Qualitative Exploration of Experiences and Consequences of Health-related Stigma among Indonesians with HIV, Leprosy, Schizophrenia and Diabetes

Sarju Sing Rai, Irwanto Irwanto, Ruth M.H. Peters, Elena V. Syurina, Annisa Ika Putri, Altana Mikhakhanova, Denise Naniche, Marjolein B.M. Zweekhorst

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.


Keywords


diabetes, Human Immunodeficiency Virus, leprosy, schizophrenia, stigma Indonesia

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References


 1. Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J 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. J Assoc Nurses 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 Res Int. 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. J Trop Med. 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. Healthc Manage 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. Psychol 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 J Lepr. 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. Glob 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. Am J Public Health. 2017;107(6):863-9.

 13. Sermrittirong S, Van Brakel WH. Stigma in leprosy: concepts, causes and determinants. Lepr Rev. 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 Serv Res. 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 Soc Care Community. 2017;25(5):1620-33.

 16. Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure, and strategies for change. Can J 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. Crit Care Nurs Clin North Am. 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. J Int AIDS Soc. 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 Med. 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 Med. 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 Med. 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-health-related stigma and discrimination. Lancet. 2016;387(10023):1123-32.

 23. IHME [homepage on the Internet]. GBD Profile: Indonesia. IHME, University of Washington 2010 [updated 2018 Feb 20; cited 2019 Aug 11].

 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. UNAIDS [homepage on the Internet]. Indonesia 2017 [updated 2018 Nov 15; cited 2019 Aug 12].

 26. WHO [homepage on the Internet]. Global leprosy update, 2017: Reducing the disease burden due to leprosy 2017 [updated 2018 Aug 24; cited 2019 Aug 11].

 27. IDF [homepage on the Internet]. Prevalence of Diabetes in Indonesia 2017 [updated 2018 May 12; cited 2019 Aug 11].

 28. Indonesian Ministry of Health [homepage on the Internet]. Riset Kesehatan Dasar 2013 [updated 2014 Feb 13; cited 2019 Jan 10].

 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. J Assoc Nurses 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. Enferm Clin; 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. Enferm Clin; 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. Enferm Clin ; 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. Enferm Clin. 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; Vol 25, No 4 (2014): Winter 2014. 2014.

 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; Vol 27, No 3 (2016): Autumn 2016. 2016.

 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 Negl Trop Dis. 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. HRW [homepage on the Internet]. Living in Hell: Abuses against People with Psychosocial Disabilities in Indonesia. USA: Human Rights Watch; March 2016 [updated 2016 Mar 16; cited 2019 Aug 17].

 40. Pitaloka D, Hsieh E. Health as Submission and Social Responsibilities: Embodied Experiences of Javanese Women With Type II Diabetes. Qual Health Res. 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. Glob J Health Sci. 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 Negl Trop Dis. 2008;2(5):e237.

 44. Hatzenbuehler ML. Structural stigma: Research evidence and implications for psychological science. Am Psychol. 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. Soc Sci Med. 2010;71(12):2150-61.

 46. Weber RP. Basic content analysis Sage; 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 health-related 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. J Nerv Ment Dis. 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. Pers Soc Psychol Bull. 2018;44(4):451-74.

 51. Suhardjo K, Irwanto. Tumbuh bagai Illalang: 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. Int J Ment Health Syst. 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. Int J Ment Health Nurs. 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. Epidemiol Psychiatr Sci. 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. Rev Soc Bras Med Trop. 2011;44(5):621-6.




DOI: http://dx.doi.org/10.21109/kesmas.v15i1.3306

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