B. Patient and Family Education
This section includes educational kits and books,
instructional guides and videos and health information sheets on
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:
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,
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.
- 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:
- 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.
of Pain and Symptom Management, 39(3), 486.501.
OMara, A., Germain, D., Ferrell, B. R., & Borneman, T. (2009).
and lessons learned from conducting palliative care research. Journal of
Pain and Symptom Management, 37(3),
- Piper, B.,
Borneman, T., Sun, V., Koczywas.
M., Uman, G., Ferrell, B. R., & James.
fatigue (CRF): Role of oncology nurses in translating assessment guidelines into
practice. Clinical Journal of Oncology Nursing, 12(5 Suppl), 37-47.
C., Juarez, G., Muρoz, 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.
New social media site for cancer patients. Oncology Times, 35(18),
12. DOI: 10.1097/01.COT.0000435398.65946.0b
- Handbook of Health Social Work,
Gehlert, S. & Arthur
Browne, T. (2011). NJ: John Wiley and Sons. ISBN #: 9780470643655.
Nobody Tells You About Cancer Treatment and Your Sex Life from A to Z
University of Oklahoma College of Nursing.
Merck Manual of Medical Information for Patients and Caregivers, Second
Home Edition Online Version
Beers, M. H. (2009). PA:
Merck Publishing. ISBN #: 0911910352.
Family Carers in Palliative Care: A Guide for Health and Social Care
Hudson, P. & Payne, S.
(2009). NY: Oxford University Press. ISBN #: 0199216908.
- The Chronic Pain Solution:
Your Personal Path to Pain Relief (Kindle Edition)
Dilliard, J. N., & Hirschman, L. A. (2008).
CAN: Random House.
ASIN #: B001NJUOEO.
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.
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.
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.
- Pain Management for Individual Patient Education
Module II -
Cultural Considerations in Patient and Public Education
Module III - Pain
Education provided through group settings
Module IV - Public Education for
Module V - Telephone Education
Module VI - The JCAHO
Imperative; Improved Pain Management
Module VII - Professional Education as a
Prerequisite to Patient Education; Involving Colleagues in Pain Education
Module VIII - Overcoming
Institutional Barriers to Pain Education
Cancer Pain: Your Guide to Relief - HealthMark Multimedia
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.
Coping with Cancer:
Supportive and Palliative Care - National Cancer Institute (Spanish
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
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.
End-of-Life: Helping with Comfort and Care U.S. National Institutes of
Health , National Institute on Aging
booklet provides an overview of issues commonly facing people caring for
someone nearing the end-of-life.
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
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
Find Support and Treatment
Insurance and Financial Assistance for the Cancer Patient
to Controlling Cancer Pain - American
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.
Facts for You - UW Health, University of Wisconsin Hospital & Clinics, Madison, WI
Constipation from Opioids
Continuous Subcutaneous Lidocaine for
Your Chronic Pain
to Relieve Pain without Medicine
- Intravenous Patient Controlled Analgesia
Leukemia & Lymphoma Society
latest information for patients, caregivers and healthcare professionals.
Lean on Me - Cancer
Through a Carer's Eyes
100 Questions & Answers
Mesothelioma Center Blog
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.
Pain - National
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.
Pain Multimedia Library
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.
Comfort: Reducing Barriers to Pain & Fatigue Management City of Hope,
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
- Pain: Key Teaching Points, Assessment and Management
- Fatigue: Key Points, Assessment
- Fatigue: Key Points, Management
- Tip Sheet Energy Conservation and Exercise
- Tip Sheet Strategies to Help Promote Improved Sleep
- Tip Sheet Nutrition Guidelines for Fatigue
- Tip Sheet Preventing and Managing Constipation
- Tip Sheet Coping with Emotional and Social Impact of Pain and Fatigue
- Constipation Card
- Dyspnea (Difficult Breathing)
- Emotional Card
- Fatigue Card with Scale
- Nausea and Vomiting Card
- Nutritional Card
- Pain Card
Knowledge Assessment Tool Fatigue
Knowledge Assessment Tool Pain
- Patient Spiritual Care Card
- Sleep Card
- Spirituality Card
- Available Resources at City of Hope
- NCCN Guideline for Supportive Care
Assistance and Reimbursement Guide The Association of Community Cancer
This latest edition brings together
information on pharmaceutical and non-pharmaceutical patient assistance
programs (PAPs) and reimbursement resources.
Bill of Rights -
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.
- Patient Education
- Poetry of Pain
- The poems explore
the frustration, fear, anger, depression, acknowledgement and hope that
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
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.
- 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.
- Patient Medication Information
- Fox Chase Cancer Center, Philadelphia, PA
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.
Patient Support and Treatment - American
guide, support and inform patients through every step of their journey..
Cancer Guide to Treatment-Related Side Effects
Patient Resource LLC
free to patients and treatment facilities.
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.
- The Cancer
Nutrition Handbook Cancer Nutrition Center
online booklet details nutrition and cancer guidelines, including nutrition
during treatment and suggestions for eating to provide maximum immunity.
The Handbook for People with Pain,
4th Edition In the Face of
A 70 page resource guide that provides the patient or
caregiver with help to face the challenges encountered by
those who suffer from pain.
- The Resource Center of
the Alliance of State Pain Initiatives
Cancer Pain Can Be Relieved,
Children's Cancer Pain Can Be Relieved
Eight Facts Everyone Should Know
About Cancer Pain
Treatment Guidelines for Patients
by Cancer Site
National Comprehensive Cancer Network (NCCN)
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.
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.
- Treatment Guidelines - American Cancer Society (ACS)
Guide to Controlling Cancer Pain
Other Organizational Links
Hospice and Palliative Nurses Associates (HPNA) Position Statement
Website last modified:
March 17, 2016