Centering Voices: Sexual Health Education for Individuals with Intellectual and Developmental Disabilities Using a Social Cognitive Ecological Approach

Sexual health education for individuals with intellectual and developmental disabilities (IDD) remains limited, inconsistent, and often inaccessible, despite its critical role in promoting autonomy, safety, and well-being. Individuals with IDD frequently receive inadequate or delayed education shaped by stigma, systemic barriers, and discomfort among caregivers and service providers (Ballan, 2012; Schaafsma et al., 2015). These gaps reflect broader inequities in whose knowledge and experiences are prioritized in research and practice. Advancing rigorous, inclusive social work research requires centering the voices of individuals with IDD and their support systems.

Guided by Social Cognitive Ecological Theory (McLeroy et al., 1988), this study examines how individual, interpersonal, and environmental factors shape sexual health education access and experiences. An exploratory sequential mixed methods design is employed. In Phase I, focus groups with individuals with IDD, family members, and service providers explore needs, barriers, and preferred educational approaches. These findings inform the development of a Phase II survey to assess the prevalence and generalizability of identified themes.

Preliminary insights from early focus group transcripts indicate that individuals with IDD experience fragmented and incomplete sexual health knowledge, often relying on informal sources such as peers, family, and the internet. Participants express a clear desire for education, particularly related to safety and pregnancy prevention, yet demonstrate limited and inconsistent understanding of risk and consent. Relational values, including trust and emotional connection, are emphasized alongside barriers such as limited experience and difficulty forming relationships. Communication skills related to sex and consent remain underdeveloped, and participants prefer flexible, multimodal learning formats. These findings reflect a tension between emerging autonomy and insufficient educational support.

Provider perspectives highlight systemic and relational barriers. Although providers recognize the importance of sexual health education, discussions are often inconsistent or avoided due to family fears and unclear role expectations. Variability in training and preparedness influences provider engagement. Withholding education appears to increase reliance on informal sources and may elevate risk. Providers emphasize consent, boundaries, and safety, while noting that individuals with greater independence may face increased vulnerability. Organizational support is inconsistent, and providers advocate for standardized, developmentally appropriate education.

This study advances social work research by elevating marginalized perspectives and informing equitable, multi-level interventions. By integrating lived experience with theory-driven inquiry, it supports the development of inclusive sexual health education that promotes autonomy, dignity, and meaningful community participation.