The Cancer Caregivers Education Program© For All Cancer Caregivers Presents The Cancer Caregivers Education Program© For All Cancer Caregivers “Learn communication strategies to help you, help your cancer patient.” Saturday, June 3, 2017 © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Arizona Myeloma Network Founded by Barbara Kavanagh in 2004. AzMN provides advocacy and educational programs for myeloma patients, their families and all cancer caregivers. Introductions: thank the Arizona Myeloma Network for making the Cancer Caregiver Education and Support Program possible. Highlight the founder of Arizona Myeloma network is a cancer caregiver for her spouse. Barbara knows what cancer caregiving is and wanted to support cancer caregivers regardless of the particular diagnosis, etc. Take away: cancer caregiving does not discriminate. It impacts the caregiver regardless of the cancer diagnosis. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

“There are only four kinds of people in the world – those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who need caregivers.” Source: Rosalynn Carter Institute for Caregiving © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Program Agenda Welcome and Introductions Review Program Goals Getting to Know Each Other Cancer Caregiving Communication Needs Communication Skills and Tools: How to Get the Right Treatment and Help for Breakthrough Cancer Pain Resources & Raffle Closing © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Program Goals The attendee will learn: Communication challenges specific to the cancer caregiver Communication skills to assist in meeting the needs of your cancer patient Communication tools for loved ones and healthcare professionals © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Who are you? Who do you Care for? © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Research Two thirds of the families in one study experienced communication problems Caregivers experienced substantial difficulties in communicating with patients about illness and death particularly © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Research Patients 20.2% desired more communication 22.3% reported that communication was difficult Caregivers 39.9% desired more communication 37.3% reported that communication was difficult. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Reasons for Communication Challenges Avoidance of psychological distress Desire for "mutual protection" Belief in positive thinking © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Barriers to Communication Ability, or lack there of, to engage in open communication. Caregivers' emotional reactions (emotional exhaustion, and depression). Duration of care giving. Self-efficacy Lack of information and Feeling of ‘Helplessness’ Others? (1) See References © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

The Circle of Cancer Caregiver Communication Responsibilities Care Receiver/Patient Medical Team Family Friends Work Place Medical Insurance © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Communication Skills: The Crucial Piece of the Puzzle The Just Listen Exercise Expressing Your Feelings Exercise Effective communication is key to keeping relationships cooperative and less stressful. What really is effective communication: it is about exchanging information and understanding the emotion behind what is being said. “Effective communication can improve relationships at home, work, and in social situations by deepening your connections to others and improving teamwork, decision-making, and problem solving. It enables you to communicate even negative or difficult messages without creating conflict or destroying trust. Effective communication combines a set of skills including nonverbal communication, attentive listening, the ability to manage stress in the moment, and the capacity to recognize and understand your own emotions and those of the person you’re communicating with.”- helpguide.org Small group exercise: Exercise 4: Just Listen(adapted from Mindtools.com This is an activity that encourages participants to communicate how they feel about a subject. People get into pairs and one member talks about her opinions. Her partner listens without speaking, and then, without rebuttal, recaps on what has been said. Uses This activity strengthens your team members' listening skills. Listening is an incredibly important part of good communication, and it's a skill that people often ignore in team activities. This activity also shows team members how to listen with an open mind. People and Materials An even number of team members, ideally. Eight index cards for each team of two. Each card should list one topic. A private room. Time 25-30 minutes. Instructions Have your attendees sit down in pairs. Give each pair eight index cards. One partner will blindly choose a card and then speak for three minutes on how he feels about the topic. As he talks, the other person cannot speak – her goal is to listen. After three minutes, the listener has one minute to recap on what her partner has said. She cannot debate, agree or disagree – only summarize. Next, the roles switch, and the process starts again. Follow-Up Talk with your attendees about how they felt about this exercise. Consider these questions: How did speakers feel about their partners' ability to listen with an open mind? Did their partners' body language   communicate how they felt about what was being said? How did listeners feel about not being able to speak about their own views on the topic? How well were they able to keep an open mind? How well did they listen? How well did the listening partners summarize the speakers' opinions? Did they get better as the exercise progressed? How can they use the lessons from this exercise at in their caregiving role? Small Group Exercise: expressing your feelings. Adapt Kendra’ exercise on I versus You statements. Potential large group exercise in which the attendees observe a discussion between facilitator and volunteer. First conversation utilizes you statements frequently. Ask large group what emotions they observed. How did communication skills work against goal of conversation. Then do “I” statement focused conversation with facilitator and volunteer. Have large group examine effective of this approach. Take Away: communication skills are a strength when practiced regularly. Emotions can either help or hinder effective communication. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Communication Skills with the Medical Team Be compliant with patient privacy rights Request family meetings when necessary Prepare for the appointment with questions in hand Understand time limitations Additional material in your booklet. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Enhancing Communication Skills with Your Loved One Ask for permission when wanting to discuss hard topics Use “I” statements whenever possible Take a deep breath before speaking and before responding © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Lets Take a Break © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Pain What is Breakthrough Cancer Pain? Insys slides on Pain Dr. Steven G. Wong Randall W. Morrison, patient © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Brain Storm As a small group, please discuss why cancer patients and caregivers have difficulty talking about Break Through Pain © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Keeping Humor in Your Life © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

other ways to deal with ‘pain’: yoga exercise © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Program Conclusion Something you learned today: Meet our Resources/panel Thank attendees and allow any additional time for discussion, etc.. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

Thank You For Attending and for Supporting Our Programs Please complete the evaluation form For more information, contact: AzMN Founder and CEO: Barbara Kavanagh, MSW admin@myelomanetwork.org 623-466-6246 © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED

© 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED Program Sponsors The Cancer Caregivers Education Program© is funded by BHHS Legacy Foundation which is an Arizona charitable organization whose philanthropic mission is to enhance the quality of life and health of those it serves. © 2011-2017 Arizona Myeloma Network ALL RIGHTS RESERVED