Abstract

Health-related stigma causes a negative impact on the lives of affected people and undermines the effectiveness of public health programs. This study aimedto explore experiences and consequences of stigma among people affected by four health conditions relevant in Indonesia– HIV (Human ImmunodeficiencyVirus), leprosy, schizophrenia and diabetes. In this qualitative study 40 people affected by the four health conditions in Jakarta and West Java, Indonesia–,were interviewed between March and June 2018. Data were analyzed thematically by following an integrative inductive-deductive approach. The experiencesand consequences of people with stigma were similar, but such experience were more severe among people affected by HIV, leprosy, and schizophrenia.Those with diabetes either experienced no or less severe stigma. The participants revealed that they experienced enacted stigma in healthcare, employment,and social interactions in the structural and interpersonal levels. They also experience the stigma in the form of internalized and anticipated stigma at an individual level. Incidences of human rights violations were evident. Social, behavioral, psychological, and medical consequences were also reported.

References

1. Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. American Journal of Public Health. 2013; 103(5): 813-21.

2. Holzemer WL, Human S, Arudo J, Rosa ME, Hamilton MJ, Corless I, et al. Exploring HIV stigma and quality of life for persons living with HIV infection. Journal of the Association of Nurses in AIDS Care. 2009; 20(3): 161-8.

3. Lusli M, Zweekhorst MB, Miranda-Galarza B, Peters RM, Cummings S, Seda FS, et al. Dealing with stigma: experiences of persons affected by disabilities and leprosy. BioMed Research International. 2015; 2015: 261329.

4. Peters RM, Dadun, Lusli M, Miranda-Galarza B, van Brakel WH, Zweekhorst MB, et al. The meaning of leprosy and everyday experiences: an exploration in Cirebon, Indonesia. Journal of Tropical Medicine. 2013; 2013: 507034.

5. Knaak S, Mantler E, Szeto A. Mental illness-related stigma in healthcare: barriers to access and care and evidence-based solutions. Healthcare Management Forum. 2017; 30(2): 111-6.

6. Browne JL, Ventura A, Mosely K, Speight J. 'I call it the blame and shame disease': a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open. 2013; 3(11): e003384.

7. Schabert J, Browne JL, Mosely K, Speight J. Social stigma in diabetes: a framework to understand a growing problem for an increasing epidemic. Patient. 2013; 6(1): 1-10.

8. Cataldo JK, Brodsky JL. Lung cancer stigma, anxiety, depression and symptom severity. Oncology. 2013; 85(1): 33-40.

9. Else-Quest NM, LoConte NK, Schiller JH, Hyde JS. Perceived stigma, self-blame, and adjustment among lung, breast and prostate cancer patients. Psychology & Health. 2009; 24(8): 949-64.

10. Rao PS. Study on differences and similarities in the concept and origin of leprosy stigma in relation to other health-related stigma. Indian Journal of Leprosy. 2010; 82(3): 117-21.

11. van Brakel WH, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, et al. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Global Health Action. 2012; 5.

12. Turan B, Hatcher AM, Weiser SD, Johnson MO, Rice WS, Turan JM. Framing mechanisms linking HIV-related stigma, adherence to treatment, and health outcomes. American Journal of Public Health. 2017; 107(6): 863-9.

13. Sermrittirong S, Van Brakel WH. Stigma in leprosy: concepts, causes and determinants. Leprosy Review. 2014; 85(1): 36-47.

14. Brohan E, Slade M, Clement S, Thornicroft G. Experiences of mental illness stigma, prejudice and discrimination: a review of measures. BMC Health Services Research. 2010; 10: 80.

15. Gredig D, Bartelsen-Raemy A. Diabetes-related stigma affects the quality of life of people living with diabetes mellitus in Switzerland: implications for healthcare providers. Health & Social Care in the Community. 2017; 25(5): 1620-33.

16. Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure, and strategies for change. Canadian Journal of Psychiatry. 2012; 57(8): 464-9.

17. Farley-Toombs C. The stigma of a psychiatric diagnosis: prevalence, implications and nursing interventions in clinical care settings. Critical Care Nursing Clinics of North America. 2012; 24(1): 149-56.

18. Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, et al. Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. Journal of the International AIDS Society. 2013; 16 (3 Suppl 2): 18640.

19. Kane JC, Elafros MA, Murray SM, Mitchell EMH, Augustinavicius JL, Causevic S, et al. A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Medicine. 2019; 17(1): 17.

20. Stangl AL, Earnshaw VA, Logie CH, van Brakel W, L CS, Barre I, et al. The health stigma and discrimination framework: a global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine. 2019; 17(1): 31.

21. Kemp CG, Jarrett BA, Kwon CS, Song L, Jette N, Sapag JC, et al. Implementation science and stigma reduction interventions in low- and middle-income countries: a systematic review. BMC Medicine. 2019; 17(1): 6.

22. Thornicroft G, Mehta N, Clement S, Evans-Lacko S, Doherty M, Rose D, et al. Evidence for effective interventions to reduce mental-healthrelated stigma and discrimination. Lancet. 2016; 387(10023): 1123- 32.

23. Institute for Health Metrics. GBD profile: Indonesia. IHME, University of Washington; 2010 [updated 2018 Feb 20].

24. Vos T, Barber RM, Bell B, Bertozzi-Villa A, Biryukov S, Bolliger I, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 301 acute and chronic diseases and injuries in 188 countries, 1990-2013: a systematic analysis for the Global Burden of Disease Study 2013. The Lancet. 2015; 386 (9995): 743-800.

25. The Joint United Nations Programme on HIV/AIDS. Indonesia 2017; 2018.

26. World Health Organization. Global leprosy update, 2017: Reducing the disease burden due to leprosy 2017 [updated 2018 Aug 24].

27. International Diabetes Federation. Prevalence of Diabetes in Indonesia 2017 [updated 2018 May 12]; 2017.

28. Indonesian Ministry of Health. Riset Kesehatan Dasar 2013 [updated 2014 Feb 13]; 2014.

29. Culbert GJ, Earnshaw VA, Wulanyani NM, Wegman MP, Waluyo A, Altice FL. Correlates and experiences of HIV stigma in prisoners living with HIV in Indonesia: a mixed-method analysis. Journal of the Association of Nurses in AIDS Care. 2015; 26(6): 743-57.

30. Nurfalah F, Yona S, Waluyo A. The relationship between HIV stigma and adherence to antiretroviral (ARV) drug therapy among women with HIV in Lampung, Indonesia. Enfermería Clínica; 2019.

31. Irmayati N, Yona S, Waluyo A. HIV-related stigma, knowledge about HIV, HIV risk behavior and HIV testing motivation among women in Lampung, Indonesia. Enfermería Clínica; 2019.

32. Sianturi EI, Perwitasari DA, Islam MA, Taxis K. The association between ethnicity, stigma, beliefs about medicines and adherence in people living with HIV in a rural area in Indonesia. BMC Public Health. 2019; 19(1): 55.

33. Victoryna F, Yona S, Waluyo A. The relationship between stigma, family acceptance, peer support and stress level among HIV-positive men who have sex with men (MSM) in Medan, North Sumatera, Indonesia. Enfermería Clínica; 2019.

34. Desyani NLJ, Waluyo A, Yona S. The relationship between stigma, religiosity, and the quality of life of HIV-positive MSM in Medan, Indonesia. Enfermería Clínica. 2019.

35. Peters RMH, Hofker ME, van Brakel WH, Marjolein ZBM, Seda FSSE, Irwanto I, et al. Narratives around concealment and agency for stigma-reduction: a study of women affected by leprosy in Cirebon District, Indonesia. Disability, CBR & Inclusive Development. 2014; 25(4).

36. Dadun D, Peters R, Lusli M, Miranda-Galarza B, van Brakel W, Zweekhorst M, et al. Exploring the Complexities of leprosy-related stigma and the potential of a socio-economic Intervention in a public health context in Indonesia. Disability, CBR & Inclusive Development. 2016; 27(3).

37. Lusli M, Peters R, van Brakel W, Zweekhorst M, Iancu S, Bunders J, et al. The impact of a rights-based counselling intervention to reduce stigma in people affected by leprosy in Indonesia. PLoS Neglected Tropical Diseases. 2016; 10(12): e0005088.

38. Subu MA. Persistent taboo understanding mental illness and stigma among Indonesian adults through grounded theory. Université d'Ottawa/University of Ottawa; 2015.

39. Human Rights Watch. Living in Hell: Abuses against People with Psychosocial Disabilities in Indonesia. USA: Human Rights Watch; March 2016 [updated 2016 Mar 16].

40. Pitaloka D, Hsieh E. Health as submission and social responsibilities: embodied experiences of Javanese women with Type II Diabetes. Qualitative Health Research. 2015; 25(8): 1155-65.

41. Pujilestari CU, Ng N, Hakimi M, Eriksson M. "It is not possible for me to have Diabetes"-community perceptions on Diabetes and its risk factors in Rural Purworejo District, Central Java, Indonesia. Global Journal of Health Science. 2014; 6(5): 204-18.

42. Scambler G. Re-framing stigma: felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory & Health. 2004; 2(1): 29-46.

43. Weiss MG. Stigma and the social burden of neglected tropical diseases. PLoS Neglected Tropical Diseases. 2008; 2(5): e237.

44. Hatzenbuehler ML. Structural stigma: research evidence and implications for psychological science. American Psychologist. 2016; 71(8): 742-51.

45. Livingston JD, Boyd JE. Correlates and consequences of internalized stigma for people living with mental illness: a systematic review and meta-analysis. Social Science & Medicine. 2010; 71(12): 2150-61.

46. Weber RP. Basic content analysis. 2 nd ed. London: Sage Publications Ltd; 1990.

47. Fereday J, Muir-Cochrane E. Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods. 2006; 5(1): 80-92.

48. van Brakel WH, Cataldo J, Grover S, Kohrt BA, Nyblade L, Stockton M, et al. Out of the silos: identifying cross-cutting features of healthrelated stigma to advance measurement and intervention. BMC Medicine. 2019; 17(1): 13.

49. Ebneter DS, Latner JD. Stigmatizing attitudes differ across mental health disorders: a comparison of stigma across eating disorders, obesity, and major depressive disorder. The Journal of Nervous and Mental Disease. 2013; 201(4): 281-5.

50. Pachankis JE, Hatzenbuehler ML, Wang K, Burton CL, Crawford FW, Phelan JC, et al. The burden of stigma on health and well-being: a taxonomy of concealment, course, disruptiveness, aesthetics, origin, and peril across 93 stigmas. Personality and Social Psychology Bulletin. 2018; 44(4): 451-74.

51. Suhardjo K, Irwanto. Tumbuh bagai ilalang: perjalanan transformative dalam diskriminasi dan kekesaran – studi deskriptif proses belajar transformative waria dan gay pekerja seks di Jakarta. Jakarta: Universitas Katolik Indonesia Atma Jaya; 2018.

52. Triawan AdR. Jadi, kau tak merasa bersalah!? Studi kasus diskriminasi dan kekerasan terhadap LGBTI. Jakarta: Arus Pelangi; 2018.

53. Uddin AT. Religious freedom implications of sharia implementation in Aceh, Indonesia. University of Saint Thomas Law Journal. 2010; 603.

54. Laila NH, Mahkota R, Krianto T, Shivalli S. Perceptions about pasung (physical restraint and confinement) of schizophrenia patients: a qualitative study among family members and other key stakeholders in Bogor Regency, West Java Province, Indonesia 2017. International Journal of Mental Health Systems. 2018; 12: 35.

55. Irmansyah I, Prasetyo YA, Minas H. Human rights of persons with mental illness in Indonesia: more than legislation is needed. International Journal of Mental Health Systems. 2009; 3(1): 14.

56. Nurjannah I, FitzGerald M, Foster K. Patients' experiences of absconding from a psychiatric setting in Indonesia. International Journal of Mental Health Nursing. 2009; 18(5): 326-35.

57. Rose D, Willis R, Brohan E, Sartorius N, Villares C, Wahlbeck K, et al. Reported stigma and discrimination by people with a diagnosis of schizophrenia. Epidemiology and Psychiatric Sciences. 2011; 20(2):193-204.

58. Herek GM, Saha S, Burack J. Stigma and psychological distress in people with HIV/AIDS. Basic and Applied Social Psychology. 2013; 35(1): 41-54.

59. Lustosa AA, Nogueira LT, Pedrosa JI, Teles JB, Campelo V. The impact of leprosy on health-related quality of life. Revista da Sociedade Brasileira de Medicina Tropical. 2011; 44(5): 621-6.

Download

Share

COinS