Cheryl Rodgers and Marilyn Hockenberry have several articles recently published in a special edition of the Journal of Pediatric Oncology Nursing. The articles describe multiple projects focusing on patient and family education, initiating from the Children’s Oncology Group Nursing Discipline. Rodgers led two teams including a systematic review and a qualitative study describing educational practices for children newly diagnosed with cancer and their parents. Hockenberry mentored a group of nurses to complete a Delphi survey regarding essential educational content for families of children newly diagnosed with cancer. Findings from these projects were presented at a State of the Science symposium at the Children’s Oncology Group meeting in October 2015. The symposium was supported by the National Cancer Institute (R13CA 196165 PIs: Landier & Hockenberry).

Articles published included:

• "Understanding Effective Delivery of Patient and Family Education in Pediatric Oncology: A Systematic Review From the Children's Oncology Group." Other co-authors included experts from the University of Calgary in Canada, Cook Children's Medical Center in Texas; the University of Michigan Health System in Michigan; the University of Virginia School of Nursing in Charlottesville, Virginia; and Saint Louis University in Missouri.
  • Abstract: A diagnosis of childhood cancer is a life-changing event for the entire family. Parents must not only deal with the cancer diagnosis but also acquire new knowledge and skills to care safely for their child at home. Best practices for delivery of patient/family education after a new diagnosis of childhood cancer are currently unknown. The purpose of this systematic review was to evaluate the existing body of evidence to determine the current state of knowledge regarding the delivery of education to newly diagnosed pediatric oncology patients and families. Eighty-three articles regarding educational methods, content, influencing factors, and interventions for newly diagnosed pediatric patients with cancer or other chronic illnesses were systematically identified, summarized, and appraised according to the Grading of Recommendations Assessment, Development, and Evaluation criteria. Based on the evidence, 10 recommendations for practice were identified. These recommendations address delivery methods, content, influencing factors, and educational interventions for parents and siblings. Transferring these recommendations into practice may enhance the quality of education delivered by health care providers and received by patients and families following a new diagnosis of childhood cancer.

• "Processing Information After a Child's Cancer Diagnosis - How Parents Learn: A Report From the Children's Oncology Group." Co-authors included experts from Children's Mercy Hospital in Missouri; Emory University in Georgia; Baxalta, Inc. in Massachusetts; and Children's National Health System in Washington, D.C.
  • Abstract: Parents of a child newly diagnosed with cancer must receive an extensive amount of information before their child’s initial hospital discharge; however, little is known about best practices for providing this education. An interpretive descriptive study design was used to describe actual and preferred educational content, timing, and methods among parents of children newly diagnosed with cancer prior to their child’s first hospital discharge. Twenty parents of children diagnosed with various malignancies participated in individual interviews 2 to 12 months after their child’s diagnosis. Data were analyzed using constant comparative analysis. Education delivery occurred in a telling manner at diagnosis transitioning to a reciprocal process of teaching during the inpatient stay, then primarily back to telling immediately before discharge. Parents expressed a variety of preferred learning styles but noted that their preferences were rarely assessed by health care providers. Multiple factors influenced parents’ ability to process educational information received during their child’s initial hospitalization. Findings suggest that nursing practices should include assessing for influencing factors, providing anticipatory guidance, and incorporating parents’ preferred learning style into the educational plan.

• "Educating Families of Children Newly Diagnosed With Cancer: Insights of A Delphi Panel of Expert Clinicians From the Children's Oncology Group." Co-authors included experts from Ann & Robert H. Lurie Children's Hospital of Chicago in Illinois, University of Alabama, St. Jude Children's Research Hospital in Tennessee, Children's Hospital of Philadelphia, and Nationwide Children's Hospital in Ohio.
  • Abstract: Parents/caregivers require specialized education in order to care for their child with a newly diagnosed cancer. Currently, no evidence-based guidelines exist to identify content essential for inclusion in patient/family education prior to a child’s initial discharge home; this study used Delphi methodology to obtain multidisciplinary consensus regarding essential content amongst pediatric oncology experts from the Children’s Oncology Group. Three questionnaire rounds were employed to identify essential content, evaluate the importance of the educational topics identified, and gain expert consensus regarding the final ranking of topics identified and whether or not each topic was considered mandatory for inclusion in education for newly diagnosed patients. Disease-specific topics were also identified for patients with leukemia, solid tumors, and central nervous system tumors. The results of this study provide, for the first time, multidisciplinary expert consensus regarding key content essential for inclusion in discharge education for newly diagnosed pediatric oncology patients.

• "Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients: Consensus Recommendations from a Children's Oncology Group Expert Panel." Co-authors included experts from University of Alabama, Western Connecticut Health Network, Children's Hospital of Philadelphia in Pennsylvania, Medical College of Wisconsin, Transform Healthcare Consulting, LLC, in Ohio, University of Chicago Comprehensive Cancer Center in Illinois, Ann & Robert H. Lurie Children's Hospital of Chicago in Illinois, Cook Children's Medical Center in Texas, University of Minnesota School of Nursing, Children's Healthcare of Atlanta in Georgia, Children's Hospital of Wisconsin, Azusa Pacific University School of Nursing in California, Marquette University College of Nursing in Wisconsin, Emory University School of Nursing in Georgia, and Children's Oncology Group in California.
  • 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.