Constrained Choices and Meaning-Making: A Qualitative Study of Caregivers of Children With Hematologic Malignancies

Caregivers of children with hematologic malignancies experience prolonged treatment demands, uncertainty, and substantial psychosocial burden. This study explored how caregivers navigate everyday caregiving responsibilities, decision-making, and emotional endurance under conditions of uncertainty and constrained choice.

A qualitative study informed by a descriptive phenomenological orientation was conducted with 15 primary caregivers recruited from a pediatric hematology unit in China using purposive sampling. Data were collected through semi-structured interviews and supplemented by non-participant observation. Data were analyzed using reflexive thematic analysis. An existential-oriented interpretive lens was introduced during later stages of analysis to deepen understanding of agency, responsibility, and meaning within caregiving experiences.

Caregivers described caregiving as an ongoing process of negotiating treatment demands, family responsibilities, financial pressures, and emotional strain under conditions of limited control. Everyday life became reorganized around the child's illness, with caregivers adopting present-oriented routines focused on symptom monitoring, treatment continuity, and maintaining immediate stability. Emotional endurance was sustained through regulation of distress, selective focus on incremental improvement, and maintenance of everyday relational continuity. Caregivers' experiences were also shaped by sociocultural expectations surrounding parental responsibility, emotional restraint, and family obligation.

Caregiving in pediatric hematologic oncology involves continuous adaptation within conditions of uncertainty rather than discrete coping responses to stress. Psychosocial support may therefore benefit from approaches that help caregivers sustain everyday functioning, navigate ongoing decision-making, and maintain emotional continuity while living with unresolved uncertainty.