While children with cancer are resilient, the treatments, procedures and changes to day-to-day life they experience can be overwhelming.
In an anonymous survey, parents expressed the ongoing challenges of cancer treatment:
"More emotional support [is] needed! The lives of families [of children with cancer] are changed forever and there is an ongoing struggle emotionally as well as physically.”
“There needs to be more [resources] focusing on the emotional aspect of a cancer diagnosis and how to ‘deal’ with it. My son has been in treatment for 2.5 years and I can honestly say that there are times where I am still as devastated by what is happening as the day he was diagnosed.”
Because of the challenges that children with cancer and their families face, the Institute of Medicine recommends that clinicians and hospitals provide evidence-based supportive care and tools to help families address the consequences of pediatric cancer. Availability of supportive care tools tailored to the experience of childhood cancer and its treatment is very limited.
To help address children and caregiver’s need for more emotional support and the call for tools for families, researchers at The Children’s Hospital of Philadelphia translated evidence-based, cognitive-behavioral coping techniques into an engaging, developmentally targeted tool: the Cellie Cancer Coping Kit (Cellie Kit). The Cellie Kit is designed to be used by children age 6 to 12 years and their parents. It adds to the range of coping strategies that help children and families deal with the physical and emotional aspects of cancer diagnosis and treatment.
The Cellie Kit includes a stuffed toy named Cellie, cancer coping cards and a companion book for caregivers. Cellie’s zippered mouth holds the deck of coping cards where children will find more than 100 tips for dealing with cancer-related stressors, such as medical procedures, hospital visits and feelings of fear and uncertainty.
Research shows that the Cellie Kit is a promising supportive tool
After conducting two studies from July 2010 to July 2011, researchers found that the Cellie Cancer Coping Kit has the potential to help fulfill a specific need for families and medical teams.
Key study results indicate that:
- Children and their parents find the Cellie Kit engaging and helpful. Specifically, findings showed that the Cellie Kit was relevant to families’ cancer experience, comprehensive and easy to use.
- The Kit helped families learn new skills (such as deep breathing, implementing distraction, and identifying normative reactions) for dealing with cancer, its treatment and medical procedures.
- The Kit helps improve communication between parents and children about challenging cancer-related experiences.
- Families are able to use the Coping Kit independently, with minimal outside support from the healthcare team.
Two studies answer researchers’ questions about the Cellie Kit
To learn if the Cellie Kit was an appropriate and helpful tool to offer to children and families dealing with cancer diagnosis and treatment, researchers at CHOP conducted two studies.
The goal of Study 1 was to determine the acceptability of the Cellie Kit by answering these questions:
- Is the material in the Cellie Kit relevant to the cancer experience of children and their parents?
- Is the Cellie Kit comprehensive?
- Are the Cellie Kit materials understandable for children and their parents?
- Is the Cellie Kit engaging?
The goal of Study 2 was to determine the feasibility of the Cellie Coping Kit by answering these questions:
- How do families use the Cellie Kit during cancer treatment?
- What do children and parents learn from the using the Cellie Kit?
- What gets in the way of families being able to use the Cellie Kit?
To answer these questions, researchers conducted two studies using interviews and questionnaires to gather information from a total of 30 children and 34 of their caregivers.
What researchers learned about the Cellie Cancer Coping Kit
Is the material in the Cellie Kit relevant to the cancer experience of children and their parents?
Most parents (93 percent) found the Cellie Kit was relevant to their families’ cancer experience. For example: “Most everything [in the Cellie Kit] is the same as the things that are happening ... I thought it only happened to [my child], that she’s nervous and scared about [her] treatment.”
Is the Kit comprehensive?
The Cellie Kit was found to be comprehensive by study participants, addressing their varied questions, concerns and challenges. Additional material was added to the Cellie Kit following Study 1 resulting in approximately 150 unique strategies for handling cancer-related distress.
Are the Kit materials understandable for children and their parents?
Most children could understand the material on the coping cards without assistance. Children in the youngest age range (6 or 7 years old) or with cognitive impairments may need extra help. Parents understood Cellie Kit materials and noted that they were able to use the materials without additional assistance.
Is the Kit engaging?
Most families found the Cellie Kit engaging, with children liking that the Cellie Kit was made specifically for children with cancer. For example, one child stated “Cellie’s the bomb … it helps me a lot.” Parents appreciated that the material in the Cellie Kit was evidence-based.
How do families use the Kit during cancer treatment?
Overall, families used the Cellie Kit to:
- Learn about normal reactions to cancer and its treatment
- Learn new ideas for coping
- Initiate conversations
- Help their children have fun
- Promote emotional expression
- Offer general comfort
What do children and parents learn?
Most families reported learning new information and/or skills from using the Cellie Kit. For example, families learned how to better communicate about cancer-related stressors, breathing techniques and distraction. One parent noted, “[The Coping Kit] helped him formulate questions so [that I could] understand exactly what he was looking for.”
What gets in the way of families being able to use the Kit?
Potential barriers to using the Cellie Kit include:
- Soft toy limitations during parts of treatment (e.g., bone marrow transplant)
- Remembering to bring the Kit to the clinic/hospital
- Keeping track of its components
- Disinterest in the Cellie toy
- Time limitations
Ways that cancer treatment centers can address these barriers include keeping a Cellie Kit on hand in case the child forgets his or her Kit, working with children to learn to use the Cellie Kit during appointments to make implementation practical, and using the cards and book without the Cellie toy.
See the research paper featuring the Cellie Coping Kit for detailed study methods and results. Read more about this research in The Children's Hospital of Philadelphia Research Institute 2012 Annual Report.
Next steps for the Cellie Cancer Coping Kit
In the future, researchers might examine:
- How useful the Coping Kit is across a wider range of families over a longer time period.
- Whether the Coping Kit is useful in achieving desired outcomes — improving coping skills, improving quality of life, and reducing cancer-related distress.
- If the Coping Kit is more or less effective depending on how it is used, for example, by parents and children independently versus integrated into medical or psychosocial care by oncology teams.
Marsac ML, Hildenbrand A, Clawson K, Jackson L, Kohser K, Barakat L, et al. Preliminary data on acceptability and feasibility of the Cellie Cancer Coping Kit. Supportive Care in Cancer. Epub 2012 May 10. doi: 10.1007/s00520-012-1475-y. Cited in PubMed; PMID 22572922.
Marsac ML, Hildenbrand AK, Jackson L, Barakat L.P, Alderfer MA. The Cellie Cancer Coping Kit: acceptability, feasibility, and initial outcomes [presentation]. Midwest Regional Conference in Pediatric Psychology; 2012 Apr 26-28; Milwaukee, WI.
Marsac ML, Hildenbrand AK, Kohser K, Banerjee L, Barakat L, Alderfer MA. Promoting adjustment to pediatric cancer: initial development of an innovative, developmentally sensitive tool. In: Kassam-Adams N, chair. Traumatic stress, coping, and health outcomes in children facing medical events. Symposium conducted at the International Society for Traumatic Stress Studies 27th Annual Meeting; 2011 Nov 3-5; Baltimore, MD.
Marsac LM, Banerjee L, Barakat LP, Kohser K, Hildenbrand AK, Clawson K, et al. Initial development of an innovative tool to enhance adaptation to pediatric cancer [poster presentation]. National Conference in Pediatric Psychology; 2011 Apr 14-16; San Antonio, TX.