Multidisciplinary Partnerships in Action: Co-Designing an Online Resource for Endometriosis-Related Sexual Pain
CANSAGE ePoster Library. Ghafoor A. 09/27/19; 279824; eP-142
Aziz Ghafoor
Aziz Ghafoor
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Abstract
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Objectives: To co-develop an online platform for people with endometriosis-related sexual pain with patients, clinicians, and researchers. This online platform will help patients understand their condition, feel empowered, and find validation, thus improving well-being and quality of life.
Methods: Using a knowledge-to-action framework, we conducted stakeholder focus groups to determine the appropriate audience, content, key messages, and mood for the online platform. Second, we evaluated existing online resources specific to endometriosis-related sexual pain for readability, suitability, and quality using the eHealth tools SMOG, JAMA benchmarks, SAM and DISCERN. Finally, we developed the content for the online platform informed by principals of user-centred iterative design.
Results: Preliminary evaluation of existing online resources suggests limited content specific to pain and endometriosis. We developed an inclusive online platform for a diverse audience related to age, ethnicity, gender identity, relationship status, sexual pain experience, and endometriosis diagnosis. Content reflected plain language explanations for the types of sexual pain, pain mechanisms, management and treatment options. Hope, de-stigmatization, empowerment, and connectedness were conveyed through short text, images, and design.
Conclusion: This platform will assist patients with the management of endometriosis-related sexual pain and empower them to engage in conversation with their healthcare provider. The platform is also useful for healthcare providers who are looking for a comprehensive patient-friendly resource to assist their patients in understanding endometriosis-related sexual pain and treatment options. Further research is planned to evaluate the utility of the site for patients and healthcare providers as well as identify opportunities for growth.
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