Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI)

Quality of Life Research

Volumn 18, Issue 5, 2009, Pages 585-595

  Rao, Deepa ^a,b,c   Choi, Seung W ^a,c   Victorson, David ^a,b,c   Bode, Rita ^d   Peterman, Amy ^e   Heinemann, Allen ^b,c,d   Cella, David ^a,b,c  

^a Research and Education   (United States)

^b NORTHWESTERN UNIVERSITY   (United States)

^c NORTHWESTERN UNIVERSITY   (United States)

^d REHABILITATION INSTITUTE OF CHICAGO   (United States)

^e UNIVERSITY OF NORTH CAROLINA AT CHARLOTTE   (United States)

Author keywords

Chronic illness; Enacted stigma; Measurement; Neurological disorders; Self stigma

Indexed keywords

ADULT; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; CHRONIC DISEASE; COMPARATIVE STUDY; CORRELATION ANALYSIS; EPILEPSY; EXERCISE; FACTORIAL ANALYSIS; FEMALE; HUMAN; INFORMATION; INFORMATION PROCESSING; INTERVIEW; MAJOR CLINICAL STUDY; MALE; MEASUREMENT; NEUROLOGIC DISEASE; PARKINSON DISEASE; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; RATING SCALE; STATISTICAL MODEL; STIGMA; THEORY;

CHRONIC DISEASE; FEMALE; FOCUS GROUPS; HEALTH STATUS; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NERVOUS SYSTEM DISEASES; QUALITY OF LIFE; STEREOTYPING;

EID: 67349239820     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-009-9475-1     Document Type: Article

References (47)

1. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster, Inc.
2. B Weiner RP Perry J Magnusson 1988 An attributional analysis of reactions to stigmas Journal of Personality and Social Psychology 55 5 738 748 10.1037/0022-3514.55.5.738
3. PW Corrigan DL Penn 1999 Lessons from social psychology on discrediting psychiatric stigma The American Psychologist 54 9 765 776 10.1037/0003-066X.54. 9.765
4. Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social stigma the psychology of marked relationships. New York: W.H. Freeman and Company.
5. N Rüsch M Angermeyer P Corrigan 2005 Mental illness stigma: Concepts, consequences, and initiative to reduce stigma European Psychiatry 20 8 529 539 10.1016/j.eurpsy.2005.04.004
6. K Sikkema S Kalichman R Hoffmann J Koob J Kelly T Heckman 2000 Coping strategies and emotional well-being among HIV-infected men and women experiencing AIDS-related bereavement AIDS Care 12 5 613 624 10.1080/095401200750003798
7. JA Sirey ML Bruce GS Alexopoulos DA Perlick SJ Friedman BS Meyers 2001 Stigma as a barrier to recovery: Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence Psychiatric Services (Washington, D.C.) 52 12 1615 1620 10.1176/appi.ps.52.12.1615
8. P Corrigan A Watson L Barr 2006 The self-stigma of mental illness: Implications for self esteem and self efficacy Journal of Social and Clinical Psychology 25 9 875 884 10.1521/jscp.2006.25.8.875
9. PW Corrigan AC Watson 2002 The paradox of self-stigma and mental illness Clinical Psychology: Science and Practice 9 1 35 53
10. W Steward GM Herek J Ramakrishna S Bharat S Chandy J Wrubel ML Ekstrand 2008 HIV-related stigma: adapting a theoretical framework for use in India Social Science and Medicine 67 8 1225 1235 10.1016/j.socscimed.2008.05.032
11. A Jacoby 1994 Felt versus enacted stigma: A concept revisited Social Science and Medicine 38 2 269 274 10.1016/0277-9536(94)90396-4
12. B Link L Yang J Phelan P Collins 2004 Measuring mental illness stigma Schizophrenia Bulletin 30 3 511 541
13. A Watson P Corrigan J Larson M Sells 2007 Self-stigma in people with mental illness Schizophrenia Bulletin 33 6 1312 1318
14. BE Berger CE Ferrans FR Lashley 2001 Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale Research in Nursing and Health 24 518 529 10.1002/nur.10011
15. J Sayles R Hays C Sarkisian A Mahajan K Spritzer W Cunningham 2008 Development and psychometric assessment of a multidimensional measure of internalized HIV stigma in a sample of HIV-positive adults AIDS and Behavior 12 5 748 758
16. WH Van Brakel 2006 Measuring health-related stigma: A literature review Psychology Health and Medicine 11 3 307 334 10.1080/13548500600595160
17. LC Nyblade 2006 Measuring HIV stigma: Existing knowledge and gaps Psychology Health and Medicine 11 3 335 345 10.1080/13548500600595178
18. BA Gagliardi 1991 The impact of Duchenne muscular dystrophy on families Orthopedic Nursing 10 41 49 10.1097/00006416-199109000-00009
19. FM Weaver AG Giobbie-Hurder SL Hughes G Smith JD Kubal A Ulasevich 1999 Home medical equipment receipt in a home care appropriate population Journal of Aging and Health 11 4 494 516 10.1177/089826439901100402
20. AG de Boer W Wijker JD Speelman JC de Haes 1996 Quality of life in patients with Parkinson's disease: development of a questionnaire Journal of Neurology, Neurosurgery and Psychiatry 61 1 70 74 10.1136/jnnp.61.1.70
21. D Cella S Yount N Rothrock R Gershon K Cook B Reeve 2007 The patient reported outcomes measurement informational system (PROMIS) overview and developmental work, 2004-2006 Medical Care 45 5 S3 S11 10.1097/01.mlr. 0000258615.42478.55
22. Corbin, J., & Strauss, A. (2008). Basics of qualitative research. Los Angeles: Sage.
23. J Lawrence J Fauerbach L Heinberg M Doctor D Thombs 2006 The reliability and validity of the perceived stigmatization questionnaire (PSQ) and the social comfort questionnaire (SCQ) among an adult burn survivor sample Psychological Assessment 18 1 106 111 10.1037/1040-3590.18.1.106
24. J Cramer L Westbrook O Devinsky K Perrine M Glassman C Camfield 1999 Development of the quality of life in epilepsy inventory for adolescents: The QOLIE-AD-48 Epilepsia 40 1114 1121 10.1111/j.1528-1157.1999.tb00828.x
25. A Jacoby G Baker D Smith M Dewey D Chadwick A Jacoby G Baker D Smith M Dewey D Chadwick 1993 Measuring the impact of epilepsy: The development of a novel scale Epilepsy Research 16 1 83 88 10.1016/0920-1211(93)90042-6
26. D Loring G Larrabee K Meador G Lee 2005 Dimensions of the epilepsy foundation concerns index Epilepsy & Behavior 6 3 348 352 10.1016/j.yebeh.2005.02.001
27. C Green G Kiebert C Murphy J Mitchell M Brien A Burrell 2003 Patients' health-related quality of life and health state values for motor neurone disease/amyotrophic lateral sclerosis Quality of Life Research 12 565 574 10.1023/A:1025052609818
28. D Cella K Dineen B Arnason A Reder K Webster G Karabatsos 1996 Validation of the functional assessment of multiple sclerosis quality of life instrument Neurology 47 129 139
29. H Ford E Gerry A Tennant D Whalley R Haigh M Johnson 2001 Developing a disease-specific quality of life measure for people with multiple sclerosis Clinical Rehabilitation 15 247 258 10.1191/026921501673658108
30. Z Rotstein Y Barak S Noy A Achiron 2000 Quality of life in multiple sclerosis: Development and validation of the 'RAYS' scale and comparison with the SF-36 International Journal for Quality in Health Care 12 6 511 517 10.1093/intqhc/12.6.511
31. DA DeWalt N Rothrock S Yount AA Stone 2007 Evaluation of item candidates: The PROMIS qualitative item review Medical Care 45 5, Suppl 1 S12 S21 10.1097/01.mlr.0000254567.79743.e2
32. Willis, G. B. (1999). Cognitive interviewing: A "how to" guide, from the short course "reducing survey error through research on the cognitive and decision processes in surveys". Presented at: Meeting of the American Statistical Association; Dallas, TX, USA.
33. Ryan, G., & Bernard, H. (2000). Data management and analysis methods. In N. Denzin & Y. Lincoln (Eds.), Handbook of qualitative research. Thousand Oaks, CA: Sage Publications.
34. Samejima, F. (1969). Estimation of latent ability using a response pattern of graded scores. Psychometrika Monograph, No. 17.
35. M Orlando D Thissen 2003 Further investigation of the performance of S-X2: An item fit index for use with dichotomous item response theory models Applied Psychological Measurement 27 289 298 10.1177/0146621603027004004
36. WC LaFrance AM Kanner B Hermann 2008 Psychiatric comorbidities in epilepsy International Review of Neurobiology 83 347 383 10.1016/S0074-7742(08) 00020-2
37. J Alonso A Buron R Bruffaerts Y He J Posada-Villa JP Lepine MC Angermeyer D Levinson G de Girolamo H Tachimori ZN Mneimneh ME Medina-Mora J Ormel KM Scott O Gureje JM Haro S Gluzman S Lee G Vilagut RC Kessler M Von Korff 2008 Association of perceived stigma and mood and anxiety disorders: Results from the World Mental Health Surveys Acta Psychiatrica Scandinavica 118 4 305 314 10.1111/j.1600-0447.2008.01241.x
38. C Zubrod M Schneiderman E Frei 1960 Appraisal of methods for the study of chemotherapy of cancer in man: Comparative therapeutic trial of nitrogen mustard and triethylene thiophosphoramide Journal of Chronic Diseases 11 7 33 10.1016/0021-9681(60)90137-5
39. J Cohen 1992 A power primer Psychological Bulletin 112 155 159 10.1037/0033-2909.112.1.155
40. Hambleton, R. K., Swaminathan, H., & Rogers, H. J. (1992). Fundamentals of item response theory. Newbury Park, CA: Sage
41. R Penfield 2005 DIFAS: Differential item functioning analysis system Applied Psychological Measurement 29 150 10.1177/0146621603260686
42. L Perez J Huang L Jansky C Nowinski D Victorson A Peterman 2007 Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions The Journal of Neuroscience Nursing 39 6 342 353 10.1097/01376517- 200712000-00005
43. RB Cattell 1966 The screen test for the number of factors Multivariate Behavioral Research 1 245 276 10.1207/s15327906mbr0102-10
44. HF Kaiser 1960 The application of electronic computers to factor analysis Educational and Psychological Measurement 20 141 151 10.1177/001316446002000116
45. McDonald, R. P. (1999). Test theory: A unified treatment. Mahwah, NJ: Lawrence Erlbaum.
46. JS Lai PK Crane D Cella 2006 Factor analysis techniques for assessing sufficient unidimensionality of cancer related fatigue Quality of Life Research 15 1179 1190 10.1007/s11136-006-0060-6
47. S Reise J Morizot R Hays 2007 The role of the bifactor model in resolving dimensionality issues in health outcomes measures Quality of Life Research 16 19 31 10.1007/s11136-007-9183-7