Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer

Abstract

BackgroundChildren 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.ObjectiveTo redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer.MethodsA 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.ResultsChildren, 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.ConclusionsOverall, 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.

“Tell it as it is”: How Sisom prompts children and parents to discuss their cancer experience

“…Despite the extensive testing of Sisom in Norway, Sweden, and the United States, linguistic validation and usability testing for use within a Canadian context were warranted prior to implementing into practice . Preliminary work in Canada concurred with prior US findings that children with cancer like Sisom and would like to use the program to express their symptoms to their parents and clinicians in varying settings (eg, home, school, and hospital) . However, a potential barrier for implementation into varying settings is the types of questions, concerns, and comments that may unfold during usage due to breadth of Sisom questions asked to children including “ Afraid of maybe dying from my illness ?” .…”

“…This inherent system gap makes it difficult for children to communicate their needs to health care professionals . Additionally, efforts to actively engage children in discussions about their illness experiences in “traditional” conversations with health care professionals may be particularly challenging . These barriers may lead to certain symptoms going underdiagnosed and undertreated resulting in unnecessary suffering for the patient, which may contribute to work‐related stress for clinicians .…”

“…This tool was created to encourage children, aged six to 13, to actively participate in their own care building on previous research showcasing that their health information can be reliably and validly collected . Since the development, global research efforts have contributed to linguistically validating, testing the usability, optimizing the design, and evaluating the use of Sisom in practice …”

“…These findings are of significant importance because children's participation in their own health care is a fundamental right and Sisom may serve as a tool aimed to achieve this right for children. Efforts to ensure Sisom remain technologically relevant and promote widespread use resulted in a redesigned version (Sisom 2) aimed to better meet the needs of the children; a research effort led by Arvidsson et al in Sweden . The Swedish team is now evaluating the process of implementing Sisom in four pediatric care centers in three different hospitals with 46 children with varying conditions, their parents, and health care professionals…”

A Web-Based Interactive Tool to Reduce Childhood Obesity Risk in Urban Minority Youth: Usability Testing Study (Preprint)

“…Usability testing is a crucial step in the development of online health tools to ensure that they are accessible, understandable, and useful to end users, and are delivered in an efficient, effective, satisfying, and culturally-competent manner [42]. Although several studies have emphasized how usability testing can improve technology-based tools [43,44,45], there is limited research detailing usability testing methods for mHealth tools with youth users [46]. This lack of published studies regarding usability testing with youth suggests that health promotion webbased tools are being developed without formal involvement or evaluation by potential users, which can impact their potential usefulness and effectiveness.…”