Problems and coping behaviour of facial cancer patients

Koster, Michiel; Bergsma, Jurrit

doi:10.1016/0277-9536(90)90155-l

Cited by 91 publications

(56 citation statements)

References 23 publications

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“…These four dimensions were chosen based on the clinical experience of the head and neck surgeons involved in the study (JH and PG) and a review of the literature. 1,13,29,38,39 The latter has emphasized the visibility of the disfigured area, the extent of bony structure and soft tissue defects, and the degree to which such dynamic characteristics as emo-tional expression are affected as relevant dimensions in facial disfigurement. The dimension of shape was chosen because the postoperative contour of the face and presence of residual swelling or scarring that affect facial shape may be important determinants of the overall cosmetic result.…”

Section: Methodsmentioning

confidence: 98%

“…1,3 It has been regarded as an enormous threat to self-esteem [4][5][6] and may contribute to the high rates of depression and anxiety documented in head and neck cancer patients. [7][8][9][10][11] The potentially distressing impact of facial disfigurement has been attributed to the importance of the facial region to a person's identity, body image, ability to communicate and achieve success in interpersonal relationships, and to the fact that such disfigurement is often highly visible and not easily hidden from view.…”

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confidence: 99%

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Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients

et al. 2000

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Background Facial disfigurement is considered to be one of the most distressing aspects of head and neck cancer and its treatment, but it has been the focus of little systematic study. Existing studies have yielded conflicting results about the psychosocial impact of disfigurement. No studies to date have examined disfigurement using a valid and reliable observer‐rated measure. The purpose of the current study was to examine the validity (convergent and discriminant) and the inter‐rater reliability of a novel nine‐point observer‐rated disfigurement scale. Methods The sample consisted of 74 ambulatory head and neck cancer patients more than 6 months post treatment. Ratings of disfigurement were assigned independently by surgical and nonsurgical raters. Validity was assessed by comparing the association between disfigurement ratings and sociodemographic and illness treatment variables. Reliability was assessed by examining the concordance between the surgical and nonsurgical ratings. Results Disfigurement ratings were not associated with several sociodemographic variables, supporting the discriminant validity of the scale. Disfigurement was significantly related to a diagnosis of oral cancer, a history of adjunctive radiation, the type of surgical procedure performed, the degree of physical dysfunction, and the presence of postoperative complications. Observer ratings of disfigurement were significantly related to patient ratings of disfigurement. These findings support the convergent validity of the disfigurement scale. Inter‐rater reliability of the scale was high (intraclass correlation coefficient = .91). Conclusion The study provides preliminary evidence for the validity and inter‐rater reliability of a novel nine point observer‐rated disfigurement scale that may be useful in evaluating the impact of disfigurement on quality of life in head and neck cancer. © 2000 John Wiley & Sons, Inc. Head Neck 22: 132–141, 2000.

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Section: Methodsmentioning

confidence: 98%

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confidence: 99%

Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients

et al. 2000

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“…By contrast, researchers working in the emergent field of the psychology of visible difference (Lansdown et al 1997;Rumsey and Harcourt 2012) aim to address the appearance-related concerns of individuals with atypical facial. They investigate such topics as body image and self-esteem (Dropkin 1999;Rumsey and Harcourt 2004) coping strategies and the merits thereof (Dropkin 1989;Koster and Bergsma 1990;Jaspal 2012;Stock et al 2016); and the efficacy of (professional) interventions such as self-help, social skills training and psychotherapy (Robinson et al 1996;Callahan 2008;Konradsen et al 2012;Muftin and Thompson 2013).…”

Section: Introductionmentioning

confidence: 99%

Facing a Disruptive Face: Embodiment in the Everyday Experiences of “Disfigured” Individuals

et al. 2017

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In recent years, facial difference is increasingly on the public and academic agenda. This is evidenced by the growing public presence of individuals with an atypical face, and the simultaneous emergence of research investigating the issues associated with facial variance. The scholarship on facial difference approaches this topic either through a medical and rehabilitation perspective, or a psycho-social one. However, having a different face also encompasses an embodied dimension. In this paper, we explore this embodied dimension by interpreting the stories of individuals with facial limb absence against the background of phenomenological theories of the body, illness and disability. Our findings suggest that the atypical face disrupts these individuals' engagement with everyday projectsThe term ''disfigurement'' may carry derogative associations which serve to stigmatize those who have an atypical (facial) appearance. In order to prevent such associations in this article, we mostly opt for neutral, descriptive terms such as ''visible (facial) difference,'' ''atypical face,'' ''facial limb absence/ loss,'' or ''amputated (facial) area'' when referring to the condition and looks of the participants in our study (see for guidelines on non-offensive language as formulated by UK-based charity organization Changing Faces: https://www.changingfaces.org.uk/about-us/press-media/media-guidelines). When we cannot avoid the term ''disfigurement,'' we use quotation marks to denote its problematic nature. when it gives rise to disruptive perceptions, sensations, and observations. The face then ceases to be the absent background to perception, and becomes foregrounded in awareness. The disruptions evoked by facial difference call for adjustments: as they come to terms with their altered face, the participants in our study gradually develop various new bodily habits that re-establish their face's absence, or relate to its disruptive presence. It is through these emergent habits that facial difference comes to be embodied. By analyzing the everyday experiences of individuals with facial limb absence, this article provides a much-needed exploration of the embodied aspects of facial difference. It also exemplifies how a phenomenological account of illness and disability can do justice both to the impairments and appearance issues associated with atypical embodiment.

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“…13 Patients with head and neck cancer considered the facial disfigurement from the cancer the most stressful aspect of the head and neck cancer. 14,15 Despite the established impact of the problem on patients, there is still no objective understanding of how facial deformities are perceived by observers. This is due in part to the fact that there is not an accepted gold standard for measuring for facial disfigurement.…”

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confidence: 99%

Measuring attentional bias to peripheral facial deformities

et al. 2009

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Observers gazing on faces typically focus their attention on discriminating features, such as eyes, nose, and mouth. The well-established method of eye movement recordings was applied in a novel way to provide quantitative data showing changes in observer gaze patterns to focus on deformities. These gaze patterns are a direct reflection of observer attention. This is the first objective method to quantify the amount of distraction caused by peripheral facial deformities and may provide insight into the perception of facial deformity.

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Problems and coping behaviour of facial cancer patients

Cited by 91 publications

References 23 publications

Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients

Reliability and validity of an observer-rated disfigurement scale for head and neck cancer patients

Facing a Disruptive Face: Embodiment in the Everyday Experiences of “Disfigured” Individuals

Measuring attentional bias to peripheral facial deformities

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