Cancer Survival Toolbox

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Workshop
Pamela Oiler -­‐ National Coalition for Cancer Survivorship, National Association of Social Workers, and Oncology Nursing Society Social Work, University of Wyoming Family Residency Program ABSTRACT: This is an introduction to the Cancer Survivor Toolbox which teaches professionals to care for cancer survivors in a geographically, culturally, and socio-­‐economically sensitive manner. Upon completion of this course, participants will be aware of the entire scope of the cancer experience and have comprehensive resource information both for themselves and

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  • Learn how to identify reliable sources for information about specific types of cancer, as well as about successful treatment options. Learn where to go to find the latest developments in diagnosis, treatment and clinical trials

Transcript

  • 1. Cancer Survival Toolbox Workshop
    • Pamela Oiler, MSW, LCSW
    • Shepard Symposium on Social Justice
    • University of Wyoming
    • Laramie, WY
    • April 8, 2011
  • 2. The First Step to Cancer Survival ™
  • 3. Workshop Objectives
    • By the end of the workshop, attendees will be able to:
    • Identify the essential self-advocacy skills for cancer survivors, as indicated in the Cancer Survival Toolbox (CST) Basic Skills series
    • Describe how the CST supports survivors along the survivorship/cancer care continuum 
    • Provide concrete examples of the opportunities for introduction of the CST to survivors and their families.
    • Identify opportunities to engage peers in promotion of the CST.
  • 4.
    • “ Give a man a fish; you have fed him for a day. Teach a man how to fish; and you have fed him for a lifetime“.
  • 5. What is the Cancer Survival Toolbox?
    • A free, self-learning audio program
    • Teaches skills that can help people with cancer meet the challenges of their illness
    • Survivors can learn at their own speed and in their choice of settings
  • 6. Audio clip
  • 7. Components of the Toolbox
    • Basic Skills Program
    • Communication
    • Finding Information
    • Making Decisions
    • Solving Problems
    • Negotiating
    • Standing Up For Your Rights
    • Special Topics Program
    • First Steps for the Newly Diagnosed
    • Topics for Older Persons
    • Finding Ways to Pay for Care
    • Caring for the Caregiver
    • Living Beyond Cancer
    • Dying Well
  • 8. Definition of a Cancer Survivor
    • From the moment of diagnosis and for the balance of life, a person with cancer is a survivor. Because they are impacted by a loved ones diagnosis - family, friends, and caregivers are survivors too.
    • - National Coalition for Cancer Survivorship
  • 9. To teach newly diagnosed cancer survivors, their caregivers, and those who have been living with cancer for some time, important life skills that foster empowerment and successful self-advocacy.
  • 10. CST: A collaborative effort of patient advocacy, social work and nursing…….
    • National Coalition for Cancer Survivorship (NCCS)
    • Oncology Nursing Society (ONS)
    • National Association of Social Work (NASW)
    • Association of Oncology Social Work (AOSW )
  • 11. How it all started……
  • 12. Only 25% of oncology nurses and oncology social workers believe their clients have the skills needed to be active partners in the health care team.
  • 13. “ The Toolbox helped me in communicating with my doctors, with decision-making, and especially finding information and knowing web sites that will continue to keep me updated. Also gives me hope . A wonderful resource I have listened to and will listen to. Thank You.” - Survivor, 4/25/2010
  • 14. The Cancer Survival Toolbox is important because survivors need to...
    • know how to find information.
    • make the best decisions.
    • interact effectively with health care team members, family members, insurers, and employers.
  • 15. “ I give this to everyone with the caveat that if they do not find it helpful, they should return it to me. I have only gotten one set back.” – Nurse 12/3/2009
  • 16. Why Should Social Workers, Nurses, and Health Care Professionals Use the Toolbox?
    • There are many issues that are common to people who are dealing with cancer.
    • Potential issues can become real and major challenges when they are not dealt with in timely ways.
  • 17. “ "It gets to the heart of the matter that these patients are dealing with daily. They are scared about their disease, their treatment, how they are going to pay for their treatment and dying. This Toolbox provides them resources to find answers without someone telling them that they " don't need to worry about that ." – Nurse 12/8/2009
  • 18. Why promote the Toolbox to survivors and their families?
    • The Toolbox gives survivors a basic level of information from which to develop an understanding of their cancer and their treatment plan.
    • The CST helps health care professionals use their time effectively and efficiently.
  • 19. “ The Cancer Survival Toolbox has helped me feel more in control of complex health issues, dealing with past cancer diagnosis, and now leukemia. I know where to start and don’t feel so alone.” - Survivor, 3/17/2010
  • 20. The CST is a validated, culturally sensitive tool………
    • The Toolbox has been validated for use in culturally, economically, geographically, and cognitively diverse populations.
    • The Toolbox case studies are culturally sensitive and varied.
  • 21. The Cancer Survival Toolbox
    •   Can be given to:
      • Individual survivors, especially those who are newly diagnosed.
    • Can also be used in:
      • Support group settings.
  • 22. CST: All the tools you need for effective self-advocacy training
    • Six Basic Skills Programs
    • Six Special Topics Programs
    • Disease-Specific Programs
    • Resource Book and Web Links
    • Most in English and Spanish
    • Group Facilitator’s Manual
    • Evaluation tools
  • 23.  
  • 24. Cancer Burden in Wyoming
    • In 2008, there were a total of 2,414 new cases of cancer diagnosed in Wyoming Residents.
    • Of the 2,414 cases, 13 were in individuals under age 20 years of age. Another 287 cases were in those between ages of 20-50, and the other 2, 114 cases were individuals over age 50.
    • Cancer is the second leading cause of death in Wyoming, second only to heart disease.
  • 25. Wyoming Top Cancer Incidence Sites - 2008 (Wyoming Department of Health) Total Male Female Prostate 453 Prostate 453 Breast 334 Breast 343 Lung 155 Lung 136 Lung 291 Colorectal 122 Colorectal 100 Colorectal 222 Bladder 93 Uterine 63 Bladder 130 Oral Cavity 66 Melanoma 63
  • 26. Wyoming Cancer Control Plan: Incidence of Cancer in Wyoming Cancer Site # of Cases Diagnosed in 2008 Prostate 448 Breast (females only) 339 Lung 280 Colorectal 218 Bladder (with in situ) 127
  • 27. According to Wyoming Department of Health, Wyoming Cancer rates
    • According to Wyoming Department of Health, the incidence for all cancer sites combined increased from 411/100,000 (2007) to 439.8/100,000 (2008).
    • Despite this increase, Wyoming rates are still lower than the National rate of 464.6/100,000.
    • Mortality rates for all types of cancer dropped to 159.1/100,000 (2008) which, again, is lower than the national rate of 177/100,000.
  • 28. According to Wyoming Department of Health:
    • Top 5 Cancer SITES: prostate, female breast, lung/bronchus, colorectal, and urinary bladder.
    • Increasing INCIDENCE: female breast, leukemia, oral cavity, prostate, and thyroid.
    • Top six cancer sites for MORTALITY: lung/bronchus, colorectal, ill-defined, cancer of pancreas, breast and prostate.
  • 29. Wyoming Cancer Control Plan: Mortality in Wyoming Cancer Site # Deaths in 2008 Lung 224 Colorectal 87 Ill-defined 73 Pancreas 59 Breast 52 Prostate 52
  • 30. Wyoming Survival Rates
    • A five-year (60 months) survival rate is the goal that every survivor strives to meet.
    • Next slide displays the cancer survival rates in Wyoming .
  • 31.  
  • 32. DID YOU KNOW?
    • According to the Wyoming Department of Health, cancer is a reportable disease in Wyoming.
    • State statue requires that physicians, hospitals, and laboratories report all cases of cancer they diagnose or treat in Wyoming to the Cancer Surveillance Program (WCSP), which serves as the state’s central cancer registry.
    • Wyoming Cancer Surveillance Program
    • 6101 Yellowstone Rd ., Suite 259A
    • (307) 777-7951 (phone) (307) 777-8604 (fax)
  • 33. Wyoming Cancer Control Plan: 7 Areas of Focus
    • Tobacco
    • Diet, Exercise, and Weight Control
    • Ultraviolet Exposure
    • Radon
    • Breast and Cervical Cancer
    • Colorectal Cancer
    • Healthcare Access
            • (Wyoming Comprehensive Cancer Control Program)
  • 34. Wyoming Cancer Control Plan: Tobacco Focus Area 2003 (baseline) 2009 (Progress) % adults using tobacco 32.7% 32.8% % adults tried quitting smoking 47.1% 50.1% %high school students using tobacco 26% 22.1% % high school students who tried to quit 57.8% 55.3% % workplace doesn’t allow smoking 78.5% 81.3%
  • 35. Wyoming Cancer Control Plan: Diet, Exercise &Weight Control Focus Area 2003 (baseline) 2009 (progress) % adults eating five+ fruits/vegetables per day 22.1% 20.9% % adults meeting physical activity requirements 55.4% 57.3% % adults: no physical activity beyond work 21.1% 26.6% % adults who are obese 20.1% 25.4% % youth eating five + fruits/vegetables per day 23% 19.1% % youth getting sufficient physical activity 32.3% 48.9%
  • 36. Wyoming Cancer Control Plan: Ultraviolet Exposure Focus Area 2003 (baseline) 2008 (progress) % adults reporting burns from the sun in past year 48.2% 47.1%
  • 37. Wyoming Cancer Control Plan: Radon Focus area 2003 Baseline 2008 Progress % of households tested for radon 26% 29% % residents who know radon exposure is a risk factor for lung cancer 57.8% 71%
  • 38. Wyoming Cancer Control Plan: Breast and Cervical Cancer Focus Area 2003 (baseline) 2009 (progress) % females over 40 years of age receiving a mammogram 69.6% 66% % females 18 and older receiving a pap test 83.2% 71.9%
  • 39. Wyoming Cancer Control Plan: Colorectal Cancer Focus Area 2003 (baseline) 2009 (baseline) % of people 50 and older who had sigmoidoscopy or colonoscopy 50.9% 56.4% % of people 50 and older who had a blood stool test 18.5% 14.3%
  • 40. Wyoming Cancer Control Plan: Healthcare Access Focus Area 2003 (baseline) 2009 (progress) % Adults with no healthcare provider 23.9% 26.2% % adults unable to receive care due to cost 12.5% 12.4% % adults w/o any healthcare coverage 19.9% 19.3%
  • 41. The Cancer Survival Toolbox Basic Skills Programs
    • Communicating
    • Finding Information
    • Making Decisions
    • Solving Problems
    • Negotiating
    • Standing Up for Your Rights
  • 42. Candy Exercise
    • Pick 3 different candies from the basket. Save the candies as we will be coming back to them in a few minutes.
    • ( You can eat the candies at the end!)
  • 43. Saying what you need to say in ways that make it clear to others that what you have to say is important.
  • 44. Communication Skills
    • Being assertive
    • Using "I" messages
    • Active listening
    • Checking the message
    • Expressing feelings
  • 45. Audio Clip Experience of a newly diagnosed patient
  • 46.
    • Sometimes all it takes to open the doors to  communication is  a little bit of  chocolate.
  • 47. Candy Moment…
    • Now share your impressions, thoughts or comments about this program.
  • 48. Program Two: Finding Information
    • Being able to use many of the different available resources, to find information that will help in understanding cancer and its treatment.
  • 49. Finding Information
    • Find good information
    • Pick experts you respect and trust to be part of your health care team
    • Know when and how to seek a second opinion
    • Look for what is new
    • Feel comfortable with decisions made
  • 50. Finding information
    • Audio Clip
    • Being involved in finding any information of interest regarding cancer helps give patients a sense of control .
  • 51.
    • A little bit of “kit” and a little bit of “kat” can go a long way!
  • 52. Candy Moment…
    • Think about the information and stories you have just heard. When you start to look for your own information, think about how to determine how factual and accurate it is.
    • Now share your impressions, thoughts or comments about this program.
  • 53. Program Three: Making Decisions
    • Identifying how you make decisions, how your style can work or how it can be improved, and how to weigh the pros and cons of deciding about cancer treatment.
  • 54. Making Decisions
    • Identify decision-making preferences
    • Explore benefits of a second opinion
    • Identify timeframe for making a decision about cancer treatment
    • Weigh pros and cons
    • Acknowledge self as an individual: not a statistic
  • 55. Making decisions
    • Audio Clip
    • People utilize different strategies when making important decisions.
  • 56.
    • Making your own decisions can be a real lifesaver!
  • 57. Candy Moment…
    • What kind of decision-maker are you? And, might that change if you got unexpected news such as cancer?
  • 58. Program Four: Solving Problems
    • Following the steps needed to solve a difficult situation in your life or daily activity.
  • 59. Solving Problems
    • Identify and define the problem
    • Gather information
    • Plan your action
    • Carry out your plan
    • Evaluate your plan and make needed changes
  • 60. Solving Problems
    • We will listen to Ellen as she navigates her way through the five steps of problem solving.
    • Audio Clip
  • 61.
    • Don't get caught “be-twix” a rock and hard place. Learn how to solve problems.
  • 62. Candy Moment…
    • Now share your impressions, thoughts or comments about this program.
  • 63. Program Five: Negotiating
    • Talking with people involved in your health care, so you can get what you need to achieve the best quality of life possible
  • 64. Negotiation Skills
    • Listen to the information provided
    • Demonstrate good communication skills
    • Identify personal values and principles
    • Set your personal limits
    • Set aside emotions when negotiating
    • Be willing to visualize more than one solution to any problem
  • 65. Negotiating
    • In order for a cancer survivor and a doctor to work together for optimal care, often negotiation is necessary.
    • Audio Clip
  • 66. Candy Moment…
    • Now share your impressions, thoughts or comments about this program.
  • 67.
    • Learning how to negotiate can get you out of a sticky situation.
  • 68. Program Six: Standing Up for Your Rights
    • Learning to actively do something in your own best interest…
    • Also known as self-advocacy
  • 69. Standing Up for Your Rights
    • Feel more in control about your life
    • Build confidence to face challenges that seem too difficult to overcome
    • Reach out to others
    • Feel hopeful rather than hopeless and helpless
  • 70. Standing Up For Your Rights
    • Audio Clip
    • One aspect of standing up for your rights is advocating and fostering hope.
  • 71.
    • Find that “Burst” of energy and you are sure to be a “Star”.
  • 72. Candy Moment…
    • What is hope? How do you define hope?
    • Try to think about something someone said or did in the past week that increased your hope.
  • 73. Break Time!
    • Please return in 10 minutes.
  • 74. CST Special Topics
    • First Steps for the Newly Diagnosed
    • Topics for Older Persons
    • Finding Ways to Pay for Care
    • Caring for the Caregiver
    • Living Beyond Cancer
    • Dying Well - The Final Stage of Survivorship
  • 75. First Steps for the Newly Diagnosed
    • Information that needs to be gathered and decisions that need to be made in the initial days and weeks following a cancer diagnosis.
  • 76. First Steps for the Newly Diagnosed
    • Select members of your cancer care team
    • Work with the team to gather information needed to make informed decisions
    • Decide on an initial treatment plan
    • Learn about your insurance policy (or where to go for help if you are underinsured or uninsured)
    • Telling others about your diagnosis
    • Identify and ask for help and support
  • 77. Topics for Older Persons
    • Cancer is common among older persons but being “older” should not add to the burden of the disease.
  • 78. Topics for Older Persons
    • Ageism in the health care system
    • Older adults as medically underserved
    • Co-morbidities among older adults
    • Getting help paying for medications
    • Standing up for your rights
  • 79. Premise: Insurance problems can pose barriers to getting quality cancer care. Finding and paying for care is difficult, but not impossible.
  • 80. Goal: Help survivors prepare for and cope with the challenges of paying for care, medicines, and supplies, when dealing with cancer and its treatment.
  • 81. Finding Ways to Pay for Care
    • When you have no insurance
    • Medicare and Medicaid
    • Hospice care and how to evaluate it
    • Veterans Administration Benefits
    • Public and private community resources
    • Using your life insurance
    • Getting and paying for prescription medicines
    • Federal laws and health care rights
  • 82. As a caregiver, it is easy to be overwhelmed by caring for a cancer survivor. An important point to remember is that you, as a caregiver, are also a survivor because you, too, are surviving the challenges, responsibilities, and life-changing effects of this disease and its treatment. Goal: To assist the caregiver in meeting his or her individual needs, while providing the best care and attention to the cancer survivor.
  • 83. Caring for the Caregiver
    • Strengthen skills and abilities and find and use new resources
    • Do a much better job of nurturing everyone involved – including the caregiver
  • 84. Caring for the Caregiver
    • Audio clip
    • It is terribly important to support the caregiver so that they do not become overwhelmed or burn out .
  • 85. Caring for the Caregiver
    • As a caregiver, you have at least two lives to think about, yours and the person you are caring for, so many decisions to make, and problems to solve. Negotiation is a crucial skill.
  • 86. Living Beyond Cancer
    • Cancer survivorship is a day-to-day, ongoing process that begins with diagnosis and continues through the balance of life.
    • Surviving cancer is more complicated than simply being sick or well, having cancer or being cancer-free. Instead, it is a continual, evolving process.
  • 87. Living Beyond Cancer
    • C ommon physical effects of cancer and its treatment, and maintaining a personal health history
    • Sexuality and fertility
    • Supporting family relationships.
    • Emotional aspects
    • Health directives, wills and trusts, power of attorney, and financial planning
    • Living with hope: Dealing with uncertainty
  • 88. Dying Well – The Final Stage of Survivorship
    • An informative, supportive, and reassuring program designed to offer guidance and understanding about choices, resources, and what to expect during this last stage of survival.
  • 89. Dying Well
    • Communicate effectively with people in one’s life
    • Manage hopes and expectations
    • Deal with any anxiety or depression
    • Decision-making: symptom management, continuation of treatment, palliative care & hospice
    • Understanding the dying process
    • Managing grief
  • 90. Disease Specific Modules
    • Living with Multiple Myeloma (2009)
    • Living with Non-Hodgkin Lymphoma (2009)
    • Living with Chronic Lymphocytic Leukemia (2010)
    • Living with Chronic Myelogenous Leukemia (2011)
    • Living with Transplant for Blood Cancer (2011)
  • 91. Introducing the Toolbox to individuals
    • Determine readiness
    • CD player?
    • Assess levels of health literacy & language
    • Assess “WWWW”: W ho, W hat, W here, & W hen
    • Arrange time for minimal ( 0 ) interruptions
    • Apply “elevator speech” as introductory statement
    • Match survivor’s needs to CST content
    • Set discussion & review time
  • 92.
    • “ It provided me with EXCELLENT information. I really, really wish this was offered to me at my initial diagnosis at my Oncology Office. The information in here would have been very useful to me at the first stage of treatment…it has settled my nerves and I realize what my body is still going through is very natural after chemo.” – Survivor, 6/22/2010
  • 93. Role Play in an Individual Setting
    • Select an attendee with whom to role play example of introducing CST to a newly diagnosed survivor……………….
  • 94. Introducing the Toolbox to groups
    • Psychoeducational
    • Purpose is learning
    • Structured format
    • Role of Facilitator is
    • to teach
    • Participants may gain support
    • Support
    • Purpose is emotional support
    • Format is open-ended
    • Role of Facilitator is to promote sharing
    • Participants may learn
  • 95.
    • “ Great audio resource for new cancer patients and nice to offer at support groups for a comprehensive overview of subjects.”
    • – Nurse, 3/2/2010
  • 96. Role Play in Group Setting
    • Select attendees with whom to role play example of introducing CST in a support group
  • 97. Available at no cost! To order, call toll-free: 877-NCCS-YES 877-622-7937 Listen, read or order online: www.canceradvocacy.org Also Available: In Spanish In Chinese (print only)
  • 98. Please complete an evaluation form
  • 99. References
    • Harris, A. (2011). Education Versus Lobbying: Knowing the Difference . Cheyenne, Wy: Wyoming Department of Health.
    • Wyoming Comprehensive Cancer Control Consortium. Wyoming Cancer Control Plan 2011-2015. Cheyenne, Wy: Wyoming Comprehensive Cancer Control Consortium, Wyoming Department of Health.
    • State of Wyoming Department of Health. (2010). Annual Report on Cancer in Wyoming – 2008 . Cheyenne, Wy: Wyoming Cancer Surveillance Program.