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Psychosocial Support and Research Program-Educational Materials

The Pediatric Oncology Branch has produced a number of educational and therapeutic materials to help the children we serve learn about their condition and cope with the challenges they might face as a result of their illness. If you are interested in any of these resources, contact Lori Wiener, Ph.D., at wienerl@mail.nih.gov.

Pediatric Oncology: A Tour for New Patients

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Educational and Therapeutic Materials

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Voicing my CHOiCES

Voicing My CHOiCES

Voicing My CHOiCES is the first advance care planning guide for adolescents and young adults based on research conducted at the NIH.

 

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This Is My World

This Is My World

This workbook was designed as a psychotherapeutic tool for therapists to use when working with children and adolescents who have been diagnosed with a chronic or potentially life threatening illness. The pages within the workbook contain writing, drawing, crossword puzzles, and other fun activities that address items such as family, friends, favorite activities, coping, and loss. Children and their families enjoy going back years later to read what they had written about their journey of living with their illness. View/download PDF.

 

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ShopTalk

ShopTalk

ShopTalk is a therapeutic game designed for children living with cancer or another serious illness. It was created by Drs. Cindy Mamalian  (an artist and psychologist) and Lori Wiener to help therapists lead conversations with pediatric patients about difficult emotional issues related to the illness that has affected their lives (ages 7 to 16 years). ShopTalk players visit 10 different “shops” around the board, choosing one of 6 “gifts” from each store to place in their individual shopping bag when they choose to answer the question. The shops are named according to different themes: The Ball’s in Your Court sports store, for example, allows players to explore how they would respond to various social scenarios during treatment. ShopTalk is available in three versions, one for pediatric cancer patients, one for their siblings, and one for children whose parent have cancer. All questions in both versions of the game are written in Spanish as well as in English. Therapists who are interested in obtaining a copy of the game should contact Dr. Wiener directly at wienerl@mail.nih.gov.

 

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Child & Teen Wellness Tool Kit

Child & Teen Wellness Tool Kit, a Guide for Caregivers
 

A guide for caregivers that provides tools to help their children cope, calm, and thrive.

 

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RUNX-101: An Adolescent's guide to understanding and communicating about RUNX1-Familial Platelet Disorder (FPD)

RUNX-101: An Adolescent's Guide to Understanding and Communicating RUNX1-Familial Platelet Disorder (FPD)

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Paving the Road: A RUNX1 Communication Guide for Parents

Paving the Road: A RUNX1 Communication Guide for Parents:
 

A guide for parents to communicate RUNX1 to their children.

 

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Medicine & Your Child: The Physical and Emotional Aspects of Medication Management

Medicine & Your Child:  The Physical and Emotional Aspects of Medication Management

A guide for parents on medication management. View/download PDF.

 

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Katie Finds Her Courage

Katie Finds Her Courage

This book was written for families who have a child with neurofibromatosis type 1 (NF1). It tells the story of a child who is learning about having NF1 in words that children can understand and then finds the courage to share the information with her class. The book has activities for the child to engage in, a glossary of terms, and tips for teachers. View/download PDF.

 

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Brothers & Sisters Together

Brothers & Sisters Together

This is a therapeutic workbook designed for the brothers and sisters of pediatric patients being treated for a serious illness.  Each page covers a different topic, and many pages contain quotes and sayings written by other brothers and sisters, interactive activities and tips for reaching out for help or books to read. View/download PDF.

 

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Hermanos y Hermanas Juntos

Hermanos y Hermanas Juntos

Un cuaderno de ejercicios para hermanos de chicos enfermos. View/download PDF.

 

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Being a Stem Cell Donor

Being a Stem Cell Donor

This booklet was designed to help prepare sibling donors for the stem cell donation. It explains the transplant procedure, donation/collection process and allows them to express their concerns and questions through a daily diary. The booklet also contains a word search game, glossary of terms, and a listing of national resources. View/download PDF.

 

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When A Cure Is No Longer Possible for Your Child:  A Guide for Parents and Caregivers

When A Cure Is No Longer Possible for Your Child:  A Guide for Parents and Caregivers

Parents never want to think that the day will come when their child will no longer be with them. Yet, when a child is very ill, parents often think about what they will do or what they should be considering as their child becomes more ill. This booklet was written as a guide to help parents as they begin to make plans and informed decisions when end-of-life may be near or at the time of their child’s death.  View/download PDF.

 

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Cuando ya no hay posibilidad de cura para su nino:  Un guia para padres y cuidadores

Cuando ya no hay posibilidad de cura para su niño: Un guía para padres y cuidadores

Los padres nunca quieren pensar que llegará el día cuando su niño ya no estará con ellos. Sin embargo, cuando un niño está muy enfermo, muchas veces los padres piensan qué harán o qué deberían estar considerando a medida que su niño se enferma más y más. Este manual está diseñado como guía para ayudarle a medida que empieza a pensar acerca de qué podría pasar a continuación. Brinda información que puede ayudar a orientarle a medida que empieza a realizar planes y decisiones informadas acerca de cuándo podría estar el final de la vida o al momento de la muerte de su niño. View/download PDF.

 

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Children with Cancer:  A Guide for Parents

Children with Cancer:  A Guide for Parents

This guide is for parents who have a child with cancer. It has information about childhood cancer, together with tips to help you and your family to cope during this challenging time. Visit Children with Cancer:  A Guide for Parents.

 

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The Gift of Gerbert's Feathers

The Gift of Gerbert's Feathers

For children living with a serious illness or for those worried about someone with a serious illness, storybooks can be a starting point for discussion, a safe way to ask questions, express concerns or worries about the character, or talk about their own feelings or experiences. The Gift of Gerbert's Feathers is a picture book that provides families with an opportunity to explore how a child and his family navigate feelings around serious illness and death.

 

Pediatric Psycho-Oncology Resources

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Psychosocial Considerations for Children and Adolescents Living with Rare Diseases - Book Cover

Psychosocial Considerations for Children and Adolescents Living with Rare Diseases

This book includes an editorial and 13 peer-reviewed papers that reflect on the psychosocial needs of children living with rare diseases and of their families.

 

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Quick Reference for Pediatric Oncology Clinicians:  The Psychiatric and Psychological Dimensions of Pediatric Cancer Symptom Management

Quick Reference for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Pediatric Cancer Symptom Management

This is the first pocket-size handbook covering basic principles of pediatric psychosocial oncology. Fifty-four contributing authors representing 29 institutions contributed chapters to this publication, which offers access to expert advice on the psychiatric, psychological, social and spiritual issues related to pediatric cancer treatment and survivorship. For more information on this book and others, visit Oxford University Press.

 

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Pediatric Psychosocial Oncology:  Textbook for Multidisciplinary Care

Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care

This textbook walks clinicians through the psychosocial issues and challenges faced by children and adolescents with cancer and their families. Through a developmental lens, the text provides guidance and resources that will enable clinicians to understand the physical and emotional impact of the disease from diagnosis onwards, to work with families in distress, and to diagnose and treat a range of behavioral, psychological, and psychiatric issues. 

 

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Standards for Psychosocial Care for Children With Cancer and Their Families

Standards for Psychosocial Care for Children With Cancer and Their Families

This special issue of Pediatric Blood & Cancer provides standards for psychosocial care for children with cancer and their families.