Reflecting on patient-generated photographs of the pediatric renal transplant experience.

Abstract

Poor self-management contributes to reduced renal allograft survival during adolescence and young adulthood. Providing patients with self-reflection tools to help explore the question "Is my experience normal?" may help mitigate these challenges. We explore Photograph-elicitation, a qualitative method where images are used to prompt individuals to talk about their personal experiences and values, engages pediatric transplant recipients and their families to generate insight into their experiences and the challenges they face after transplant. Pediatric renal transplant recipients and one family member from Seattle Children's Hospital submitted 5 photographs showcasing their transplant story, which were used as prompts during semi-structured interviews. Interviews were recorded, transcribed, and analyzed using thematic analysis. Twenty-four individuals (13 patients: ages 7-21, and 11 parents) completed the study. Conversations generated by the photographs covered topics in more depth than a routine clinical encounter leading to more opportunities for reflection by patients and their family. The photographs generated conversations on four emergent themes: (a) sensemaking; (b) transitions and agency; (c) social interactions and community engagement; and (d) barriers and obstacles. Photograph elicitation generated a rich dataset describing a range of pediatric renal transplant experiences helping physicians gain a rich and nuanced understanding of the daily lives and experiences of their patients outside the clinical setting. Photograph elicitation, as a clinical intervention, may provide new opportunities to address previously unrecognized modifiable risk factors, improving graft survival and health-related quality of life.