Stigma among patients with lung cancer: A patient-reported measurement model

Psycho-Oncology

Volumn 23, Issue 1, 2014, Pages 81-92

  Hamann, Heidi A ^a,b   Ostroff, Jamie S ^c   Marks, Emily G ^a,b   Gerber, David E ^a,d   Schiller, Joan H ^a,d   Lee, Simon J Craddock ^a,b  

^a UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^b UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^c MEMORIAL SLOAN KETTERING CANCER CENTER   (United States)

^d UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

Author keywords

cancer; lung cancer; oncology; patient reported outcomes; stigma

Indexed keywords

ARTICLE; CANCER PATIENT; FEEDBACK SYSTEM; FEMALE; HUMAN; INFORMATION PROCESSING; LUNG CANCER; MAJOR CLINICAL STUDY; MALE; OUTPATIENT CARE; SELF REPORT; SEMI STRUCTURED INTERVIEW; SMOKING CESSATION; STIGMA;

CANCER; LUNG CANCER; ONCOLOGY; PATIENT-REPORTED OUTCOMES; STIGMA;

FEMALE; FOCUS GROUPS; HUMANS; INTERVIEWS AS TOPIC; LUNG NEOPLASMS; MALE; MODELS, PSYCHOLOGICAL; SELF CONCEPT; SMOKING; STEREOTYPING;

EID: 84891626884     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.3371     Document Type: Article

References (86)

1. American Cancer Society. What are the key statistics about lung cancer? Available from: http://www.cancer.org/cancer/lungcancer-non-smallcell/ detailedguide/non-small-cell-lung-cancer-key-statistics [cited 1/18/ 2013].
2. Aberle DR, Adams AM, Berg CD, et al,. Reduced lung-cancer mortality with low-dose computed tomographic screening. New Engl J Med 2011; 365 (5): 395-409. doi: 10.1056/NEJMoa1102873.
3. Rosell R, Carcereny E, Gervais R, et al,. Erlotinib versus standard chemotherapy as first-line treatment for European patients with advanced EGFR mutation-positive non-small-cell lung cancer (EURTAC): a multicentre, open-label, randomised phase 3 trial. Lancet Oncol 2012; 13 (3): 239-246. doi: 10.1016/S1470-2045(11)70393-X.
4. American Cancer Society. Cancer Facts & Figures 2012. American Cancer Society: Atlanta, 2012.
5. Bell K, Salmon A, Bowers M, Bell J, McCullough L,. Smoking, stigma and tobacco 'denormalization': further reflections on the use of stigma as a public health tool. A commentary on Social Science & Medicine's Stigma, Prejudice, Discrimination and Health Special Issue (67: 3). Soc Sci Med 2010; 70 (6): 795-799. doi: 10.1016/j.socscimed.2009.09.060.
6. Bayer R, Stuber J,. Tobacco control, stigma, and public health: rethinking the relations. Am J Public Health 2006; 96 (1): 47-50. doi: 10.2105/AJPH.2005.071886.
7. Gritz ER, Sarna L, Dresler C, Healton CG,. Building a united front: aligning the agendas for tobacco control, lung cancer research, and policy. Cancer Epidemiol Biomarkers Prev 2007; 16 (5): 859-863. doi: 10.1158/1055-9965.EPI-07-0342.
8. Hamann HA, Howell LA, McDonald JL,. "You did this to yourself": causal attributions and attitudes toward lung cancer patients. J Appl Soc Psychol 2013; 43: E37-E45. doi: 10.1111/jasp12053.
9. Mosher C, Danoff-Burg S,. An attributional analysis of gender and cancer-related stigma. Sex Roles 2008; 59 (11): 827-838. doi: 10.1007/s11199-008-9487-2.
10. Lobchuk MM, McClement SE, McPherson C, Cheang M,. Does blaming the patient with lung cancer affect the helping behavior of primary caregivers? Oncol Nurs Forum 2008; 35 (4): 681-9. doi: 10.1188/08.ONF.681-689.
11. Lobchuk MM, McClement SE, McPherson CJ, Cheang M,. Impact of patient smoking behavior on empathic helping by family caregivers in lung cancer. Oncol Nurs Forum 2012; 39 (2): 112-121. doi: 10.1188/12.ONF.E112-E121.
12. Cataldo JK, Slaughter R, Jahan TM, Pongquan VL, Hwang WJ,. Measuring stigma in people with lung cancer: psychometric testing of the Cataldo lung cancer stigma scale. Oncol Nurs Forum 2011; 38 (1): 46-54. doi: 10.1188/11.ONF.E46-E54.
13. Chapple A, Ziebland S, McPherson A,. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ 2004; 328 (7454): 1470. doi: 10.1136/bmj.38111.639734.7C.
14. LoConte NK, Else-Quest NM, Eickhoff J, Hyde J, Schiller JH,. Assessment of guilt and shame in patients with non-small-cell lung cancer compared with patients with breast and prostate cancer. Clin Lung Cancer 2008; 9 (3): 171-178. doi: 10.3816/CLC.2008.n.026.
15. Weiss T, Weinberger M, Schwerd AM, Holland J,. A 30-year perspective on psychosocial issues in lung cancer: how lung cancer "came out of the closet". Thorac Surg Clin 2012; 22 (4): 449-56. doi: 10.1016/j.thorsurg. 2012.07.008.
16. Holland JC, Kelly BJ, Weinberger MI,. Why psychosocial care is difficult to integrate into routine cancer care: stigma is the elephant in the room. J Natl Compr Canc Netw 2010; 8 (4): 362-366.
17. Cataldo JK, Jahan TM, Pongquan VL,. Lung cancer stigma, depression, and quality of life among ever and never smokers. Eur J Oncol Nurs 2012; 16 (3): 264-269. doi: 10.1016/j.ejon.2011.06.008.
18. Else-Quest NM, LoConte NK, Schiller JH, Hyde JS,. Perceived stigma, self-blame, and adjustment among lung, breast and prostate cancer patients. Psychol Health 2009; 24 (8): 949-964. doi: 10.1080/08870440802074664.
19. Gonzalez BD, Jacobsen PB,. Depression in lung cancer patients: the role of perceived stigma. Psycho-Oncology 2012; 21 (3): 239-246. doi: 10.1002/pon.1882.
20. Chambers S, Dunn J, Occhipinti S, et al,. A systematic review of the impact of stigma and nihilism on lung cancer outcomes. BMC Cancer 2012; 12 (1): 184. doi: 10.1186/1471-2407-12-184.
21. Earle CC, Neumann PJ, Gelber RD, Weinstein MC, Weeks JC,. Impact of referral patterns on the use of chemotherapy for lung cancer. J Clin Oncol 2002; 20: 1786-1792. doi: 10.1200/JCO.2002.07.142.
22. Tod AM, Craven J, Allmark P,. Diagnostic delay in lung cancer: a qualitative study. J Adv Nurs 2008; 61 (3): 336-343. doi: 10.1111/j.1365-2648. 2007.04542.x.
23. Wassenaar TR, Eickhoff JC, Jarzemsky DR, Smith SS, Larson ML, Schiller JH,. Differences in primary care clinicians' approach to non-small cell lung cancer patients compared with breast cancer. J Thorac Oncol 2007; 2 (8): 722-728. doi: 10.1097/JTO.0b013e3180cc2599.
24. Corner J, Hopkinson J, Roffe L,. Experience of health changes and reasons for delay in seeking care: a UK study of the months prior to the diagnosis of lung cancer. Soc Sci Med 2006; 62 (6): 1381-91. doi: 10.1016/j.socscimed.2005. 08.012.
25. Jennens RR, de Boer R, Irving L, Ball DL, Rosenthal MA,. Differences of opinion: a survey of knowledge and bias among clinicians regarding the role of chemotherapy in metastatic non-small cell lung cancer. CHEST J 2004; 126 (6): 1985-1993. doi: 10.1378/chest.126.6.1985.
26. Curran WJ, Schiller JH, Wolkin AC, Comis RL,. Addressing the current challenges of non-small-cell lung cancer clinical trial accrual. Clin Lung Cancer 2008; 9 (4): 222-226. doi: 10.3816/CLC.2008.n.033.
27. Goffman E,. Stigma: Notes on the Management of Spoiled Identity. Penguin Books: London, 1963.
28. Jones EE, Farina A, Hastorf AH, French R,. Social Stigma: The Psychology of Marked Relationships. WH Freeman: New York, 1984.
29. Link BG, Phelan JC,. Labeling and stigma. In The Handbook of the Sociology of Mental Health, Aneshensel CS, Phelan JC, (eds.), Plenum: New York, 1999.
30. Link BG, Phelan JC,. Conceptualizing stigma. Annu Rev Sociol 2001; 27: 363-85. doi: 10.1146/annurev.soc.27.1.363.
31. Corrigan PW,. The impact of stigma on severe mental illness. Cogn Behav Pract 1998; 5 (2): 201-222. doi: 10.1016/s1077-7229(98)80006-0.
32. Corrigan PW, Watson AC,. The paradox of self-stigma and mental illness. Clin Psychol Sci Pract 2002; 9 (1): 35-53. doi: 10.1093/clipsy.9.1.35.
33. Van Brakel WH,. Measuring health-related stigma-a literature review. Psychol Health Med 2006; 11 (3): 307-334. doi: 10.1080/13548500600595160.
34. Lebel S, Castonguay M, Mackness G, Irish J, Bezjak A, Devins GM,. The psychosocial impact of stigma in people with head and neck or lung cancer. Psycho-Oncology 2011. doi: 10.1002/pon.2063.
35. Rothrock NE, Kaiser KA, Cella D,. Developing a valid patient-reported outcome measure. Clin Pharmacol Ther 2011; 90 (5): 737-42. doi: 10.1038/clpt.2011.195.
36. United States. Department of Health and Human Services. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Food and Drug Administration: Rockville, MD. Federal Register 2009; 74 (235):65132-65133. http://www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf.
37. Guest G, Bunce A, Johnson L,. How many interviews are enough? An experiment with data saturation and variability. Field Meth 2006; 18 (1): 59-82. doi: 10.1177/1525822x05279903.
38. Sandelowski M,. Sample size in qualitative research. Res Nurs Health 1995; 18 (2): 179-183.
39. Pusic AL, Klassen AF, Scott AM, Klok JA, Cordeiro PG, Cano SJ,. Development of a new patient-reported outcome measure for breast surgery: the BREAST-Q. Plast Reconstr Surg 2009; 124 (2): 345-353. doi: 10.1097/PRS. 0b013e3181aee807.
40. Bloor M, Frankland J, Thomas M, Robson K,. Focus Groups in Social Research. Sage: London, 2001.
41. Kuzel AJ,. Sampling in qualitative inquiry. In Doing Qualitative Research, Crabtree BF, Miller WL, (eds.), Sage: Newbury Park, CA, 1992; 31-44.
42. Gerber DE, Hamann HA, Rasco DW, Woodruff S, Lee SJC,. Patient comprehension and attitudes toward maintenance chemotherapy for lung cancer. Patient Educ Couns 2012; 89 (1): 102-108. doi: 10.1016/j.pec.2012.04.013.
43. Creswell J,. Qualitative Inquiry and Research Design: Choosing among Five Traditions. Sage Publications: Thousand Oaks, California, 1988.
44. Miles MB, Huberman AM,. Qualitative Data Analysis. Sage: Newbury Park, California, 1994.
45. Bradley EH, Curry LA, Devers KJ,. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 2007; 42 (4): 1758-1772. doi: 10.1111/j.1475-6773.2006.00684.x.
46. Cohen DJ, Crabtree BF,. Evaluative criteria for qualitative research in health care: controversies and recommendations. Ann Fam Med 2008; 6 (4): 331-9. doi: 10.1370/afm.818.
47. Armstrong D, Gosling A, Weinman J, Marteau T,. The place of inter-rater reliability in qualitative research: an empirical study. Sociology 1997; 31 (3): 597-606. doi: 10.1177/0038038597031003015.
48. Hruschka DJ, Schwartz D, St.John DC, Picone-Decaro E, Jenkins RA, Carey JW,. Reliability in coding open-ended data: lessons learned from HIV behavioral research. Field Meth 2004; 16 (3): 307-331. doi: 10.1177/1525822x04266540.
49. Lombard M, Snyder-Duch J, Bracken CC,. Content analysis in mass communication: assessment and reporting of intercoder reliability. Hum Comm Res 2002; 28 (4): 587-604. doi: 10.1111/j.1468-2958.2002.tb00826.x.
50. Thompson C, McCaughan D, Cullum N, Sheldon TA, Raynor P,. Increasing the visibility of coding decisions in team-based qualitative research in nursing. Int J Nurs Stud 2004; 41 (1): 15-20. doi: 10.1016/j.ijnurstu.2003.03.001.
51. Mays N, Pope C,. Rigour and qualitative research. Brit Med J 1995; 311 (6997): 109-12. doi: 10.1136/bmj.311.6997.109.
52. Corrigan PW, Watson AC, Barr L,. The self-stigma of mental illness: implications for self-esteem and self-efficacy. J Soc Clin Psychol 2006; 25 (8): 875-884. doi: 10.1521/jscp.2006.25.8.875.
53. Jacoby A,. Felt versus enacted stigma: a concept revisited: evidence from a study of people with epilepsy in remission. Soc Sci Med 1994; 38 (2): 269-274.
54. Scambler G, Hopkins A,. Being epileptic: coming to terms with stigma. Sociol Health Illn 1986; 8 (1): 26-43. doi: 10.1111/1467-9566.ep11346455.
55. Pinel EC,. Stigma consciousness in intergroup contexts: the power of conviction. J Exp Soc Psychol 2002; 38 (2): 178-185. doi: 10.1006/jesp.2001. 1498.
56. Santuzzi AM, Ruscher JB,. Stigma salience and paranoid social cognition: understanding variability in metaperceptions among individuals with recently-acquired stigma. Soc Cognit 2002; 20 (3): 171-197. doi: 10.1521/soco.20.3.171.21105.
57. Pinel EC,. Stigma consciousness: the psychological legacy of social stereotypes. J Pers Soc Psychol 1999; 76 (1): 114-28. doi: 10.1037/0022-3514.76. 1.114.
58. Major B, O'Brien LT,. The social psychology of stigma. Annu Rev Psychol 2005; 56 (1): 393-421. doi: 10.1146/annurev.psych.56.091103.070137.
59. Weiner B,. Judgments of Responsibility: A Foundation for a Theory of Social Conduct. Guilford: New York, 1995.
60. Bulman RJ, Wortman CB,. Attributions of blame and coping in the "real world": severe accident victims react to their lot. J Pers Soc Psychol 1977; 35 (5): 351-363. doi: 10.1037/0022-3514.35.5.351.
61. Tangney JP,. Assessing individual differences in proneness to shame and guilt: development of the Self-Conscious Affect and Attribution Inventory. J Pers Soc Psychol 1990; 59 (1): 102-11. doi: 10.1037//0022-3514.59.1.102.
62. Janoff-Bulman R,. Characterological versus behavioral self-blame: inquiries into depression and rape. J Pers Soc Psychol 1979; 37 (10): 1798-1809. doi: 10.1037/0022-3514.37.10.1798.
63. Riessman CK,. Stigma and everyday resistance practices: childless women in South India. GENDSOC 2000; 14 (1): 111-135. doi: 10.1177/089124300014001007.
64. Holwerda N, Sanderman R, Pool G, et al,. Do patients trust their physician? The role of attachment style in the patient-physician relationship within one year after a cancer diagnosis. Acta Oncol 2013; 52 (1): 110-117. doi: 10.3109/0284186X.2012.689856.
65. Hillen MA, de Haes HCJM, Smets EMA,. Cancer patients' trust in their physician-a review. Psycho-Oncology 2011; 20 (3): 227-241. doi: 10.1002/pon.1745.
66. Hamann HA, Lee L-W, Schiller JH, et al,. Clinician perceptions of care difficulty, quality of life, and symptom reports for lung cancer patients: results from the ECOG SOAPP study (E2Z02). J Clin Oncol 2010; 28 (15 suppl): 9102.
67. Morse D, Edwardsen E, Gordon HS,. Missed opportunities for interval empathy in lung cancer communication. Arch Intern Med 2008; 168 (17): 1853-1858. doi: 10.1001/archinte.168.17.1853.
68. Leventhal H, Brissette I, Leventhal EA,. The common-sense model of self-regulation of health and illness. In The Self-Regulation of Health and Illness Behavior, Cameron LD, Leventhal H, (eds.), Routledge: New York, 2003; 42-65.
69. Croom AR, Hamann HA, Kehoe SM, Paulk E, Wiebe DJ,. Illness perceptions matter: understanding quality of life and advanced illness behaviors in female patients with late-stage cancer. Journal of Supportive Oncology in press.
70. Llewellyn CD, McGurk M, Weinman J,. Illness and treatment beliefs in head and neck cancer: is Leventhal's common sense model a useful framework for determining changes in outcomes over time? J Psychosom Res 2007; 63 (1): 17-26. doi: 10.1016/j.jpsychores.2007.01.013.
71. Milbury K, Badr H, Carmack C,. The role of blame in the psychosocial adjustment of couples coping with lung cancer. Ann Behav Med 2012; 44 (3): 331-340. doi: 10.1007/s12160-012-9402-5.
72. Salander P,. Attributions of lung cancer: my own illness is hardly caused by smoking. Psycho-Oncology 2007; 16 (6): 587-592. doi: 10.1002/pon.1121.
73. Festinger LA,. A theory of cognitive dissonance. Row, Peterson: Evanston, IL, 1957.
74. Salander P, Windahl G,. Does 'denial' really cover our everyday experiences in clinical oncology? A critical view from a psychoanalytic perspective on the use of 'denial'. Br J Med Psychol 1999; 72 (2): 267-279.
75. Siegel R, Naishadham D, Jemal A,. Cancer statistics, 2013. CA Cancer J Clin 2013; 63 (1): 11-30. doi: 10.3322/caac.21166.
76. Newport F,. Seven in 10 Americans Are Very or Moderately Religious. Gallup Press: State of the States, 2012. Available from: http://www.gallup.com/ poll/159050/seven-americans-moderately-religious.aspx [cited February 20, 2013].
77. Minkler M,. Personal responsibility for health? A review of the arguments and the evidence at century's end. Health Educ Behav 1999; 26 (1): 121-141. doi: 10.1177/109019819902600110.
78. Lawson V,. Geographies of care and responsibility. Ann Assoc Am Geogr 2007; 97 (1): 1-11. doi: 10.1111/j.1467-8306.2007.00520.x.
79. Nurit Guttman WHR,. On being responsible: ethical issues in appeals to personal responsibility in health campaigns. J Health Commun 2001; 6 (2): 117-136. doi: 10.1080/10810730116864.
80. Sengupta S, Banks B, Jonas D, Miles MS, Smith GC,. HIV interventions to reduce HIV/AIDS stigma: a systematic review. AIDS Behav 2011; 15 (6): 1075-1087. doi: 10.1007/s10461-010-9847-0.
81. No one deserves to die. Available from: http://www.noonedeservestodie. org/ [cited 12/14/ 2012].
82. Luoma JB, Kohlenberg BS, Hayes SC, Bunting K, Rye AK,. Reducing self-stigma in substance abuse through acceptance and commitment therapy: model, manual development, and pilot outcomes. Addiction Res Theor 2008; 16 (2): 149-165. doi: 10.1080/16066350701850295.
83. Fledderus M, Bohlmeijer ET, Pieterse ME, Schreurs KMG,. Acceptance and commitment therapy as guided self-help for psychological distress and positive mental health: a randomized controlled trial. Psychol Med 2012; 42 (03): 485-495. doi: 10.1017/S0033291711001206.
84. Luoma JB, Kohlenberg BS, Hayes SC, Fletcher L,. Slow and steady wins the race: a randomized clinical trial of acceptance and commitment therapy targeting shame in substance use disorders. J Consult Clin Psychol 2012; 80 (1): 43-53. doi: 10.1037/a0026070.
85. Orsillo SM, Batten SV,. Acceptance and commitment therapy in the treatment of posttraumatic stress disorder. Behav Modif 2005; 29 (1): 95-129. doi: 10.1177/0145445504270876.
86. Berger B, Ferrans CE, Lashley FR,. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Research in Nursing and Health 2001; 24: 518-529. doi: 10.1002/nur.10011.