Falling Down the Rabbit Hole: Child and Family Experiences of Pediatric Hematopoietic Stem Cell Transplant

Area of Science:

• Pediatric Hematology/Oncology
• Family Systems Theory
• Expressive Arts Therapy
• Qualitative Research

Background:

• Pediatric hematopoietic stem cell transplant (HSCT) is a life-threatening intensive treatment.
• All family members experience significant distress during pediatric HSCT.
• A comprehensive understanding of the family's holistic experience is lacking.

Purpose of the Study:

• To develop a theoretical understanding of the family experience of pediatric HSCT.
• To explore the family systems dynamics throughout the HSCT trajectory.

Main Methods:

• Grounded theory methodology.
• Utilized a family systems-expressive arts framework.
• Included six families (15 members) with two interviews, drawing, and "dialoguing with images" process.

Main Results:

• Families did not always perceive HSCT as a shared family experience.
• Participants expressed surprise at other family members' perspectives.
• The family experience unfolds across pre-HSCT, hospitalization (fragmentation), and reintegration phases.

Conclusions:

• Pediatric HSCT profoundly impacts family dynamics and cohesion.
• A critical need exists for targeted family interventions during transitions into, throughout, and following HSCT.
• Expressive arts methods can facilitate deeper family understanding and communication during intensive medical treatments.