The Story Deepens: Female Cancer Patients Respond to Their Own Experiences with Hair Loss

Authors

Miriam Rosen MD, University of Pittsburgh School of MedicineFollow
Judy Chang MD, MPH, University of Pittsburgh School of MedicineFollow
Brianna Rossiter MD, MS, University of Pittsburgh School of MedicineFollow
Shannon Puhalla MD, University of Pittsburgh School of MedicineFollow
Gaetan Sgro MD, University of Pittsburgh School of MedicineFollow

Abstract

Objective: Chemotherapy induced alopecia (CIA) is recognized as one of the most traumatic parts of a woman’s cancer treatment, yet the experience often eludes traditional data collection methods. Our study had three specific aims. First, we hoped to collect patient stories to better define how CIA affects a woman’s identity and quality of life. Second, we hoped that unifying those stories into a reflective essay would reveal previously inaccessible aspects of hair loss. Finally, we intended to explore for the first time patients’ attitudes towards narratives written about their personal experiences.

Methods: We conducted semi-structured interviews with cancer patients who had lost or would lose their hair to chemotherapy. Content of the initial interviews served as the basis for a single, creative non-fiction essay written by the author. The research team read the essay back to participants and conducted semi-structured interviews regarding their attitudes towards the essay. Both sets of interviews and the essay were analyzed for patterns and themes.

Results: Four women participated in our study. Main themes that emerged from the first interviews were: 1) Mom as Protector; 2) Nobody Wants to Wear a Wig; 3) The Samson Effect; 4) Three Pillars; 5) Living with Gratitude; 6) Scarred and Haunted by Dreams Deferred; and 7) Forging a New Life Story. Themes from the second interview included: 1) Homeric Guidance; 2) Woven Tapestry; 3) Enriched Perspective; 4) Storytelling Club; and 5) Persistence of Pain.

Conclusions: The essay form is a powerful and highly underutilized tool for synthesizing and consolidating knowledge from qualitative interviews. Using a narrative frame allows us to access rarely seen parts of the patient experience, and in this study, suggests that other losses endured during the cancer experience significantly outweigh the loss of hair.

Recommended Citation

Rosen, Miriam MD; Chang, Judy MD, MPH; Rossiter, Brianna MD, MS; Puhalla, Shannon MD; and Sgro, Gaetan MD (2024) "The Story Deepens: Female Cancer Patients Respond to Their Own Experiences with Hair Loss," Survive & Thrive: A Journal for Medical Humanities and Narrative as Medicine: Vol. 9: Iss. 1, Article 3.
Available at: https://repository.stcloudstate.edu/survive_thrive/vol9/iss1/3