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

Dr. Christina West conducts family based, expressive arts research in pediatric blood and marrow transplant (BMT). Her team recently published their findings from a CHRIM funded study in Qualitative Health Research.

BMT is an intensive treatment that includes prolonged isolation of the ill child and at least one parent for weeks to months. Dr. West’s team used an expressive arts method called ‘dialoguing with images’ to help family members explore their illness experiences in qualitative research interviews. Families were asked to draw an image of their experience of BMT and were then guided through a dialogue with their image.

In this expressive arts process, family members came to understand their experiences in a new way, and also heard the experiences of other family members, often for the first time.

The study highlighted the following findings:

BMT hospitalization is a particularly distressing time for families, due to the physical and emotional separation experienced. During this time, family members live a tenuous moment-to-moment existence, in which family life is centred around the survival of the ill child. BMT treatment impacts all family members for months to years following hospitalization and it is difficult for both children and parents to share their experiences with each other.

There is a pressing need to better understand how to support the entire family during hospitalization as well as post-BMT. The expressive arts hold significant therapeutic potential to facilitate family conversation that is not possible through words alone.

Dr. West, who is an Associate Professor in the College of Nursing at the University of Manitoba, and her research team are currently conducting further research on family experiences of pediatric BMT, using qualitative, arts-based approaches that include drawing, writing, image-based activities and digital storytelling in a study funded by Research Manitoba, at CCMB/Children’s Hospital and Alberta Children’s Hospital.