Navigating hope and complexity: Turkish parents’ experiences with savior siblings
Yükleniyor...
Dosyalar
Tarih
2025
Dergi Başlığı
Dergi ISSN
Cilt Başlığı
Yayıncı
Galenos publishing house
Erişim Hakkı
info:eu-repo/semantics/openAccess
Özet
Objective: 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.
Açıklama
Anahtar Kelimeler
Medical Ethics, Preimplantation Genetic Diagnosis, Qualitative Research, Savior Siblings, Stem Cell Transplantation, Turkish Families
Kaynak
Turkish journal of haematology : official journal of Turkish society of haematology
WoS Q Değeri
Q3
Scopus Q Değeri
Q3
Cilt
42
Sayı
1
Künye
Eker, 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.
