City of Hope Pain & Palliative Care Resource Center

IV.   Special Populations
        C.   Pediatrics

This section includes patient and family educational books and pamphlets as well as policy statements from professional organizations on pediatric pain management.  Bibliographies on neonates and pediatric reference
lists and resources are also included.  Additional assessment tools for pediatrics can be found under the Research Instruments section.

       City of Hope Publications

1.      Harrington Jacobs, H., Ferrell, B.R., Virani, R., & Malloy, P. (2009). Appraisal of the pediatric end-of-life nursing education consortium training program. Journal of Pediatric Nursing, 24(3), 216-221.

2.      Malloy, P., Ferrell, B. R., Virani, R., Wilson, K., & Uman, G. (2006). Palliative care education for pediatric nurses. Journal of Pediatric Nursing, 32(6), 555-561.

3.      Ferrell, B. R., Rhiner, M., Shapiro, B., & Dierkes, M. (1994). The experience of pediatric cancer pain. Part I: Impact of pain on the family.  Journal of Pediatric Nursing, 9(6), 368-379.

4.      Rhiner, M., Ferrell, B. R., Shapiro, B., & Dierkes, M. (1994). The experience of pediatric cancer pain. Part II: Management of pain.  Journal of Pediatric Nursing, 9(6), 380-387.  

5.      Ferrell, B. R., Rhiner, M., Shapiro, B., & Strause, L. (1994). The family experience of cancer pain management in children.  Cancer Practice, 11/12(2), 441-446.

6.      Shapiro, B. S., & Ferrell, B. R. (1992). Pain in children and the frail elderly: Similarities and implications.  APS Bulletin – American Pain Society, Oct/Nov, 11-13.

         
      Recommended Publications

1.       Hospice Care For Children, 3^rd Edition
           -       Armstrong-Dailey, A., & Zarbock, S. (2008).  NY: Oxford University Press. ISBN #: 0195340701.Home Care for Seriously Ill

2.       Home Care for Seriously Ill Children: A Manual for Parents
          -         Orloff, S., & Huff, S. (2007). VA: Children’s Hospice International.                

3.       Pediatric Oncology Nursing: Scope & Standards of Practice
          -       Nelson, M. B., Forte, K., Freiburg, D., Hooke, M. C., Patterson, K., & O'Neill, J. B. (2007). IL: Association of Pediatric
                  Hematology/Oncology Nurses (APHON). ISBN #: 0966619307.

4.       Children: A Manual for Parents
           -      Orloff, S., & Huff, S.  (2007).  VA: Children’s Hospice International. ISBN #: 0932321046.

5.       Tear Soup: A Recipe for Healing After Loss
          -       Schweibert, P., & DeKlyen, C. (2005).  OR: Grief Watch. ISBN #: 0961519762.  (Also available in Video & DVD)

6.       Children with Cancer: The Quality of Life
          -       Eiser, C. (2004). NJ: Lawrence Erlbaum Associates, Inc.  ISBN #: 080583544.               

7.       Essentials of Pediatric Oncology Nursing: A Core Curriculum (2^nd Edition)
          -       Kline, N. E. (2004). IL: Association of Pediatric Nurses. ISBN #: 0966619382.

8.       When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
           -      Field, M., & Behrman, R. (2003).  DC: The National Academies Press. ISBN #: 0309090768.

9.       Hannah’s Gift: Lessons from a Life Fully Lived     
          -           Housden, M. (2003).  NY: Bantam. ISBN #: 0553381229.

10.     Nursing Care of Children & Adolescents with Cancer, 3^rd Edition
          -       Association of Pediatric Oncology Nurses (APON). (2002). Saunders. ISBN #: 0721687180.

11.    Shelter from the Storm - Caring for a Child wtih A Life-threatining Condition
          -       Hilden, J., Tobin, D., & Lindsay, K. (2002).  CO: Perseus Book Group. ISBN #: 0738205346.  

12.    When Children Grieve: For Adults to Help Children Deal with Death, Divorce, Pet Loss, Moving, and Other Losses
          -           James, J., Friedman, R., & Matthews, L. L. (2002).  NY: Perennial. ISBN #: 0060084294.      

13.     Living with Childhood Cancer: A Practical Guide to Help Families Cope
  -        Woznick, L. A. & Goodheart, C. D. (2001).  DC: American Psychological Association.  ISBN #: 1557988722.

14.     Healing Children’s Grief: Surviving a Parent’s Death from Cancer
          -          Christ, G. (2000).  UK: Oxford University Press. ISBN #: 0195105915.

15.    Living with Grief: Children, Adolescents, & Loss
          -          Doka, K. (2000).  DC: Hospice Foundation of America. ISBN #: 1893349012.

16.    Guiding Your Child Through Grief
          -         Emswiler, J., & Emswiler, M.A. (2000).  NY: Bantam. ISBN #: 0553380257.

17.     Life & Loss: A Guide to Help Grieving Children, 2^nd Edition
          -          Goldman, L. (2000).   NY: Taylor & Francis Group. ISBN #: 1559590521.

18.     When a Baby Dies: A Handbook for Healing & Helping
          -      Limbo, R., Rich Wheeler, S., & Hessel, S. (1998).  WI: Lutheran Hospital – La Crosse.  ISBN #: 0960709843.         

19.    Herr, K., Coyne, P., Manworren, R., McCaffery, M., Merkel, S., Pelosi-Kelly, J. & Wild, L. (2006).  Pain Assessment in the Nonverbal Patient: Position Statement with Clinical Practice Recommendations. Pain Management Nursing, 7(2), 44-52.

       
      Educational Materials/Curriculum

1.       APON’s Foundations of Pediatric Hematology/Oncology Nursing: A Comprehensive Orientation & Review Course
          -          This course is designed to provide participants with an overview of nursing issues involved in caring for children and adolescents with cancer and blood diseases.  A course evaluation form and posttest are provided to assist in measuring the effectiveness of the program.

       Guidelines/Clinical Pathways

1.      CRIES Tool - Judy Bildner, University Hospital & Clinics, Children’s Hospital, Columbia, MO
         -      Behavioral assessment tool for pain in neonates.  Includes self-learning module and documentation forms.

2.      Cancer Pain Relief and Palliative Care in Children
         -      World Health Organization (WHO) guidelines on the management of pain in children.  Available in English, Spanish, and French.      

3.      FLACC Scale (Face, Legs, Activity, Cry, Consolability) - CS Mott Children’s Hospital, University of Michigan Medical Center
         -        Behavior assessment scale for use in non-verbal children or others unable to provide reports of pain.  Reliability and validity information provided.  

4.      Neonatal Pain, Agitation, & Sedation Scale (N-PASS) - Hummel & Puchalski
        -       The N-PASS is a valid and reliable clinical pain/agitation and sedation tool for neonates. Nurses find the N-PASS easy to use clinically, facilitating documentation and management of pain and sedation.

5.     Pediatric Cancer Pain – Clinical Practice Guidelines in Oncology – National Comprehensive Cancer Network (NCCN)
         -        The NCCN, an alliance of 19 of the worlds leading cancer centers, develops, evaluates, and disseminates practice guidelines to support health professionals and patients in making informed treatment decisions.

6.      Pediatric Clinical Practice Guidelines & Policies Book/CD Set, 6^th Edition - American Academy of Pediatrics
         -      Have the latest clinical practice guidelines and policies at your fingertips with both the book and the easy-search CD-ROM.

7.      Pediatric Nurses’ Knowledge and Attitudes Survey Regarding Pain –  © Manworren
          -     Instrument to access pediatric nurses’ knowledge and attitudes regarding pain in children. Answer key also provided.

8.      Pediatric Nurses’ Knowledge and Attitudes Survey – © Manworren and Shriners Hospitals for Children, Version 2002
         -      Modified Pediatric Nurses Knowledge and Attitudes Survey (PNKAS) regarding pediatric pain in burns, orthopedics and spinal cord injuries.  Answer key also provided.

9.      Paediatric Pain Profile - Institute of Child Health, University College, London and Royal College of Nursing Institute
         -      The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments.

10     Wong-Baker FACES Pain Rating Scale                       

     
     Key References

1.     Neonate Bibliography 

2.     Pediatric Art Therapy
        Art Therapy Program - Children's Hospital of Western Ontario, CAN
        -   For the past 25 years, the Art Therapy Program at the Children's Hospital of Western Ontario (CHWO) at London Health Sciences Centre has been using art therapy to provide psychosocial support to pediatric cancer patients.
        Artists Helping Children - National Heritage Foundation
         -    Art therapy aids the healing process for sick children.
        Children's Cancer Centre Art Therapy Program - Royal Children's Hospital, Melbourne, AUS   
        -     Art Therapy is a process where children are encouraged to use a variety of art media to express and communicate what they are thinking or feeling particularly in relation to their illness, treatment and hospitalization.
        Expressive Therapy - Comer Children's Hospital, Chicago, IL
        -    Art therapy is one way to help young patients cope with their hospital stay while helping to maintain their regular routines.  
    
      
     Position Statements/Standards

1.      American Academy of Pediatrics (AAP) Position Statements
         -   Assessment and Management of Acute Pain in Infants, Children, and Adolescents
Acute pain is one of the most common adverse stimuli experienced by children, occurring as a result of injury, illness, and necessary medical procedures.      
          -        Circumcision Policy Statement 
Policy Statement regarding giving a child procedural analgesia (EMLA cream) before performing a circumcision procedure.
          -     Health Supervision for Children with Sickle Cell Disease
Timely and appropriate treatment of SCD is critical, because life-threatening complications develop rapidly. It is essential that every child with SCD receive comprehensive care that is coordinated through a medical home with appropriate expertise.
          -     Palliative Care for Children
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition.
          -        Prevention and Management of Pain in the Neonate: An Update
The objectives of this statement are to increase awareness that neonates experience pain; provide a physiological basis for neonatal pain and stress assessment and management by health care professionals; make recommendations for reduced exposure of the neonate to noxious stimuli and to minimize associated adverse outcomes; and recommend effective and safe interventions that relieve pain and stress.           

2.     The American Academy of Pediatrics (AAP) and the American Pain Society (APS)
         -    The Assessment and Management of Acute Pain in Infants, Children, and Adolescents -   joint issue statement to underscore the responsibility of pediatricians to take a leadership and advocacy role to ensure humane and competent treatment of pain and suffering in all infants, children, and adolescents.         

3.      American College of Emergency Physicians (ACEP) Policy Statements
         -     Pediatric Analgesia and Sedation 
                -     Care of Children in the Emergency Department: Guidelines for Preparedness
            -    The Use of Pediatric Sedation and Analgesia                       

4.     American Pain Society
         -     Pediatric Chronic Pain  - This position statement is the result of a special committee formed of experts in pediatric pain management. It addresses issues pertinent to pediatric chronic pain such as the definition of chronic pain, assessment, treatment, education issues, research, policy implications, along with references. 

 
                                     (Also see materials in Pain Assessment and Other Resources)