Palliative Care Needs in Pediatric Hematologic Oncology: Parent-Child Perspectives Across Stages

Abstract

Context

Children with hematologic malignancies undergo prolonged, intensive therapy that imposes physical, psychological, social, and spiritual challenges on patients and families. Although early palliative care is recommended, little is known about how these needs evolve across the illness course, especially in resource-limited settings.

Objective

To describe the dynamic palliative care needs of children with hematologic cancers and their families and to identify stage-specific opportunities for family-centered support.

Methods

A descriptive qualitative study was conducted at a national tertiary pediatric hospital in China. Semi-structured interviews were completed with 53 participants (32 parents and 21 children) from 32 families. Interviews focused on physical, psychological, social, and spiritual concerns across six phases: diagnosis, intensive treatment, maintenance/consolidation, recovery/follow-up, relapse/progression, and end of life. Data were transcribed and analyzed by inductive content analysis.

Results

Participants reported multidimensional needs that shifted over time. Symptom burden peaked at diagnosis, during intensive therapy, and at relapse or end of life. Emotional distress moved from shock to vigilance and anticipatory grief. Social strain involved disrupted schooling, caregiver overload, and peer isolation. Spiritual concerns, including hope, meaning, and dignity, were present from diagnosis and intensified during advanced illness. Parents and children expressed complementary views on coping and support.

Conclusion

Palliative care needs in pediatric hematologic oncology differ across treatment phases. Trajectory-informed, primary palliative care integrated with culturally responsive support may better anticipate evolving needs and strengthen family resilience.