<p>The purpose of this paper is to explore how the mainstream media in Western society represents facial difference, and in turn, how such representations impact individuals who identify as having a facial difference. The study is based on findings from a four-hour focus group with individuals (aged 18-30) who identify as having a facial difference. The data is interpreted and discussed using a critical framework; specifically, Critical Disability Theory.</p> <p>The subsequent findings indicate that how the media represents facial difference has a significantly negative impact on individuals with a facial difference, in terms of their development of self-esteem and self-worth. It was also apparent from this study that the media plays a large role in the development and maintenance of one’s “understanding” of facial difference.</p> <p>Major themes emerging from this research include: How individuals feel ‘othered’ because of their facial difference; How language plays a role in maintaining stereotypes of “difference”; How pre-natal testing for “birth defects” can lead to termination of life, and how this related to eugenics; How powerful and pervasive messages from the media can be in relation to physical difference; and how subsequent stigmas impact individuals with facial difference.</p> / Master of Social Work (MSW)

Objective: Existing patient-reported outcome measures (PROM)s for patients with facial differences lack content validity, as few items address appearance and function issues. The FACE-Q is a new PROM developed to measure outcomes important to patients aged 8-29 years with craniofacial conditions. A process was needed to determine if the FACE-Q content is relevant to patients with head and neck cancer (HNC). Methods: Cognitive interviews with patients with HNC aged 8 to 29 years (n=15) were conducted and feedback from experts in pediatric oncology (n=21) was obtained. Input was sought on all aspects of the FACE-Q content. Results: A total of 1573 codes were developed from patient comments and 234 codes were developed from expert feedback that related to the COSMIN criteria for judging content validity. A total of 12 items were flagged for review from qualitative interviews and 4 comments were coded from expert feedback among the core scales for comprehensibility. Instructions, time frame, and response options were found to be comprehensible and appropriate by almost all patient and expert participants. Participants identified a total of 10 missing items identified across the core scales, while no additional items were identified by experts for the core scales. However, 4 experts identified swallowing/dysphagia as an important item missing from the mouth function scale. Discussion: Content validity of the FACE-Q for patients with HNC was evaluated through cognitive interviews with patients and feedback from pediatric oncology experts. The core scales were answered by all participants and demonstrate overall content validity from feedback offered by both patients and experts. Conclusion: The FACE-Q showed evidence of content validity for its core scales along with limited evidence that the remaining scales covered issues relevant to specific HNC patients. Assessment of the psychometric properties of the new measure is forthcoming as part of an international FACE-Q field-test study. / Thesis / Master of Science (MSc) / The FACE-Q is a patient-reported outcome measure developed to assess outcomes important to patients aged 8-29 years with craniofacial conditions. The current study aimed to determine its content validity for use in patients with head and neck cancer (HNC). Cognitive interviews with patients with HNC aged 8-29 years (n=15) were conducted and feedback from experts in pediatric oncology (n=21) was obtained. A total of 1573 codes from patient comments and 234 codes from expert feedback were developed. A total of 12 items were flagged for review from qualitative interviews along with 4 items from expert feedback among the core scales for comprehensibility. Instructions and response options were found to be comprehensible and appropriate. A total of 10 missing items were identified across the core scales by patient participants while experts identified 1 missing item. The FACE-Q evidenced content validity for core scales along with limited evidence for remaining scales.

Yes / The face is not the property of an individual; it is a key part of our communicating body. It is performed, in social interaction (Goffman, 1982) and seen and responded to within historicised and gendered ideals of the normal and of beauty. The normal and the beautiful have a particular resonance in a visually mediated consumer society, “looks matter”. But more than half-a million people in the UK have a significant disfigurement to their face (Changing Faces, 2007). This chapter explores the way facial difference illuminates debates on bodily representation. It explores how people living with visible facial difference invoke discursive formations of disfigurement (Garland-Thomson, 2009). It asks how we encounter and respond to facial difference and examines how close personal relationships can offer a source of support. The chapter contextualises the relevance of the face for communication and then examines implications for social selves in personal communities. Seventeen people living with visible facial difference were interviewed as part of a PhD study and interview extracts illuminate different aspects of the aesthetics of inclusion.

People with visible facial difference often experience other people reacting negatively to their appearance. For many, this is part of everyday life. Research has identified social support as critical in adaptation processes. This is the case both for those whose facial difference was apparent at birth, and those who experienced injury or illness. There is a lack of a comprehensive theoretical construct for exploring how personal communities provide resources needed by adults to live well with visible facial difference. The combination of semi-structured interviews and creation of personal community maps provided opportunities to explore the interplay between respondent accounts and patterns of relationships people are embedded within. Seventeen adults with visible facial difference and two unaffected ‘significant others’ were interviewed. The findings provide evidence that personal communities are important social spaces for negotiation of resources that enable adults to feel connected, valued and safer within wider communities. Social support was not described as a property of the individual, but as experienced with combinations of people that change according to situation, place, or time. A diversity of personal community patterns were found, largely consistent with findings from Spencer and Pahl (2006), with one variation which increased intimate support. Some personal communities were less supportive and consequently people were at risk of isolation. Processes within personal communities were helpful both in dealing with negative social environments and in helping establish different versions of ‘normal’ life. The importance of focussing on social contexts, when seeking to understand how people live with visible facial differences, is highlighted.

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People with visible facial difference often experience other people reacting negatively to their appearance. For many, this is part of everyday life. Research has identified social support as critical in adaptation processes. This is the case both for those whose facial difference was apparent at birth, and those who experienced injury or illness. There is a lack of a comprehensive theoretical construct for exploring how personal communities provide resources needed by adults to live well with visible facial difference. The combination of semi-structured interviews and creation of personal community maps provided opportunities to explore the interplay between respondent accounts and patterns of relationships people are embedded within. Seventeen adults with visible facial difference and two unaffected ‘significant others’ were interviewed. The findings provide evidence that personal communities are important social spaces for negotiation of resources that enable adults to feel connected, valued and safer within wider communities. Social support was not described as a property of the individual, but as experienced with combinations of people that change according to situation, place, or time. A diversity of personal community patterns were found, largely consistent with findings from Spencer and Pahl (2006), with one variation which increased intimate support. Some personal communities were less supportive and consequently people were at risk of isolation. Processes within personal communities were helpful both in dealing with negative social environments and in helping establish different versions of ‘normal’ life. The importance of focussing on social contexts, when seeking to understand how people live with visible facial differences, is highlighted. / University of Bradford Studentship