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

Abstract

Pediatric hematopoietic stem cell transplant (HSCT) is an intensive treatment that can be life-threatening. All family members experience distress. We conducted a grounded theory study using a family systems-expressive arts framework to develop a theoretical understanding of the family experience of HSCT. Six families (15 family members) participated in two interviews, drew an image, and were guided through a "dialoguing with images" process. Participants did not always perceive HSCT as an experience they had lived as a family and were surprised to hear other family members' experiences. While one mother drew, she suddenly understood it was not only her ill child, but the entire family who had "fallen down the rabbit hole." The family experience of HSCT is described across (a) the pre-HSCT trajectory, (b) family fragmentation (hospitalization), and (c) family reintegration. We identified a critical need for targeted family intervention during the transition into HSCT, throughout and following hospitalization.

Keywords: Canada; arts-based research; constructivist grounded theory; dialoguing with images expressive arts process; family research; family systems-expressive arts framework; pediatric hematopoietic stem cell transplant; qualitative; qualitative analysis.

Figure 1.

The family transition through pediatric HSCT. Note. HSCT = hematopoietic stem cell transplant. BMT = blood and marrow transplant. HCP = health care professional.

Figure 2.

“Inspiring ~ It’s a Long Way Down”: drawn by mother (Jane), who later reflected on the impact of creating her image: “I didn’t think I was going to cry.”

Figure 3.

“Fearful Chaos”: brackets attached to specific images indicate family members’ individual drawings (Alex, recipient; Alma, mother); images in the drawing with no brackets are images Kevin drew (brother): the road with “potholes” (center of full image), and Zoe (“guardian angel”) with family, tree, and hearts. After this, Kevin drew his dad (beside bumpy road), with tears coming down his eyes. He started by drawing his dad’s nose and “boogers.” At first, Alex (recipient) was slightly annoyed, thinking he was not taking the drawing activity seriously. During the “dialoguing with images” process, Kevin shared that his father had cried at home. His mom and Alex learned about this for the first time in this interview. Note. HSCT = hematopoietic stem cell transplant.

Figure 4.

“Ups and Downs”: brackets surrounding images drawn by Joe (father), Judy (mother), Payton (recipient), and William’s roller coaster (no brackets) are family members’ individual images. After the dialoguing process, Payton/William eagerly (laying their bodies on the table over the image) drew the family “shield of faith” and a rainbow (mother’s idea) to connect their images. Mom and dad helped to choose the colors for the rainbow.

Figure 5.

“Turmoil and Despair”: “No matter how hard I push on this, I can’t make it dark enough” (visceral, heavy thumping on the table as Alala drew this image). “Show them this, maybe then they will understand what it is like to go through HSCT.” Note. HSCT = hematopoietic stem cell transplant.

Figure 6.

“Grief (Tombstone), Beauty and Growth (Flower)” (mother’s individual drawing from within a larger family image).