Together for Short Lives
Call the Helpline 0808 8088 100

Bereaved parents and siblings offer advice to health care providers and researchers

Journal title
Journal of pediatric hematology/oncology
Publication year
Steele, A. C.; Kaal, J.; Thompson, A. L.; Barrera, M.; Compas, B. E.; Davies, B.; Fairclough, D. L.; Foster, T. L.; Jo Gilmer, M.; Hogan, N.; Vannatta, K.; Gerhardt, C. A.

OBJECTIVE: To determine how to improve care for families by obtaining their advice to health care providers and researchers after a child’s death from cancer. DESIGN: Families with a surviving sibling (age, 8 to 17 y) were recruited from cancer registries at 3 hospitals in the United States and Canada 3 to 12 months (M=10.4, SD=3.5) after the child’s death. SETTING: Data were collected in the home. PARTICIPANTS: Participants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. OUTCOME MEASURES: Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. FINDINGS: Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, and (e) offering praise. Interwoven within the 5 themes was a subtheme of continuity of care. CONCLUSIONS: Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.

Research abstracts