for acute lymphoblastic leukemia. Qualitative phenomenological study informed by grounded theory and involving a convenience sample of children and adolescents attending an oncology unit in Spain. Data were collected through in-depth interviews with seven children aged between 9 and 18 years and analyzed using ATLAS.Ti 7.1. software in order to identify themes in the participants' narratives. Specific strategies were applied to support the validity and reliability of the findings. The analysis of interviews revealed three themes in the participants' accounts of their experience of hospitalization: 1) It's normal to feel afraid when being treated in hospital; 2) Needle procedures are associated with pain, illness, and dying; and 3) Difficulty of expressing the suffering that is experienced in hospital. A core experience among children and adolescents who are hospitalized for cancer treatment is the spiritual pain that results from feeling afraid. These fears are especially associated with the needle procedures that are routinely performed in the diagnosis and treatment of acute lymphoblastic leukemia. •Children and adolescents with acute lymphoblastic leukemia experience spiritual pain during hospitalization.•Needle procedures are the most stressful part of their cancer treatment.•The pain they experience during treatment is often underestimated.•A more holistic and less nociceptive approach to pain is needed.