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Bereaved Parents and Siblings Offer Advice to Health Care Providers and Researchers

Steele, Amii C. PhD*; Kaal, Julia MSc*; Thompson, Amanda L. PhD; Barrera, Maru PhD; Compas, Bruce E. PhD§; Davies, Betty RN, PhD, FAAN∥,¶; Fairclough, Diane L. DrPH#; Foster, Terrah L. PhD, RN, CPNP§; Jo Gilmer, Mary PhD, MBA, RN-BC, FAAN§; Hogan, Nancy PhD, RN, FAAN**; Vannatta, Kathryn PhD*; Gerhardt, Cynthia A. PhD*

Journal of Pediatric Hematology/Oncology: May 2013 - Volume 35 - Issue 4 - p 253–259
doi: 10.1097/MPH.0b013e31828afe05
Original Articles

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.

*The Research Institute at Nationwide Children’s Hospital and The Ohio State University, Columbus, OH

Children’s National Medical Center, Washington, DC

Hospital for Sick Children, Toronto, ON

§Vanderbilt University, Nashville, TN

University of California San Francisco, San Francisco, CA

University of Victoria, BC, Canada

#University of Colorado, Denver, CO

**Loyola University of Chicago, Chicago, IL

C.A.G. was supported by a grant from the National Institutes of Health (R01 CA98217).

The authors declare no conflict of interest.

Reprints: Cynthia A. Gerhardt, PhD, The Research Institute at Nationwide Children’s Hospital, Center for Biobehavioral Health, Rm. JW4992, 700 Children’s Drive, Columbus, OH 43205-2696 (e-mail: cynthia.gerhardt@nationwidechildrens.org).

Received September 20, 2011

Accepted January 31, 2013

© 2013 Lippincott Williams & Wilkins, Inc.