Introduction: In pediatric live liver donation, both the recipient and the parental donor may share similar scars, which can symbolize a variety of different meanings representing the journey the dyad has traveled. The quotation “Behind every scar, there is an untold story of survival” was tattooed on the forearm of an adolescent live liver recipient. This quotation exquisitely captures the essence of what both the adolescent live liver recipient and their parental donor may face as they navigate their lives following transplantation.
As we enter the 35th year of pediatric live liver donation, giving voice to these untold stories can provide a more comprehensive understanding of the lives shared by donors and recipients. The purpose of this qualitative secondary analysis (QSA) was to explore the meaning and significance that a transplant scar holds for both adolescent live liver recipients and their parental donors.
Methods: A QSA approach was used to analyze data collected from two separate mixed-method studies. One was obtained from a group of adolescent live liver recipients (N=12), and the second was obtained from interviews conducted with both the parental live liver donor and the adolescent recipient (N=12). Both studies employed an ethnographic approach and conducted semi-structured interviews with thematic analysis. The Family Adjustment and Adaptation Response Model (FAAR) was used to understand this phenomenon and how families psychologically adapt and adjust to living with the scar. The FAAR model encompasses three domains: sources of stress, mediators of stress, and outcomes of stress.
Results: Thematic analysis revealed three categories that characterized the participants' perspectives regarding the scar: relationships were formed, identity was developed, and memories became shared. The overarching theme expressed by the parental donors and adolescent recipients regarding their scars was one of empowerment.
Conclusion: By sharing untold stories captured through their transplant scars, parental donors and adolescent recipients offer clinicians, families, and patients valuable insights that can help to support individuals throughout this life trajectory. Through this exploration and unfolding of their stories of survival, patient-centeredness can be addressed, and interventions can be developed.