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"Finding my voice": Storytelling and Survivorship in Patients Undergoing Breast Reconstruction
Lily Zhu
*1, Kristen P. Broderick
1, Rachel Greenup
2, Olutayo A. Sogunro
1, Lily Mundy
11Johns Hopkins University, Baltimore, MD; 2Yale School of Medicine, New Haven, CT
Background: Breast reconstruction is complicated and impacts individuals in a multitude of ways. Narrative medicine, particularly patient storytelling, has been shown to help patients cope with healthcare experiences in other areas of medicine. This study explores the impact storytelling has on patients after breast cancer reconstruction.
Methods: A prospective study of patients who had either considered or undergone breast reconstruction was performed. Participants completed a 4-week group storytelling training led by an expert to develop personal narratives. Surveys, including keywords, BREAST-Q questionnaires, and open-ended questions, were administered before and after. Thematic analysis using inductive coding was performed.
Results: Participants (n=16) expressed varied motivation for joining the training, including helping others learn from their experience (n=8), providing a voice they wished to have heard (n=7), and raising awareness about the breast reconstruction process (n=3). Patient storytelling covered topics from evolving relationships with one's body, the intricate link between body and identity, decision-making complexity, to the importance of self-advocacy. Initial keywords including "challenging, resilience, emotional, humbling" shifted to words such as "relieved, validating, and grateful." BREAST-Q scores for satisfaction with breast increased from 69.2 to 73.6. Shared learning emerged as the most valuable aspect of the process (n=10), including learning from others (n=5) and teaching others (n=5). Other aspects included developing community (n=4), learning about oneself (n=4), and learning to narrate stories (n=2). Fifteen participants (94%) acquired skills applicable to daily life and found strength and solace in the "social and emotional bonding" of sharing their reconstruction experiences and believed the experience should be offered to other patients.
Conclusion: Patient storytelling training is a powerful tool in breast reconstruction, fostering emotional resilience, empowerment, and shared experiences.
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