Navigating Hope and Complexity: Turkish Parents’ Experiences with Savior Siblings

Area of Science:

• Medical Genetics
• Hematology
• Reproductive Medicine

Background:

• Preimplantation genetic diagnosis (PGD) with human leukocyte antigen (HLA) typing enables the birth of healthy children who can act as stem cell donors.
• Türkiye is a global leader in PGD+HLA typing and hematopoietic stem cell transplantation (HSCT) from savior siblings for inherited disorders like thalassemia major.

Purpose of the Study:

• To investigate the medical, psychological, and sociocultural experiences of Turkish parents undergoing savior sibling procedures for thalassemia major treatment.
• To understand the complexities of PGD+HLA typing and subsequent HSCT within the Turkish healthcare context.

Main Methods:

• A qualitative descriptive phenomenological approach was used.
• In-depth interviews were conducted with parents from 16 families who completed PGD+HLA matching and HSCT from a savior sibling.
• Data analysis employed Colaizzi’s seven-step method and MAXQDA 20.0 software.

Main Results:

• Six main themes emerged: disease stage, treatment, recovery, social/family dynamics, support systems, and recommendations.
• Parents faced significant emotional challenges but displayed resilience, with religious and cultural factors playing nuanced roles.
• Economic burdens, prolonged hospitalizations, and access to care were key challenges, while extended family and professional guidance were vital support.

Conclusions:

• The study underscores the interplay of advanced medical technology and traditional values in Turkish society.
• There is a critical need for comprehensive, culturally sensitive support systems and long-term follow-up for families undergoing these procedures.
• Implementing multidisciplinary care teams and specialized support programs is recommended for families pursuing savior sibling treatments.