Literature DB >> 27385664

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

Wendy Landier1, JoAnn Ahern2, Lamia P Barakat3, Smita Bhatia1, Kristin M Bingen4, Patricia G Bondurant5, Susan L Cohn6, Sarah K Dobrozsi4, Maureen Haugen7, Ruth Anne Herring8, Mary C Hooke9, Melissa Martin10, Kathryn Murphy11, Amy R Newman4, Cheryl C Rodgers12, Kathleen S Ruccione13, Jeneane Sullivan3, Marianne Weiss14, Janice Withycombe15, Lise Yasui16, Marilyn Hockenberry12.   

Abstract

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

Entities:  

Keywords:  Children’s Oncology Group; childhood cancer; new diagnosis; patient/family education

Mesh:

Year:  2016        PMID: 27385664      PMCID: PMC5215987          DOI: 10.1177/1043454216655983

Source DB:  PubMed          Journal:  J Pediatr Oncol Nurs        ISSN: 1043-4542            Impact factor:   1.636


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