Children were infants (6 patients), age 18 months to 4 years (9 patients), 5 to 9 years (2 patients), and 10 to 14 years (6 patients). Type of cancer varied as well: brain tumor (various types; 5 cases), Ewings sarcoma (4 cases), leukemia (6 cases), rhabdomyosarcoma (4 cases), retinoblastoma (1 case), and spinal and brain tumors (1 case). Ten children were living; 13 were deceased.
Themes within the parent’s writing illustrated a loss of control and role of protector, struggles as a caregiver, reflections on their child’s resilience and being a child with cancer, and creating a lasting legacy of their child. Support for these parents could include facilitating story writing, supporting their exploration of existing cultural scripts, and listening carefully to the kinds of narratives parents use.
The authors concluded that the identification of preexisting narratives can facilitate exploration of sensitive issues such as death of a child. They also found that sociocultural influences, particularly inadequate cultural resources for making sense of death during childhood, shape family experiences of pediatric cancer.
“Narrating personal experiences in the digital realm offered a chance for parents to confront difficult emotions, frame their child’s life in ways that were beneficial to their own coping, and create a legacy,” explained Dr Bally.
Bally JMG, Burles M, Abbasi A. Using narrative research methods to explore the experiences of parents of children with cancer who have shared their stories online. Oral presentation at: ONS 44th Annual Congress; April 11-14, 2019; Anaheim, CA.