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

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...

Full description

Saved in:
Bibliographic Details
Published in:Qualitative health research 2020-06, Vol.30 (7), p.1125-1138
Main Authors: West, Christina H., Dusome, Debra L., Winsor, Joanne, Rallison, Lillian B.
Format: Article
Language:English
Subjects:
Accidental Falls
Child
Family
Grounded Theory
Health technology assessment
Hematopoietic Stem Cell Transplantation
Hospitalization
Humans
Intensive treatment
Life threatening
Pediatrics
Psychological distress
Qualitative research
Relatives
Segmentation
Stem cell transplantation
Stem cells
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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.
ISSN:1049-7323
1552-7557
DOI:10.1177/1049732320912410