I’m going to tell you a little about myself: Illness centrality, self-image and identity in cystic fibrosis

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Patient Family & Community Engagement
Hope for Healthcare
Members of The Beryl Institute’s Global Patient and Family Advisory Board wish you happy holidays. As 2024 draws to a close, we asked our members to jot down their hopes for healthcare as we welcome the upcoming new year. Tony Serge: My hope for healthcare is for leadership, providers, and staff to work together with
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Patient Family & Community Engagement
Adolescents with Cystic Fibrosis Expressing their Possible Selves through Photovoice: a Longitudinal Interpretative Phenomenological Analysis to Prepare a Peer Support Intervention for Healthcare Transitions
While the transition from pediatric to adult care has become a field of study and practice focused on preparing the adolescent to “become an adult with a chronic condition”, we are conducting participatory research to develop, implement, and evaluate a peer-support intervention aimed at supporting transition from pediatric to adult care for adolescents living with
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Patient Family & Community Engagement | Staff & Provider Engagement
Co-Creating Change Using Storytelling
During this webinar members of the Global Patient and Family Advisory Board (GPFAB) will demonstrate how telling stories instead of creating guidelines for healthcare professionals will improve patient outcomes. The GPFAB has created a unique storytelling guide that will help healthcare professionals understand the principles of sharing patient/care partner lived experience through storytelling and how
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