Volume 25, Issue 99 (1-2026)
refahj 2026, 25(99): 0-0 |
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Ethics code: IR.QOM.REC.1404.004
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Ebrahimi Varzanh L, Fathi E. (2026). The Lived Experience of Caregivers of Butterfly Patients: A Phenomenological Study. refahj. 25(99), : 7
URL: http://refahj.uswr.ac.ir/article-1-4454-en.html
URL: http://refahj.uswr.ac.ir/article-1-4454-en.html
Abstract: (9 Views)
Introduction: This phenomenological study explored the lived experiences of caregivers of individuals with Epidermolysis Bullosa (EB) in Iran, focusing on the associated challenges, needs, and meanings.
Method: Data were collected through semi-structured interviews with 11 EB caregivers.
Findings: The analysis yielded five core themes: (1) navigating social exclusion amid public ignorance; (2) enduring emotional and psychological challenges in family adaptation; (3) redefining family roles and caregiving dynamics; (4) utilizing support mechanisms and social resources; and (5) confronting economic and educational pressures as structural barriers.
Discussion: The findings underscore how public unawareness and negative societal attitudes exacerbate patient isolation, while robust social and familial support can improve their quality of life. This study highlights the urgent need for comprehensive interventions, including public awareness campaigns, targeted financial and social support systems, tailored educational programs, and the active involvement of counselors and support communities to foster disease acceptance and mitigate loneliness among both patients and their caregivers.
Method: Data were collected through semi-structured interviews with 11 EB caregivers.
Findings: The analysis yielded five core themes: (1) navigating social exclusion amid public ignorance; (2) enduring emotional and psychological challenges in family adaptation; (3) redefining family roles and caregiving dynamics; (4) utilizing support mechanisms and social resources; and (5) confronting economic and educational pressures as structural barriers.
Discussion: The findings underscore how public unawareness and negative societal attitudes exacerbate patient isolation, while robust social and familial support can improve their quality of life. This study highlights the urgent need for comprehensive interventions, including public awareness campaigns, targeted financial and social support systems, tailored educational programs, and the active involvement of counselors and support communities to foster disease acceptance and mitigate loneliness among both patients and their caregivers.
Article number: 7
Type of Study: orginal |
Received: 2025/04/8 | Accepted: 2025/12/10 | Published: 2026/01/27
Received: 2025/04/8 | Accepted: 2025/12/10 | Published: 2026/01/27
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