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Children’s Oncology Group develops standardized checklist to educate parents of children with cancer
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Children’s Oncology Group developed a checklist nurses can follow to guide the education of parents whose children have been diagnosed with cancer.
The consensus recommendations — created by a group of 19 nurses and two parent advocates — are divided into three categories: items to address prior to the child’s initial discharge from the hospital following diagnosis; items to address in the first month after diagnosis; and items to address before completion of cancer therapy.
The recommendations encompass several topics, including nutrition, medication administration, financial issues and emotional coping techniques.
“The checklist is designed to guide the education of parents of newly diagnosed pediatric oncology patients, and it is intended for use by nurses and other multidisciplinary health care team members,” Wendy Landier, PhD, CRNP, chair of Children’s Oncology Group Nursing Discipline and associate professor in the division of pediatric hematology/oncology at The University of Alabama at Birmingham School of Medicine, told HemOnc Today. “The goal is to facilitate a standardized approach to education across institutions that provide pediatric oncology care so that all families receive the critical information that they need to provide safe care to their child, delivered in a consistent fashion, while avoiding information overload.”
Landier and the other experts who helped create the checklist hope it will help parents care for their children at home, and also serve as a basis for future research and teaching strategies.
HemOnc Today spoke with Landier about the components of the checklist, why this type of document is necessary, and the potential impact it could have for children with pediatric cancer and their families.
Q : Can you describe what you consider some of the most important items on the checklist?
A: Most often, when a child is diagnosed with cancer, he or she is admitted to the hospital on an emergent basis for the initial workup and treatment. Therefore, the first category on the checklist — titled “Primary Topics” — contains content that parents need to learn before the child is discharged home from the hospital for the first time. For children not admitted to the hospital, this content can be taught to parents in the outpatient setting. All topics in this category are considered necessary for parents to learn in order to provide safe care for their child at home. Some of the most important items in this category include knowing when to call for help, which includes identifying symptoms that require immediate medical intervention; knowing who to call for help, which involves identifying the correct way to contact the medical team during office hours, as well as during nights, weekends and holidays; and knowing how to obtain, prepare and correctly administer medications that the child will take at home.
Q: How about the second category?
A: The second category — called “Secondary Topics” — includes items to teach parents in the first month after the child’s diagnosis. These are things that are important for parents to know within the first month of treatment, but that are not essential to providing the child’s initial care at home following the diagnosis. Important topics in this category include an introduction to the outpatient clinic, nutrition and environmental precautions.
Q: And the third?
A: These items — called “Tertiary Topics” — are important to discuss with parents once they have mastered topics in the primary and secondary categories, but before the child finishes treatment. Important topics in this category include tests and procedures, insurance issues, and absences from work and school.
Q : How does this checklist help nurses and clinicians, as well as patients and their families?
A: The checklist offers several benefits for nurses and clinicians. By design, the checklist incorporates expert consensus recommendations regarding the provision of education to parents of children newly diagnosed with cancer. It allows tailoring to the content most applicable to any given patient, as well as tailoring to the specific preferences of the learner, such as language and methods of information delivery.
Q: Could this improve patient outcomes?
A: Improving outcomes certainly is our goal. We think standardizing educational content for these families, while tailoring delivery methods to learner preferences, will help families master the knowledge and skills that they need to provide safe care for their children at home following a diagnosis of pediatric cancer. This could lead to earlier recognition of and intervention for complications, as well as reduced time to receipt of emergency care. We have pilot studies underway evaluating these outcomes. Should the results be positive, we have plans for studies to test widespread dissemination of these educational strategies across Children’s Oncology Group institutions.
Q: How did parents of pediatric patients contribute to the development of this checklist?
A: Two parents participated on the task force that developed the checklist. Both are from Children’s Oncology Group Patient Advocacy Committee. Both contributed important insights that were fundamental to the final design and content of the checklist.
Q: Shifting gears, could you talk about the teaching strategies you used?
A: The checklist does not specify a particular teaching strategy; rather, nurses and clinicians are encouraged to adapt the use of the checklist to the learning needs and preferences of each family. Thus, content is standardized, whereas teaching methods are individualized to the learner. Potential teaching strategies include the use of verbal instruction, written materials, videos, return demonstration, care participation and use of the teach-back technique, which involves having the learner explain the topic or demonstrate the skill for the teacher, so that the learner’s competency with the topic can be assessed.
Q: Is there anything else you would like to mention?
A: Sadly, Cheryl C. Rodgers, PhD, RN, CPNP, CPON, of Duke University School of Nursing, who led this project, died in early July. We believe her important work and contributions to the field will live on in many ways, including through implementation of this checklist. – by Rob Volansky
Reference:
Rodgers C, et al. J Pediatr Oncol Nurs. 2018;doi:10.1177/1043454218764889.
For more information:
Wendy Landier, PhD, CRNP, can be reached at The University of Alabama at Birmingham, 1600 7th Ave. South, Lowder 500, Birmingham, AL 35233; email: wlandier@peds.uab.edu.
Disclosure: Landier reports no relevant financial disclosures.