Networked Individualism and Personal Learning Networks (PLN): The Self-Directed Learning Journey of Endometriosis Patients

The purpose of this study was to explore the informal learning experience and the personal learning network, or PLN, developed as women learn about endometriosis online. Of the seventy participants who completed the online recruitment survey, fifty were qualified, and nineteen were selected using purposeful sampling to participate in this interview research design study. After interviews were transcribed, Activity Systems Analysis guided the coding process using the qualitative analysis software, NVivo. Two Activity Systems were identified throughout the endometriosis patient's learning journey to describe the two phases of the journey. During Phase One: Discovering Endometriosis, patients focus on determining what is wrong with them. During Phase Two: Exploring Endometriosis, patients focus on learning about the disease, treatment options, and providers. Patients unknowingly create a Personal Learning Network (PLN) throughout these two phases for informational and emotional support. Patients report learning most from other patients and endometriosis surgeons (people) on social media platforms (spaces) from patient stories, shared research, and referrals to specialists (tools). Patients often self-regulate their learning and use Networked Knowledge Activities (NKA). Throughout the two phases of their learning journey, patients use their PLN to learn how to advocate for themselves, improve their physical pain, better communicate with doctors, locate endometriosis specialists, feel validated and empowered, and realize they really are not crazy after all.