Grant: Planning and Dissemination Grant - Institute Community Support

We are conducting a study with patients who experience kidney graft loss and their family caregivers to better understand their needs and their perspective on how care could be improved. We would like to use audio-storytelling as a medium to share the findings from our study. Specifically, we propose to create a four-part podcast series that tells the stories of patients and caregivers. These stories can be used to guide future research and education about the kidney graft loss, as well as offer validation and coping strategies for patients and caregivers. Our proposed podcast series is envisioned as a teaching and training tool to better understanding illness from the patient's perspective, which is an important part of setting a patient-centered research agenda and developing better models of patient-centered care. The educational potential of stories is widely recognized. Storytelling generates knowledge based on lived experience. It is difficult to address gaps in care without having a clear understanding of the lived experiences of patients and family caregivers. Each podcast episode will feature stories that illuminate complex and challenging themes that can inform quality patient-centered care, as well as showcase personal narratives that represent a diversity of perspectives, including from under-represented groups. Podcasts are an accessible and effective medium of communication and sharing knowledge in all subjects, including science and health, and can reach multiple audiences. We will publish our podcast on a podcast hosting platform and publicize it through social media relevant to the kidney transplant community, with the aim of engaging patients and caregivers, clinicians, researchers and other stakeholders, as well as the public. We believe that the inclusion and dissemination of patient voice is a foundational aspect of research and care practice improvements.