Development of a storytelling communication facilitation tool (SCFT) to facilitate discussion of complex genetic diagnoses between parents and their children: A pilot study using 22q11.2 deletion syndrome as a model condition.

Objective: To develop and evaluate a storytelling communication facilitation tool designed to help parents overcome barriers to discussing a complex multisystem genetic diagnosis with their affected children, using 22q11.2 deletion syndrome (22q11DS) as an exemplar condition. Methods: A story telling communication facilitation tool (SCFT), entitled 22q and Me, was developed for a target audience of children with 22q11DS aged 9 to 12. The SCFT was evaluated by 14 parents to assess usability and utility by comparing responses to survey questions before and after viewing the SCFT, using a Likert scale. Results: After viewing 22q and Me, parents reported that barriers to discussion were mitigated. Participants indicated they felt more comfortable and better prepared to talk to their children about 22q11DS and worried less that the diagnosis would affect their children's self-esteem. Parents described 22q and Me as engaging and able to address parental concerns. Conclusion: 22q and Me was found to be an effective tool for increasing parental comfort and ability to talk to their children about their diagnosis of 22q11DS. Innovation: This novel storytelling communication facilitation tool can serve as a model for the development of other educational tools geared at facilitating disclosure and discussion of other genetic conditions.

Piloting The CARD™ System for education of students about vaccination: Does it improve the vaccination experience at school?

OBJECTIVE: Many students are fearful of vaccine injection-associated pain. In prior research, we created Knowledge Translation (KT) tools to address school vaccinations and associated pain, fear, and fainting. The objectives of this pilot implementation project were to determine the acceptability and impact of these KT tools on student knowledge, attitudes, and perceptions of their vaccination experience. METHODS: Pre-post mixed methods design. Students in an independent school in the Greater Toronto Area, Ontario, participated in two separate focus groups before and after school vaccinations. In both sessions, they independently completed a knowledge and attitudes survey, reviewed three KT tools (two videos and one pamphlet) and then repeated the knowledge and attitudes survey. They provided structured and qualitative feedback about the KT tools and described the impact of the education on the vaccination experience. RESULTS: Altogether, 11 grade 7 students participated. Knowledge scores were higher post-tool review compared to baseline in the first focus group. There was no significant difference in fear scores and attitudes about getting vaccinated. Qualitative feedback was categorized into two themes: intervention characteristics and characteristics of the school environment. Students reported the KT tools helped them to prepare for vaccination. They used the information on vaccination day to reduce their own fear and pain and to assist peers. They believed all students should view the KT tools. Students reported that teachers and nurses did not do enough to make vaccinations a positive experience. For example, they did not provide a private setting as an option for vaccination and prevented them from using some coping strategies recommended in the KT tools. DISCUSSION: This study provides preliminary evidence of the acceptability and positive impact of the KT tools on students' vaccination experiences. Future research is recommended that involves inclusion of all students and adults in the KT intervention.