I love it when research gets translated into practice. This guest post by Aimee Hildenbrand, BS & Meghan Marsac, PhD shows a great example. Aimee is a doctoral student at Drexel University and a clinical research assistant at the Center for Injury Research and Prevention at The Children’s Hospital of Philadelphia (CHOP). Meghan is a pediatric psychologist and the center’s Director of Training.
While children with cancer and their families are often resilient, the invasive and painful medical procedures, emotions, and changes to daily life that come with illness can be overwhelming. In fact, children with cancer frequently consider treatment to be more traumatic than cancer itself, underlining the need for comprehensive medical care that incorporates psychosocial services. However, supportive care tools tailored to the experience of childhood cancer and its treatment are limited.
To help address children and caregivers’ need for emotional support during pediatric cancer treatment, our team at The Children’s Hospital of Philadelphia developed the Cellie Cancer Coping Kit (Cellie Kit). The Cellie Kit is designed to be used by children aged 6–12 years and their parents to promote coping and decrease distress related to treatment. It provides evidence-based, cognitive-behavioral coping techniques (e.g., relaxation, social support seeking) for a range of stressors, including procedures (e.g., needles, chemotherapy), emotions related to cancer and treatment (e.g., sadness, anxiety), treatment side effects (e.g., nausea, hair loss), and challenges related to school and peers.
In addition to ensuring the Kit was evidence-based, our team put a lot of thought into the design and name of the Cellie toy. Cellie is designed with a neutral facial expression so that children can project the feeling of their choice onto the toy. To encourage engagement with the toy, the eyes are human shaped and the size is huggable. The “H” shape allows for small hands to easily grab onto Cellie. The initial Cellie name was chosen because the first version of Cellie was a cancer cell. As we changed the toy to a more neutral object to encourage bonding, we reached out to our patients for ideas for new names. Our patients were very creative suggesting names such as “Mr. Zippertown” and “Barfy.” In the end, most children responded well to the Cellie name, so we decided to keep it.
The Cellie Kit includes the following:
- Cellie is a stuffed toy used for engagement and integrated within some of the coping tips. For example, one of the tips on the “I don’t like needle sticks” cards suggests looking at and squeezing Cellie until the poke is over.
- The Cancer Coping Cards are a set of 30 cards which provide kids with over 100 tips for dealing with cancer-related stressors such as medical procedures, hospital visits, and feelings of fear and uncertainty.
- The Caregiver Book offers tips for parents to help children with cancer cope, as well as advice for dealing with parents’ own cancer-related challenges (e.g., caring for siblings, working with the medical team).
Our research showed that the Cellie Kit is a promising tool for children with cancer and their families. In the process of developing and refining the Cellie Kit, we conducted two studies to evaluate this tool. Although relatively small samples (n = 15 families/study), these studies suggested that the Cellie Kit has the potential to help fulfill specific needs for families and medical teams. The results indicated that:
- Children and their parents found the Cellie Kit engaging and helpful. Specifically, children and families reported that the Cellie Kit was relevant to their cancer experience, comprehensive, and easy to use.
- The Cellie Kit helped families learn new information (e.g., identifying normative reactions) and skills (e.g., implementing deep breathing and distraction coping strategies) for dealing with cancer, its treatment, and medical procedures.
- The Cellie Kit helped improve communication between parents and children about cancer-related challenges.
- Families were able to use the Cellie Kit independently, with minimal outside support from the health care team.
See the research paper featuring the Cellie Kit for more detailed information about study methods and results. You can also learn more about the Cellie Kit by reading the CHOP Research Institute 2012 Annual Report or a family’s personal story about using the Cellie Kit, and/or by viewing a presentation for patients and families about how to use the Cellie Kit.
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.
Of note: Meghan is a co-inventor of the Cellie Cancer Coping Kit. The Children’s Hospital of Philadelphia and she have filed a patent for the kit and may benefit financially from it. The toy has been designed by Anne Vinsel.