Navigating hope and complexity: Turkish parents’ experiences with savior siblings

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dc.authorscopusidVedat Uygun / 10043117000
dc.authorwosidVedat Uygun / AGH-4534-2022
dc.contributor.authorEker, İbrahim
dc.contributor.authorÇevik Özdemir, Hamide Nur
dc.contributor.authorYılmaz, Fırat
dc.contributor.authorYeşilipek, Akif
dc.contributor.authorKüpesiz, Alphan
dc.contributor.authorUygun, Vedat
dc.contributor.authorKarasu, Gülsün
dc.contributor.authorTayfun Küpesiz, Funda
dc.contributor.authorGürsel, Orhan
dc.contributor.authorKuşkonmaz, Barış
dc.contributor.authorAksoylar, Serap
dc.contributor.authorVisal Okur, Fatma
dc.contributor.authorKarakükcü, Musa
dc.contributor.authorAdaklı Aksoy, Başak
dc.contributor.authorTüfekçi, Özlem
dc.contributor.authorKaya, Zühre
dc.contributor.authorMalbora, Barış
dc.contributor.authorKürekçi, Ahmet Emin
dc.contributor.authorAntmen, Ali Bülent
dc.date.accessioned2025-04-17T08:12:14Z
dc.date.available2025-04-17T08:12:14Z
dc.date.issued2025
dc.departmentİstinye Üniversitesi, Tıp Fakültesi, Dahili Tıp Bilimleri Bölümü
dc.description.abstractObjective: Preimplantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) typing represents a significant advancement in treating inherited hematological disorders, particularly thalassemia major. This technology enables the birth of healthy children who can serve as compatible stem cell donors for their affected siblings. T & uuml;rkiye is a world leader in both PGD+HLA typing technology and hematopoietic stem cell transplantation (HSCT) from savior siblings born through PGD+HLAtyping.Thisstudy investigated the experiences of Turkish parents who underwent successful savior sibling procedures using PGD+HLA typing and then successful HSCT from the savior sibling for the treatment of the child with thalassemia major. We aimed to understand the medical, psychological, and sociocultural dimensions of this complex process within the Turkish healthcare context. Materials and Methods: A qualitative study was undertaken using a descriptive phenomenological approach. In-depth interviews were conducted with parents from 16 families who had successfully completed PGD+HLA matching and subsequent stem cell transplantation processes from the savior sibling to the child with thalassemia. Data were analyzed using Colaizzi's seven-step method and MAXQDA 20.0 software. Results: The analysis revealed six main themes: disease stage, treatment, recovery process, social/family, support systems, and recommendations. Parents reported significant emotional challenges but demonstrated unexpected resilience. Religious and cultural factors played nuanced roles, with most parents viewing the process as compatible with their beliefs. Economic burdens, prolonged hospitalizations, and geographical access to treatment centers emerged as key challenges. Extended family support and professional healthcare guidance were identified as crucial support mechanisms. Conclusion: This study highlights the complex interplay between advanced medical technologies and traditional values in Turkish society. The findings emphasize the need for comprehensive and culturally sensitive support systems and long-term follow-up for families. The results suggest the value of implementing multidisciplinary care teams and developing specialized support programs for families undergoing savior sibling procedures.
dc.identifier.citationEker, İ., Çevik Özdemir, H. N., Yılmaz, F., Yeşilipek, A., Küpesiz, A., Uygun, V., ... & Antmen, A. B. Navigating Hope and Complexity: Turkish Parents' Experiences with Savior Siblings. Turkish Journal of Hematology.
dc.identifier.doi10.4274/tjh.galenos.2025.2024.0419
dc.identifier.endpage55
dc.identifier.issn1300-7777
dc.identifier.issn1308-5263
dc.identifier.issue1
dc.identifier.pmid39846291
dc.identifier.scopus2-s2.0-86000674169
dc.identifier.scopusqualityQ3
dc.identifier.startpage47
dc.identifier.urihttp://dx.doi.org/10.4274/tjh.galenos.2025.2024.0419
dc.identifier.urihttps://hdl.handle.net/20.500.12713/6151
dc.identifier.volume42
dc.identifier.wosWOS:001438864900001
dc.identifier.wosqualityQ3
dc.indekslendigikaynakWeb of Science
dc.indekslendigikaynakScopus
dc.indekslendigikaynakPubMed
dc.institutionauthorUygun, Vedat
dc.institutionauthoridVedat Uygun / 0000-0003-3257-7798
dc.language.isoen
dc.publisherGalenos publishing house
dc.relation.ispartofTurkish journal of haematology : official journal of Turkish society of haematology
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanı
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectMedical Ethics
dc.subjectPreimplantation Genetic Diagnosis
dc.subjectQualitative Research
dc.subjectSavior Siblings
dc.subjectStem Cell Transplantation
dc.subjectTurkish Families
dc.titleNavigating hope and complexity: Turkish parents’ experiences with savior siblings
dc.typeArticle

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