Social interaction and stigmatization of cancer patients with orbitofacial disfigurement

Abstract

e20659 Background: Advances in cancer treatment extend the survival of orbitofacial cancer patients who undergo orbital exenteration. Survivorship creates social problems as facial deformities potentially engender social stigma (a mark of social disgrace). Stigmatization is created through social interaction and depends on reactions of “others” to disfigured patients and patients’ postures toward others. In this qualitative study, we investigated a) patterns of stigmatization in interaction with acquaintances and friends in small and large groups and b) whether interactions with family members is always positive and non-stigmatizing and interaction with strangers is always stigmatizing. Methods: In-depth interviews with 12 patients and 12 family members (8 spouses, 4 offspring and siblings) were carried out with an open-ended questionnaire. Cancer diagnoses included lacrimal gland adenoid cystic ca. (n=3), conjunctival SCCA(n=3), and 1 each of conjunctival melanoma, eyelid sebaceous gland ca., lacrimal sac transitional cell ca., orbital adenoca., orbital neuroendocrine ca., and eyelid basal cell ca. The median time from orbital exenteration to interview was 44 months. None were receiving active cancer therapy and none had cancer recurrence at interview time. Results: Patients were comfortable in interactions with friends and family members as they respond in supportive and non-stigmatizing ways. Interaction with acquaintances and strangers engender varying outcomes. In large groups, actions toward patients characterized by “benign neglect” (n=3) - kind indifference toward patients - generate non-stigmatizing outcomes. Actions characterized by sympathy (n=5) - overt support for patients - generate inconsistent patterns of interaction. “Intrusion” - unsolicited attention paid to patients - (n=4) leads to feelings of stigmatization. In small groups, intrusion creates stigmatization. Sympathy creates positive outcomes, while interaction characterized by benign neglect generates varying patterns. Conclusions: Patients should be warned about possible difficulties interacting in large and small groups. Health care professionals should be trained to address these problems through programs of social intervention for head and neck cancer survivors. No significant financial relationships to disclose.