Why is this research important?
Current sexual health education programs have failed to involve people with intellectual disabilities (ID) in the creation of these programs. Not including perspectives of individuals with IDs lowers the likelihood that the sexual education program will be effective at reaching them. This study aimed to assess the perspectives of youth living with ID by interviewing 20 individuals on specific sexuality topics such as sex education, relationships, sex, social media, parenthood, and support. Ten males and ten females participated. Their average age was 28.9 years. Participants were recruited through organizations that provide services to people that are diagnosed with having an ID. These semi-structured interviews identified gaps that exist in sex education programs for these youth. This article explores the importance of a “needs based assessment” through including perspectives of youth with ID in order to adequately fill the gaps that exist in today’s sex education programs.
Analysis of interviews revealed the following themes:
1. Low frequency of sexual education programs
All participants recalled receiving sex education once or twice in their lives. Most suggested that partaking in sex education was interesting, fun and nice. Many expressed that they would not be able to relay what they had been taught in previous sex education programs.
2. Knowledge regarding sexual education was limited to safer sex, contraception and sexually transmitted infections (STI)
When asked about safer sex, participants indicated that it meant having sex with a condom. The understanding of safer sex related to preventing pregnancy and disease. Some participants mentioned the birth control pill, but few mentioned female condoms, intra-uterine devices, and contraceptive injections. Participants were aware of STIs such as HIV and AIDS, but less frequently identified STIs such as Chlamydia, Herpes, Gonorrhea and Genital Warts. Through the interviews, it was obvious that there were gaps in understanding of broader sexual health topics like relationships, social media, parenting, and support.
3. Participant knowledge of safer sex does not always translate to safer sex behavior
Although participants were able to identify that safer sex involved sex with a condom, the understanding of “safer sex” was superficial. Incorrect or incomplete knowledge about contraceptives was present. Many participants were unsure whether the pill also provided STI protection and if a condom protects against STIs. Participants were also unsure whether a condom was necessary if a girl was on birth control or on her period. Some participants believed that you could only get an STI from a girl who slept with many boys. There was a gap in understanding of where people can get tested for STI and when a person should get tested.
4. Importance of relationships
Through the interview responses, it was clear that all participants expressed the importance of relationships. Many participants were already involved in relationships. Participants met their partners through the organization at which they live, at a discotheque, through a friend or family member, or online. Participants expressed interest in doing fun things with their partners, and in their partner’s personal traits rather than physical appearance or attraction. Many participants suggested that having a relationship was important to them mainly because they did not want to be alone. They wanted someone to share a life with and to be there for one another for support. Although some participants reported having had sex with partners, it was not always the most important part of having a relationship. Participants focused on the importance of love and respect in a relationship.
5. Gaps in knowledge of parenthood, social media, and where to get support
The majority of participants expressed the desire to have children. A few believed that they would be good parents. Some participants expressed concern regarding their ability to take care of a child.
The majority of participants used social media networks to connect and socialize with friends. Some used social network sites in attempts to find a partner. Some participants received negative messages or no response to messages.
All participants received some form of professional support. Some participants felt comfortable discussing questions about sexual health with their support provider, while others felt less comfortable. Some participants felt that they were not given enough privacy to have alone time with a partner in the presence of their support provider.
There is a clear need for high quality sex education that is developed with target groups in mind, especially when it comes to sex education programs for people with ID. This study and other literature suggests that completing a needs-based assessment by incorporating theory and evidence based frameworks, like “Intervention Mapping,” can help to address gaps in sexual health education topics like parenthood, social media, support, safer sex, and relationships. When programs are developed based on learner needs, and are frequently taught, it can lead to a more thorough understanding of sexual health and allow individuals with an ID to experience sexuality in a positive way.
Schaafsma, D., Kok, G., Stoffelen, J. M. T, & Curs, L. M. G. (2017). People with intellectual disabilities talk about sexuality: implications for the development of sex education. Sexuality and disability, 35(1), 21-38. DOI 10.1007/s11195-016-9466-4