Liz: My interest in sexual health promotion started on a fieldwork when I was at the Rehab Institute of St Louis. All of the occupational therapists provide sex education for people after injury specifically after spinal cord injuries. This was further supported by a personal interest of people in my life who had intellectual and developmental disabilities and did not receive an adequate sexual education. Some of who those people are now living with some of the consequences for that. This is where my research interest in this area began.
I would like to start off by giving you all a little bit of background, especially since many of you have been working in different areas and may or may not have worked with people with intellectual disabilities specifically or developmental disabilities (IDD).
- Increased risk for sexual abuse 1-4
- Decreased sexual health knowledge 5-7
- Significant disparities in cancer screenings and preventative reproductive health care access 8
- Family’s need support15
Individuals with intellectual and developmental disabilities are between four and eight times at greater risk of sexual abuse, compared to people without intellectual disabilities. There have been a variety of studies that have looked at this specifically, and no matter where we are looking, all of the rates are incredibly high for this population. This is a very scary thing to hear. It obviously indicates that there is a need for better education and information for these individuals.
We also know that they have decreased sexual health knowledge in general. The literature shows that people with intellectual and developmental disabilities have a reduced knowledge as compared to those without intellectual and developmental disabilities in the area of sexual health, specifically in the area of reproduction, pregnancy, and consent, or knowing when to say no. There was one study that asked individuals with intellectual and developmental disabilities what they were allowed to say yes or no to and what was okay or not okay. The results were quite surprising. This is definitely an area where we can address and help promote safe sexual health.
We also know that there are significant disparities in cancer screenings and preventative, reproductive healthcare access. We are unsure about what the rates of sexually transmitted infections truly are because we are not sure that people with intellectual developmental disabilities are being tested and screened at the same rates. We conducted a retrospective analysis of privately insured individuals with intellectual and developmental disabilities and compared them to a matched control cohort for age and sex. We found that, although people with intellectual and developmental disabilities were less likely to have a sexually transmitted infection, the rates of testing and screening were also significantly lower for people with intellectual and developmental disabilities as compared to the matched cohort, or those without an intellectual or developmental disability. This was particularly alarming because it was specifically the age groups, ages 15 and 24 years, that are at the highest risk of contracting a sexually transmitted infection. We know on a population level that these are the individuals that are most likely to have sexually transmitted infections, including HIV AIDS. For individuals without IDD to not be tested at that same rate is definitely alarming.
We also know that families need support. There is a lot of literature that demonstrates families are interested in learning more and want their child to learn more. Family caregivers were less confident in discussing sexuality than service providers, and there were statistically significant correlations between family caregivers' confidence and their likelihood to actually discuss sexuality. So because they are not confident, they are less likely to provide that information to their child. Additionally, families report that they think the school is or will take care of sexual health education for their child. They are assuming that the school will be providing this information and think they do not need to. There is one study that shows that of all people with mild intellectual disability, only about 50% of them are receiving sexual health education, and of those with a more significant intellectual disability, only 16% report receiving sexual health education. This is a huge discrepancy when we look at other studies that show that 98.5% of high school students reported receiving sexual health education.
Background Sex Ed
Additionally, I want to give a little bit of background about what sexual health education looks like.
Comprehensive Sexuality Education
- Starts in Kindergarten and continues through 12th grade
- Includes age-appropriate, medically accurate information on a broad set of topics related to human development, relationships, personal skills, and sexual behaviors
- Explores attitudes and values
- Skill development
There are a variety of different types of sexual health education programs. A comprehensive sexuality education should start in kindergarten and continue throughout high school. This should include age-appropriate, medically accurate information on a broad set of topics related to human development, relationships, personal skills, and sexual behaviors. These programs should explore attitudes and values with a judgment-free approach and should promote skill development.
Abstinence-Plus, -Based, -Focused, -Centered programs
- Focuses on the benefits of abstinence
- Typically include information about sexual intercourse, contraception, and disease-prevention methods
We also have abstinence-plus, -based, -focused, or centered programs that focus specifically on the benefits of abstinence, but typically include information about sexual intercourse, contraception, and disease prevention methods as well.
Abstinence-Only and Abstinence-Only-Until-Marriage Programs
On the other end of the spectrum, we have abstinence-only or abstinence-only until marriage programs. Abstinence-only programs emphasize abstinence from all sexual behaviors and an abstinence-only until marriage emphasize abstinence from all sexual behaviors outside of heterosexual marriages. They use a fear-based approach and focus on failure rates of contraception or disease prevention methods.
- Research 9-10
- Abstinence-only and abstinence-only-until-marriage programs are NOT effective.
- No evidence supporting these programs in delaying sexual intercourse.
- In a review of 13 abstinence-only programs:
- All failed to lower the STD rate,
- Lower the rate of pregnancy,
- Or significantly impact the number of students engaging in vaginal sex.
If anyone is familiar with the public health literature, we know that those fear-based approaches typically do not work. When we look at the research surrounding these different programs, it is not surprising to see that the abstinence-only and abstinence-only until marriage programs are not working. There is no evidence that these programs delay sexual intercourse, and in a review of 13 abstinence-only programs, all of them failed to lower the STI rates or sexually transmitted infections. They all failed to lower the rate of pregnancy and or significantly impact the number of students that reported engaging in vaginal sex.
- Comprehensive sexual education is EFFECTIVE in:
- Delaying initiation of sexual intercourse,
- Reducing the frequency of intercourse,
- Reducing the number of partners,
- And increasing condom or contraceptive use!
- Comprehensive sexual education is EFFECTIVE in:
On the other hand, the comprehensive sexual education program is working. It is delaying initiation of sexual intercourse, reducing the frequency of intercourse and the number of partners, and then also increasing condom or contraceptive use for those who are sexually active. A lot of these outcomes are measured through a subject report. There are some biases that are there for these outcomes, but those are typically what we see. There are limited options for true quantitative methods and objectives to understand the outcomes based on the nature of the topic.
- Gold Standard13
- Anatomy and physiology
- Puberty and adolescent development
- Pregnancy and reproduction
- STI & HIV/AIDS
- Healthy relationships
- Personal safety
What is a comprehensive sexual health education? The Sexual Information Education Council of the United States met with a variety of stakeholders (educators, parents, teens, physicians, and all sorts of people) to come together to set the minimum requirements for something to be considered comprehensive. This includes the topics of anatomy and physiology, puberty and adolescent development, identity, pregnancy and reproduction, sexually transmitted infections and HIV AIDS, healthy relationships, and personal safety. Personal safety includes identifying and preventing harassment, bullying, violence and abuse, and including but not limited to, sexual abuse. This can include a large variety of safety concerns.
Before we talk more about OT's role in this field and promoting safe sexual health, I would like to switch over to a poll and see what you all think is occupational therapy's role. Some answers are:
- Safe positioning and heart precautions
- Assisting with an understanding of safe protection
- Promoting safety and self-actualization
- Education of personal safety and anatomy
- Safe practices, education, safety in education
- Education on all components of physical, emotional and mental as well as compensatory techniques.
These are great examples. We focus both on the safety and the health pieces. There is a lot involved in sexual health education. Before we jump into talking more about our practice framework and all of the different ways that we can be involved in promoting safe sexual health, I want to also talk a little bit, about the Disability Movement.
Background: Disability Movement
- Human-rights focused, not limitations focused8,14
- Individuals with disability have the same rights to sexual expressions as those without disability
- This framework suggests that adults with ID be supported in accessing opportunities for consensual sexual expression if they desire to do so8, 14
- However, direct support workers, parents, and caregivers often do not have the training to assist people in positive sexuality14-17
The Disability Movement is human rights focused not limitations focused. For those of you who have heard the phrase, "Nothing about us without us," that is a part of this movement. Individuals with disability have the same rights to sexual expression as those without a disability. This framework suggests that adults with an intellectual disability be supported in accessing opportunities and for consensual sexual expression if they desire to do so. However, as we talked about direct support workers, parents and caregivers often do not have the training to assist people in positive sexuality or do not feel confident in their roles. So that is why we are here today.
For these next few slides, I am going to go through the different areas of our practice framework and talk about how specifically OT can be involved in promoting safe sexual health.
OT's Role: Areas of Occupation
1. Activities of daily living
“Engaging in activities that result in sexual satisfaction and/or meet relational or reproductive needs”
2.Formal education participation
- School settings: State by state policies, review your School Health Advisory Committees policies
- Outside of the schools: Informal personal educational needs or interest exploration
- Interactions with peers and friends, which is defined by: “engaging in activities at different levels of interaction an intimacy, including engaging in desired sexual activity”
In our activities of daily living section, we have engaging in activities that result in sexual satisfaction and or meet relational or reproductive needs listed as an ADL. To me, this is the biggest evidence that this is something that OT should be involved in. This is something that we should be asking our clients about and where we can offer support and strategies to help promote safe sexual engagement as it is considered an activity of daily living.
We can be involved through formal education participation. This includes the school setting. It is important to know what your state's policies are and to review your school health advisory committees before actively getting involved in this area. If your school has a sexual health education program, you may be able to use a push in model to support individuals with IDD that may or may not be able to understand the material in the same way as it is being presented to the whole class.
Additionally, we can be involved outside of the schools through informal personal educational needs or interests exploration. This is an area that I have been actively involved in. I do many groups for individuals with IDD in various settings on sex education. We will talk a little bit more about how to get involved in something like that coming up in the next few slides.
Finally, we can also look at social participation. This is interactions with peers and friends which is defined by engaging in activities at different levels of interaction and intimacy, including engaging in a desired sexual activity. We see specifically sexual satisfaction and desired sexual activity coming up multiple times in our areas of occupation and practice framework.
OT's Role: Client Factors
We can also address client factors that are associated with safe and satisfying sexual activity.
- Don’t make assumptions about what your client engages in, who they are engaging with, or how they engage in sexuality
- Sensory considerations
- Musculoskeletal considerations
- Mental considerations (cognitive, perceptual)
Understanding and respecting your client's values, beliefs, and spirituality are really important. This is something that I like to point out in all of my talks. We do not want to make any assumptions about what our client is engaging in, who they are engaging with, or how they engage in sexuality. It is important to ask open-ended questions so that we can understand what our client needs our support in, and that we are not making assumptions about, an elderly woman who we may not, think she's engaging in sexual activity when really she is and she has concerns in this area but does not know how to bring it up or we do not want to make assumptions that somebody is engaging in hetero, normative sexual activity when they may or may not be. This is an important consideration that we want to think about when we are asking these questions in our occupational profile.
We can address body functions and structures and look at sensory considerations. This is particularly important for our folks with autism. We also can address musculoskeletal and mental considerations. I think most of you mentioned these two areas in the poll. These are definitely areas where we can be involved, and they are sometimes are a little bit more straightforward.