Original Article
Cancer-related trauma, stigma and growth: the ‘lived’ experience of head and neck cancer
J. Threader PhD,
L. McCormack PhD,
J. Threader PhD
Candidate
Research School of Psychology, Australian National University, Canberra, ACT, Australia
Search for more papers by this authorCorresponding Author
L. McCormack PhD
Senior Lecturer/Clinical Psychologist
Faculty of Science and IT, School of Psychology, University of Newcastle, Callaghan, NSW, Australia
Correspondence address: Lynne McCormack, Faculty of Science and IT, School of Psychology, University of Newcastle, Callaghan, NSW 2308, Australia (e-mail: [email protected]).Search for more papers by this authorJ. Threader PhD,
L. McCormack PhD,
J. Threader PhD
Candidate
Research School of Psychology, Australian National University, Canberra, ACT, Australia
Search for more papers by this authorCorresponding Author
L. McCormack PhD
Senior Lecturer/Clinical Psychologist
Faculty of Science and IT, School of Psychology, University of Newcastle, Callaghan, NSW, Australia
Correspondence address: Lynne McCormack, Faculty of Science and IT, School of Psychology, University of Newcastle, Callaghan, NSW 2308, Australia (e-mail: [email protected]).Search for more papers by this authorAbstract
Head and neck cancer is associated with multiple layers of distress including stigma. Stigma attraction or devalued social identity is twofold: (1) it is a cancer associated with lifestyle risk factors and (2) treatment often results in confronting facial disfigurement. Subjective interpretations from nine head and neck cancer patients were analysed using Interpretative Phenomenological Analysis. An overarching superordinate theme – Distress, Stigma and Psychological Growth – encompassed four subordinate themes. Two themes captured the expressed trauma and terror as a result of diagnosis and treatment, and two the redefining of self despite stigma through meaning making. Distress was interpreted as a catalyst for awakening new life interpretations and combined with social support to facilitate two distinct pathways of growth: (1) psychological growth without support; (2) psychological and relational growth with support. Previously unfelt empathetic understanding and altruism for others with cancer emerged from the impact of stigma on ‘self’. Acceptance allowed a new sense of identity that recognised cancer-related traumatic distress as integral to growth for these participants. The present study offers a unique insight into cancer-related trauma and stigma and the potential to redefine a more accepting, empathic and altruistic ‘self’ for psychological growth. Implications are discussed.
References
- Bernstein R.J. (1983) Beyond Objectivism and Relativism: Science, Hermeneutics, and Praxis. University of Pennsylvania Press, Philadelphia, PA, USA.
- Blaikie N.W. (1991) A critique of the use of triangulation in social research. Quality and Quantity 25, 115–136.
- Breitbart W. & Holland J. (1988) Psychosocial aspects of head and neck cancer. Seminars in Oncology 15, 61–69.
- Blumer H. (1969) Symbolic interactionism. Prentice Hall, Englewood Cliffs, NJ.
- Butler L.D., Blasey C.M., Garlan R.W., McCaslin S.E., Azarow J., Chen X.-H., Desjardins J.C., DiMiceli S., Seagraves D.A., Hastings T.A., Kraemer H.C. & Spiegel D. (2005) Posttraumatic growth following the terrorist attacks of September 11th 2001: Cognitive coping and trauma symptom predictors in an internet convenience sample. Traumatology 11, 247–267.
10.1177/153476560501100405 Google Scholar
- Calhoun L.G. & Tedeschi R.G. (1999) Facilitating Posttraumatic Growth: A Clinician's Guide. Lawrence Erlbaum, Mahwah, NJ.
10.4324/9781410602268 Google Scholar
- Callahan C. (2005) Facial disfigurement and sense of self in head and neck cancer. Social Work in Health Care 40, 73–87. doi:10.1300/J010v40n02_05.
- Carlson L.E., Angen M., Cullum J., Goodey E., Koopmans J., Lamont L., MacRae J.H., Martin M., Pelletier G., Robinson J., Simpson J.S.A., Speca M., Tillotson L. & Bultz B.D. (2004) High levels of untreated distress and fatigue in cancer patients. British Journal of Cancer 90, 2297–2304. doi:10.1038/sj.bjc.6601887.
- Castellsagué X., Quintana M.J., Martínez M.C., Nieto A., Sánchez M.J., Juan A., Monner A., Carrera M., Agudo A., Quer M., Muñoz N., Herrero R., Franceschi S. & Bosch F.X. (2004) The role of type of tobacco and type of alcoholic beverage in oral carcinogenesis. International Journal of Cancer 108, 741–749. doi:10.1002/ijc.11627.
- Chapple A., Ziebland S. & McPherson A. (2004) Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. British Medical Journal 328, 1470. doi:10.1136/bmj.38111.639734.7C.
- Clarke A. (1999) Psychosocial aspects of facial disfigurement: problems, management and the role of a lay-led organization. Psychology, Health and Medicine 4, 127–142. doi:10.1080/135485099106270.
10.1080/135485099106270 Google Scholar
- Cordova M.J., Giese-Davis J., Golant M., Kronenwetter C., Chang V. & Spiegel D. (2007) Breast cancer as trauma: posttraumatic stress and posttraumatic growth. Journal of Clinical Psychology in Medical Settings 14, 308–319. doi:10.1007/s10880-007-9083-6.
- Crocker J., Major B. & Steele C. (1998) Social stigma. In: The Handbook of Social Psychology, 4th edn, Vol. 2 (eds D.T. Gilbert, S.T. Fiske & G. Lindzey), pp. 504–553. McGraw-Hill, Boston, MA, USA.
- Denzin N.K. (1995) Symbolic interactionism. In: Rethinking Psychology (eds J.A. Smith, R. Harre & L. Van Langenhove), pp. 43–58. Sage, London, UK.
- Devins G.M., Stam H. & Koopmans J.P. (1994) Psychological impact of lary-ngectomy mediated by perceived stigma and illness intrusiveness. The Canadian Journal of Psychiatry 39, 608–616.
- Dropkin M.J. (1989) Coping with disfigurement and dysfunction after head and neck cancer surgery: a conceptual framework. Seminars in Oncology Nursing 5, 213–219. doi:10.1016/0749-2081(89)90095-8.
- Dropkin M.J. (1999) Body image and quality of life after head and neck cancer surgery. Cancer Practice 7, 309–313. doi:10.1046/j.1523-5394.1999.76006.x.
- Dropkin M.J. (2001) Anxiety, coping strategies, and coping behaviors in patients undergoing head and neck cancer surgery. Cancer Nursing 24, 143–148. doi:10.1097/00002820-200104000-00010.
- Dropkin M.J., Malgady R.G., Scott D.W., Oberst M.T. & Strong E.W. (1983) Scaling of disfigurement and dysfunction in postoperative head and neck patients. Head and Neck Surgery 6, 559–570. doi:10.1002/hed.2890060104.
- Fife B.L. & 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 and Social Behavior 41, 50–67. doi:10.2307/2676360.
- Fingeret M.C., Yuan Y., Urbauer D., Weston J., Nipomnick S. & Weber R. (2012) The nature and extent of body image concerns among surgically treated patients with head and neck cancer. Psycho-Oncology 21, 836–844. doi:10.1002/pon.1990.
- Frampton M. (2001) Psychological distress in patients with head and neck cancer: review. British Journal of Oral and Maxillofacial Surgery 39, 1–4. doi:10.1054/bjom.2000.0547.
- Gadamer H.-G. (1983) Hermeneutics as practical philosophy. In: Reason in the Age of Science (Transl. F. Lawrence), pp. 88–138. The MIT Press, Cambridge, UK.
- Gamba A., Romano M., Grosso L.M., Tamburini M., Cantú G., Molinari R. & Ventafridda V. (1992) Psychosocial adjustment of patients surgically treated for head and neck cancer. Head and Neck 14, 218–223. doi:10.1002/hed.2880140309.
- Goffman E. (1963) Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall, Englewood Cliffs, NJ, USA.
- Hagedoorn M. & Molleman E. (2006) Facial disfigurement in patients with head and neck cancer: the role of social self-efficacy. Health Psychology 25, 643. doi:10.1037/0278-6133.25.5.643.
- Hegel M.T., Collins E.D., Kearing S., Gillock K.L., Moore C.P. & Ahles T.A. (2008) Sensitivity and specificity of the distress thermometer for depression in newly diagnosed breast cancer patients. Psycho-Oncology 17, 556–560. doi:10.1002/pon.1289.
- Heidegger M. (1927/1962). Being and Time. Harper, New York, NY. (Original work published 1927).
- Herrero R., Castellsagué X., Pawlita M., Lissowska J., Kee F., Balaram P., Rajkumar T., Sridhar H., Rose B., Pintos J., Fernández L., Idris A., Sánchez M.J., Nieto A., Talamini R., Tavani A., Bosch F.X., Reidel U., Snijders P.J.F., Meijer C.J.L.M., Viscidi R., Muñoz N. & Franceschi S. (2003) Human papillomavirus and oral cancer: The International Agency for Research on Cancer multicenter study. Journal of the National Cancer Institute 95, 1772–1783. doi:10.1093/jnci/djg107.
- Holland J.C. & Reznik I. (2005) Pathways for psychosocial care of cancer survivors. Cancer 104, 2624–2637. doi:10.1002/cncr.21252.
- Jones E.E., Farina A., Hastorf A.H. & deFrench R. S. (1984) Social Stigma: The Psychology of Marked Relationships. W.H. Freeman, New York, NY, USA
- Joseph S. (2011) What Doesn't Kill Us: The New Psychology of Posttraumatic Growth. Basic Books, New York, NY, USA.
- Joseph S. & Linley P.A. (2005) Positive adjustment to threatening events: an organismic valuing theory of growth through adversity. Review of General Psychology 9, 262–280.
- Joseph S., Maltby J., Wood A.M., Stockton H., Hunt N. & Regel S. (2012) The Psychological Well-Being—Post-Traumatic Changes Questionnaire (PWB-PTCQ): reliability and validity. Psychological Trauma: Theory, Research, Practice, and Policy 4, 420–428. doi:10.1037/a0024740.
- Koster M. & Bergsma J. (1990) Problems and coping behaviour of facial cancer patients. Social Science and Medicine 30, 569–578. doi:10.1016/0277-9536(90)90155-L.
- Krouse J.H., Krouse H.J. & Fabian R.L. (1989) Adaptation to surgery for head and neck cancer. The Laryngoscope 99, 789–794.
- Kuo T.-T. & Ma F.-C. (2002) Symptom distresses and coping strategies in patients with non-small cell lung cancer. Cancer Nursing 25, 309–317. doi:10.1097/00002820-200208000-00007.
- Lebel S. & Devins G.M. (2008) Stigma in cancer patients whose behavior may have contributed to their disease. Future Oncology 4, 717–733. doi:10.2217/14796694.4.5.717.
- Lebel S., Castonguay M., Mackness G., Irish J., Bezjak A. & Devins G.M. (2013a) The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology 22, 140–152. doi:10.1002/pon.2063.
- Lebel S., Tomei C., Feldstain A., Beattie S. & McCallum M. (2013b) Does fear of cancer recurrence predict cancer survivors’ health care use? Supportive Care in Cancer 21, 901–906. doi: 10.1007/s00520-012-1685-3.
- Livingston J.D. & Boyd J.E. (2010) Correlates and consequences of internalized stigma for people living with mental illness: a systematic review and meta-analysis. Social Science and Medicine 71, 2150–2161. doi:10.1016/j.socscimed.2010.09.030.
- Llewellyn C.D., Horney D.J., McGurk M., Weinman J., Herold J., Altman K. & Smith H.E. (2013) Assessing the psychological predictors of benefit finding in patients with head and neck cancer. Psycho-Oncology 22, 97–105. doi:10.1002/pon.2065.
- Macgregor F.C. (1990) Facial disfigurement: problems and management of social interaction and implications for mental health. Aesthetic Plastic Surgery 14, 249–257. doi:10.1007/BF01578358.
- McCormack L. & Joseph S. (2013) Psychological growth in humanitarian aid personnel: reintegrating with family and community following exposure to war and genocide. Community, Work and Family 16, 147–163. doi:10.1080/13668803.2012.735478.
10.1080/13668803.2012.735478 Google Scholar
- McCormack L. & Joseph S. (2014) Psychological growth in aging vietnam veterans redefining shame and betrayal. Journal of Humanistic Psychology 54, 336–355. doi:10.1177/0022167813501393.
- McCormack L., Hagger M.S. & Joseph S. (2011) Vicarious growth in wives of Vietnam veterans: a phenomenological investigation into decades of “lived” experience. Journal of Humanistic Psychology 51, 273–290. doi:10.1177/0022167810377506.
- Morrill E.F., Brewer N.T., O'Neill S.C., Lillie S.E., Dees E.C., Carey L.A. & Rimer B.K. (2008) The interaction of post-traumatic growth and post-traumatic stress symptoms in predicting depressive symptoms and quality of life. Psycho-Oncology 17, 948–953. doi:10.1002/pon.1313.
- Myers E.N., De Boer M.F., McCormick L.K., Pryun J.F., Ryckman R.M. & van den Borne B. (1999) Physical and psychosocial correlates of head and neck cancer: a review of the literature. Otolaryngology-Head and Neck Surgery 120, 427–436.
- Nolen-Hoeksema S. & Davis C.G. (2004) Theoretical and methodological issues in the assessment and interpretation of posttraumatic growth. Psychological Inquiry 15, 60–64.
- Peters-Golden H. (1982) Breast cancer: varied perceptions of social support in the illness experience. Social Science and Medicine 16, 483–491. doi:10.1016/0277-9536(82)90057-0.
- Raleigh Z.T. (2010) A biopsychosocial perspective on the experience of lung cancer. Journal of Psychosocial Oncology 28, 116–125. doi:10.1080/07347330903438990.
- Ruf M., Büchi S., Moergeli H., Zwahlen R.A. & Jenewein J. (2009) Positive personal changes in the aftermath of head and neck cancer diagnosis: a qualitative study in patients and their spouses. Head and Neck 31, 513–520. doi:10.1002/hed.21000.
- Ryff C.D. (1989) Happiness is everything, or is it? Explorations on the meaning of psychological well-being. Journal of Personality and Social Psychology 57, 1069–1081. doi:10.1037/0022-3514.57.6.1069.
- Silver R.L. & Wortman C.B. (1980) Coping with undesirable life events. In: Human Helplessness: Theory and Applications (eds J. Garber & M.E.P. Seligman), pp. 297–340. Academic Press, New York, NY, USA.
- Smith J.A. (1996) Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychology and Health 11, 261–271. doi:10.1080/08870449608400256.
- Smith J.A. & Osborn M. (2008) Interpretative phenomenological analysis. In: Qualitative Psychology: A Practical Guide to Research Methods (ed. J.A. Smith), pp. 53–80. Sage, London, UK.
- Smith J.A., Michie S., Stephenson M. & Quarrell O. (2002) Risk perception and decision-making processes in candidates for genetic testing for Huntington's disease: an interpretative phenomenological analysis. Journal of Health Psychology 7, 131–144. doi:10.1177/1359105302007002398.
- Smith J.A., Flowers P. & Larkin M. (2009) Interpretative Phenomenological Analysis: Theory, Method and Research. Sage, London, UK.
- Spinelli E. (2005) The Interpreted World: An Introduction to Phenomenological Psychology, 2nd edn. Sage, London, UK.
- Stanton A.L. (2006) Psychosocial concerns and interventions for cancer survivors. Journal of Clinical Oncology 24, 5132–5137. doi:10.1200/JCO.2006.06.8775.
- Suls J. (1982) Social support, interpersonal relations, and health: benefits and liabilities. In: Social Psychology of Health and Illness (eds G. Sanders & J. Suls), pp. 255–277. Erlbaum, Hillsdale, NJ, USA.
- Tedeschi R.G. & Calhoun L.G. (1995) Trauma and Transformation: Growing in the Aftermath of Suffering. Sage Publications, Thousand Oaks, CA, USA.
10.4135/9781483326931 Google Scholar
- Thambyrajah C., Herold J., Altman K. & Llewellyn C. (2010) “Cancer doesn't mean curtains”: benefit finding in patients with head and neck cancer in remission. Journal of Psychosocial Oncology 28, 666–682. doi:10.1080/07347332.2010.516812.
- Tod A.M., Craven J. & Allmark P. (2008) Diagnostic delay in lung cancer: a qualitative study. Journal of Advanced Nursing 61, 336–343. doi:10.1111/j.1365-2648.2007.04542.x.
- Turpin M., Dallos R., Owen R. & Thomas M. (2009) The meaning and impact of head and neck cancer: an interpretative phenomenological and repertory grid analysis. Journal of Constructivist Psychology 22, 24–54. doi:10.1080/10720530802500789.
- Weiss T. (2004) Correlates of posttraumatic growth in married breast cancer survivors. Journal of Social and Clinical Psychology 23, 733–746. doi:10.1521/jscp.23.5.733.50750.
- Widows M.R., Jacobsen P.B. & Fields K.K. (2000) Relation of psychological vulnerability factors to posttraumatic stress disorder symptomatology in bone marrow transplant recipients. Psychosomatic Medicine 62, 873–882. doi:10.1097/00006842-200011000-00018.
- Zabora J., Brintzenhofeszoc K., Curbow B., Hooker C. & Piantadosi S. (2001) The prevalence of psychological distress by cancer site. Psycho-Oncology 10, 19–28. doi: 10.1002/1099-1611(200101/02)10:1%3c19:AID-PON501%3e3.0.CO;2-6.
10.1002/1099-1611(200101/02)10:1<19::AID-PON501>3.0.CO;2-6 CAS PubMed Web of Science® Google Scholar
