The Trisomy 21 (T21) Program at Children’s Hospital of Philadelphia (CHOP) assessed the need and priorities for educational programming about relationships and sexual health for teens aged 12-17 with T21. REDCap software was used to collect anonymous electronic survey results from 49 parents (quantitative data) and from 7 healthcare professionals (qualitative data). Using SPSS statistical software, univariate frequencies were calculated for interactions between teens and their parents, providers, or schools. Chi-square analyses identified differences by gender, age, or having older siblings. Means and frequencies described parent preparedness and prioritized topics for a curriculum. Two independent reviewers identified themes and sub-themes from the qualitative data. Curricula topics were prioritized by tallying keywords. Parents and professionals agreed the most important topic to cover is personal skills. Overall, healthcare professionals feel parents are ill-prepared to discuss relationships with their child with T21. Parents self-reported a mean preparedness score of 51.89 (out of 100), indicating that most parents were not prepared to talk about relationships and sexual health with their teen. Being female or having older siblings increased the likelihood of parents initiating discussions about sexual health with their teen. Many professionals stated they do not discuss relationships and sexual health, which was confirmed by 85.4% of parents reporting their child’s provider has not discussed relationships or sexual health. As far as school inclusion in health education, only 39% of parents knew if their child would be included in school-based sex education, and only 25% of those parents thought their child would understand the information. Most professionals believe TV/media are teens’ primary information sources. To best help teens with T21 attain and maintain healthy relationships, the team should develop an educational program focused on building personal skills, providing parents with adequate resources, and ensuring that clinicians discuss relationships and sexual health with the teens.
Presentation: 20 minutes
Palmer, Kristy, "Informing the Content Development of a Relationship Curriculum for teenagers with Trisomy 21: A survey of parents and healthcare professionals" (2014). Master of Public Health Capstone Presentations. Presentation 129.