V. Education
B. Patient/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.
O’Mara, A., Germain, D., Ferrell, B. R., & Borneman, T. (2008). Challenges to
and lessons learned from conducting palliative care research. Journal of Pain
and Symptom Management, In Press.
2.
Piper, B.,
Borneman, T., Sun, V., Koczywas.
M., Uman, G., Ferrell, B. R., & James.
R. (2008). Assessment of cancer-related
fatigue (CRF): Role of oncology nurses in translating assessment guidelines into
practice. Clinical Journal of Oncology Nursing, 12(5 Suppl), 37-47.
3. 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.
4. Ferrell, B. R. (2007).
Reducing barriers to pain assessment and management: An institutional
perspective. Journal of Palliative Medicine, 10(1S), S15-S18.
5.
Borneman, T., Piper, B., Sun, V., Koczywas, M.,
Uman, G., & Ferrell, B. R. (2007). Implementing the fatigue guidelines at one
NCCN member institution: Process and outcomes. Journal of the National
Comprehensive Cancer Network, 5(10), 1092-1101.
6.
Morris, M. E., Grant, M., Lynch, J. C. (2007). Patient-reported family distress
among long-term cancer survivors’. Cancer Nursing, 30 (1), 1-8.
7. Ferrell,
B. R. (2006). Cancer pain: Helping patients help themselves. NCI Cancer
Bulletin, 3(33), 3 & 6.
8. Borneman, T., Sun,
V., Ferrell, B. R., Koczywas, M., Piper, B, & Uman, G. (2006). Educating
patients about pain management. Oncology Nurse Edition, 20(10), 41-49.
9. Otis-Green, S. (2006). The transitions program: Existential care in action.
Journal of Cancer Education. 21(1), 23-25.
10. Borneman, T., Chu, D., Wagman, L., Ferrell, B., Juarez, G., McCahill, L., &
Uman. G. (2003). Concerns of family caregivers of patients with cancer facing
palliative surgery for advanced malignancies. Oncology Nursing Forum,
30(6), 997-1005.
11.
Borneman,
T., Ferrell, B. R., McCahill, L. E., Juarez, G., & Chu, D. (2003). Family
caregiver quality of life concerns: facing surgery for advanced malignancies.
Oncology Nursing Forum,. 32(6), 1143-1149.
12.
Ferrell, B. R., Melancon, C., Ervin, K., Smith, S., & Marek, T. (2002). Family
perspectives of ovarian cancer. Cancer Practice, 10(6), 269-276.
13. Ferrell, B.
R., & Juarez, G.
(2002). Cancer pain education for patients and the public. Journal of Pain
and Symptom Management 23(4), 329-336.
14. Ferrell, B. R.,
& Rivera, L. M. (1997). Cancer pain education for patients.
Seminars in Oncology Nursing,
13(1), 42-48.
15. Ferrell, B. R., Ferrell, B. A., Ahn, C.,
& Tran,
K. (1994). Pain management for elderly patients with cancer at home.
Cancer, 74, 2139-2146.
16. Ferrell, B. R., & Rhiner, M. (1994).
Managing cancer pain: A three-step approach. Nursing 94,
24(7), 56-59.
17. Ferrell, B. R., Rhiner, M., & Ferrell, B. A.
(1993). Development and implementation of a pain education program. Cancer, 72, 3426-3432.
Recommended
Publications
1.
Family Carers in Palliative Care: A Guide for Health and Social Care
Professionals
- Hudson, P. & Payne, S.
(2009). NY: Oxford University Press. ISBN #: 0199216908
2.
Handbook of Health Social Work
- Gehlert, S. & Arthur
Browne, T. (2006). NJ: John Wiley and Sons. ISBN #: 0471714313.
3.
But You Look
Good: A Guide to Understanding and Encouraging People Living with Chronic
Illness & Pain
- The
Invisible Disabilities Advocate. (2004).
4.
The Chronic Pain Solution:
Your Personal Path to Pain Relief
- Dilliard, J. N., & Hirschman, L. A. (2003). CAN: Random House. ISBN #:
0553381113.
5. The
Merck Manual of Medical Information, Second Home Edition
- Beers, M. H. (2003). PA: Merck Publishing. ISBN #: 0911910352.
6.
The War on Pain
- Fishman, S., & Berger, L. (2001). NY: Harper Collins Publishers. ISBN #:
0060930780.
7.
Be
Prepared: The Complete Financial, Legal, and Practical Guide to
Living with Cancer, HIV, and other Life-Challenging Conditions
-
Landay, D. (2000). NY: St. Martin's
Griffin. ISBN #: 0312253745.
8. Cancer
Doesn't Have to Hurt: How to Conquer the Pain Caused by Cancer & Cancer
Treatment
- Haylock, P. J.,
& Curtiss, C. P. (1997). CA: Hunter House Publishers. ISBN #:
0897932137.
9. Living With Chronic Pain One Day
at a Time
- Zabawa, M. A. (1994).
MN: Freedom Enterprises. ISBN #: 0963735306.
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
-
This CD provides you with information to
help you understand the pain management process, tools to help you assess and
control your pain and personal stories of people who have learned to manage
their pain. Complementary therapies and self care are discussed along with
strategies for working with the health care system.
5.
Coping with Cancer
- National Cancer Institute
-
Care for Children
and Adolescents With Cancer: Questions and Answers
-
Controlling Cancer Pain,
A Video for Patients and Families
-
Financial
Assistance and Other Resources for People with Cancer
-
National
Organizations That Offer Services to People With Cancer and Their Families
-
Pain
Control: Support for People with Cancer
in Spanish
-
El Dolor Relacionado con el Cancer
(Understanding Cancer Pain in Spanish)
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.
Fact Sheets – International Association for the Study of Pain (IASP)
-
Barriers to Cancer Pain Treatment
-
Cancer Pain
-
Cancer Pain Treatment
-
Partners and Caregivers of Cancer Patients Having Pain
8. 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
-
Costs of Cancer
-
Health
Insurance and Financial Assistance for the Cancer Patient
9. Health
Facts for You Flyers - University of Wisconsin Hospital & Clinics, Madison, WI
- Constipation from Opioids
- Coping with Chronic Pain
- FACES Pain Scale
- Fibromyalgia
- JAMA Pain Page
- Nondrug Strategies
- Pain Management - What Everyone Should Know
- Patient Controlled Analgesia
- Sexuality and
Chronic Pain
-
Continuous Subcutaneous Lidocaine for
Pain Management
10.
Managing Pain Begins with You
- This
downloadable brochure is easy to read and understand pain for pain sufferers
and health care providers and their practice settings. It is also available
in Spanish.
11. Mesothelioma Causes
Lean on Me - Cancer
Through a Carer's Eyes
100 Questions & Answers
About Mesothelioma
12.
Pain Control: A Guide for People with Cancer & Their Families - 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.
13. Pain
Control: Support for People with Cancer - 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.
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
Management - University of Michigan Health System
- A resource for patients, families and health care
providers on pain management options.
16.
Pain Management Fact Sheet – The Leukemia & Lymphoma Society
- The latest information
for patients, caregivers and healthcare professionals.
17.
Pain Management: The 3 R's (Video) - Milner-Fenwick, Timonium, MD
- This video will
help educate patients about pain management, which is now part of the JCAHO
standards. It provides practical guidelines for developing a pain management
plan and helps both the patient and caregiver establish realistic goals. Also
available in Spanish.
18.
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.
19. Pain
Resource Guide: Getting the Help You Need - American Pain Foundation
- A pain resource guide
designed to encourage you to take charge of your pain.
It provides important information about pain and
tips to
assist you in getting the quality pain care you deserve.
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.
-
Get Relief from Cancer Pain -
National Institute of Health - The booklet is written to increase patient
awareness of the importance of treating cancer pain.
-
Breakthrough Cancer Pain: Questions and Answers - American Cancer Society
-
Pain Control: A Guide for People with Cancer and Their Families - 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-Centered Communication in Cancer Care: Promoting Healing and Reducing
Suffering
-
This monograph lays the foundation for future innovative research in the area
of patient-centered communication in oncology as well as other illness
settings. Highlights include: conceptualization of patient-centered
communication into six key functions; emphasis on research that examines the
relationship between patient-centered communication and patient health
outcomes; detailed discussion of potential mediating and moderating mechanisms
of the association between communication and patient outcomes; and
identification of specific research priorities that would guide NCI in
planning future research initiatives in this important area.
22.
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.
23.
Patient Handbook for Cancer Pain Management - City of
Hope, Duarte, CA
Folleto sobre Como Tratar con
el Dolor del Cancer para los Pacientes de City of Hope (Spanish version)
- Developed by the Supportive Care Committee at City of
Hope, this book was developed to help patients care for their pain, or for
caregivers to help a loved one in pain. This booklet teaches how to assess
your pain and actively participate in its management.
24. 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.
25.
Patient Resource Cancer
Guide to Treatment-Related Side Effects –
Patient Resource Publishing, MO
- Available
free to patients and treatment facilities.
26.
Patient Rights and
Responsibilities - Rockford Memorial Hospital, Rockford, IL
- This document describes the patient's rights and
responsibilities to the commitment of excellence in pain management.
27.
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. Most available in English and
Spanish.
-
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
-
Emotional Card
-
Fatigue Card with Scale
Spanish version
-
Nausea and Vomiting Card
Spanish
version
-
Nutritional Card
Spanish version
-
Pain Card
-
Patient Spiritual Care Card
-
Sleep Card
Spanish version
-
Spirituality Card
-
Available Resources at City of Hope
Spanish version
-
NCCN Guideline for Supportive Care
- Passport to Comfort Newsletter
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.
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.
30.
The Wellness Community Nutrition Handbook
– The Wellness Community, Washington, DC
- This online booklet details nutrition and cancer guidelines, including
nutrition during treatment and suggestions for eating to provide maximum
immunity.
Guidelines/Clinical Pathways
1.
Treatment Guidelines - National Comprehensive Cancer Network (NCCN) and American Cancer Society (ACS)
The
National Comprehensive Cancer Network and the
American
Cancer Society have teamed up to provide patients and the general public
the most current information about treatment options. The guidelines include
information on early detection and evaluation of cancer, staging, and side
effects of various treatments.
-
Advanced Cancer and Palliative Care Treatment Guidelines for Patients
-
Cancer Pain: Treatment
Guidelines for Patients -
(PDF Version)
-
Cancer
Treatment Options
Other Organizational Links
Position
Statements/Standards
1.
Hospice and Palliative Nurses Associates (HPNA) Position Statement
- Spiritual
Care
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modified: June 12, 2009 |
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