Journal Article

Navigating Hope and Complexity: Turkish Parents' Experiences with Savior Siblings/Umudu ve Karmasikligi Yonlendirmek: Turk Ebeveynlerin Kurtarici Kardes Deneyimleri

Eker, Ibrahim, Kupesiz, Funda Tayfun, Yesilipek, Akif, Karasu, Gulsun, Okur, Fatma Visal, Tufekci, Ozlem, Malbora, Baris, Aksoy, Basak Adakli, Ozek, Gulcihan, Kuskonmaz, Baris, Aksoylar, Serap, Antmen, Ali Bulent, Ozdemir, Hamide Nur Cevik, Kaya, Zuhre, Uygun, Vedat, Kupesiz, Alphan, Kurekci, Ahmet Emin, Yilmaz, Furat, Karakukcu, Musa, Gursel, Orhan

2025

Overview

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. Turkiye is a world leader in both PGD+HLA typing technology and hematopoietic stem cell transplantation (HSCT) from savior siblings born through PGD+HLA typing. This study 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. Keywords: Savior siblings, Preimplantation genetic diagnosis, Stem cell transplantation, Qualitative research, Turkish families, Medical ethics Amac: Insan lokosit antijen (HLA) eslestirmesi ile birlikte preimplantasyon genetik taniyi (PGD) iceren tedavi yontemi, ozellikle talasemi major gibi kalitsal hematolojik hastaliklarin tedavi edilmesinde onemli bir ilerleme sunmaktadir. Bu teknoloji, hasta olan kardes icin potansiyel uygun kok hucre bagiscisi saglikli kardesin dogmasini saglar. Turkiye hem PGD+HLA eslestirme tedavisinde, hem de PGD+HLA eslestirme tedavi yontemi kullanilarak dunyaya gelen kurtarici kardesten hematopoietik kok hucre nakli (HKHN) konusunda dunya lideridir. Bu calismayla PGD ve HLA eslestirmesi tedavi yontemi ile dogan cocuklarindan, hasta olan cocuklarina basarili HKHN yapilan, talasemi major hastasi cocuk sahibi Turk ebeveynlerinin deneyimlerinin arastirilmasi amaclanmistir. Arastirma bu kompleks sureci, ebeveynler uzerindeki etkilerini, ebeveynlerin yasadiklarini medikal, psikolojik ve sosyo kulturel acidan anlamayi amaclamaktadir. Ayrica bu tedavi y ontemini alacak ailelere ve uygulayacak saglik hizmeti sunucularina onerilerde bulunmak hedeflenmistir. Gerec ve Yontemler: Tanimlayici fenomenolojik yaklasimi kullanilan niteliksel bir arastirma tasarimi kullanilmistir. Bu calisma da basarili bir PGD+HLA eslestirmesi yontemi ile dogan kurtarici kardesten talasemi majorlu hasta cocuklarina, basarili kok hucre nakli gerceklestirilmis 16 aile ile derinlemesine gorusmeler gerceklestirildi. Veri analizi icin Colaizzi'nin yedi asamali yontemi ve MAXQDA 20.0 yazilimi kullanilmistir. Bulgular: Analiz alti ana tema ortaya cikartmistir: Hastalik evresi, tedavi, iyilesme sureci, sosyal aile, destek sistemleri ve tavsiyeler. Ebeveynler onemli duygusal zorluklar bildirmis ama beklenmeyen dayaniklilik gostermislerdir. Dini ve kulturel faktorler ince bir role sahip olup cogu aile bu sureci inanclarina uygun degerlendirmistir. Ekonomik yuk, uzun hastane yatislari ve tedavi merkezine cografi erisim onemli zorluklar olarak one cikmaktadir. Yogun aile destegi ve saglik profesyonellerinin liderligi onemli destek mekanizmalari olarak dikkat cekmektedir. dikkat cekmektedir. Sonuc: Bu calisma ileri medikal teknolojiler ve Turk toplumunun geleneksel degerleri arasinda kompleks iliskiyi vurgulamaktadir. Bulgularimiz; aileler icin kulturel hassasiyetlere sahip detayli bir destek sistemine ve uzun sureli takiplere ihtiyac oldugunu ortaya koymaktadir. Sonuclarimiz, kurtarici kardes surecinden gecen aileler icin ozellestirilmis destek programlarinin gelistirilmesini ve multidisipliner bakim ekiplerinin uygulanmasinin onemini gostermistir. Anahtar Sozcukler: Kurtarici kardes, Preimplantasyon genetik tani, Kok hucre nakli, Niteliksel arastirma, Turk aileler, Tibbi etik

• Publisher: Galenos Yayinevi Tic. Ltd
• Subject: Analysis / Family / Hematopoietic stem cells / Histocompatibility antigens / HLA histocompatibility antigens / Medical ethics / Social aspects / Transplantation