Mapping out the social experience of cancer patients with facial disfigurement

Abstract

This article contributes to the limited literature on the social consequences of cancer generated facial disfigurement by reporting the result of an exploratory analysis of interaction between facially disfigured cancer patients and strangers and acquaintances (secondary groups). Secondary groups are those in which membership occurs due to performance of formal and/or non-intimate roles. Interaction is studied as it takes place in different social settings. Indivi- duals who are affected by cancer of the head and neck region can now expect to survive for many years after the cancer is detected and later surgically removed. Because of surgery, these survivors live the rest of their lives with facial disfigurement and are stigmatized and socially excluded. It follows that a new and socially relevant situation has emerged: as medicine develops and allows more patients to survive, it forces them to spend significant portions of their lives dealing with the stigma associated with facial disfigurement. Research on social issues pertaining to facially disfigured cancer patients remains sparse. Limited knowledge has been produced on the “social context” within which interaction between the disfigured and relevant social groups takes place. To date most research has focused on the individual and his/her ability to adapt to the condition of facially disfigured. To address this scientific gap and document the manner through which the interaction process is socially created and evolves, interviews with fourteen facially disfigured cancer patients were carried out. These interviews were designed to reconstruct the interaction experiences of these individuals in different social contexts. Data were analyzed through the qualitative approach of grounded theory. Results indicate that patients can be divided into two groups: Occasionally Comfortable Patients and Always Comfortable Patients. Occasionally comfortable patients are individuals who experience different levels of comfort in interaction. In some situations they do not feel stigmatized, but other interactions constitute the contexts within which this discomfort emerges. Discomfort in interaction was employed as an indicator of stigmatization. Interacting groups were divided into small and large. Intrusion (unsolicited attention to patients) in interaction in large and small groups always generates uncomfortable situations. Sympathy (unsolicited comments and/or actions in support of patients) is associated with comfort in interaction in small groups and produces varying patterns in the case of large groups. Benign neglect (a situation in which interacting individuals do not pay particular attention to patients) produces comfort in interaction within large groups and varying outcomes in the case of small groups. Always comfortable patients are those who do not experience discomfort in interaction regard- less of the size and characteristics of the interacting group. The article concludes by stressing that facially disfigured cancer patients should be prepared to face different interaction patterns. Simultaneously, efforts should be made to educate patients and the general public about these interaction patterns.