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VI. Education
     B. Patient and Family Education

This section includes educational kits and books, instructional guides and videos and health information sheets on various procedures.

  City of Hope Publications

  1. Borneman, T., Sun, V., Williams, A.C., Fujinami, R., Del Ferraro, C., Burhenn, P., Irish, T., Zachariah, F., van Zyl, C., Buga, S. (2015). Support for Patients and Family Caregivers in Lung Cancer: Educational Components of an Interdisciplinary Palliative Care Intervention. Journal of Hospice & Palliative Nursing, 17(4), 309-318.
     DOI
    : 10.1097/njh.0000000000000165

  2. Matzo, M., Graham, C., Troup, C. L., & Ferrell, B. (2014). Development of a patient education resource for women with gynecologic cancers: Cancer treatment and sexual health. Clinical Journal of Oncology Nursing, 18(3), 343-348.
     
  3. Borneman, T., Koczywas, M., Sun, V., Piper, B., Smith-Idell, C., Laroya, B., Uman, G., & Ferrell, B. R. (2011). Effectiveness of a clinical intervention to eliminate barriers to pain and fatigue management in oncology. Journal of Palliative Medicine, 14(2), 197-205. DOI: 10.1089/jpm.2010.0268.
     
  4. Evans, C., Chiou, C., Fitzgerald, K., Evans, W., Ferrell, B. R., Dale, W., Fried, l., Gandra, S., Denee-Sommers, B., & Patrick, D. (2011). Development of a new patient-reported outcome measure in sarcopenia. Journal of American Medical Directors Association, 12, 226-233. DOI: 10.1016/j.jamda.2010.09.010.
     
  5. Borneman, T., Koczywas, M., Chih-Yi Sun, V., Piper, B. F., Uman, G., & Ferrell, B. R. (2010). Reducing patient barriers to pain and fatigue management. Journal of Pain and Symptom Management, 39(3), 486.501. 
    DOI: 
    10.1016/j.jpainsymman.2009.08.007.
     
  6. O’Mara, A., Germain, D., Ferrell, B. R., & Borneman, T. (2009). Challenges to and lessons learned from conducting palliative care research. Journal of Pain and Symptom Management,  37(3), 387-394. 
    DOI: 10.1016/j.jpainsymman2008.03.014.
     
  7. Piper, B., Borneman, T., Sun, V., Koczywas. M., Uman, G., Ferrell, B. R., & James. R. (2008). Cancer-related fatigue (CRF): Role of oncology nurses in translating assessment guidelines into practice. Clinical Journal of Oncology Nursing, 12(5 Suppl), 37-47.  DOI: 10.1188/08.CJON.S2.37-47.
     
  8. Muñoz, C., Juarez, G., Muñoz, M. L., Portnow, J., Fineman, I., Badie, B., Mamelak, A., & Ferrell, B. R. (2008). The quality of life of patients with malignant gliomas and their caregivers. Social Work in Health Care, 47(4), 455-478.
    DOI: 10.1080/00981380802232396.


   Recommended Publications

  1. Butcher, L. (2013). New social media site for cancer patients. Oncology Times, 35(18), 12.                                     
    DOI: 10.1097/01.COT.0000435398.65946.0b
     
  2. Handbook of Health Social Work, 2nd Edition
    Gehlert, S. & Arthur Browne, T. (2011). NJ: John Wiley and Sons.
    ISBN #: 9780470643655.
     
  3. Everything Nobody Tells You About Cancer Treatment and Your Sex Life from A to Z
    University of Oklahoma College of Nursing. (2011). 
     
     
  4. The Merck Manual of Medical Information for Patients and Caregivers, Second Home Edition Online Version
    Beers, M. H. (2009).  PA: Merck Publishing. 
    ISBN #: 0911910352. 
     
               
     
  5. Family Carers in Palliative Care: A Guide for Health and Social Care Professionals
    Hudson, P. & Payne, S. (2009). NY: Oxford University Press.  ISBN #: 0199216908.
     
  6. The Chronic Pain Solution: Your Personal Path to Pain Relief  (Kindle Edition)
    Dilliard, J. N., & Hirschman, L. A. (2008).  CAN: Random House.  
    ASIN #: B001NJUOEO. 

  Educational Materials/Curriculum

  1. A Helping Handbook: When a Loved One is Critically Ill - Stephanie Waxman 
    This 48 page Helping Handbook
     
    is a safe place to put private thoughts, to be inspired by poetry, to be reminded that we are not the first ones to encounter conflicting feelings at a time of illness.      
     
  2. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs
    Psychosocial health care addresses the emotional challenges that can accompany a serious illness as well as the life challenges that can prevent good healthcare and patient's ability to take care of themselves.  Read the book online, free.
     
  3. Cancer Pain Education for Patients and the Public (CPEPP)
    City of Hope investigators (Betty Ferrell, Marcia Grant, and Gloria Juarez) conducted an education project funded by the National Cancer Institute to address the multiple opportunities for cancer pain education and to provide resources for successful implementation.  The project materials include outlines, Power Point presentations, handouts and a comprehensive bibliography for each module.  An article summarizing this project was published in the Journal of Pain and Symptom Management, 2002, 23(3), 7-8, which provides further detail regarding the training program.
             
    Module I - Pain Management for Individual Patient Education
                                          Handouts, Outline, and Slides
    Module II - Cultural Considerations in Patient and Public Education
                                            Handouts, Outline, and Slides
    Module III - Pain Education provided through group settings
                                             Handouts, Outline, and Slides
    Module IV - Public Education for Pain Management
                                               Handouts, Outline, and Slides
    Module V - Telephone Education
                                              Handouts, Outline, and Slides
    Module VI - The JCAHO Imperative; Improved Pain Management
                                                Handouts, Outline, and Slides
    Module VII - Professional Education as a Prerequisite to Patient Education; Involving
    Colleagues in Pain Education
                                                 Handouts, Outline, and Slides
    Module VIII - Overcoming Institutional Barriers to Pain Education
                                                 Handouts and Outline  
     
     

  4. Cancer Pain: Your Guide to Relief - HealthMark Multimedia
    HealthMark Multimedia is a health-related, interactive solution for patients and healthcare organizations. It is used  by patients in making treatment and self-care decisions, health care professionals for education purposes, and parents and children to learn about prevention and staying healthy.
     
  5. Coping with Cancer: Supportive and Palliative Care - National Cancer Institute  (Spanish version)
         -
    About Children with Cancer               
         - Financial, Insurance, and Legal
           Information 
         - Finding Healthcare Services
         - For Caregivers, Family, and Friends
         - Managing Emotional Effects 
         - Managing Physical Effects 
         - Supportive and Palliative Care Clinical
           Trials      
         - Survivorship - Living With and Beyond
           Cancer

     
  6. Easing Cancer Pain - Michigan State University  
    An interactive CD program designed to empower people with cancer who suffer from pain.  It provides a wealth of resources to help them understand their pain and seek effective treatment. 
     
  7. End-of-Life: Helping with Comfort and Care – U.S. National Institutes of Health , National Institute on Aging
    This booklet provides an overview of issues commonly facing people caring for someone nearing the end-of-life. 
     
  8. Fact Sheets on Cancer Pain – International Association for the Study of Pain (IASP)
          -
     Assessment of Cancer Pain 
          -
     Barriers to Cancer Pain Treatment
          - Cancer Pain Treatment
          - Partners and Caregivers of Cancer
            Patients Having Pain         
        
     

  9. Financial Issues and Cancer - American Cancer Society
     - Advanced Illness: Financial Guidance
       for Cancer Survivors and Their Families 
     - Coping Financially with the Loss of a
       Loved One:
            -Financial Guidance for Families 
            -Find Support and Treatment
            -Health Insurance and Financial
             Assistance for the Cancer Patient
     
  10. Guide to Controlling Cancer Pain - American Cancer Society
    Learn about a variety of methods for pain control and discover how to achieve the optimal balance between pain  relief and potential side effects of pain medication.  This resource can help people with cancer partner with their health care teams to create effective pain-relief plans tailored to their unique situations.
                  
  11. Health Facts for You - UW Health, University of Wisconsin Hospital & Clinics, Madison, WI
          -  Constipation from Opioids 
            
    (Naarcotics)
          -  Continuous Subcutaneous Lidocaine
             for Pain Management 
          -  Coping with Your Chronic Pain
          -  Fibromyalgia    
          -  How to Relieve Pain without Medicine 
          -  Intravenous Patient Controlled
             Analgesia 
          -  Pain Management            
     
  12. Leukemia & Lymphoma Society Resource Center  
    The latest information for patients, caregivers and healthcare professionals.     
     
  13.  Mesothelioma  
         -   Lean on Me - Cancer Through a Carer's
             Eyes
         -   100 Questions & Answers About
             Mesothelioma
         -   Mesothelioma Center Blog        
     
  14. Pain Control After Surgery -  Cleveland Clinic Health Information Center
    Types of pain control treatments including Patient-Controlled Epidural Analgesia, Patient-Controlled Intravenous Analgesia, NSAIDS, and narcotics.
     
  15. Pain - National Cancer Institute
    Important facts about cancer pain, treatment that will help you learn about pain control for people with cancer, including how to work with your doctors, nurses, and pharmacists to find the best method to control your pain.   
     
  16. Pain Multimedia Library - StopPain.org
    Visit the Pain Multimedia Library for the latest information and treatment options for common pain syndromes.  These Flash presentations include CRPs, Low Back Pain, Migraine Headache, Shingles, and Sickle Cell Pain.  Available in Spanish and Russian. 
     
  17. Passport to Comfort: Reducing Barriers to Pain & Fatigue Management – City of Hope, Duarte, CA
    This model addresses patient, professional and system barriers to the relief of pain and fatigue and is based on established guidelines developed by the National Comprehensive Cancer Network (NCCN).  An NCI supported program.  

          -
      Passport to Comfort – Pain
             Management & Fatigue
             Management Spanish version

          -
      Pain: Key Teaching Points, Assessment
             and Management Spanish version

          -
      Fatigue: Key Points, Assessment
             Spanish version

          -
      Fatigue: Key Points, Management
     
            Spanish version

          -
      Tip Sheet – Energy Conservation and
             Exercise     Spanish version

          -
      Tip Sheet – Strategies to Help Promote
             Improved Sleep     Spanish version

          -
      Tip Sheet – Nutrition Guidelines for
             Fatigue     Spanish version

          -
      Tip Sheet – Preventing and Managing
             Constipation      Spanish version

          -
      Tip Sheet – Coping with Emotional and
             Social Impact of Pain and Fatigue      
            
    Spanish version

          -
      Constipation Card   
          -  Dyspnea (Difficult Breathing) 
          -  
    Emotional Card 
          -  Fatigue Card with Scale Spanish
             version

          -  Nausea and Vomiting Card Spanish
             version

          -  
    Nutritional Card Spanish version
          -  
    Pain Card 
          
    -  Patient Knowledge Assessment Tool –
             Fatigue

          -
      
    Patient Knowledge Assessment Tool –          Pain
          -  Patient Spiritual Care Card 
          -  Sleep Card  Spanish version
     

          
    -  Spirituality Card  
          -
      Available Resources at City of
             Hope Spanish version

          -
      NCCN Guideline for Supportive
             Care        
       
  18. Patient Assistance and Reimbursement Guide – The Association of Community Cancer Centers
    This latest edition brings together information on pharmaceutical and non-pharmaceutical patient assistance programs (PAPs) and reimbursement resources.         
                                 
  19. Patient Bill of Rights - American Cancer Society
    A summary of the Consumer Bill of Rights and Responsibilities that was adopted by the US Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998.                          
     
  20. Patient Education  
    - Poetry of Pain - 
    The poems explore the 
      frustration, fear, anger, depression,
      acknowledgement and hope that Linda
      Martinson experienced as a person dealing
      with chronic pain. 
      

    - Pain: You Can Get Help
     - National Institute
      of Health - The booklet is written to
      increase patient awareness of the
      importance of treating pain.  

    -
     
    Guide to Controlling Cancer Pain - American
      Cancer Society  

    - Relieving Cancer Pain
     - Fred Hutchinson
      Cancer Research Center includes a video
     
    of
      cancer patients and clinicians
      discussing problems and solutions for
      managing cancer pain
     
    and a book which
      lists 
    barriers to pain relief, things to tell
      your doctor and a treatment plan for
      recording medication information.
     
  21. Patient Education Plan - Kaiser Permanente, Los Angeles, CA
    Developed by the Medical Care Program - Southern California region.  A checklist used for patient teaching and chart documentation.  Includes key content for pain education.
     
  22. Patient Medication Information - Fox Chase Cancer Center, Philadelphia, PA  
    Patient handouts regarding eleven medications including: Dilaudid tablets, Fentanyl patch, MS Contin, Morphine concentrate, Morphine Sulfate tablets or capsules, Oxycodone plus Acetaminophen, Oxycontin, Choline Magnesium Trisalicylate, Ibuprofen, Desipramine, and Nortriptyline.
     
  23. Patient Support and Treatment  - American Cancer Society
    Helps guide, support and inform patients through every step of their journey..
     
  24. Patient Resource Cancer Guide to Treatment-Related Side Effects  Patient Resource LLC
    Available free to patients and treatment facilities.
     
  25. R.A. Bloch Cancer Foundation & Block Cancer Hotline
    There are over 300 up to date cancer support organizations listed supporting specific types of cancer, organizations offering financial aid, blogs, a cancer checklist, patient matching services, meditation, transportation and more.
     
  26. The Cancer Nutrition Handbook –  Cancer Nutrition Center
    The online booklet details nutrition and cancer guidelines, including nutrition during treatment and suggestions for eating to provide maximum immunity. 
     
  27. The Handbook for People with Pain, 4th Edition – In the Face of Pain
    A 70 page resource guide that provides the patient or caregiver with help to face the challenges encountered by those who suffer from pain.  
     
  28. The Resource Center of the Alliance of  State Pain Initiatives  
      - Cancer Pain Can Be Relieved, 2nd Edition  
      - Children's Cancer Pain Can Be Relieved 
     
     - Eight Facts Everyone Should Know
        About Cancer Pain 
     
  29. Treatment Guidelines for Patients™ by Cancer Site  – National Comprehensive Cancer Network (NCCN)
    An educational tool for patients and oncology professionals.  Guidelines include breast cancer, chronic myelogenous leukemia, melanoma, malignant pleural mesothelioma, multiple myeloma, non-small cell lung cancer, ovarian cancer and prostate cancer.
     

  30. Understanding and Managing Pain: Information for Patients - The British Pain Society, London, UK
    This online booklet explores how to form a partnership between the patient and the health professionals working with them and how to get the best pain relief out of this partnership.

  31. Patient and Family Caregiver Paliative Care  Intervention Materials- These teaching materials are a part of a PC intervention for patients and family caregivers.  Key outcome papers from this work include:

    • Ferrell, B., Sun, V., Hurria, A., Cristea, M., Raz, D. J., Kim, J. Y., ... & Koczywas, M. (2015). Interdisciplinary palliative care for patients with lung cancer. Journal of pain and symptom management, 50(6), 758-767.

    Patient and Family Caregiver Education Materials

         Guidelines/Clinical Pathways

  1. Treatment Guidelines - American Cancer Society (ACS) 
         
     Advanced Cancer           
          - 
    Guide to Controlling Cancer Pain
                  -  Physical Side Effects

         Other Organizational Links

         -American Cancer Society

 

         -Cancer and Careers  

         -Cancer Connect

 

         -Cancernetwork  
         -Cancer Support Community  
         -DrugWatch.com  
         -Foundation for Women's Cancer    
         -Fran's Place ~ Center for Cancer  
          Counseling
 
         -Mesothelioma & Asbestos Awareness
          Center
 
         -Mesothelioma   
         -National Cancer Institute  
         -Pain Community  
         -Patient Advocate Foundation  

         -Patient Education Institute

 

         -Spine-Health.com

 

         -Selected Patient Information Resources in
          Asian
         -Languages (SPIRAL)

 

         -The Wellness Community  

         
      Position Statements/Standards
 

  1. Hospice and Palliative Nurses Associates (HPNA) Position Statement
             - Spiritual Care

 

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