Linguistic Validation of an Interactive Communication Tool to Help French-Speaking Children Express Their Cancer Symptoms

Abstract

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.

“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) .…”

“…Following institutional review board (IRB) approvals from the study sites, a secondary analysis of two qualitative descriptive studies was conducted . The sample consisted of children who participated in the linguistic validation and usability testing of Sisom . Participants were recruited from three university‐affiliated health centers located in two major urban Canadian cities.…”

“…Data were collected in the context of children linguistically validating or testing the usability of Sisom, requiring children to use Sisom. When children log onto Sisom, they are first prompted to create an avatar representing themselves (Figure ).…”

“…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 …”

“…Recognizing the important role parents may play to help children, an in‐depth exploration of these questions, concerns, and comments arising during the testing was warranted. Thus, the purpose of this secondary analysis of two qualitative data sources was to describe what questions, concerns, and comments unfolded between children and their parents during the children's use of Sisom within a research context …”