Document Type : Original Article
Authors
1
PhD student in Information Science and Epistemology, Faculty of Gholum Anshani, North Tehran Azad University, Tehran, Iran
2
Islamic Azad University, Yadegar-e Emam-e Shar Rey, Tehran, Iran
3
Professor Tamma, Director of the Department of Information Science and Knowledge, Azad University, North Tehran Branch, Tehran, Iran
4
a, Professor, Azad University of Science and Research, Tehran, Iran
10.48305/him.2026.46121.1385
Abstract
Objective: Epidermolysis bullosa (EBL) is a chronic and debilitating disease that affects the quality of life of patients and their families. Public libraries can play an effective role in empowering these patients by providing access to health information and social support. This study aimed to explain the dimensions of empowerment of EBL patients in public libraries. Method: The study was conducted with a qualitative approach and content analysis. Data were collected through semi-structured interviews with 24 participants including physicians, health workers, health librarians, and patients / families and analyzed with MAXQDA 2020 software. Findings: The findings were presented in two sections: First, the needs of patients, the capacities of public libraries, and the network of supporting stakeholders were identified.Then, a three-layer conceptual model was developed in which the public library, as a communication hub, links patients' needs to specialized capacities and support networks. Conclusion: Public libraries, by synergizing services, technology, and support networks, can help to sustainably empower and improve the quality of life of patients with EP. Keywords: Public libraries, epidermolysis bullosa, EP, patient empowerment, health information, quality of life
Keywords
Subjects
Health Information Management