Date Presented 03/26/20
This mixed-methods study utilized quantitative and qualitative data, with a constant comparative and simple thematic analysis, to describe current sexual-health-education practices for individuals with IDD, as well as to identify the gaps, barriers, and recommendations for sexual-health education. The results of this study indicate the need for a collaborative approach to providing sexual-health information and describe OT’s role.
Primary Author and Speaker: Elizabeth Schmidt
Additional Authors and Speakers: Natalie Robek, Megan Dougherty
Contributing Authors: April Horstman, Amy Darragh
PURPOSE: Sexual health is a fundamental human right, which includes the right to sexual identity, expression, and activity. Individuals with intellectual and developmental disabilities (I/DD) also have this right, yet face disparities in accessing sexual health information. Barnard-Brak et al. (2014) report less than half of those with intellectual disability and only 16% of those with moderate to profound ID received sexual health education (SHE). The purpose of this study was to identify the gaps, barriers, and recommendations to facilitate access of sexual health information among individuals with I/DD.
DESIGN: This study utilized a mixed-methods approach, analyzing both quantitative and qualitative data to understand the gaps, barriers, and recommendations for SHE. All applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during this research.
METHOD: Quantitative methods included a sexual health knowledge questionnaire, the General Sexual Knowledge Questionnaire (GSKQ) that was completed with individuals with I/DD. Qualitative methods included a grounded theory study design using constant comparative analysis to understand the gaps, barriers, and recommendations. A simple thematic analysis was also utilized to identify specific learning modalities recommended for formal, comprehensive SHE for this population.
RESULTS: Eight individuals with I/DD (ages 15-24 years), nine parents of individuals with disabilities, eight educators, and twelve health providers were included in this study. Diagnoses included Down syndrome (n=1), autism spectrum disorder (n=5), Prader Willi syndrome (n=1), and intellectual disability (n=1). Two major themes emerged regarding current SHE practices for individuals with I/DD: There is a (1) shared responsibility to provide SHE, and (2) SHE occurs through naturally occurring educational opportunities. The results of the GSKQ revealed a wide range of knowledge in the area of sexual health. Adolescents understood the least about pregnancy and reproduction (x=42%), contraception (x=37.5%) and sexually transmitted infections (x=45.3%). This was consistent with what stakeholders reported. There were many gaps and barriers identified that contributed to current SHE practices, including: (1) parental characteristics, (2), general characteristics, (3) embarrassment, (4) a lack of organizational policies and/or standards and (5) limited professional education. And finally, three themes emerged regarding stakeholders’ recommendations for an improved, accessible SHE. They recommended a (1) proactive and formal education (2) provided by multiple stakeholders and (3) that education should be repeated over time. Simple thematic analysis identified videos, visuals, universal design for learning and direct, explicit instruction as the primary methods to improve accessibility of SHE. Also, of note, adolescents and young adults with I/DD describe a significant need to address negotiation skills during comprehensive sexual health education.
CONCLUSION: Current trends in the media and the disability rights movement, as well as significant safety concerns, emphasize the importance of addressing sexual health for individuals with I/DD. The results of this study indicate the need for a collaborative approach to providing sexual health information, including negotiation skills to promote healthy relationships. Occupational therapy practitioners are well suited to address this need. Finally, these results call for improved sexuality education for health professionals, such as occupational therapy practitioners, to reduce disparities among individuals with I/DD and to improve their sexual health (Eglseder & Webb, 2018).
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.
Eglseder, K. & Webb, S., (2018). Sexual Functioning in Occupational Therapy Education: A Survey of Programs. The Open Journal of Occupational Therapy, 6(13), 1-16.
