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Jeneane Sullivan MSN, RN, CPON

Avoiding Information Overload:

What do Families Actually Need to Know?

Agenda

• Exercise

• Patient and Family Education Role

• Background

• Summary of Evidence

• New Resources

• Putting Evidence into Practice

• Questions/Discussion

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• 500 newly diagnosed patients per year

• Main Hospital is located in Philadelphia, PA

• Outpatient clinics in Philadelphia, suburban NJ, and PA

• Care for patients locally, expanded region (NJ, NY, DE), across the country, and throughout the world

Cancer Center at Children’s Hospital of Philadelphia (CHOP)

CHOP Oncology Patient and Family Education (PFE) Specialist

CHOP Oncology Patient and Family Education (PFE) Specialist

• Timing is key!

• One family per class = individualized education

• Inpatient & Outpatient Oncology RNs with Psychosocial team

• Education Room

• iPad for bedside teaching

• Consideration of learning needsLanguageLiteracyCustom education tools

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Patient

Medical Team

Psycho-social team

Nursing

Family

CHOP Onco Class: Early Days

2013 2015 2016

Background

2018

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Summary of Evidence:

Family centered

education

Diagnosis is overwhelming for the family

PFE occurs across the continuum

of care

Quality of teaching

determines family

readiness

Supportive environment

optimizes learning

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Summary of Evidence:

InterprofessionalResponsibility

Standard Content, Individualized Methods

Initial focus is on essential skills

Health care professionals should receive training

Consistent messaging across disciplines

Assess family readiness to care for child at home

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Summary of Evidence:

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Summary of Evidence:

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Summary of Evidence:

JOPON July/Aug 2018

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Cheryl C. RodgersPHD, RN, CPNP, CPON

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Standardized Education Checklist

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

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Not all information can or should be delivered during initial hospitalization

Pacing of information delivery must be individualized based on: ♦ Length of hospitalization

♦ Topics necessary for safe care of child at home

♦ Learning needs/style of family

Topics categorized as:♦ Primary

♦ Secondary

♦ Tertiary

Standardized Education Checklist

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Supplement to the Family Handbook

Teaching tool focused on essential topics for newly diagnosed patients and families

After diagnosis and before first discharge home from the hospital or clinic

COG New Diagnosis Guide

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Input and review of

New Diagnosis Guide

content provided by:

♦ Dr. Peter Adamson, Group Chair

♦ Nursing Steering Committee

♦ Hematology/Oncology Committee

♦ Patient Advocacy Committee

♦ Behavioral Science Committee

COG New Diagnosis Guide

Case Study:

Initial Hospitalization• 2 year old male

• 1 week prior to admission parents noted:

• Increased irritability, fatigue, low grade fevers, decrease in appetite and heavier breathing

• Pediatrician -> Emergency Dept -> Inpatient Onco Unit

• Port placed

• Topotecan/Cyclophosphamide

• Neulasta

• Discharged on Day 7 of hospitalization

Case Study:

Initial Hospitalization

• Father and maternal grandparents are caregivers primarily at the bedside

• Mother is home caring for1 month old twin siblings

• Family lives > 1 hour from hospital

• Father is doing his best to continue to work from the hospital

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Background

(c

© Journal of Pediatric Oncology Nursing, 2018 J Pediatr Oncol Nur 2018 35(4):235-246

Survey Poll

What topics should be taught before 1st discharge home from the hospital

or clinic after receiving cancer therapy?

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Primary Topics

Diagnosis/Treatment Plan

Immediate psychosocial needs

Diagnosis (know how to convey in emergency)

When to call for help

Who to call for help

Fever/Temperature-taking

Handwashing/Preventing infections

Treatment side effects to know before next appt

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Primary Topics

Home medications♦ Name/purpose

♦ Dose/frequency

♦ Administration

♦ Storage

♦ Prescriptions filled (or plan for picking them up)

Home care company (contact info/supplies)

Chemotherapy safe-handling/item disposal

Follow-up appointments

Port ♦ Topical anesthesia

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Primary Topics (If Applicable)

External central line:♦ Emergency care of central line

♦ Demonstration of central line flushing

CNS tumor:♦ Symptoms of increased ICP/shunt malfunction

Post-op/wound care

Pain/pain management

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Treatment Overview Handout

About Cancer and its Treatment

Central Lines

When to Call

Visiting the ER

Fever

Managing Symptoms

Preventing Infections

Precautions During Treatment

Giving Medicines

New Diagnosis Guide: Content

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New Diagnosis Guide: New Content

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Standardized template

Diagnosis

Treatment Plan

Concise, accurate, consistent message

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Treatment Overview

How to contact the team

In an emergency or otherwise

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Precautions During Treatment♦ Chemotherapy Safety

♦ Precautions for Patients with Brain Tumors/Shunts

♦ Postoperative/Wound Care

Giving Medicines♦ Before you go home:

• Information to know about each medicine

• How to give medicine

♦ After you go home:• Bringing medicine to clinic, hospital, ER

• Notify team when supply of medicine is running low

• Medicine storage safety

New Diagnosis Guide: New Content

Case Study: 1st month

• Port accessing

• Counts drop requiring blood and platelet transfusions

• Weight loss

• Constipation

• Medications are a struggle

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Secondary Topics

What is cancer?

Chemotherapy overview

Introduction to the Emergency Department

Introduction to the clinic and

Effects of cancer treatment on the:♦ Bone marrow♦ Digestive system♦ Other side effects

Varicella exposure

Nutrition

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Secondary Topics

Bathing and swimming precautions

Environmental precautions

Activity restrictions

No rectal medications or exams

Home medications: Side effects

External central line (if applicable):

♦ Care of the central line dressing

♦ Demonstration of cap change

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Tertiary Topics

Tests and procedures

Vaccinations

Websites for cancer-related information

Sexual activity (precautions re: pregnancy and STIs)

Risky behaviors

Introduction to the child life specialist

Talking with child and siblings about cancer

Coping skills

Work and school absences

Insurance issues

Financial resources, including cancer organization referrals

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Details available in JOPON article

JOPON

July/Aug

2018

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Background

© Journal of Pediatric Oncology Nursing, 2018 J Pediatr Oncol Nur 2018 35(4):235-246

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New Diagnosis Guide: Access

View online♦ Low resolution files that

open quickly

Print your own♦ High resolution, professional

print files

Order Family Handbook online♦ Included in your Family

Handbook order

Available in English, Spanish, and French

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Cost and Copyright

Is there a cost?

No! The Family Handbook and New Diagnosis Guide

are provided to COG institutions at no cost through the

generosity of the St. Baldrick’s Foundation

What about copyright?

The COG Family Handbook and New Diagnosis Guide

are copyrighted by the Children’s Oncology Group.

Modification of content is prohibited, including deleting,

editing, or adding to the text.

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Putting Evidence Into Practice

• Stand Alone Resource

• Embedded in the Family Handbook

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Less is More!

Two new COG resources that can:

♦ Enhance your practice

♦ Improve the patient and family experience

♦ Keep patients safe

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Putting Evidence Into Practice

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Discharge Medication Counseling

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Clinic Tour and Videos

Buerger Center

King of Prussia

Voorhees, NJ

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Follow Up Phone Call

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Continued EducationDisease/Treatment/Population Specific

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Continued Education Disease/Treatment/Population Specific

empowering“ When you’re building on skills, you’re

me to be a better partner for you.”

• Haugen, M. S., Landier, W., Mandrell, B. N., Sullivan, J., Schwartz, C., Skeens, M. A., & Hockenberry, M. (2016). Educating Families of Children Newly Diagnosed With Cancer. J Pediatr Oncol Nurs, 33(6), 405-413.

• Hockenberry, M., & Landier, W. (2017). Patient/Family Education as Translational Science in Pediatric Oncology. J Pediatr Oncol Nurs, 34(3), 155.

• Landier, W., Ahern, J., Barakat, L. P., Bhatia, S., Bingen, K. M., Bondurant, P. G., . . . Hockenberry, M. (2016). Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients. J Pediatr Oncol Nurs, 33(6), 422-431.

• Landier, W., Leonard, M., & Ruccione, K. S. (2013). Children's Oncology Group's 2013 blueprint for research: nursing discipline. Pediatr Blood Cancer, 60(6), 1031-1036.

• Rodgers, C. C., Laing, C. M., Herring, R. A., Tena, N., Leonardelli, A., Hockenberry, M., & Hendricks-Ferguson, V. (2016). Understanding Effective Delivery of Patient and Family Education in Pediatric Oncology: A Systematic Review From the Children's Oncology Group. J Pediatr Oncol Nurs, 33(6), 432-446.

• Rodgers, C. C., Stegenga, K., Withycombe, J. S., Sachse, K., & Kelly, K. P. (2016). Processing Information After a Child's Cancer Diagnosis-How Parents Learn. J Pediatr Oncol Nurs, 33(6), 447-459.

• Withycombe, J. S., Andam-Mejia, R., Dwyer, A., Slaven, A., Windt, K., & Landier, W. (2016). A Comprehensive Survey of Institutional Patient/Family Educational Practices for Newly Diagnosed Pediatric Oncology Patients. J Pediatr Oncol Nurs, 33(6), 414-421.

• Rodgers, C.C., Bertini, V., Conway, M.A., et al. A Standardized Education Checklist for Parents of Children Newly Diagnosed With Cancer: A Report From the Children’s Oncology Group. Journal of pediatric oncology nursing: official journal of the Association of Pediatric Oncology Nurses. 2018;35(4):235-246.

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References

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Questions?