Caregiver Engagement Guidebook

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Caregiver Engagement Guidebook Updated February 2016

Caregiver Engagement The caregiver is an integral part of a cancer patient s personal journey. Caregivers come to Relay For Life events to support their loved ones, whether those individuals are present at the event or not. Caregivers take up the fight against cancer on behalf of their loved ones and are some of the event s most motivated participants. It is important that throughout the Relay experience from event meetings, outreach, and event promotion we ensure that all caregivers know just how valuable they are and how they can get involved. A caregiver is a person whose life has been touched by a diagnosis of cancer by someone they know. Simply put, a caregiver is someone who has cared for someone with cancer. If you have done anything to provide support, given your time, or simply been a shoulder to lean on, you are and always will be a caregiver. My mother didn t lose her battle. She just passed it on to me. Relay Participant and Caregiver, West Orange, NJ Being a caregiver extends beyond coming to the Relay event to honor or remember loved ones touched by cancer. The laps taken at the event itself provide the opportunity for reflection and also represent the desire to support the lifesaving mission of the American Cancer Society. But, it s the LAP we take beyond the Relay event that will bring us closer to finishing the fight against cancer. This acronym helps identify the best ways to continue engagement beyond the Relay For Life event. L: Learn about the American Cancer Society s mission. We should directly connect community members touched by cancer with the mission that drives everything we do. Connect them with others in the community touched by cancer; encourage them to spread the word about Society programs and services; and rally those passionate about the cause to join their local Relay For Life event. A: Amplify the American Cancer Society through the caregiver s personal story. Help them share their personal story and its connection to the American Cancer Society and its mission. P: Promote fighting back against cancer by fundraising on a Relay For Life team. Encourage caregivers to take part by forming a Relay team or joining one to raise funds to support the Society s lifesaving mission. Being a caregiver can mean different things to everyone, so it s important to keep in mind that not every caregiver engagement activity will be meaningful to everyone, but everyone should have an activity that is meaningful to them. That is why providing a broad experience for caregivers at your local event is so important.

This guidebook will definitely assist Survivors and Caregivers Leads with their efforts, but it is meant for every Event Leadership Team member. Event Leadership Team members working on caregiver engagement are focused on: Ensuring participants understand what a caregiver is Providing meaningful engagement for all caregivers at the event Providing meaningful engagement for all caregivers throughout the year

Engagement Activities Before the Relay Event Local Event Leadership Teams work hard to plan and execute amazing Relay For Life event experiences for all participants. When planning your Relay event, consider the following to ensure that we engage caregivers throughout the event as well. Write invitations. Have survivors write personal invitations to their caregivers inviting them to the Relay For Life event. By providing survivors the opportunity and means (a postcard, template for an email, etc.) to send invitations to their caregivers, we re gaining a tremendous amount of help in recruitment. Encourage caregivers to volunteer on the Event Leadership Team. Though this is likely a practice most events already do, ask people to serve on the event leadership team AS a caregiver. This connects their tie to the mission with joining the Event Leadership Team. Promote caregiver involvement. Reach out to local clinics, hospitals, churches, and homecare agencies with information about how caregivers can get involved with the Relay For Life event and the American Cancer Society. Provide flyers or a signup sheet to collect contact information of those who are interested in getting involved. Encourage caregivers to share their stories. Highlight caregivers on local event social media pages using a hashtag such as #iamacaregiver. Feature different types of stories showing how many different experiences caregivers can have. Share the Relay For Life social media badges and social media timeline covers with caregivers associated with your event to utilize. Coordinate a caregiver community canvass day. Invite caregivers to canvass the community by sharing their story and asking people to get involved.

Engagement Activities at the Event Consider these ideas to help as you brainstorm all of the possible ways to engage caregivers through a meaningful experience at your Relay event. Host a fitness challenge. Host a nutrition and physical activity challenge for caregivers. Whether it is a Zumbathon, a Relay Race, or some other activity, create a challenge to get them up and moving. There are a lot of great opportunities to thank caregivers for taking care of others, and now it s time for them to take care of themselves. Coordinate a Road To Recovery derby race. This is a great way to combine a fun activity with spreading awareness about programs and services the American Cancer Society has to offer. Have caregivers create a Fred Flintstone-style car from a cardboard box, decorate it however they choose, and have a race around the track. Coordinate a caregiver garden or a Wall of Hope to show thanks and honor caregivers. The caregiver garden is an area where people can dedicate a pinwheel, and write the name of a caregiver on it. This garden provides a place for everyone at the event to honor caregivers. There are many versions of a Wall of Hope, but consider one where survivors can write notes to their caregivers, survivors can share their story, caregivers can write how they fight back, etc. Find something that is meaningful to those participating in your event and that will inspire others. Provide an avenue for caregivers to remember the reason for their passion. Have a memory table or tent at the Relay event where caregivers can bring photos of their loved ones touched by cancer. Incorporate a meaningful visual. Take blue and red water and pour it into a large clear container. When combined, they will create purple! This of creative ways to utilize this visual and make it impactful for your event by showing the importance of survivors (identified as red) and caregivers (identified as blue) together making an impact on the fight against cancer (purple). Hold a caregiver lap. Honor the caregivers at your event with this special recognition. Incorporate a caregiver speaker. Consider dedicating part of a ceremony to caregivers with a caregiver speaker. Involve them in the Luminaria Ceremony. Hand out blue glow sticks to all caregivers to remember the part they played in the life of someone who has been touched by cancer. During the Luminaria Ceremony, this effort will help caregivers to stand out and receive special recognition. This can be paired with giving survivors red glow sticks to remember that they had to fight back. Also consider having special luminaria bags for caregivers. These can be placed with other luminaria bags or placed in the bleachers to spell out HOPE or CARE. Present caregiver pins. Providing caregivers with this small token of recognition can go a long way. Consider including this during the opening ceremony, a special caregiver lap, or during the

survivor and caregiver reception. The Relay For Life of Douglas and Paulding County, GA shared the idea of reading the following script when providing the pins to the caregivers. These Hands Look at your hands (pause) It was these hands that cared for them. It was these hands that bathed (cleaned) them. It was these hands that fed them. It was these hands that worked tirelessly for them. Look at your hands. Now cross your arms (pause) (Make this very personal) It was your arms that lifted them. It was your arms that carried them. It was these arms that hugged them Yes! These arms. Now cross your arms over your heart (pause; do not rush) This is the heart that cared! This is the heart that shared. Yes! It was your heart that remained strong to help them through the fight Yes, it was your heart! Even though you grew weary, you remained strong because you had too just for them. Yes, it was your heart!

Best Practices for Engaging Caregivers Best Practice from the California Division: We purchased gifts like tea packets, instant coffee, and candy. We also made buttons that said #1 Caregiver, Thanks for caring!, etc. We assembled them beforehand and passed out all gifts at a local cancer center where we gave gifts to caregivers that were there with family or friends as well as the staff. They were so grateful for us brightening their day. Best Practice from the Eastern Division: We incorporated arts and crafts into our weekly meetings, and created holiday cards to be delivered to patients in local hospitals. We made sure to have extra cards to give to the oncology nurses, and also brought them baked goods to express our gratitude for their work. We made sure to include information about our Relay For Life event to the nurses so they could join us and possibly refer others to participate as well. Best Practice from the Florida Division: We created a Garden of Thanks. Each survivor wrote a thank you note on a paper flower to stick in the ground at the garden. Participants walked by the garden all night, and we received great feedback. The survivors were grateful that we have them an opportunity to brag about their caregivers. Best Practice from the High Plains Division: We held a caregiver bonding event in honor of National Caregiver Month (November). The caregivers loved the recognition and the opportunity to talk with other caregivers. Best Practice from the Lakeshore Division: Throughout the Relay season, we establish days to go into the communities and deliver a purple experience known as Paint The Town Purple. We visit schools, businesses, and other key community stakeholders providing them with purple materials to highlight the opportunity that the Relay For Life event brings to its community. During Paint The Town Purple, we set up a caregiver awareness table to provide clarity as to who is a caregiver. We asked people to sign a big poster with what it meant to be a caregiver or what they ve done for someone they know who was diagnosed with cancer. We were able to bring this poster with us to meetings throughout the year to remind us that caregivers do so many different things. Best Practice from the Midwest Division: We created a sunshine committee which sends thoughtful cards out to survivors who are currently going through treatment. We also send cards to their caregivers to let them know we are thinking about them too. We include information about the American Cancer Society in these cards so they know where they can turn if they need anything. Best Practice from the South Atlantic Division: We asked caregivers to join in us participating in the homecoming parade in town. Our caregivers walked the parade with a caregiver banner and handed out flyers with Relay event information on it.