ARTICLES: CEEnd-of-Life Decision Making by Adolescents, Parents, and Healthcare Providers in Pediatric Oncology: RESEARCH TO EVIDENCE-BASED PRACTICE GUIDELINESHinds, Pamela S. PhD, RN, CS; Oakes, Linda MSN, CCRN; Furman, Wayne MD; Quargnenti, Alice BSN; Olson, Mary Sue BSN, OCN; Foppiano, Pheraby RN; Srivastava, Deo Kumar PhDAuthor Information Pamela S. Hinds is Director of Nursing Research, St. Jude Children’s Research Hospital, Memphis, Tennessee. Linda Oakes is Clinical Nurse Specialist, Intensive Care Unit and Pain and Symptom Management Team, St. Jude Children’s Research Hospital, Memphis, Tennessee. Wayne Furman is Associate Member, Solid Tumor Team, St. Jude Children’s Research Hospital, Memphis, Tennessee. Alice Quargnenti is Nursing Research Assistant, St. Jude Children’s Research Hospital, Memphis, Tennessee. Mary Sue Olson is Pediatric Oncology Nurse Specialist, St. Jude Children’s Research Hospital, Memphis, Tennessee. Pheraby Foppiano is Pediatric Oncology Nurse Specialist, St. Jude Children’s Research Hospital, Memphis, Tennessee. Deo Kumar Srivastava, is Associate Member, Biostatistics, St. Jude Children’s Research Hospital, Memphis, Tennessee. Address correspondence and research requests to Pamela S. Hinds, St. June Children’s Research Hospital, 332 North Lauderdale Street, Memphis, TN 38105-2794. Accepted for publication December 12, 2000. Cancer Nursing: April 2001 - Volume 24 - Issue 2 - p 122-134 Buy Abstract Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children’s hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were “information on the health and disease status of the patient,” “all curative options having been attempted,” “trusting the healthcare team,” and “feeling support from the healthcare provider.” The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs. © 2001 Lippincott Williams & Wilkins, Inc.