A Standardized Education Checklist for Parents of Children Newly Diagnosed With Cancer: A Report From the Children’s Oncology Group

Abstract

Parents of children newly diagnosed with cancer must acquire new knowledge and skills in order to safely care for their child at home. Institutional variation exists in the methods and content used by nurses in providing the initial education. The goal of this project was to develop a checklist, standardized across institutions, to guide nursing education provided to parents of children newly diagnosed with cancer. A team of 21 members (19 nurses and 2 parent advocates) used current hospital educational checklists, expert consensus recommendations, and a series of iterative activities and discussions to develop one standardized checklist. The final checklist specifies primary topics that are essential to teach prior to the initial hospital discharge, secondary topics that should be discussed within the first month after the cancer diagnosis, and tertiary topics that should be discussed prior to completion of therapy. This checklist is designed to guide education and will set the stage for future studies to identify effective teaching strategies that optimize the educational process for parents of children newly diagnosed with cancer.

Introduction and Background

Parents experience a variety of emotional reactions and stress during the initial stages of their child’s cancer diagnosis and treatment (Jackson et al., 2007; Rabineau, Mabe, & Vega, 2008). While parents adjust to their child’s cancer diagnosis, they must also acquire new knowledge and skills in order to safely care for their child at home. Parents report being overwhelmed with the amount of information they receive, frustrated when information is inconsistent, and exhausted by the process of learning what they need to know to care for their child at home (Aburn & Gott, 2014; Flury, Caflisch, Ullmann-Bremi, & Spichiger, 2011; Jackson et al., 2007; Rodgers, Laing, et al., 2016; Rodgers, Stegenga, Withycombe, Sachse, & Kelly, 2016).

Educating parents of children newly diagnosed with cancer is a core responsibility of the pediatric oncology nurse (Landier, Leonard, & Ruccione, 2013) that should be carried out in collaboration with the medical and psychosocial teams (Landier et al., 2016). However, many institutions lack a standard process for provision of education to parents, resulting in a wide variation in educational practices (Withycombe et al., 2016) and content (Haugen et al., 2016). Recently, expert consensus recommendations were developed to guide education for parents of children newly diagnosed with cancer (Landier et al., 2016). These consensus statements include five broad principles with associated recommendations that provide important guidelines for practice.

Incorporating expert recommendations into nursing practice is imperative. Checklists are a common method used to promote process improvement and foster consistent practice (Health Research & Educational Trust, 2013; Treadwell, Lucas, & Tsou, 2014) and can provide a method to ensure that information delivery is accurate and complete. A standardized educational checklist can be used to ensure that essential information is delivered consistently to parents of newly diagnosed pediatric oncology patients, without overwhelming parents with information that could be delivered after the initial hospital discharge. Furthermore, the checklist can enhance communication between interdisciplinary health care team members and can be employed across various settings (i.e., inpatient to outpatient, and potentially between institutions, which is beneficial when a child receives care at more than one institution).

Purpose of the Project

This project was part of continuing work within the Children’s Oncology Group (COG) Nursing Discipline to support an evidence-based approach to patient/family education in pediatric oncology. The goal of the project was to develop a standardized checklist that can be used by nurses across COG institutions to guide the initial education provided to parents of children newly diagnosed with cancer before the initial hospital discharge. Of note, use of the term “parent(s)” throughout this article refers to the primary caregiver(s) who will be providing care for the child at home.

Method

In preparation for development of a standardized patient/family education checklist, the COG Nursing Discipline conducted a workshop at the COG annual meeting in September 2016. Interested COG nurses submitted applications to serve on the workshop panel in order to (a) present the educational checklist currently used by their institution to guide the initial education provided to parents of newly diagnosed pediatric oncology patients or (b) serve on an expert panel to discuss and critique the checklists presented at the workshop. Criteria for inclusion on the panel included (a) a minimum of 3 years’ experience in pediatric oncology and (b) currently providing education to newly diagnosed families. A total of 35 high-quality applications were received. Ultimately, six institutional checklists were selected for presentation and were critiqued by six expert panel members (consisting of five nurses and one parent advocate).

Following the workshop, all checklist presenters and panel members agreed to participate in a workgroup. The objective of the workgroup was to develop a standardized educational checklist for use across COG institutions during the initial hospitalization in which the child receives initial cancer treatment. The workgroup was led by chairs of the COG Nursing Discipline, Nursing Research Subcommittee, and Nursing Evidence-Based Practice Subcommittee.

The standardized educational checklist was developed between December 2016 and September 2017 using an iterative process among the workgroup members, facilitated by workgroup leaders via conference calls and email communications. Initially, all topics from the checklists that had been presented at the workshop were merged into one document and categorized according to key content areas, as defined by the patient/family education expert consensus recommendations (Landier et al., 2016). Workgroup members reviewed and discussed the topics to determine essential elements for inclusion in the standardized education checklist. Most items were initially deemed essential, and only a few topics were categorized as nonessential (i.e., “good to know”) information. The initial checklist included 66 essential topics plus 9 additional topics deemed essential for patients with leukemia/lymphoma, solid tumors, or central nervous system tumors.

In an effort to further delineate topics that were essential to teach parents prior to the initial hospital discharge, leaders of the workgroup asked each member to independently complete a worksheet designating the timeline for delivery of each topic (ie, before initial hospital discharge, within 1 month after diagnosis, within two to three months after diagnosis, and before end of treatment), along with an indicator regarding whether the topic should be discussed briefly or in detail. Directions provided for the exercise are listed in Table 1. A conference call was then held to discuss which topics had been identified by the workgroup as essential for delivery prior to the initial hospital discharge. As a result of this discussion, some topics (such as side effects) were combined; however, the workgroup continued to deem most topics as essential. At the conclusion of this exercise and discussion, the checklist included 60 topics essential for all patients, plus 6 additional topics that were specific to patients with solid or central nervous system tumors.

Table 1.

Directions for Workgroup Exercises.

Exercise: Invited participants	Directions provided to participants
Exercise 1: All workgroup members	Select a time when each topic listed below should be introduced to the newly diagnosed pediatric oncology patient and/or their family:
	• Before first hospital discharge
	• Within 1 month after diagnosis
	• Within 2 to 3 months after diagnosis
	• Before end of treatment
	Mark the box with a B, if the topic should be briefly introduced, or mark the box with a D, if the topic should involve a detailed discussion.
	Keep in mind that most topics will require additional discussions regardless if it is a brief or detailed discussion. Also keep in mind that this list will be used on inpatient units who may not have a specific patient/family educator and the staff nurse or other health care providers will be delivering the information.
Exercise 2: All workgroup members plus 4 additional invited COG Nursing Discipline members and 1 additional invited parent advocate	Please review the 3 scenarios listed below, then identify each item in the table with the following options:
	• Essential topic for the patient or parent; this topic must be discussed with the patient/parent prior to discharge and it would not be considered safe to discharge the patient without this information
	• Good to know for the patient or parent; this topic would be good to share with the patient/parent if there was time but it would be safe to discharge the patient without this information with plans to provide this education as an outpatient
	• Discuss as an outpatient for the patient or parent; this topic is important but it is appropriate to discuss with the patient/parent after the hospital discharge
	As before, remember that this education is likely to be provided by the bedside nurse, not a patient/family educator. In addition, please assume that the education will continue in the outpatient setting.

A second exercise was then developed by workgroup leaders to prompt members to consider which topics were absolutely essential for parents who have limited time or capacity for education prior to the initial hospital discharge. The exercise consisted of three patient scenarios in which minimal teaching had been performed prior to the day of discharge due to varied circumstances. The goal of this exercise was to engage workgroup members in critically thinking about which topics were essential to deliver prior to the initial hospital discharge to ensure the safety of the patient at home. Directions provided for the second exercise are listed in Table 1. Four additional members of the COG Nursing Discipline and one additional parent advocate were invited to participate in this exercise and to join the workgroup during the subsequent conference call, during which the results of this exercise were discussed. After completion of this exercise and the related discussion, the topics included in the checklist were narrowed to 24 primary topics plus 4 additional topics specific to patients with solid or central nervous system tumors, categorized as essential to deliver prior to the initial hospital discharge. Twenty-four secondary topics plus two additional topics specific to patients with solid or central nervous system tumors were categorized as secondary topics and targeted for completion within one month of diagnosis, either in the hospital (if time was available to complete this education before discharge) or in the outpatient setting. Twelve tertiary topics were categorized as appropriate for delivery in the outpatient setting as time permits but prior to the completion of treatment.

Further discussion among workgroup leaders and members identified topics that could be combined together (e.g., transportation plan and social work meeting; nausea, vomiting, diarrhea, dehydration, and chemotherapy side effects). The final checklist includes 18 primary topics, applicable to all newly diagnosed patients, that should be addressed prior to the initial hospital discharge; and 7 additional topics that should be addressed prior to the initial discharge only if applicable to the patient’s clinical status (i.e., patients with external central lines, patients with implanted ports, patients with central nervous system tumors, patients requiring postoperative/wound care, patients with pain). The final checklist also includes 14 secondary topics, applicable to all newly diagnosed patients, that are to be addressed within four weeks of the child’s cancer diagnosis; and 2 additional topics that should be addressed only if applicable to the patient’s clinical status; and 11 tertiary topics that should be addressed in the outpatient setting prior to completion of therapy.

Educational Checklist

Checklist Principles

Education is an ongoing process for parents of children newly diagnosed with cancer. Not all information can or should be delivered during the initial hospitalization. Parents are usually overwhelmed by their emotional reaction to the cancer diagnosis, often suffer from disrupted sleep, and require time to work out logistical issues (eg, work-related matters, care for other children) before learning can occur (Aburn & Gott, 2014; Rodgers, Stegenga, et al., 2016). The pacing of information delivery must be individualized for each family with consideration given to the length of the child’s hospitalization, learning needs of the family, specific family circumstances, and the topics that the parent must learn in order to safely care for their child at home following the initial hospital discharge. Nurses should focus on teaching the primary topics that are essential prior to the initial hospital discharge, moving to secondary topics only if the parent requests additional information, or if time permits while the child is still in the hospital (and otherwise should be taught within the first month following the diagnosis). Tertiary topics should generally be reserved for teaching in the outpatient setting, prior to completion of therapy (Figure 1). The timeline for some topics may need to be altered depending on the specific situation, care needs of the patient, and learning needs of the parent. Thorough documentation of the teaching process should be readily available to all health care team members to ensure that ongoing education is transitioned seamlessly between health care settings.

Figure 1.

Timeline for educational topic delivery.

Teaching should never be a onetime occurrence. Parents want to know that information will be repeated until they are able to comprehend concepts and appropriately implement necessary care (Eden, Black, MacKinlay, & Emery, 1994; Rodgers, Laing, et al., 2016). Nurses should inform parents early in the hospitalization that education is a continual process and that essential information will be repeated. Topics, especially complex ones, can be presented to parents sequentially—initially to “plant the seed”—with a continuing discussion later to reinforce and expand upon the topic. Reinforcement should occur both during and after the hospitalization.

Some children live in multiple households. When the child with cancer spends time with each parent in different households, one parent (or primary caregiver) per household must receive all of the teaching regarding primary topics prior to discharge. It is recommended to use one checklist per household to ensure all topics are delivered to each parent.

Checklist Elements

Checklists for the primary, secondary, and tertiary topics are listed in Tables 2, 3, and 4, respectively. Additional topics may be necessary for specific patients and additional rows can be added for those topics at the bottom of the checklist. Columns in the checklist provide space to document: (a) learner who was present for the teaching; (b) learner assessment, including preferences for learning (such as methods), and barriers to learning (such as language); (c) method of teaching used for the session; (d) evaluation of learning upon completion of the teaching session; and (e) date and initials of the person providing the education. Extra columns can be added to the checklist as needed to provide space for documenting additional teaching sessions. A final checkoff can be documented with date and initials in the last checklist column when no additional teaching is required for the topic. These checklists can be adapted to paper or electronic documentation based on institutional procedures.

Table 2.

Primary Topic Checklist.

Topic	Learner	Prefs	Method	Eval	Date/initials	Final checkoff
Meeting with physician team for diagnosis and treatment plan
Meeting with social worker to screen for immediate psychosocial needs
Diagnosis (parents know how to convey this in an emergency)
When to call for help
Who to call for help
Fever
Temperature-taking
Handwashing
Preventing infection
Treatment side effects to know before next appointment
Home medication: Names and purpose
Home medication: Dose and frequency
Home medication: Administration
Home medication: Storage
Home medication: Prescriptions are filled or plan in place to fill them
Home care company (contact information and supplies)
Chemotherapy safe-handling/item disposal
Follow-up appointments
For patients with external central line
Emergency care of central line
Demonstration of central line flush
For CNS tumor patients
Symptoms of increased intracranial pressure, shunt malfunction, headache
Seizures
If applicable
Postop/wound care
Pain/pain management
Topical anesthesia for port

Key

Learner:

Mother (M); Father (F); Patient (P); Sibling (S); Grandparent (GP); Aunt (A); Uncle (U); Caregiver (CG); Other (O).

Preferences (Prefs):

Include learner barriers and preferences regarding language and educational method(s), as follows:

Language: English (E); Spanish (S); French (F); Arabic (A); Chinese (C); Other (O).

Educational Method(s): Verbal (VB); Written (W); Video/TV (V); Demonstrate (D); Participate (P).

Method(s):

Include method(s) used during teaching session.

Evaluation (Eval):

Needs reinforcement (NR); Communicates understanding (CU); Demonstrates with assistance (DA); Demonstrates independently (DI); Teach back (T).

Table 3.

Secondary Topic Checklist.

Topic	Learner	Prefs	Method	Eval	Date/initials
What is cancer?
Chemotherapy overview
Introduction to emergency department
Introduction to outpatient nurse and/or clinic tour
Effects of cancer treatment on the bone marrow
Effects of cancer treatment on the digestive system
Other side effects
Varicella exposure
Nutrition
Bathing and swimming precautions
Environmental precautions
Activity restrictions
No rectal medications or exams
Home medication: Side effects
For patients with external central line
Care of central line dressing
Demonstration of cap change

Key

Learner:

Mother (M); Father (F); Patient (P); Sibling (S); Grandparent (GP); Aunt (A); Uncle (U); Caregiver (CG): Other (O).

Preferences (Prefs):

Include learner barriers and preferences regarding language and educational method(s), as follows:

Language: English (E); Spanish (S); French (F); Arabic (A); Chinese (C); Other (O).

Educational Method(s): Verbal (VB); Written (W); Video/TV (V); Demonstrate (D); Participate (P).

Method(s):

Include method(s) used during teaching session.

Evaluation (Eval):

Needs reinforcement (NR); Communicates understanding (CU); Demonstrates with assistance (DA); Demonstrates independently (DI); Teach back (T).

Table 4.

Tertiary Topic Checklist.

Topic	Learner	Prefs	Method	Eval	Date/initials
Tests and procedures
Vaccinations
Websites for cancer related information
Sexual activity including precautions for pregnancy and sexually transmitted infections
Risky behaviors (ie, smoking, alcohol consumption, tattoos, piercing)
Introduction to child life specialist
Talking with child and siblings about cancer
Coping skills
Work and school absences
Insurance issues
Financial resources, including cancer organization referrals

Key

Learner:

Mother (M); Father (F); Patient (P); Sibling (S); Grandparent (GP); Aunt (A); Uncle (U); Caregiver (CG); Other (O).

Preferences (Prefs):

Include learner barriers and preferences regarding language and educational method(s), as follows:

Language: English (E); Spanish (S); French (F); Arabic (A); Chinese (C); Other (O).

Educational Method(s): Verbal (VB); Written (W); Video/TV (V); Demonstrate (D); Participate (P).

Method(s):

Include method(s) used during teaching session.

Evaluation (Eval):

Needs reinforcement (NR); Communicates understanding (CU); Demonstrates with assistance (DA); Demonstrates independently (DI); Teach back (T).

Table 5 outlines discussion points for the primary topics that a parent must know for safe care of their child with cancer, while Table 6 lists discussion points for the secondary topics and Table 7 describes potential discussion points for tertiary topics. Supplementary discussion regarding any of these topics, or the addition of topics, may be warranted in certain circumstances. Health care providers should consider tailoring the checklist and educational content to address specific clinical and psychosocial needs in accordance with individual circumstances.

Table 5.

Primary Topics Discussion.

Consensus category	Topic	Discussion points
Diagnosis/treatment	Meeting with physician for diagnosis and treatment plan	The nurse assures that the patient/family met with the physician to discuss the child’s diagnosis and treatment plan. The nurse may not be present for the meeting; therefore, this topic may only require a final checkoff that it was completed.
Accessing care	Meeting with social worker to screen for immediate psychosocial needs	The nurse assures that the patient/family met with the social worker and that a plan for transportation from home to the hospital/clinic is in place. The nurse may not be present for the meeting; therefore, this topic may only require a final checkoff that is was completed.
	Diagnosis (parents know how to convey this in an emergency)	For some parents, the child’s diagnosis may be difficult to fully understand. Therefore, at minimum parents should be able to convey to others, especially in an emergency, that their child has cancer, and ideally be able to articulate the specific diagnosis.
	When to call for help (911 vs oncology team)	The nurse reviews symptoms requiring medical care, and which symptoms require activation of emergency services (ie, calling 911) versus calling the health care team, as outlined in the COG Family Handbook (Murphy, 2011). The nurse also reassures the parent that when they are unsure or uneasy about something, it is better to call than not to call.
	Who to call for help (contact information)	Parents must know how to contact the health care team including phone numbers for the clinic, during office hours, after hours, and holidays/weekends. If a paging system is used for initial contact with on-call personnel, instructions (and preferably, a demonstration) for use of the paging system should be provided.
	Follow-up appointments	Parent should be able to verbalize all follow-up appointments, including date, time, and location.
Treatment side effects	Treatment side effects to know before next appointment	Parents generally receive information about treatment-related side effects during the initial diagnostic discussion; however, the information may not be remembered prior to discharge. The nurse should review treatment-related side effects (such as nausea if the child received an emetogenic agent, or constipation if the child received a vinca alkaloid agent), so that parents understand important side effects to monitor for, appropriate home management, and when to call for help.
Prevention of infection	Handwashing	Every individual caring for the child should be able to describe the importance of handwashing and demonstrate appropriate handwashing technique.
	Preventing infection	Measures to prevent infection include hygiene, screening visitors, dental care, caring for animals, and vaccinations, as listed in the COG Family Handbook (Murphy, 2011). These topics should be discussed in the amount of detail warranted by the child and family’s individual circumstance.
	Varicella exposure	Parent describes what to do if their child is exposed to or has symptoms of varicella
	No rectal medications or exams	Parent is able to advocate for no rectal medications or exams for their child during cancer treatment
Care of the child	Temperature-taking	Parents should demonstrate how to take their child’s temperature. The nurse should ensure that the family has an appropriate working thermometer at home.
	Fever	Parent verbalizes the definition of fever and what to do if the child has a fever.
	Home care company (contact information and supplies)	If the child requires home care visits and/or supplies, the nurse ensures the parent has contact information for the home care company and understands the supplies being sent to the home and who will demonstrate use of the supplies.
Home medications	Home medication: Names and purpose	Parent verbalizes the name and purpose for each of the child’s home medications.
	Home medication: Dose and frequency	Parent verbalizes the dose and frequency for each of the child’s home medications.
	Home medication: Administration	Parent verbalizes (and demonstrates, when appropriate) the administration route for each of the child’s home medications.
	Home medication: Storage	Parent verbalizes a plan for safely storing of all medications in the home.
	Home medication: Prescriptions filled	Ideally prescriptions should be filled prior to discharge, so the nurse can review the actual medications with the parent. If prescriptions cannot be filled before discharge, then parent verbalizes where to obtain the medications and what to do if the pharmacy is unable to supply the medications on the same day.
	Chemotherapy safe-handling/item disposal	If the child is receiving chemotherapy at home, the parent verbalizes a plan to safely administer and dispose of the medication.
		If the child recently received chemotherapy inpatient and/or is receiving chemotherapy at home, the parent verbalizes a plan to safely handle the child’s emesis, urine, and stool.
Care of the child: For patients with external central lines only	Emergency care of central line	For children being discharged with an external central line, parent verbalizes emergency care of the line including issues outlined in the COG Family Handbook (Murphy, 2011).
	Demonstrate of central line flush	For children being discharged with an external central line, parent demonstrates how to flush the central line or verbalizes a plan if a health care provider will be flushing the line.
Care of the child: For patients with a CNS tumor only	Increased intracranial pressure, shunt malfunction, headache	For patients with CNS tumors, parent verbalizes what to do for symptoms of increased intracranial pressure, shunt malfunction, and headaches.
	Seizures	For patients with CNS tumors, parent understands what to do if the child has a seizure.
Care of the child: If applicable	Postop/wound care	If the child has a wound, care of the wound is taught to the parent, with return demonstration.
	Pain/pain management	If the child has pain, pain assessment and management is reviewed with the parent.
	Topical anesthesia for port	If the child has a port, the nurse discusses and demonstrates the use of topical anesthesia.

Table 6.

Secondary Topics Discussion.

Consensus category	Topic	Discussion points
Diagnosis/treatment	What is cancer?	Parent verbalizes basic understanding of cancer as outlined in the COG Family Handbook (Murphy, 2011).
	Chemotherapy overview	If applicable, parent verbalizes basic understanding of chemotherapy as outlined in the COG Family Handbook (Murphy, 2011), and on the child’s treatment plan (roadmap).
Accessing care	Introduction to the emergency department	Parent receives a tour and instructions on how to navigate through the emergency department (or how to access an emergency department closer to the child’s home, if applicable)
	Introduction to outpatient nurse and/or clinic tour	Parent receives a tour of the outpatient clinic and introduction to the clinic nurse(s)
Treatment side effects	Effects of cancer treatment on the bone marrow	Parent verbalizes a basic understanding of the effects of cancer treatment on the white blood cells (including absolute neutrophil count [ANC]), red blood cells, and platelets as outlined in the COG Family Handbook (Murphy, 2011)
	Effects of cancer treatment on the digestive system	Parent verbalizes a basic understanding of the effects of cancer treatment on the digestive system, as outlined in the COG Family Handbook (Murphy, 2011) and as applicable to their child
	Other side effects	Parent verbalizes a basic understanding of other potential side effects as applicable to their child
Care of the child	Nutrition	Nutrition encompasses a wide variety of topics including healthy diet, appetite changes, taste changes, and nutritional supplements as outlined in the COG Family Handbook (Murphy, 2011). Discussion should focus on a healthy diet and additional topics as warranted by the child’s condition and parent’s questions.
	Bathing and swimming precautions	If applicable, parent verbalizes bathing and/or swimming restrictions per institutional guidelines.
	Environmental precautions	Environment precautions are discussed with the parent and child as indicated for the child’s medical condition, such as cleaning the home and taking special precautions when outside or at school.
	Activity restrictions	If the child is restricted in any activities, the parent verbalizes the restrictions.
Home medications	Home medication: Side effects	Parent verbalizes the potential side effects of each of the child’s home medications.
Care of the child: For patients with external central line only	Care of central line dressing	For children with an external central line, parent verbalizes (and demonstrates, if applicable) how to care for the central line dressing including how to protect dressing during bathing.
	Demonstration of cap change	For children with an external central line, parent demonstrates how to change the central line cap.

Table 7.

Tertiary Topics Discussion.

Consensus category	Topic	Discussion points
Diagnosis/treatment	Tests and procedures	Parent verbalizes rationale and process for tests and procedures used during treatment of their child. Tests and procedures will be specific to the child’s diagnosis, treatment, and age.
Care of the child	Vaccinations	Parent verbalizes plan for vaccinations for their child with cancer and plan for vaccinations including flu shots for all members of the household.
	Websites for cancer-related information	Parent is directed to websites that are helpful for accurate cancer information.
	Sexual activity including precautions for pregnancy and sexually transmitted infections	When applicable, patients are instructed of sexual activity restrictions and precautions to prevent pregnancy and sexually transmitted infections.
	Risky behaviors (ie, smoking, alcohol consumption, tattoos, piercing)	When applicable, patients are provided rationale for restriction of smoking and alcohol consumption, and precautions or restrictions for tattoos and piercings.
Coping-life demands	Introduction to child life specialist	The nurse assures that the patient/family was introduced to the child life specialist. The nurse may not be present for the meeting; therefore, this topic may only require a final checkoff that is was completed.
	Talking with siblings about cancer	The nurses assures that a health care team member (ie, nurse, social worker, child life specialist) offers methods and topics to parents that can be used when talking to their other children about cancer.
	Coping skills	The nurse or other health care team member (ie, social worker, psychologist) discusses strategies to enhance coping, such as strategies listed in the COG Family Handbook (Murphy, 2011)
	Work absences	If applicable, the nurse assures that a social worker has met with the parent to discuss short or long-term work absences.
	Insurance issues	The nurse assures that a health care team member (ie, social worker, financial counselor) met with the parent to discuss insurance issues.
	Financial resources, including cancer organization referrals	The nurse assures that a social worker has met with the parent to discuss financial resources, including potential referrals to cancer organizations for financial support.

Discussion and Conclusions

This standardized education checklist is a practical tool developed by pediatric oncology nurses with expertise in patient/family education and is based on expert consensus recommendations, current evidence, and feedback from patient advocates. This checklist is designed to guide the education of parents of newly diagnosed pediatric oncology patients prior to the child’s initial hospital discharge. The checklist specifies primary topics that are essential to address prior to the initial hospital discharge in order that the parent has the information needed to safely care for the child at home, secondary topics that should be presented within the first month after the cancer diagnosis, and tertiary topics that should be addressed prior to completion of therapy.

Providing large amounts of information immediately after the child’s cancer diagnosis can be overwhelming to parents (Aburn & Gott, 2014; Rodgers, Laing, et al., 2016). Pacing of education is critical to enhance the parent’s ability to process information (Rodgers, Stegenga, et al., 2016). Teaching primary topics before the initial hospital discharge, and expanding to secondary topics if feasible, is a rational approach that can facilitate parental processing and retention of essential information, while minimizing informational overload. Furthermore, use of this checklist provides the nurse with a clear outline of educational topics to be presented prior to the initial hospital discharge, and those that can be safely deferred until the parent has had time to fully process and adjust to their child’s diagnosis.

Pediatric oncology nurses commonly tailor education to meet the needs of their patients and families. It may be necessary to customize topics within the checklist to enhance the applicability of the tool in addressing specific clinical scenarios. For example, the primary topic of “chemotherapy side effects to know before next appointment” requires the nurse to tailor the discussion to those side effects applicable to the patient’s treatment, while the secondary topic of “environmental precautions” requires that the discussion be tailored to the patient’s living/social situation (eg, home, school, community).

In addition to tailoring the checklist’s topics, nurses must determine learner preferences regarding language, teaching methods, and amount of information desired. These preferences should be identified early in the hospitalization/encounter and incorporated into the teaching plan in order to enhance parents’ ability to optimally process the information (Landier et al., 2016; Rodgers, Stegenga et al., 2016). The checklist provides space for identification of learner preferences regarding language and delivery methods for each topic.

It is important for nurses to remember that teaching can potentially occur with each patient encounter and not just during formal education sessions. Patients and parents are learning as care is provided, and nurses should be cognizant of these opportunities, such as teaching, demonstrating, and when possible, allowing parents to participate in care activities, such as preparing and administering medication that the child will be taking at home. These teachable moments should be embraced and documented, as many parents prefer to learn to care for their child through experiential situations (Burnham, Feeley, & Sherrard, 2013; Sullivan-Bolyai, Bova, Lee, & Johnson, 2012).

The standardized educational checklist described herein is designed to facilitate implementation of the expert consensus recommendations (Landier et al., 2016) for the provision of patient/family education to parents of newly diagnosed pediatric oncology patients across institutions affiliated with the Children’s Oncology Group, and can be used wherever newly diagnosed pediatric oncology patients are treated. Standardizing the process of providing patient/family education will set the stage for future studies focused on identifying the most effective teaching and learning strategies in order to optimize the educational process for parents of children newly diagnosed with cancer.

Author Biographies

Cheryl Rodgers, PhD, RN, CPNP, CPON®, is an associate professor at Duke University School of Nursing in Durham, NC. She is the Chair of the Children’s Oncology Group Nursing Discipline Evidence-Based Practice Subcommittee.

Vanessa Bertini, MSN, RN, CPN, CPON®, is a clinical practice and education specialist at the Children’s Hospital of the King’s Daughters in Norfolk, VA.

Mary Ashe Conway, MSN, RN, CPHON®, is a clinical nurse specialist at the Connecticut Children’s Medical Center in Hartford, CT.

Ashley Crosty, RN, is an outpatient clinic nurse at Stollery Children’s Hospital in Alberta, Canada.

Angela Filice, BScN, BA, RN, is a registered nurse at McMaster Children’s Hospital in Ontario, Canada.

Ruth Anne Herring, MSN, RN, CPNP-AC/PC, CPHON®, is a pediatric nurse practitioner at Children’s Health in Dallas, TX.

Julie Isbell, MSN, RN, CPON®, is a clinical educator and patient navigator at the Children’s Hospital at TriStar Centennial in Nashville, TN.

E. Anne Lown, DrPH, is an assistant adjunct professor in Social and Behavioral Sciences in the School of Nursing at the University of California, San Francisco, CA. She has been a patient advocate in Children’s Oncology Group since 2008.

Kristina Miller, DNP, RN, PCNS-BC, CNE, is an assistant professor at the University of South Alabama College of Nursing in Mobile, AL.

Margaret Perry, BSN, RN, CPHON®, CPN, is a professional practice specialist at Children’s National Medical Center in Washington, D.C.

Paula Sanborn, BSN, RN, CPHON®, CPN, is a sarcoma nurse navigator at Nationwide Children’s Hospital in Columbus, OH.

Nicole Spreen, BScN, RN, is an assistant head nurse at Stollery Children’s Hospital in Alberta, Canada.

Nancy Tena, MSN, RN, CNS-BC, CPHON®, BMTCN®, is a clinical nurse specialist at C.S. Mott Children’s Hospital in Ann Arbor, MI.

Cindi Winkle, BSN, RN, is a patient/family educator at Children’s Health in Dallas, TX.

Joan Darling, PhD, is a parent of a 20 year survivor of rhabdomyosarcoma. Formerly a Children’s Oncology Group patient advocate, she is now on the board of the Sarcoma Alliance.

Abigail Slaven, RN, CPHON®, is an assistant nurse manager at Cohen Children’s Medical Center Northwell Health in New Hyde Park, NY.

Jeneane Sullivan, MSN, RN, CPON®, is an oncology patient/family education specialist at the Children’s Hospital of Philadelphia in Philadelphia, PA. She is a Member-at-large within the Children’s Oncology Group Nursing Discipline Committee.

Kathryn M. Tomlinson, BSN, RN, is a clinical research nurse at the Children’s Hospital of Wisconsin in Milwaukee, WI. She is a Member-at-large within the Children’s Oncology Group Nursing Discipline Committee.

Kate Windt, BSN, RN, CPHON®, is a clinical nurse at Rady Children’s Hospital in San Diego, CA.

Marilyn Hockenberry, PhD, RN, PPCNP-BC, FAAN, is the associate dean for research affairs and the Bessie Baker distinguished professor of nursing at Duke University School of Nursing in Durham, NC. She is the Chair of the Children’s Oncology Group Nursing Discipline Research Subcommittee and Vice Chair of the Children’s Oncology Group Nursing Discipline Committee.

Wendy Landier, PhD, RN, CPNP, CPON®, FAAN, is an associate professor in the Schools of Medicine and Nursing at the University of Alabama at Birmingham in Birmingham, AL. She is Chair of the Children’s Oncology Group Nursing Discipline Committee.