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Stigma in Neurological Diseases in the Tropics

  • Earnest N. Tabah
  • Faustin Yepnjio
  • Alfred K. NjamnshiEmail author
Chapter

Abstract

Stigma which has been defined as an “attribute that is deeply discrediting, and that reduces the bearer from a whole and usual person to a tainted, discounted, and inferior one”, arises from various sources and occurs in different forms. Stigma can be internalised or anticipated by the stigmatised person who accepts perceived exclusionary views of the society or who fears enacted stigma by the society on persons with a stigmatizing conditions. Lastly, stigma may be endorsed or accepted by the society.

Stigma is associated with many neurological diseases globally, especially the neglected tropical diseases. Stigma develops within the background of rich and diversified cultural beliefs and traditions, where the population’s knowledge on chronic neurological conditions is usually limited. In this context, attitudes and practices are based largely on misconceptions and myths.

Stigma has serious consequences on people affected by neglected neurological conditions and their families. It may be considered as the weakest link in the chain of disease diagnosis, treatment, prevention and eventual control or elimination. Stigma therefore constitutes a limiting factor to an acceptable quality of life for patients and the society. Various strategies have been suggested to fight stigma but this war is far from being won, although some battles have been successful.

The brain mechanisms of stigma are largely unknown although some interesting data are now available. The growth of the young discipline of social neuroscience despite many challenges may provide leads on more effective strategies for stigma reduction in the future.

Keywords

Neglected tropical diseases Nervous system Epilepsy Leprosy Onchocerciasis 

References

  1. Ahlberg BM, Mwangi R, Poggensee G, Feldmeier H, Krantz I (2003) “Better infection than hunger”. A study of illness perceptions with special focus on urinary schistosomiasis in Northern Tanzania. Afr Soc Rev 7:18–34CrossRefGoogle Scholar
  2. Ahorlu CK, Dunyo SK, Asamoah G, Simonsen PE (2001) Consequences of hydrocele and the benefits of hydrocelectomy: a qualitative study in lymphatic filariasis endemic communities on the coast of Ghana. Acta Trop 80:215–221PubMedCrossRefGoogle Scholar
  3. Atadzhanov M, Haworth A, Chomba EN, Mbewe EK, Birbeck GL (2010) Epilepsy-associated stigma in Zambia: what factors predict greater felt stigma in a highly stigmatized population? Epilepsy Behav 19:414–418. doi: 10.1016/j.ybeh.2010.08.017 PubMedCentralPubMedCrossRefGoogle Scholar
  4. Austin JK, Huberty TJ (1993) Development of the child attitude toward illness scale. J Pediatr Psychol 18:467–480PubMedCrossRefGoogle Scholar
  5. Awedoba AK (2001) Help-seeking and coping strategies in onchocerciasis afflicted communities in the context of globalisation. Res Rev 17:49–62CrossRefGoogle Scholar
  6. Babikar HE, Abbas IM (2011) Knowledge, practice and attitude toward epilepsy among primary and secondary school teachers in South Gezira locality, Gezira State, Sudan. J Family Community Med 18:17–21PubMedCentralPubMedCrossRefGoogle Scholar
  7. Baskind R, Birbeck G (2005) Epilepsy care in Zambia: a study of traditional healers. Epilepsia 46:1121–1126PubMedCentralPubMedCrossRefGoogle Scholar
  8. Bhalla D, Chea K, Hun C, Vannareth M, Huc P et al (2012) Population-based study of epilepsy in Cambodia associated factors, measures of impact, stigma, quality of life, knowledge-attitude-practice, and treatment gap. PLoS One 7(10):e46296. doi: 10.1371/journal.pone.0046296 PubMedCentralPubMedCrossRefGoogle Scholar
  9. Birbeck GL, Kalichi EM (2004) Epilepsy prevalence in rural Zambia: a door-to-door survey. Trop Med Int Health 9:92–95PubMedCrossRefGoogle Scholar
  10. Bruno E, Bartoloni A, Sofia V, Rafael F, Magnelli D, Padilla S, Quattrochi G, Bartalesi F, Segundo H, Zappia M, Preux PM, Nicoletti A (2012) Epilepsy-associated stigma in Bolivia: a community‐based study among the Guarani population An International League Against Epilepsy/International Bureau for Epilepsy/World Health Organization Global Campaign Against Epilepsy Regional Project. Epilepsy Behav 25:131–136PubMedCrossRefGoogle Scholar
  11. Burgener SC, Berger B (2008) Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia 7:31–53CrossRefGoogle Scholar
  12. Chisi JE, Muula AS, Ngwira B, Kabuluzi S (2011) A retrospective study of Human African Trypanosomiasis in three Malawian districts. Tanzanian J Health Res 13:79–86Google Scholar
  13. Corrigan PW (2007) How clinical diagnosis might exacerbate the stigma of mental illness. Soc Work 52:31–39PubMedCrossRefGoogle Scholar
  14. Cross HA, Heijnders M, Dalal SS, Mak S (2011) Interventions for stigma reduction – Part 1: Theoretical considerations. Reviews 22:62–70. doi: 10.5463/DCID.v22i3.70 Google Scholar
  15. Derks B, Inzlicht M, Kang S (2008) The neuroscience of stigma and stereotype threat. Group Processes & Intergroup Relations 11:163–181. SAGE Publications, Los Angeles, London, New Delhi and Singapore. doi: 10.1177/1368430207088036
  16. Dickter CL, Bartholow BD (2007) Racial ingroup and outgroup attention biases revealed by event-related brain potentials. Soc Cogn Affect Neurosci 2:189–198PubMedCentralPubMedCrossRefGoogle Scholar
  17. Dreller C, Page RE (1999) Genetic, developmental, and environmental determinants of honey bee foraging behaviour. In: Detrain C, Deneubourg JL, Pasteels JM (eds) Information processing in social insects. Birkhäuser, Basel, pp 187–202CrossRefGoogle Scholar
  18. Edmond R (2006) Leprosy and empire: a medical and cultural history. Cambridge University Press, CambridgeCrossRefGoogle Scholar
  19. Engel J Jr, Pedley TA (2008) Introduction: what is epilepsy? In: Engel J Jr, Pedley TA (eds) Epilepsy: a comprehensive textbook. Lippincott Williams & Wilkins–Wolters Kluwer Business, Philadelphia, pp 1–11Google Scholar
  20. Feldman DB, Crandall CS (2007) Dimensions of mental illness stigma: what about mental illness causes of social rejection. J Soc Clin Psychol 26:137–154CrossRefGoogle Scholar
  21. Goffman E (1964) Stigma: notes on the management of spoiled identity. Prentice Hall, Englewood CloffsGoogle Scholar
  22. Greimel E, Nehrkorn B, Fink GR, Kukolja J, Kohls G, Müller K, Piefke M, Kamp-Becker I, Remschmidt H, Herpertz-Dahlmann B, Konrad K, Schulte-Rüther M (2012) Neural mechanisms of encoding social and non-social context information in autism spectrum disorder. Neuropsychologia 50:3440–3449. doi: 10.1016/j.neuropsychologia.2012.09.029 PubMedCrossRefGoogle Scholar
  23. Heijnders M, Van Der Meij S (2006) The fight against stigma: an overview of stigma reduction strategies and interventions. Psychol Health Med 11:353–363, http://dx.doi.org/10.1080/13548500600595327 PubMedCrossRefGoogle Scholar
  24. Heimlich TE, Westbrook LE, Austin JK, Cramer JA, Devinsky O (2000) Brief report: adolescents’ attitudes toward epilepsy: further validation of the Child Attitude Toward Illness Scale (CATIS). J Pediatr Psychol 25:339–345, http://dx.doi.org/10.1093/jpepsy/25.5.339 PubMedCrossRefGoogle Scholar
  25. Hotez PJ (2008) Stigma: The stealth weapon of the NTD. PLoS Negl Trop Dis 2(4):e230. doi:10.1371/journal.pntd.0000230Google Scholar
  26. Insel TR (2002) Social anxiety: from laboratory studies to clinical practice. Biol Psychiatry 51(1):1–3PubMedCrossRefGoogle Scholar
  27. International Federation of Anti-Leprosy Associations (ILEP) and the Netherlands Leprosy Relief (NLR) (2011) Guidelines to reduce stigma: Guide 1. ILEP & NLR, London/AmsterdamGoogle Scholar
  28. Ito TA, Bartholow B (2009) The neural correlates of race. Trends Cogn Sci 13:524–531PubMedCentralPubMedCrossRefGoogle Scholar
  29. Ito TA, Chiao KW, Devine PG, Lorig TS, Cacioppo JT (2006) The influence of facial feedback on race bias as measured with Implicit Association Test. Psychol Sci 17:256–261PubMedCrossRefGoogle Scholar
  30. Jacob JT, Franco-Paredes C (2008) The stigmatization of leprosy in India and its impact on future approaches to elimination and control. PLoS Negl Trop Dis 2:e113. doi: 10.1371/journal.pntd.0000113.g001 PubMedCentralPubMedCrossRefGoogle Scholar
  31. James SA, LaCroix AZ, Kleinbaum DG, Strogatz DS (1984) Henryism and blood pressure differences among black men. II The role of occupational stressors. J Behav Med 7:259–275PubMedCrossRefGoogle Scholar
  32. Jilek-Aall L, Rwiza HT (1992) Prognosis of epilepsy in a rural African community: a 30-year follow-up of 164 patients in an outpatient clinic in rural Tanzania. Epilepsia 33:645–650PubMedCrossRefGoogle Scholar
  33. Jones E, Farina A, Hastorf A, Markus H, Miller D, Scott R (1984) Social stigma. The psychology of marked relationships. W.H. Freeman, New YorkGoogle Scholar
  34. Joseph N, Ray A, Reshma BK, Bhat S, Herady M, Kumar A, Kiran K (2011) Assessment of quality of life, stigma associated and self management practices among patients suffering from epileptic seizures: a cross sectional study. J Neurosci Behav Health 3:91–98Google Scholar
  35. Kaiser C, Asaba G, Leichsenring M, Kabagambe G (1998) High incidence of epilepsy related to Onchocerciasis in West Uganda. Epilepsy Res 30:247–251PubMedCrossRefGoogle Scholar
  36. Kazeem O, Adegun T (2011) Leprosy stigma: ironing out the creases. Lepr Rev 82:103–108PubMedGoogle Scholar
  37. Link BG, Phelan JC (2001) Conceptualising stigma. Annu Rev Sociol 27:363–385CrossRefGoogle Scholar
  38. Link BG, Phelan JC (2006) Stigma and its public health implications. Lancet 367:328–529CrossRefGoogle Scholar
  39. Longe AC, Osuntokun BO (1989) Prevalence of neurological disorders in Udo, a rural community in southern Nigeria. Trop Geogr Med 41:36–40PubMedGoogle Scholar
  40. Mbuba CK, Ngugi AK, Fegan G et al (2012a) Risk factors associated with the epilepsy treatment gap in Kilifi, Kenya: a cross-sectional study. Lancet Neurol 11:688–696PubMedCentralPubMedCrossRefGoogle Scholar
  41. Mbuba CK, Abubakar A, Odermatt P, Newton CR, Carter JA (2012b) Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya. Epilepsy Behav 24(1):81–85PubMedCentralPubMedCrossRefGoogle Scholar
  42. Meyer AC, Dua T, Ma J et al (2010) Global disparities in the epilepsy treatment gap: a systematic review. Bull World Health Organ 88:260–266PubMedCentralPubMedCrossRefGoogle Scholar
  43. Molina Y, Choi SW, Cella D, Rao D (2013) The stigma scale for chronic illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions. Int J Behav Med 20:450–460PubMedCrossRefGoogle Scholar
  44. Murdoch ME, Hay RJ, Mackenzie CD, Williams JF, Ghalib HW, Cousens S, Abiose A, Jones BR (1993) A clinical classification and grading system of the cutaneous changes in onchocerciasis. Br J Dermatol 129:260–269PubMedCrossRefGoogle Scholar
  45. Naeije G, Yepnjio FN, Bissek AC, Tabah EN, Tatah G, Fonsah JY, Fogang Y, Kuate C, Dachy B, Njamnshi AK (2013) Yield of training exchanges between Europe and Sub-Saharan Africa. Acta Neurol Belg 113:31–34PubMedCrossRefGoogle Scholar
  46. Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR (2010) Estimation of the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia 51:883–890PubMedCentralPubMedCrossRefGoogle Scholar
  47. Njamnshi AK, Angwafor SA, Jallon P, Muna WFT (2009a) Secondary school students’ knowledge, attitudes and practice towards epilepsy in the Batibo Health District—Cameroon. Epilepsia 50:1262–1265PubMedCrossRefGoogle Scholar
  48. Njamnshi AK, Angwafor SA, Tabah EN, Muna WFT (2009b) General public knowledge, attitudes, and practices with respect to epilepsy in the Batibo Health District, Cameroon. Epilepsy Behav 14:83–88PubMedCrossRefGoogle Scholar
  49. Njamnshi AK, Tabah EN, Yepnjio FN, Angwafor SA, Dema F, Fonsah JY, Kuate CT, de Paul Djientcheu V, Angwafo F 3rd, Muna WF (2009c) General public awareness, perceptions and attitudes with respect to epilepsy in the Akwaya Health District, South West Region, Cameroon. Epilepsy Behav 15:179–185Google Scholar
  50. Njamnshi AK, Yepnjio FN, Tabah EN, Dema F, Angwafor SA, Fonsah JY, Angwafo FF 3rd, Muna WF (2009d) Public awareness, perceptions and attitudes with respect to epilepsy in Ebolowa and Sangmelima—Urban Cameroon. Epilepsy Behav 14:628–633Google Scholar
  51. Njamnshi AK, Yepnjio FN, Bissek AC, Tabah EN, Ongolo-Zogo P, Dema F, Angwafor SA, Fonsah JY, Lekoubou A, Angwafo FF 3rd, Jallon P, Muna WF (2009e) A survey of public knowledge, attitudes, and practices with respect to epilepsy in Badissa village, Centre Region of Cameroon. Epilepsy Behav 16:254–259Google Scholar
  52. Njamnshi AK, Zoung-Kanyi Bissek AC, Yepnjio FN, Tabah EN, Angwafor AS, Kuate TC, Déma F, Fonsah YJ, Acho A, Kepeden Z-K MN, Yumo HA, Kuwoh BP, Angwafor FF III, Muna WFT (2010) A community survey of knowledge, perceptions, and practice with respect to epilepsy among traditional healers in the Batibo Health District, Cameroon. Epilepsy Behav 17:95–102Google Scholar
  53. Nsagha DS, Bamgboye EA, Assob JC, Njunda AL, Kamga HL, Zoung-Kanyi Bissek AC, Tabah EN, Oyediran AB, Njamnshi AK (2011) Elimination of leprosy as a public health problem by 2000 AD: an epidemiological perspective. Pan Afr Med J 9:4.PubMedCentralPubMedGoogle Scholar
  54. Okoye IC, Onwuliri COE (2007) Epidemiology and psycho-social aspects of onchocercal skin disease in northeastern Nigeria. Filaria J 6:15. doi: 10.1186/1475-2883-6-15 PubMedCentralPubMedCrossRefGoogle Scholar
  55. Opala J, Boillot F (1996) Leprosy among the Limba: illness and healing in the context of worldview. Soc Sci Med 42:3–19PubMedCrossRefGoogle Scholar
  56. Osuntokun BO, Adeuja AO, Nottidge VA, Bademosi O, Olumide A, Ige O, Yaria F, Bolis CL, Schoenberg BS (1987) Prevalence of the epilepsies in Nigerian Africans: a community-based study. Epilepsia 28:272–279PubMedCrossRefGoogle Scholar
  57. Plaisier AP, van Oortmarssen GJ, Remme J, Habbema JDF (1991) The reproductive lifespan of Onchocerca volvulus in West African savanna. Acta Trop 48:271–284PubMedCrossRefGoogle Scholar
  58. Quinn DM, Chaudoir SR (2009) Living with a concealable stigmatized identity: the impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. J Pers Soc Psychol 97:634–651PubMedCrossRefGoogle Scholar
  59. Rafael F, Houinato D, Nabukpo P, Dubreuil CM, Tran DS, Odermatt P, Clement JP, Weiss MG, Preux PM (2010) Sociocultural and psychological features of perceived stigma reported by people with epilepsy in Benin. Epilepsia 51:1061–1068PubMedCrossRefGoogle Scholar
  60. Raguram R, Weiss MG, Channabasavanna SM, Devins GM (1996) Stigma, depression, and somatization in South India. Am J Psychiatry 153:1043–1049PubMedGoogle Scholar
  61. Raguram R, Raghu TM, Vounatsou P, Weiss MG (2004) Schizophrenia and the cultural epidemiology of stigma in Bangalore, India. J Nerv Ment Dis 192(11):734–744PubMedCrossRefGoogle Scholar
  62. Rensen C, Bandyopadhyay S, Gopal PK, Van Brakel WH (2010) Measuring leprosy-related stigma – a pilot study to validate a toolkit of instruments. Disabil Rehabil 33:711–719, http://dx.doi.org/10.3109/09638288.2010.506942 PubMedCrossRefGoogle Scholar
  63. Sabin TD, Swift TR (1996) Leprosy. In: Shakir RA, Newman PK, Poser CM (eds) Tropical neurology. Saunders, PhiladelphiaGoogle Scholar
  64. Sabin TD, Swift TR (2008) Neurological complications of leprosy. In: Aminoff MJ (ed) Neurology and general medicine, 4th edn. Churchill Livingstone, Philadelphia, pp 815–825CrossRefGoogle Scholar
  65. Scambler G, Hopkins A (1990) Generating a model of epileptic stigma: the role of qualitative analysis. Soc Sci Med 30:1187–1194PubMedCrossRefGoogle Scholar
  66. Steele CM, Aronson J (1995) Stereotype threat and the intellectual test performance of African Americans. J Pers Soc Psychol 69:797–811PubMedCrossRefGoogle Scholar
  67. Stevelink SAM, Wu IC, Voorend CGN, Brakel WH (2012) The psychometric assessment of internalized stigma instruments: a systematic review. Stigma Res Action 2:100–118. doi: 10.5463/SRA.v1i1.11 Google Scholar
  68. Stienstra Y, van der Graaf WT, Asamoa K, van der Werf TS (2002) Beliefs and attitudes toward Buruli ulcer in Ghana. Am J Trop Med Hyg 67:207–213PubMedGoogle Scholar
  69. Takoungang I, Meli J, Fotso S, Angwafo F III, Kamajeu R, Ndumbe PM (2004) Some social determinants of urinary schistosomiasis in Northern Cameroon: implications for schistosomiasis control. Afr J Health Sci 11:111–120Google Scholar
  70. Tate AJ, Fischer H, Leigh AE, Kendrick KM (2006) Behavioural and neurophysiological evidence for face identity and face emotion processing in animals. Philos Trans R Soc Lond B Biol Sci 361:2155–2172PubMedCentralPubMedCrossRefGoogle Scholar
  71. Tchounkeu YF, Onyeneho NG, Wanji S, Kabali AT, Manianga C, Amazigo UV, Amuyunzu-Nyamongo M (2012) Changes in stigma and discrimination of onchocerciasis in Africa. Trans R Soc Trop Med Hyg 106:340–347PubMedCrossRefGoogle Scholar
  72. Van Brakel WH (2003) Measuring leprosy stigma-a preliminary review of leprosy literature. Int J Lepr 71:190–197Google Scholar
  73. Van Brakel WH (2006) Measuring health-related stigma: a literature review. Psychol Health Med 11:307–334. doi: 10.1080/13548500600595160 PubMedCrossRefGoogle Scholar
  74. van den Broek J, O’Donoghue J, Ishengoma A, Masao H, Mbega M (1998) Evaluation of a sustained 7 year health education campaign on leprosy in Rufiji District in Tanzania. Lepr Rev 69:57–74PubMedGoogle Scholar
  75. Waxler NE (1981) Learning to be a leper: a case study in the social construction of illness. In: Mishler EG, Amarasingham L, Hauser ST, Liem R, Osherson SD et al (eds) Social contexts of health, illness, and patient care. Cambridge University Press, Cambridge, pp 169–194Google Scholar
  76. Weiss MG (2008) Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis 2(5):e237. doi: 10.1371/journal.pntd.0000237 PubMedCentralPubMedCrossRefGoogle Scholar
  77. Weiss MG, Doongaji DR, Siddhartha S, Wypij D, Pathare S, Bhatawdekar M et al (1992) The explanatory model interview catalogue (EMIC).contribution to cross-cultural research methods from a study of leprosy and mental health. Br J Psychiatry 160:819–830PubMedCrossRefGoogle Scholar
  78. Weiss MG, Ramakrishna J (2006) Stigma interventions and research for international health. Lancet 367:536–538PubMedCrossRefGoogle Scholar
  79. Weiss MG, Ramakrishna J, Somma D (2006) Health-related stigma: rethinking concepts and interventions. Psychol Health Med 1:277–287CrossRefGoogle Scholar
  80. Wong ML (2004) Designing programmes to address stigma in leprosy: issues and challenges. Asia Pacific Disability Rehabil J 15:3–12Google Scholar
  81. World Health Organization (2004) Epilepsy in the WHO Africa region, bridging the gap: the global campaign against epilepsy “out of the shadows”. WHO, GenevaGoogle Scholar
  82. World Health Organization (2010) Working to overcome the global impact of neglected tropical diseases. ©WHO/NTD 2010, http://www.who.int/neglected_diseases/2010report/en/index.html
  83. Yanos PT, West ML, Gonzales L, Smith SM, Roe D, Lysaker PH (2012) Change in internalized stigma and social functioning among persons diagnosed with severe mental illness. Psychiatry Res 200:1032–1034PubMedCentralPubMedCrossRefGoogle Scholar
  84. Yizhar O, Fenno LE, Prigge M, Schneider F, Davidson TJ, O’Shea DJ, Sohal VS, Goshen I, Finkelstein J, Paz JT, Stehfest K, Fudim R, Ramakrishnan C, Huguenard JR, Hegemann P, Deisseroth K (2011) Neocortical excitation/inhibition balance in information processing and social dysfunction. Nature 477:171–178PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  • Earnest N. Tabah
    • 1
    • 2
  • Faustin Yepnjio
    • 3
    • 4
  • Alfred K. Njamnshi
    • 3
    • 4
    Email author
  1. 1.Swiss Tropical and Public Health InstituteThe University of BaselBaselSwitzerland
  2. 2.Department of NeurologyCentral Hospital Yaoundé, Ministry of Public HealthYaoundéCameroon
  3. 3.Faculty of Medicine and Biomedical Sciences, Ministry of Public HealthThe University of Yaoundé IYaoundéCameroon
  4. 4.Department of NeurologyCentral Hospital YaoundéYaoundéCameroon

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