Abstract: TH-PO1153
The Pediatric Renal Transplant Experience: Reflecting Through Photographs
Session Information
- Transplantation: Clinical - Pretransplant Management
November 07, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Transplantation
- 1902 Transplantation: Clinical
Authors
- Pollack, Ari, Seattle Children's Hospital, Seattle, Washington, United States
- Smith, Jodi M., Seattle Children's Hospital, Seattle, Washington, United States
- Pratt, Wanda, University of Washington, Information School, Seattle, Washington, United States
- Snyder, Jaime, University of Washington, Information School, Seattle, Washington, United States
Background
Poor self-management contributes to reduced renal allograft survival during adolescence and young adulthood. For many pediatric patients and their families, the symptoms, complications, and natural history related to ESRD and its treatments are unfamiliar. These unmet information needs lead to uncertainty, interfere with goal setting and result in ineffective self-management. Providing patients with self-reflection tools to help explore the question “Is my experience normal?” may help mitigate these challenges. We present data from a pilot study exploring how photo-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 living with kidney disease.
Methods
Pediatric renal transplant recipients from a single center, along with one family member, were invited to participate. All participants were asked to submit 5 photographs telling their transplant story. No restrictions were placed on what photos individuals could submit. During interviews, participants were asked to tell their story utilizing the photos as prompts. Interviews were recorded, transcribed and analyzed using an inductive grounded theory approach to identify common themes.
Results
13 individuals (7 patients: ages 9 - 19, >1 year post transplant, and 6 parents) completed the study. The photographs generated conversations on four emergent themes: (1) feeling different/isolated from their peers; (2) importance of peer support, including those with and without kidney disease; (3) fear about transitioning to self-care; and (4) the need to create a "normal" child/adolescent experience. Finally, subjects reported significant value in the self-reflection that took place during the photo elicitation process and wanted to share their photos with their clinicians to provide additional insight into their personal experiences.
Conclusion
Photo elicitation generated a rich dataset describing a range of pediatric renal transplant experiences, showing potential as a clinical intervention to support patient and family self-reflection. Finally, the process of self-reflection and sharing visual stories with peers and clinicians can result in greater empathy from caregivers and medical professionals, ultimately improving self-management.
Funding
- NIDDK Support