Looking beyond Disfigurement: The experience of Patients with Head and Neck Cancer

Abstract

Despite the frequent occurrence of head and neck cancer (HNC) disfigurement, little is known about its psychosocial impact on patients. This study aimed to understand the lived experience of disfigurement in HNC and explore what patients considered to be its influences. Fourteen disfigured HNC patients participated in a 45-to-120-minute in-depth, semi-structured interview, which was analyzed qualitatively using interpretive phenomenology. A majority of participants (64 percent) were considered to be at an advanced cancer stage (stage III or stage IV). Patients’ experiences revolved around the concept of a ruptured self-image (a discontinuity in sense of self). Forces triggering this ruptured self-image created a sense of “embodied angst”, in which disfigurement served as a constant reminder of the patient's cancer and associated foundational malaise. Other influences fostered a sense of normalcy, balance, and acceptance. Participants oscillated between these two states as they grew to accept their disfigurement. This study's findings could guide supportive interventions aimed at helping patients face head and neck surgery.

Cancer and changes in facial appearance: A meta‐ethnography of qualitative studies

“…During the diagnosis and treatment period, the way in which the care team dealt with the changed facial appearance was important (Henry et al, 2014;Konradsen et al, 2009;Lee et al, 2016;Speraw, 2009 Participants' descriptions suggest a balance is needed between acknowledging appearance changes without stigmatizing. Konradsen et al (2009) found that appearance was minimized by the care team, meaning that the participant's negative feelings about their appearance were silenced as they learned that altered appearance, whilst an important issue to them, was not something that was of importance to staff.…”

“…Negative reactions from others in response to changed facial appearance were a significant theme in the majority of studies (Bonanno, & Choi, 2010;Bonanno, & Esmaeli, 2012;Costa et al, 2014;Henry et al, 2014;Konradsen et al, 2012;Speraw, 2009;Turpin et al, 2009;Van Doorne et al, 1994). These included those of commission (e.g.…”

“…Participants experienced provoking pity, sadness, and sympathy in others (Costa et al, 2014;Henry et al, 2014). Sometimes this was overbearing and out of proportion to participants' perception of the severity of their changed appearance, which increased feelings of being inferior and different to others: 'People treat me differently.…”

“…Similarly, participants' facial appearance prompted reactions of shock and disgust (Costa et al, 2014;Henry et al, 2014). People would stare, make comments, and ask questions.…”

“…Many studies identified social avoidance as a coping strategy (Costa et al, 2014;Henry et al, 2014;Konradsen et al, 2012;McGarvey et al, 2014). Many studies identified social avoidance as a coping strategy (Costa et al, 2014;Henry et al, 2014;Konradsen et al, 2012;McGarvey et al, 2014).…”