# Shifting participatory approach when ideology meets reality: a grounded theory study based on project leaders’ experiences with peer-led sex education programs for and by persons with intellectual disabilities and/or autism

## TL;DR

This study explores how Swedish NGOs implement peer-led sex education for people with intellectual disabilities and autism, identifying three distinct approaches used by project leaders.

## Contribution

The study introduces a conceptual model based on grounded theory, revealing how ideology and practical realities shape peer-led sex education programs for individuals with ID/ASD.

## Key findings

- Three approaches were identified: Radical, Pragmatic, and Skeptical, each reflecting different balances between empowerment and practical constraints.
- The Radical approach aligns with Freirean pedagogy, emphasizing liberation and inclusivity.
- The Skeptical approach reflects doubts about the feasibility of norm-challenging peer-led education for individuals with ID/ASD.

## Abstract

This study explored peer-led sex education for individuals with intellectual disabilities and/or autism (ID/ASD) from the perspective of project leaders within Swedish non-governmental organizations (NGOs). The purpose of this Grounded Theory study was to develop a conceptual model that characterizes the ways in which peer-led sex education is implemented by Swedish NGOs. This was done by exploring what the concept of peer-led sex education means to NGO project leaders, and how they experience, explain and reason about the application of peer education in their daily operations.

This study conducted 12 qualitative in-depth interviews with project leaders working with peer-led sex education initiatives. Grounded Theory enabled the construction of a conceptual model.

The study identified the core category, "Shifting participatory approach when ideology meets reality," encapsulating project leaders’ experiences in managing peer-led sex education programs. Three distinct approaches were discerned: (1) The Radical approach, where project leaders prioritize empowerment and norm criticism, striving to create an inclusive and equitable environment for individuals with ID/ASD. This approach resonates with Paulo Freire's pedagogy of the oppressed, emphasizing liberation through education. (2) The Pragmatic approach, which navigates the tension between ideology and pragmatism, recognizing the co-dependency between project leaders and persons with ID/ASD. External pressures from funders and the requirements to achieve tangible project outcomes inform this approach. (3) The Skeptical approach, which exhibits caution, doubting the capabilities and willingness of individuals with ID/ASD to challenge societal norms and work equally with people without ID/ASD.

The findings underscore the complexity of peer-led sex education programs and highlight the need for a balanced approach that addresses both ideological aspirations and practical constraints. Empowerment and norm criticism are central to fostering agency and challenging oppressive systems. However, the pragmatic realities of project management and external pressures necessitate a delicate balance. Understanding these diverse approaches can inform the design of more effective initiatives, ultimately contributing to sexual and reproductive health and rights of individuals with ID/ASD.

This study is about sex education for and by people with intellectual disabilities and/or autism (ID/ASD). This research focuses on peer education programs managed by Swedish non-governmental organizations (NGOs). Through interviews with the program project leaders we discovered that they use three main approaches (1) A Radical Approach that emphasizes empowering peer educators with disabilities as well as challenging societal norms. The aim is to create an inclusive environment where everyone's voice is heard. Here inspiration is drawn from Paulo Freire's idea of using education to liberate and empower marginalized groups. (2) A Pragmatic Approach which tries to find a balance between ideals and the practical demands of running a program and where the need to meet specific goals and fulfill the requirements of funders is recognized. (3) Finally, a Skeptical Approach which is marked by caution and skepticism. In this approach there is uncertainty about whether participants with ID/ASD can challenge societal norms effectively. Awareness of the limitations when running projects with people with intellectual disability may lead to prioritizing stability over empowerment. In conclusion, running peer-led sex education programs for people with ID/ASD is not straightforward. Balancing empowerment and practicality is challenging. Understanding these different approaches can create more effective programs that empower individuals while addressing real-world constraints. Future research should involve the perspectives of peer educators and program participants for a comprehensive view of these programs’ impact and challenges.