Year: 2024
Type: conference-paper
Abstract: This work demonstrates how and why the expertise of non‐medical actors, such as patients, caregivers, and patient advocacy groups, is essential for improving patient outcomes and quality of life. ‘Vernacular’ knowledge, including community beliefs, values, networks, and practices, both challenge and collaborate with institutional scientific knowledge. The value of this interaction of multiple kinds of knowledge is illuminated through a study of spinal muscular atrophy in Colombia, which explores how mother caregivers develop unique expertise, devices, and care practices, and use online social networks to share and learn both clinical and vernacular information. Supported by a broad body of evidence and theory, this paper makes a powerful case for elevating vernacular knowledge and the people and communities who practice it. It also showcases methods and channels that researchers and medical professionals can use to collaborate with caregivers in these non‐institutional, but medically essential, spaces.
DOI: 10.1111/epic.12211
Author: JULIANA SALDARRIAGA
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: hybrid
OpenAlex ID: W4407381121