Villalona Seiichi, Sanchez Julian, Mangkalard Preeyapat, Best Alicia L
Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA 19104, USA.
Hospital of the University of Pennsylvania, Philadelphia, PA 19104, USA.
Healthcare (Basel). 2025 Apr 22;13(9):966. doi: 10.3390/healthcare13090966.
: 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. : 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. : 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. : 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.
本研究旨在探讨影响被诊断患有与人乳头瘤病毒（HPV）相关癌症的个体初次自我披露的障碍和促进因素，并考察受影响个体在披露后的经历。重点在于理解感知到的耻辱感和内化的耻辱感在这些人际沟通交流中的作用。
对27名被诊断患有HPV相关癌症的参与者进行了半结构化访谈。运用MAXQDA进行定性分析，主题基于归因理论和披露模型。
参与者中确定的披露障碍包括隐私担忧、不愿给他人增添负担以及对讨论癌症解剖位置感到不适。相比之下，寻求支持、对HPV与癌症关系的误解实例以及主动详细说明诊断以避免被评判成为披露的促进因素。虽然许多人讲述了披露后的积极经历，但一些参与者表达了内疚感和内化的耻辱感，这表明在向其社会支持网络中的其他人传达诊断信息时存在更深层次的情感挣扎。在该患者群体的特定亚组中观察到了内化耻辱感的细微差别，例如那些认同为性少数群体/性别少数群体的人。
本研究强调了被诊断患有HPV相关癌症的个体在披露诊断信息并寻求社会支持时所面临的多方面挑战。这项研究突出了识别HPV相关癌症患者诊断后心理社会困扰的重要作用。未来的研究应探索通过改善医疗服务提供者的筛查措施以及更早提供综合支持服务来更好地满足其心理社会需求，从而增强对该患者群体的社会支持的方法。
