Introduction: Pediatric living-related liver donation (LRLD) is filled with numerous stressful events, yet for some, it can provide a pathway where meanings are formed, and worldviews are created. Pediatric LRLD is one surgical alternative to cadaveric liver donation for pediatric patients and is a common practice around the world.
The purpose of this qualitative secondary analysis (QSA) was to explore the demands, capabilities, and ways families adapt and adjust to reaching a state of resiliency following LRLD by using the Family Adjustment and Adaptation Response Model (FAAR) related to three different perspectives. One was taken from a cohort of parental live liver donors (N=13) the other was taken from a group of adolescent live liver recipients (N=12), and the third was taken from interviews conducted with both the parental donor and adolescent recipient dyad (N=12). The specific aim was to better understand how families respond to the stress of a pediatric LRLD over time and perform additional analysis of the original data sets by using the FAAR model.
Methods: QSA was conducted by combining data from three qualitative study datasets all of which used 60-90 minute semi-structured interviews, ethnographic methods, and thematic analysis. An ethnographic approach was used to understand participants' lives as a culture, all of whom experienced similar LRLD journeys. The FAAR Model was applied as a conceptual framework as it provided a structure to understand a family’s effort to find a balance between demands and resources during this stressful event. Deductive thematic analysis was performed on the combined set of data using the FAAR Model.
Results: Narratives from the combined data set were analyzed using the three domains of the FAAR model: Sources of stress, mediators of stress, and outcomes of stress. Thematic analysis demonstrated that within the three domains self-awareness, family bonding, and community connections were categories that emerged. Family adaptation and adjustment were present for all combined cohorts and the overarching theme that was common to all cohorts was that the LRLD led them to a state of family resiliency and the ability to achieve balance and positive adaption in the areas of self, family, and community. All these steps involved life participation by the donor, recipient, and family.
Conclusion: Understanding the sources, mediators, and outcomes of stress for all three combined cohorts by using the FAAR Model, can help guide transplant clinicians and families as they move through the LRLD trajectory. Living well and leading resilient lives is the goal of LRLD, and this QSA can provide insights and new knowledge to patients, families, and clinicians we serve.