Mapping out the social experience of cancer patients with facial disfigurement

DOI: 10.4236/health.2010.25063   PDF   HTML     5,577 Downloads   10,184 Views   Citations


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.

Share and Cite:

Bonanno, A. and Choi, J. (2010) Mapping out the social experience of cancer patients with facial disfigurement. Health, 2, 418-428. doi: 10.4236/health.2010.25063.

Conflicts of Interest

The authors declare no conflicts of interest.


[1] Mood, D.W. (1997) Cancers of the head and neck. In: Varricchio, C., Ed., A Cancer Source Book for Nurses, Jones and Bartlett Publishers, Sudbury, 271-283.
[2] Davis, K., Wingo, P. and Parker, S. (1998) Cancer statistics by race and ethnicity. CA: A Cancer Journal for Clinicians, 48(1), 31-48.
[3] Davis, K., Roumanas, E.D. and Nishimura, R.D. (1997) Prosthetic-surgical collaboration in the rehabilitation of patients with head and neck defects. Otolaryngologic Clinics of North America, 30(4), 631-645.
[4] Dropkin, M.J. (1999) Body image and quality of life after head and neck cancer surgery. Cancer Practice, 7(6), 309-313.
[5] American Cancer Society. (2008) Detailed guide: Eye cancer.
[6] Esmaeli, B. (ed.) (2009) Ophthalmic Oncology, Springer, Norwell.
[7] Anderson, R.C. and Franke, K.A. (2002) Psychological and psychosocial implications of head and neck cancer. Internet Journal of Mental Health, 1(2), 55-64.
[8] Cole, J. (1998) About face. The MIT Press, Cambridge.
[9] Jackson, L.A. (2002) Physical attractiveness: A sociostructural perspective. In: Cash, T.F. and Pruzinsky, T., Eds., Body image. A handbook of theory, research, and clinical practice. The Guilford Press, New York, 13-21.
[10] Kish, V. and Lansdown, R. (2000). Meeting the psychosocial impact of facial disfigurement: Developing a clinical service for children and families. Clinical Child Psychology and Psychiatry, 5(4), 497-512.
[11] Macgregor, F. (1990) Facial disfigurement: Problems and management of social interaction and implication for mental health. Aesthetic and Plastic Surgery, 14(4), 249- 257.
[12] Furness, P., Garrud, P., Faulder, A. and Swift, J. (2006) Coming to terms. A grounded theory of adaptation to facial surgery in adulthood. Journal of Health Psychology, 11(3), 453-466.
[13] Goffman, E. (1963) Stigma. Notes on the management of spoiled identity. Simon & Shuster, New York, 2-52.
[14] Hawkesworth, M. (2001) Disabling spatialities and the regulation of a visible secret. Urban Studies, 38(2), 299- 318.
[15] Hughes, M. (1998) The social consequences of facial disfigurement. Ashgate, Aldershot, 24-279.
[16] Macgregor, F. (1974) Transformation and identity: The face and plastic surgery. Quadrangle/The New York Times Book Co, New York, 8-208.
[17] Bull, R. and Rumsey, N. (1988) The social psychology of facial appearance. Springer Vale, New York.
[18] Cash, T.F. and Pruzinsky, T. (eds.) (2002) Body image. A handbook of theory, research, and clinical practice. The Guilford Press, New York.
[19] Bull, R. and Stevens, J. (1981) The effects of facial disfigurement on helping behavior. The Italian Journal of Psychology, 8(1), 345-351.
[20] Callahan, C. (2004) Facial disfigurement and sense of self in head and neck cancer. Social Work in Health Care, 40(2), 73-87.
[21] Kent, G. (2000) Understanding the experiences of people with disfigurements: An integration of four models of social and psychological functioning. Psychology, Health & Medicine, 5(2), 117-129.
[22] Clarke, A., Rumsey, N., Collin, J.R.O. and Wyn-Williams, M. (2003) Psychological distress associated with disfiguring eye conditions. Eye, 17, 35-40.
[23] Newell, R.J. (1999) Altered body image: A fear-avoidance model of psycho-social difficulties following disfigurement. Journal of Advanced Nursing, 30(5), 1230- 1238.
[24] Pruzinsky, T., Levine, E., Persing, J.A., Barth, J.T. and Obrecht, R. (2006) Facial trauma and facial cancer. In: Sarwer, D.B., Pruzinsky, T., Cash, T., Goldwyn, R.M., and Persing, J.A., Eds., Psychological aspects of reconstructive and cosmetic plastic surgery: Clinical, empirical and ethical perspectives, Lippincott Williams, Philadelphia PA, 125-143
[25] Thompson, A. and Kent, G. (2001) Adjusting to disfigurement: process involved in dealing with being visibly different. Clinical Psychology Review, 21(5), 663-682.
[26] Strauss, A. (1987) Qualitative analysis for the social scientists. Cambridge University Press, New York.
[27] Fife, B.L. and Wright, E.R. (2000) The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health Social Behavior, 42, 50-67.
[28] Cahill, S. and Eggleston, R. (1995) Reconsidering the stigma of physical disability: Wheelchair use and public kindness. The Sociological Quarterly, 36(4), 681-698.
[29] Susman, J. (1994) Disability, stigma and deviance. Social Science and Medicine, 38, 15-22.
[30] Angermeyer, M. and Matschinger, H. (1994) Lay beliefs about schizophrenic disorder: The results of a population study in Germany. Acta Psychiatrica Scandinavica, 89, 39-45.
[31] Corrigan, P.W. and Penn, D.L. (1999) Lessons from social psychology on discrediting psychiatric stigma. American Psychologist, 54, 765-776.
[32] Clarke, A. (1999) Psychosocial aspects of facial disfigurement: problems, management and the role of a lay-led organization. Psychology, Health and Medicine, 4(2), 127-142.
[33] Synnott, A. (1989) Truth and goodness, mirrors and masks—Part I: A sociology of beauty and the face. The British Journal of Sociology, 40(4), 607-636.
[34] Link, B.G. and Phelan, J.C. (2001) Conceptualizing Stigma. Annual Review of Sociology, 27, 363-385.
[35] Jacobi, A. (1994) Felt versus enacted stigma: A concept revisited. Social Science and Medicine, 38(2), 269-274.
[36] Feingold, A. (1992) Good looking people are not what we think. Psychological Bulletin, 111, 304-341.
[37] Hagedoorm, M. and Molleman, E. (2006) Facial disfigurement in patients with head and neck cancer: The role of social self-efficiency. Health Psychology, 25(5), 643- 647.
[38] Rybarczyk, B.D. and Behel, J.M. (2002) Rehabilitation medicine and body image. In: Cash, T.F. and Pruzinsky, T., Eds., Body image. A handbook of theory, research, and clinical practice. The Guilford Press, New York, 387-393.
[39] van Doorne, J.M., van Waas, M.A. and Bergsma, J. (1994) Facial disfigurement after cancer resection: A problem with an extra dimension. Journal of Investigative Surgery, 7(4), 321-326.
[40] Bonanno, A. and Choi, J.Y. (2009) Psychosocial aspects of orbitofacial disfigurement in cancer patients. In: Esmaeli, B., Ed., Ophthalmic Oncology, Norwell, Springer, 96-105.
[41] Millsopp, L., Brandom L., Humphris, G. and Lowe, D. (2006) Facial appearance after operations for oral and oropharyngeal cancer: A comparison of case notes and patient-completed questionnaire. British Journal of Oral and Maxillofacial Surgery, 44, 358-363.
[42] Valente, S. (2004) Visual disfigurement and depression. Plastic Surgical Nursing, 24(4), 14-146.
[43] Partridge, J. (1998) Changing faces: Taking up Macgregor’s challenge. Journal of Burn Care and Rehabilitation, 19, 174-180.
[44] Vickery, L.E., Latchford, G., Hewinson, J., Bellew, M. and Faber, T. (2003) The impact of head and neck cancer and facial disfigurement on the quality of life of patients and their partners. Head & Neck, 25(4), 289-296.
[45] Bonanno, A., Choi, J.Y. and Esmaeli, B. (2008) The contradictions of medical sociology understanding of stigma in facially disfigured individuals. Annual Meeting of the Southwest Social Science Association, Las Vegas.
[46] Mosher, C. and Danoff-Burg, S. (2007) Death anxiety and cancer related stigma: A terror management analysis. Death Studies, 31, 855-907.
[47] Berremberg, J.L. (1989) Attitudes towards cancer as a function of experience with the disease: A test of three models. Psychology and Health, 3, 233-243.
[48] Bloom, J. and Kessler L. (1994) Emotional support following cancer: A test of the stigma and social activity hypothesis. Journal of Health and Social Behavior, 35, 118-133.
[49] Weiner, B., Perry, R.P. and Magnusson, J. (1988) An attributional analysis of reaction to stigma. Journal of Social Issues, 35(1), 120-155.
[50] Glaser, B. and Strauss, A. (1987) The discovery of grounded theory. Aldine Transaction New Brunswick, NJ.

comments powered by Disqus

Copyright © 2020 by authors and Scientific Research Publishing Inc.

Creative Commons License

This work and the related PDF file are licensed under a Creative Commons Attribution 4.0 International License.