Navigating Hope and Complexity: Turkish Parents' Experiences with Savior Siblings.

Abstract

Background/aims: 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. Turkey is a world leader in both PGD+HLA typing technology and hematopoietic stem cell transplantation from savior siblings born through PGD+HLA typing.

Aims: This study investigated the experiences of Turkish parents who underwent successful savior sibling procedures using preimplantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) typing and then successful hematopoietic stem cell transplantation, from this savior sibling, for the treatment of their thalassemia major child. The research aimed to understand the medical, psychological, and socio-cultural dimensions of this complex process within the Turkish healthcare context.

Materials and methods: A qualitative study using descriptive phenomenological approach was conducted. In-depth interviews were performed with 16 parents, who successfully completed PGD+HLA matching and subsequent successful stem cell transplantation process from this savior sibling to their thalassemia child. Data were analyzed using Colaizzi's seven-step method and MAXQDA 20.0 software.

Results: 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 burden, prolonged hospitalizations, and geographical access to treatment centers emerged as key challenges. Extended family support and healthcare professional guidance were identified as crucial support mechanisms.

Conclusion: The study highlights the complex interplay between advanced medical technologies and traditional values in Turkish society. Findings emphasize the need for comprehensive, culturally sensitive support systems and long-term follow-up for families. Results suggest implementing multidisciplinary care teams and developing specialized support programs for families undergoing savior sibling procedures.