Date Presented 04/8/21
This study describes the results of usability testing of activities designed to address the gaps and barriers to sexual health education (SHE) for clients with intellectual and developmental disabilities (IDD). Recommendations from stakeholders were incorporated, and the feasibility of a 5-week SHE program was evaluated. OTs can use the results of this study to address significant sexual and reproductive health disparities currently faced by individuals with IDD.
Primary Author and Speaker: Elizabeth Koss
Additional Authors and Speakers: Yong-Fang Kuo, Kenneth Ottenbacher
PURPOSE: Sexual health is a fundamental human right, which includes the right to sexual identity, expression, and activity. Yet, people with intellectual and developmental disabilities (I/DD) face disparities in sexual and reproductive health (SRH) outcomes, including increased rates of sexual abuse and assault (Jones et al., 2012), sexually transmitted infections (STIs; Mandell et al., 2008), and limited access to SRH information (Barnard-Brak et al., 2014). Occupational therapy practitioners (OTP) have a significant role in promoting the SRH of their clients with I/DD. Specifically, OTPs can address participation in the ADL of sexual activity, social participation, and educational participation including sexual health education (SHE; AOTA, in press). Therefore, the purpose of this study was to: 1) identify the gaps, barriers, and recommendations for SHE; 2) develop and test the usability of activities that address the gaps, barriers, and incorporate recommendations; and 3) assess the feasibility of a five-week SHE program using these activities.
DESIGN: This study utilized a mixed-methods approach to understand the gaps, barriers and recommendations for SHE with 39 participants from four stakeholder groups: healthcare providers, educators, parents, and individuals with I/DD. Educational activities that were recommended were developed and/or sourced from available materials and assessed for iterative usability testing among seven participants with I/DD and two educators. The feasibility of recruitment, data collection, and treatment protocol was assessed for a five-week, community-based SHE program with seven participants with I/DD. All applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during this research.
METHODS: Focus groups and interviews were conducted with all stakeholder groups and analyzed using a constant comparative method to identify gaps and barriers and a thematic analysis to identify recommendations. The UUD data was analyzed using item-level analysis and medians for each domain to determine overall acceptability for each activity. A content analysis was used to identify recommendations to improve domain-specific data dependent on UUD data. The SocioSexual Knowledge and Attitudes Assessment Tool-Revised (SSKAAT-R), interviews and exit surveys with participants, and focus groups with research staff were utilized to assess feasibility.
RESULTS: Participants reported four major barriers: parental characteristics, general characteristics, lack of organizational policies/standards, and limited professional education supporting SHE. These barriers contributed to SRH knowledge gaps in pregnancy, reproduction and family planning; contraception; and STIs. Recommendations included using a proactive, continuous and formal SHE provided by multiple stakeholders. Educational activities included participants' recommendations for videos, visuals, the use of Universal Design for Learning, and explicit instruction. After four iterations, all activities were found to be acceptable. These activities were incorporated into the SHE program, which was found to be feasible in recruitment (90%), retention (77.8%), attendance (97%), and assessment completion rates (pretest = 77.8%, posttest = 100%).
CONCLUSIONS: The findings support the role of OTP in providing SHE and the use of these activities, now freely available online, for clients with I/DD.
IMPACT STATEMENT: The Disability Rights Movement, and significant SRH disparities, emphasize the importance of addressing SRH for individuals with I/DD. OTPs can use this research to address this need through the development of SHE amongst individuals with I/DD.
References
Barnard-Brak, L., Schmidt, M., Chesnut, S., Wei, T., & Richman, D. (2014). Predictors of Access to Sex Education for Children With Intellectual Disabilities in Public Schools. Intellectual and Developmental Disabilities, 52(2), 85–97. https://doi.org/10.1352/1934-9556-52.2.85
Jones, L., Bellis, M. A., Wood, S., Hughes, K., McCoy, E., Eckley, L., & Officer, A. (2012). Prevalence and risk of violence against children with disabilities: A systematic review and meta-analysis of observational studies. The Lancet, 380(9845), 899–907.
Mandell, D.S., Eleey, C.C., Cederbaum, J.A., Noll, E., Hutchinson, M.K., Jemmott, L.S., Blank, M.B. (2008). Sexually transmitted infections among adolescents receiving special education services. Journal of School Health, 78(7), 382-388.
American Occupational Therapy Association (in press). Occupational therapy practice framework: Domain and process (4th ed). American Journal of Occupational Therapy.
