"Uncovering the unspoken": a narrative analysis of patients' experiences with testicular cancer

Abstract

Background: The aim of this study was to understand the experiences of young men with a diagnosis of testicular cancer (TC) using a narrative approach, with the intention of informing models of care and support in clinical services.

Methods: TC patients were recruited to participate in one of four focus groups examining their lived experiences from diagnosis. Focus groups were recorded and transcribed and analyzed using a narrative approach.

Results: A total of 4 focus groups were held from March to May 2019, involving 21 participants. Participants were currently on treatment (n = 2), < 2 years from treatment completion (n = 7), or > 2 years from treatment completion (n = 12). Two overarching meta-themes were identified: Negotiating Identity (comprising "recovery, repair and control"; "breaking the news"; "threats to fertility and virility"; "multiple masculinities") and Needing to Adjust (comprising "trauma and post-traumatic growth"; "facing vulnerability"; "managing to cope"; "secrecy vs. privacy"). Shared themes relating to environments for support, conversations about cancer, and time stress were also identified.

Conclusions: Despite the significant cure rates for testicular cancer, the psychosocial needs of patients diagnosed with TC are paramount and potentially long-lasting. Improved clinical care for these patients includes exploration of both physical and psychosocial concerns over multiple timepoints. Opportunities for peer support and mentorship may be essential to support these vulnerable patients.

Keywords: Needing to Adjust; Negotiating Identity; Testicular cancer.