Stakeholder Perspectives on the Responsible Innovation in Health Framework for Addressing Stigma-Based Health Inequalities Among People Who Stutter
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Published on: June 6, 2020
Sébastien Finlay1,2, Geneviève Lamoureux1,2, Anne Moïse-Richard1,3
1School of Speech-Language Pathology and Audiology, Université de Montréal, Montreal, Quebec, Canada.
Objectives:
People who stutter (PWS) experience stigma-based health inequalities that can negatively impact their quality of life. Yet, few interventions in the literature are explicitly designed to address these systemic disparities. The Responsible Innovation in Health (RIH) framework offers a promising foundation for developing health innovations that are equitable, sustainable and contextually responsive. This study explores how stakeholders interpret and apply the RIH framework to envision interventions that reduce stigma and promote health equity for PWS.
Methods:
Using a mixed-methods design, namely the Participative Concept Mapping Approach, stakeholders (PWS, clinicians, health innovators) participated in a workshop to generate, sort and rate ideas based on their importance and feasibility. Concept maps were used to analyse and categorize ideas thematically.
Results:
Stakeholders generated 94 ideas across six clusters as follows: (1) Digital Technology and Video Media, (2) Collective and Professional Approaches, (3) Cost and Accessibility, (4) Inclusive and Sustainable Intervention Design, (5) Engaging Multi-Modal Approaches and (6) Flexibility. The environmental responsibility value of the RIH framework received limited focus. Discrepancies between the importance and feasibility of ideas highlighted challenges in implementing interventions, while ensuring their sustainability.
Conclusion:
This study demonstrates how stakeholders prioritize values of the RIH framework when envisioning stigma-reducing health innovations for PWS. Findings highlight the need for embedding sustainability within clinical practices and underscore the importance of patient and user feedback to bridge the gap between impactful concepts and practical solutions, ensuring that interventions are meaningful, feasible and grounded in the RIH values.
What This Paper Adds:
What is already known on this subject Stuttering is associated with stigma-based health inequalities that extend beyond speech, impacting PWS across multiple domains of life. Research has documented the effects of stigma on quality of life, access to care and communicative participation for PWS. However, frameworks to guide the development of interventions that explicitly address these structural inequities remain limited. What this paper adds to existing knowledge This study is the first to explore how the RIH framework can inform the design of stigma-reducing interventions tailored to stuttering. Through participatory concept mapping with PWS, clinicians and health innovators, it identifies how RIH principles, such as inclusion, sustainability and responsiveness, can shape context-specific, equity-oriented innovations that reflect the lived experiences of PWS. What are the potential or actual clinical implications of this work? Applying the RIH framework to stuttering interventions offers a novel approach for promoting health equity in both clinical and community contexts. This study highlights the importance of co-designing interventions with stakeholders, grounding them in the lived experiences and priorities of people who stutter. It sets the stage for developing sustainable, meaningful and inclusive practices that respond to the complex realities of stigma in stuttering.
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