The creative writer generated five stories based on her interviews with the parents/caregivers of 10 children presenting to the ED. The five stories were designed to characterize different experiences and cover a range in terms of severity of illness and socioeconomic considerations (e.g., single mother, adolescent mother, Aboriginal background).
The initial written feedback fell into four main categories: 1) overall concept; 2) format and presentation; 3) specific story content; and, 4) medical/health information. Reviewers generally liked the concept of the story booklets and found the project to be interesting and innovative. However, reviewers questioned the specific purpose of the stories (e.g., comfort parents, impart knowledge) and the target audience (i.e., child vs. parent).
Regarding the format, reviewers felt the stories were too long, the language was too advanced for an average reader, and some sentences were complex and awkward. Reviewers liked the illustrations but commented that the font was too small and the titles were "blasé" and did not reflect the main content of the stories. Two reviewers wanted more character development (e.g., more dialogue or more of the characters' thoughts) and more details about the characters and social context. One reviewer commented on the fact that the main character in each of the stories was the mother which may not accurately reflect current parenting roles. Overall, the reviewers found the stories to be engaging largely due to the ability of the writer to capture the parents' emotions.
Several comments were made regarding specific aspects of the stories. For instance, one story described an infant having an x-ray:
"Jimmy had never had an x-ray before, and Diane was not prepared for what she saw. Her heart broke as staff stripped her baby naked and strapped him onto a board which would hold him in place for the x-ray. Though the technicians were very careful with him, Diane was disturbed to see Jimmy crying in the brace. She knew the x-ray was important, but it was the hardest thing she had ever seen as a mom."
Three reviewers found this description to be too harsh and graphic; however, one reviewer thought it was important to prepare a parent for what they might experience. Some incongruencies were noted in the stories (e.g., a 13-month-old being transported in an infant car seat). One reviewer couldn't identify with the main character from one of the stories and another reviewer did not find the introduction to one story captivating; hence, the motivation to read and ability to engage in these stories was compromised.
The final group of comments related to the medical and health information provided in the stories. Reviewers generally wanted as much information as possible about medical procedures and practices and considered the stories to be an excellent potential source of medical advice for parents. Reviewers wanted medical terminology to be explained (e.g., epinephrine mask, dexamethasone) and cautioned against inconsistent use of terminology (e.g., dexamethasone vs. steroid).
Based on this feedback, the stories were substantially revised and reduced from five to three while capturing many of the events and the tone of the original stories. The revised stories were written using simpler language and sentence structure. The revised stories had a Flesch-Kincaid Grade Level Score of 6.2 indicating that a sixth grader (based on US school grade level) could understand them. The three revised stories each reflected a different severity of croup and different healthcare experiences: the mild case was managed at home; the moderate case was seen in the ED and discharged home; and, the severe case was hospitalized for two days. The main characters in the three stories reflected different demographics (e.g., married, single, male, female).
The results of the focus groups were categorized as: 1) general perceptions of the stories; 2) content and emotional by-products of the stories; 3) preferences; and, 4) graphics, layout, and illustrations. The focus group participants were generally very positive about the booklets; however, one participant expressed concerns about the expense of the story booklets and potential wastefulness of healthcare dollars. The participants found the graphics and layout to be visually appealing. They found that they could identify with the stories and that it was easier to get information from the stories compared to a typical information sheet from the ED. The participants suggested that the developer, or sponsor, of the story booklets be more visible to enhance credibility of the content of the books.
Regarding the content of the stories, the participants generally found the stories interesting, engaging, and easy to read. They found that the stories resonated with them and "matched" their personal experience. They found the information to be very helpful and appreciated the suggestions in the stories, specifically how to cope with having a child with croup. The participants found the stories to provide comfort and emotional reassurance. They commented that explaining the rationale for treatments would be useful (e.g., why cold air helps). The participants highlighted some errors (e.g., use of term web browser rather than search engine, inconsistencies in facts presented at the back of the books, typographical errors).
One issue relating to story content generated much discussion and consideration: in one of the stories, the parents did not take the child to the ED but managed the child's symptoms at home based on information they found through the internet. The participants suggested providing in the story booklets a list of recommended websites or information on how to evaluate websites and whether they are a trustworthy source of information.
The focus group participants highlighted several preferences. The parents generally preferred one story as they found they could relate most to this story; in their words, they saw themselves in the story. They appreciated the fact that the story was written in the first-person mode as this format held their attention better. The participants appreciated having a father as the main character in one of the stories and the fact that he accessed the internet for information. Finally, the participants liked the "catchy" titles of the stories.
We found little guidance in the literature in terms of presentation styles (e.g., size and placement of illustrations, font size and colour, other layout considerations, shape and size of booklets); hence, the information gained from the parent focus groups was very informative. The focus group participants found the presentation of the booklets soft and eye appealing. They enjoyed the variety in the illustrations (e.g., some full page, some half page). The participants all preferred the booklet that was the same shape and size as many children's books and considered this as a positive feature. The participants felt that the illustrations could appeal to both adults and children, thereby serving as a method for parents to explain to their child what may happen in the ED. The participants enjoyed the illustrations and the colours used throughout the books; however, in one case the use of different coloured font for portions of the text created confusion for the reader regarding what was or was not important to read.
We revised the story booklets based on the focus group feedback and presented the final products at a national conference of pediatric emergency clinicians and researchers. The primary question for this group was how to package and disseminate the story booklets. The general consensus was to provide the three booklets to parents in a single package. We developed a folder for this purpose which held the three booklets.