Cancer Survival Toolbox

Lynn Barwick, LCSWOncology Social Worker

¡Vida! Educational Series - Promoting Good Health

What is theCancer Survival Toolbox?

A free, self-learning audio program Survivors can learn at their own speed and

in their choice of settings

HISTORY OF THE CS TOOLBOX

• 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)

• A confirmed need, several studies showed the need existed in the field

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

The Goal of Using theThe Goal of Using theCancer Survival ToolboxCancer Survival Toolbox

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.

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.

The Toolbox addresses a demonstrated need………

Arizona ranking:Lowest in cancers among menSecond lowest in cancers among women.

So why are we here today if Arizona has the lowest numbers?

• According to ACS 2010 statistics:• 1,529,560 deaths in US from Cancer• 10, 630 deaths in Arizona from cancer• 29, 780 new cases of cancer diagnosed in

Arizona alone

• Of the newly diagnosed, many are uninsured and/or underinsured to cover the costs of care

The Cancer Survival Toolboxis 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

Why Should Social Workers and Nurses 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.

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

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

The Cancer Survival Toolbox

•  Can be given to:

• Individual survivors, especially those who are newly diagnosed

• Can also be used in:

• Support group settings

• Psycho educational group settings

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

The Cancer Survival ToolboxBasic Skills Programs

Communication Finding Information Making Decisions Solving Problems Negotiating Standing Up for Your Rights

Program One:Introduction to Communication

• Audio Clip from Communication

• Communication is “Saying what you need

to say in ways that make it clear to others

that what you have

to say is important.”

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.

Use Reliable Resources:

• My Favorite Resources are:• American Cancer Society (ACS)• www.cancer.org• National Cancer institute (NCI) Cancer

Information Service www.cancer.gov• NCI Physician Data Query (PDQ)

www.cancer.gov/cancertopics/PDQ• Cancer Care www.cancercare.org

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.

Program Four:Solving Problems

Following the steps needed to solve a difficult situation in your life or daily activity.

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

Program Six:Standing Up for Your Rights

Learning to actively do something in your own best interest…

Also known as self-advocacy

Self-Advocacy• It’s not about activism• Not just for those who are energetic, vocal and

assertive• Begins at a very personal level• Includes the ability to understand information• Make informed choices about treatment, including

2nd opinions or no treatment if that is their choice

• Find resources and support systems

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

First Steps for theNewly Diagnosed

Information that needs to be gathered and decisions that need to be made in the initial days and weeks following a cancer diagnosis.

Topics for Older Persons

Cancer is common among older persons but being “older” should not add to the burden of the disease.

Finding Ways to Pay for CareFinding Ways to Pay for Care

Premise: Insurance problems can pose barriers to getting quality cancer care. Finding and paying for care is difficult, but not impossible.

Finding Ways to Pay for Care

Goal: Help survivors prepare for and cope with the challenges of paying for care, medicines, and supplies, when dealing with cancer and its treatment.

Caring for the CaregiverCaring for the Caregiver

Goal:

To assist the caregiver in meeting his or her individual needs, while

providing the best care and attention to the cancer survivor.

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

Living Beyond Cancer Common 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

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.

The Cancer Survival ToolboxAvailable at no cost!

To order, call toll-free: 877-NCCS-YES 877-622-7937Listen, read or order online: www.canceradvocacy.orgAlso Available:In SpanishIn Chinese (print only)

Local Resources• American Cancer Society (ACS) 1-800-

227-2345 www.cancer.org• Positive Impact, contact Holly at

www.positiveimpactinc.org or call at 1-480-899-7791 or fax to 480-659-7581

• Well Woman, provides exams, mammograms, pelvic and pap www.wellwomanhealthcheck.org LinkIN.nursing.arizona.edu