• Amii C Steele, Julia Kaal, Amanda L Thompson, Maru Barrera, Bruce E Compas, Betty Davies, Diane L Fairclough, Terrah L Foster, Mary Jo Gilmer, Nancy Hogan, Kathryn Vannatta, and Cynthia A Gerhardt.
• The Research Institute at Nationwide Children's Hospital and The Ohio State University, Columbus, OH 43205, USA.
• J. Pediatr. Hematol. Oncol. 2013 May 1;35(4):253-9.

ObjectiveTo determine how to improve care for families by obtaining their advice to health care providers and researchers after a child's death from cancer.DesignFamilies 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.SettingData were collected in the home.ParticipantsParticipants (N=99) included 36 mothers, 24 fathers, and 39 siblings from 40 families.Outcome MeasuresEach participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content.FindingsFive 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.ConclusionsMany 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.

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