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Living with facial disfigurement : a phenomenological study of individuals after radical surgery for head and neck cancer Whitehouse, Kathryn Jane Cline

Abstract

Head and neck cancer comprises four percent of all cancers. Clearly, individuals diagnosed with this type of cancer must cope not only with the diagnosis of cancer and the related fears, but also with the apprehension associated with the acquired facial disfigurement and related functional impairment resulting from the radical surgical treatment. A review of the literature revealed that nursing research which focusses on understanding people's perceptions and experiences with facial disfigurement after having had radical surgery for head and neck cancer is nonexistent. The impact of this type of cancer and its social implications must be far-reaching considering the emphasis placed on appearance, particularly by people in North American society. This study addressed the need for an increased understanding of the lived experiences of individuals with this type of acquired facial disfigurement. The purpose of this phenomenological study was to explore and describe the perspectives and experiences of people living with facial disfigurement following surgery for head and neck cancer. In addition, the study examined and described the meaning of the disfigurement for these individuals and the impact of their altered facial appearance on their interpersonal relationships and functional abilities. Four men and four women volunteers were selected as participants for the study from among patients being seen at the British Columbia Cancer Agency. Data collection and analysis occurred concurrently by means of indepth interviews, guided by open-ended questions. Field notes and the audio-taped interviews, which were transcribed verbatim, yielded the data for analyses. Two principal themes constitute the research findings: loss and stigma. All of the participants experienced numerous, compound losses as a result of radical head and neck surgery. During the immediate postoperative period, the losses were primarily functional, but as recovery proceeded, the losses became more social in nature. The second theme, stigma, which is an attribute considered by others as discrediting, was experienced by the participants throughout the entire recovery period. Stigma protracted the illness experience and multiplied the losses, particularly social losses. In order to cope with their situations, the participants developed several coping strategies to deal with the losses and stigma associated with cancer and facial disfigurement. The findings are discussed in conjunction with relevant literature. Implications for nursing practice and education are identified. Recommendations are made for future research based on this study.

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