Mitigating stuttering self-stigma: How do we start and where do we go? Using a Participative Concept Mapping Approach to develop a local framework of principles

Purpose

This study aims to create a stigma reduction framework for stuttering in the local context of Québec, Canada using the Participative Concept Mapping Approach (PCMA), focusing on both self and societal stigma.

Method

Employing a mixed-methods approach, this study engaged 17 experts—people who stutter, clinicians and health innovation specialists—in PCMA workshops. Via diverse steps, including generation, sorting and rating of ideas in response to the focus prompt, "To effectively address stuttering (self-)stigma, an intervention should…" these sessions led to a framework depicted in visual maps, then refined into actionable principles through qualitative analysis. Mixed-methods data analysis used the open-source R-CMap software to generate visual maps illustrating the relationships among ideas as well as importance and feasibility ratings.

Results

The collaborative workshops identified 95 ideas in response to the focus prompt, reunited in 7 clusters, evolving into 16 principles to mitigate stuttering stigma and self-stigma. At the therapy level, these principles emphasize personalized therapy, thorough assessments, stigma-free therapeutic environment, empowerment, and the importance of group inclusivity and educating the relational circles. Societally, they advocate for initiatives such as improved educational outreach, empathy enhancement, and better representation. This dual approach targets individual experiences and societal views on stuttering, stressing the need for an all-encompassing intervention framework.

Conclusion

The findings demonstrate PCMA's usefulness in crafting local, culturally sensitive, tailored interventions for stigma reduction. The study emphasizes the necessity of holistic approaches that address individual experiences and societal perceptions, offering a model to conduct similar exercises in diverse local settings.