Understanding Disclosure Decisions and Communication About HPV-Related Cancer: A Qualitative Exploration of Stigma and Social Support

Abstract

Background/Objectives: This study aimed to explore the barriers and facilitators influencing initial self-disclosure among individuals diagnosed with human papillomavirus (HPV)-related cancers, as well as examine the post-disclosure experiences of affected individuals. Emphasis was placed on understanding the roles of perceived and internalized stigma in these interpersonal communication encounters. Methods: Semi-structured interviews were conducted with 27 participants diagnosed with an HPV-related cancer. MAXQDA was used for qualitative analysis with themes grounded in Attribution Theory and the Disclosure Model. Results: Barriers to disclosure identified among participants included privacy concerns, hesitancy to burden others, and discomfort discussing the anatomic location of their cancer. In contrast, seeking support, instances of misunderstanding HPV’s relation to cancer, and the proactive detailing of their diagnosis to avoid judgment emerged as facilitators of disclosure. While many recounted positive post-disclosure experiences, some participants expressed feelings of guilt and internalized stigma, suggesting a deeper emotional struggle in communicating about their diagnosis to others in their social support networks. Nuances in the internalized stigma were observed in specific subgroups among this patient population, such as those who identify as a sexual/gender minority. Conclusions: This study underscores the multifaceted challenges experienced among individuals diagnosed with HPV-related cancers when disclosing their diagnoses and seeking social support. This study highlights the imperative role of identifying psychosocial distress in the post-diagnosis period among individuals with HPV-related cancer. Future research should explore ways to enhance social support for this patient population by improving healthcare providers’ screening measures and providing integrated support services earlier to better address their psychosocial needs.