Abstract
BACKGROUND: Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a "traditional" conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym "Si det som det er" or "Tell it how it is") is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a "voice" in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. OBJECTIVE: To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. METHODS: A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children's views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. RESULTS: Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. CONCLUSIONS: Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.