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Study

Why the eSCCIP study?

The study team has decades of research and clinical experience with families of children with cancer.  We know that: 

  • Parenting and caring for a child with cancer can be scary, tough, and upsetting.
  • Families are resilient. They often navigate their cancer journey with remarkable strength. 

We hope to provide you with new coping tools and tips if you choose to participate in our study.

How did the eSCCIP study get started? 

The study team has supported families of children with cancer for the past several decades. Their research started with the Surviving Cancer Competently Intervention Program (SCCIP, pronounced skip). Children with cancer, their parents, and their siblings navigated their experiences in SCCIP groups. Over time, the team developed versions of SCCIP for individual parents and families. Parents and families gave positive feedback on SCCIP.  But attending in-person groups can be challenging. The team wanted to make SCCIP available to more people. 

In 2015, Dr. Kimberly Canter joined the research team. She led the development of the Electronic Surviving Cancer Competently Intervention Program (eSCCIP).  eSCCIP is delivered online to help more people access the program. CopingSpace is the other program in this study. It is also delivered online. Families impacted by pediatric cancer designed CopingSpace.  

What is the eSCCIP study? 

The eSCCIP study includes two web-based (online) programs. Study participants are assigned to either eSCCIP or CopingSpace. Both programs are based on information and strategies shown to work.

Both programs are for families who have a child diagnosed with cancer. The skills presented can help families at any point in their journey (from diagnosis through years after treatment ends). Enrolling in the study may help you gain new coping skills as you navigate your child’s journey with cancer.

Participants use their assigned program for about six weeks. They complete online assessments at three time points:

  • after they join the study
  • after six weeks
  • after three months

Gift cards are provided to participants as a thank-you for their time to complete the online assessments.

What are the eSCCIP programs? 

The two programs are CopingSpace and eSCCIP. Study participants are assigned to one of the two programs at random. It's like flipping a coin.

Both programs are web-based (online) and will help participants learn:

  • Strategies for coping with childhood cancer
  • Strategies for supporting you as you navigate your child's cancer journey

CopingSpace Education Website uses:

  • Self-guided information to read and reviewed at your own pace

eSCCIP Program Website uses:

  • Four interactive, self-guided Cores containing information and activities
  • Emails and other reminders to complete Cores and activities
  • Three video calls with a Coach to review Core activities

Participants may sign in and use their assigned website as often as they want.

Am I eligible to join the study? 

You are eligible to join the study if you:

  • Are a parent or primary caregiver of a child younger than 18 years old with cancer 
  • Have a child who is currently being treated for any type of cancer, or who is up to one year off treatment
  • Have regular access to the Internet at least once per week
  • Have a computer, tablet, or phone with internet access or are willing to use a device supplied by the study
  • Are willing to check your email for reminders to complete activities and assessments
  • Can speak and read English or Spanish

How might I benefit from being in the study? 

You may or may not benefit from being in this study.  

Possible benefits include learning strategies to cope with your child’s cancer.

Will I get an incentive for being in the study? 

You will get up to $40 in gift cards for completing online assessments through the website:

  • 6-week follow-up: $30 gift card
  • 3-month follow-up:  $10 gift card

How is my privacy protected? 

The research team is committed to protecting participant privacy. Your privacy is protected by the following:

  1. The information you submit is stored on a secured server. Servers meet Health Insurance Portability and Accountability Act (HIPAA) Privacy Rules.
  2. The eSCCIP study is on servers maintained by IT staff at the University of Virginia. The IT staff assesses network structure to make sure the latest security technology software is used.
  3. Only authorized research staff have access to these servers. Access to your data is limited to researchers directly involved with eSCCIP. All research staff has completed Institutional Review Board (IRB) training.
  4. eSCCIP has been reviewed and approved by the IRB at all involved sites. The IRB at MD Anderson Children's Cancer Hospital is the primary IRB for this study. Nemours Children’s Health, Children’s Hospital Los Angeles, and the University of Virginia IRBs have agreed to rely on the primary IRB. Federal regulations regarding human research studies require this. The primary role of the IRB is to protect the safety and welfare of human participants.