Background

After a cancer diagnosis, it can be difficult to know what’s next, what support is needed, and where to turn. As we learned in our Barriers to Support study, young adults often lack experience and awareness about what it means to have cancer, and they don’t know what they don’t know. Without the experience and resources to help them effectively communicate and seek/offer support following a diagnosis, support needs can go unmet, leading to isolation, loneliness, poor quality of life and worse health outcomes. A recent study showed that approximately two out of every three young adult cancer patients have experienced non-support and can recall someone in their life who they expected would provide support but never did (Ray, 2023).  

The Support Starter Kit program is focused on addressing these challenges by providing a timely and tangible set of resources that encourage connection between patients and supporters early in the process and emphasize the importance of social support when AYA cancer awareness is low, but the support needs and social network willingness to support is high. 

Approach

In 2023, b-present convened four AYA community innovation meetings with survivors, supporters, researchers, and health professionals to discuss the Support Starter Kit concept. We posed the question, “If we could give young adult patients and supporters a box to help them stay connected, navigate cancer together, and kickstart support, what would we include, and how might the program be structured?” The results of these working sessions, combined with the findings of our Barriers to Social Support study and feedback from our Supporter Roadmap, form the basis of the Support Starter Kit Pilot Program described herein. 

Support Starter Kit Pilot Program Overview

Thanks to the generous support of the I’m Not Done Yet Foundation, the Support Starter Kit Pilot Program launched April 1, 2024 in conjunction with AYA Cancer Week. The goal of each box is to bring color and hope during a difficult time and empower and inspire patients and supporters to stay connected and thrive.

We  assembled 50 curated boxes (25 for patients and 25 for their designated supporter) to be shipped to our partner hospitals for distribution to patients. Since this is the very first edition of the box, we are seeking feedback from the recipients to understand if/how the box was helpful and how we can improve the experience and future editions of the box. 

Box Type and Distribution Process

As noted, there are two distinct boxes. While some resources are the same, some are curated or written specifically for either the patient or supporter. All boxes are yellow with the b-present logo on the front.

• Patient Box (aka Moxie Box): Designated by a yellow sticker on the right-hand side of the box with MB-XXX. The sticker sealing the box says, “Stronger Together.” We named it the Moxie Box because moxie, by definition, means the ability to face difficulty with spirit and courage.” 
  • View short video of contents here
• Supporter Box (aka Rally Box) is designated by a yellow sticker on the right-hand side of the box with RB-XXX. The sticker sealing the box says, “Support Squad.” We named it the Rally Box because rally, by definition, means to bring or come together in order to support a person.
  • View short video of Rally Box contents here

IMPORTANT: When distributing boxes to patients, please provide them with one of each type of box, and make sure the 3-digit number for each matches. For example, the patient will receive MB-025, and their designated supporter box will be RB-025.

Other helpful information about box distribution:

• Recipients are 18+ for this pilot program. We will expand age for future versions.
• Select patients who are likely to participate in the survey since this is a critical part of the pilot program.
• Patients can select any person important to them to receive the Rally Box, including but not limited to a friend, sibling, partner, etc. We are assuming that, for this pilot program, the recipient is a young adult and local to the patient. Future versions will allow for shipping to other locations.  Please note  the box numbers and when the boxes were distributed so that b-present has visibility into this information for the pilot program’s accountability.

What’s in the Box?

Each pilot program box includes helpful resources, tips, keepsakes and some fun items and activities for the patients and supporters to inspire connection and support.

Items in the box include:

• Welcome letter  designed by Chelsey Gomez of @OhYoureSoTough)
• b-present Supporter Roadmap with worksheets and guides highlighting connection and support topics 
• Elephants and Tea Magazine: Friendship Edition
• Bestie Bucket List Activity Planner and Memory Maker
• Affirmation cards designed by Chelsey Gomez and b-present
• String lights with photo clips 
• Stationary to be shared when the moment feels right:
  • Empathy postcards
  • Notecards
  • Fill in the love books
  • Bestie vouchers
• Kendra Scott friendship bracelets 
• Notepads for when the right words are hard to find
• Phone timeout pouch – a fun way to help connections be distraction-free
• $25 Uber/UberEats gift card
• Conversation starter cards
• Friendship bracelet making kits 
• Friendship Bingo activity cards

What feedback are we looking for?

We recognize that patients and supporters are busy early in the diagnosis timeline, just getting through the day. We have tried to structure the feedback process to make it as simple as possible while still being helpful for future versions. Each participant will be compensated for their time with a $50 eGift Card.

• Feedback Goals – Assess the efficacy of providing tangible resources early in the diagnosis timeline to both patients and supporters
• Data collection includes :
  • Number of kits distributed + Demographic info about recipients (age, experience with cancer, patient or supporter).
  • How/when the kits were used, what was helpful/not helpful
  • 3 Surveys (Day 0, Day 15, Day 30) to measure baseline and progress towards improved support
    • Day 0 (Baseline): patient perceived support / supporter proficiency 
    • Day 15 (Update) – Supporter report on what/when/how kit materials were used,  motivation, efficacy, etc; patients provide ratings on support quality, consistency, etc
    • Day 30 (Update)  – Supporter report on what/when/how kit materials were used, motivation, efficacy, etc; patients provide ratings on support quality, consistency, etc
  • How kits improved supporter’s understanding about how to support and whether that led to patient perception of improved support.
  • General Feedback on kits, delivery, timing, data collection, and other program processes to help better meet patient and supporter needs and improve support starter kit experience.

What is the time commitment for the feedback surveys?

If the recipients choose to participate (although we hope they will, it is not mandatory), they will complete 3 short surveys over the month following their receipt of the box. Listed below are the timeframes and estimated time to complete each survey. Feel free to click on each link to see the contents of the survey. If you have any questions or feedback, please contact us. 

• Survey 1 – Complete within the first week of receiving the box (time: < 5 minutes) 
• Survey 2 – Complete 15 days after receiving the box (time: <10 minutes)
• Survey 3 – 30 days after receiving the box (time: <15 minutes)

Recipient Privacy / Opting In

Their privacy is important to us, and all data we collect is anonymous (you can click on the survey links above to see the survey questions). Recipients will acknowledge they are opting in and provide an email address to receive survey reminders and their e-gift card. They will not receive any other emails unless they subscribe via our website. As noted above, each kit has a unique ID number.  That ID number is used when filling out each survey. Their name and email will not be associated with the survey data and summary results.

Additional Questions and Comments

Please feel free to contact us anytime with questions or feedback.