Akademik Veri Yönetim Sistemi
BMC Pediatrics, cilt.25, sa.1, 2025 (SCI-Expanded, Scopus)
Background: Pediatric glaucoma is a rare but vision-threatening condition requiring complex, lifelong management. While clinical outcomes have been well-documented, little is known about the lived experiences of families navigating this condition, particularly in middle-income countries. This study aimed to explore how parents in Turkey experience and navigate the diagnosis, treatment, and ongoing care of a child with pediatric glaucoma. Methods: We conducted a qualitative exploratory study using semi-structured interviews with parents of children diagnosed with pediatric glaucoma in Turkey. Twenty-two parents (17 mothers, 5 fathers) representing 20 children with various forms of pediatric glaucoma participated. Participants were recruited through pediatric ophthalmology clinics, social media, and snowball sampling. Interviews were conducted remotely, audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Six major themes emerged: (1) Diagnosis Journey: Shock, Confusion, and the Search for Answers; (2) Treatment Burden: Managing Complex Care Regimens; (3) Navigating the Healthcare System: Structural Barriers and Facilitators; (4) Impact on Family Life: Adjustments, Limitations, and Emotional Tolls; (5) Coping and Resilience: Finding Strength Amid Challenges; and (6) Unmet Needs and Recommendations for System Improvement. Parents reported significant geographical disparities in access to specialist care, substantial financial burdens despite universal health coverage, and lack of psychological support and Turkish-language information resources. Parents demonstrated remarkable resilience through peer support networks, religious faith, and sophisticated medication management strategies, but identified critical gaps in the healthcare system that impeded optimal care. Conclusions: Pediatric glaucoma affects not only vision but all aspects of family life, including finances, sibling relationships, and parental wellbeing. Findings highlight the need for family-centered care models that address both clinical and psychosocial dimensions of pediatric glaucoma. Implementing teleophthalmology services, developing regional expertise through hub-and-spoke models, integrating psychological support, and creating accessible educational resources in Turkish could significantly improve family experiences. This first qualitative study from Turkey provides insights relevant to other middle-income countries with similar healthcare systems.