Abstract

BackgroundThere is a growing interest in qualitative methodologies for understanding complexities in the lived experience of liver transplantation. Frequently, such studies explore quality of life and offer insights for integrating patient-oriented outcomes into conventional research strategies. The scope of qualitative research in liver transplantation tends to be limited, however, with respect to engagement with critical theories, leaving certain aspects of lived experience unexamined. MethodsThe authors describe the process of layering multiple modes of critical qualitative research in liver transplantation, exploring how experiences in liver transplantation are structured discursively and what aspects of recipients’ stories are not easily spoken or shared. This study pairs a critical discourse analysis of patient manuals from a Canadian liver transplant program with digital storytelling with liver transplant recipients. ResultsA homogenous narrative emerges from patient manuals that does not adequately capture the complexity of lived experience of liver transplant survivors. Digital storytelling opens new narrative possibilities by layering sensory aspects of the transplant experience, which are often difficult to articulate through words. This complicates common ideas of survivorship, who is considered a “good” patient, and the cultural scripts that transplant stories frequently engage. ConclusionCritical qualitative research offers opportunities for understanding structures of power embedded within biomedical transplant narratives. Layering qualitative and arts-based methodologies within a framework of co-creation can shift knowledge/power relations while also intervening through material-discursive practices to offer novel insights and opportunities for critical reflection on transplant experiences for recipients, families, and healthcare providers.

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