Stigma towards leprosy: a systematic review
Keywords:Leprosy, Morbus Hansen, Hansen's Disease, Stigma, Discrimination, Social exclusion
AbstractBackground: One of the many problems that hinder leprosy prevention efforts is the stigma attached to leprosy, people affected by leprosy, and even their families. Stigma against leprosy can lead to discrimination, which will cause leprosy patients to be reluctant to seek treatment. To date, there are still no reviews that discuss the overall picture of the causes, manifestations, and the impact of stigma related to leprosy. This systematic review aims to know the leading causes, manifestations, and the impact of stigma related to leprosy.Methods: Search for inclusion studies was carried out through the PubMed and ScienceDirect databases, resulting in 13 studies included. Six studies use an individual perspective in their research, three studies with a community perspective, and four studies with a combined perspective of individuals and communities.Results: The number of included studies that will be reviewed in this study consists of eight cross-sectional studies, two RCT studies, one grounded theory study, one exploratory study, and one study with an unspecified design. A total of 2,636 participants were included in all the studies. The analysis results of all of the included studies indicate that for the factors that cause stigma, eight studies discussed the fear of contracting the disease, 10 studies discussed the external manifestations of the disease, three studies discussed burden on the family. Seven studies discussed cultural and community misconceptions. All studies discussed about enacted stigma for manifestations of stigma, 10 studies discussed about anticipated stigma, and 11 studies discussed internalized stigma. All studies discussed the social and psychological impacts of stigma related to leprosy, and only 3 studies discussed health impacts.Conclusion: The stigma towards leprosy is mainly caused by external manifestations of the people affected by leprosy, with the main manifestations of avoidance, social exclusion and concealment of the disease, and the main impact of social isolation from the community, reduced employment opportunities, and feeling of shame.
World Health Organization. Leprosy [Internet]. 2019 [cited 4 May 2020]. Available from: https://www.who.int/news-room/fact-sheets/detail/leprosy
Aisyah I, Agusni I. Penelitian Retrospektif: Gambaran Pasien Baru Kusta. Berkala Ilmu Kesehatan Kulit dan Kelamin. 2018;30(1):40-47.
Pusat Data dan Informasi Kementerian Kesehatan RI. Hapuskan Stigma dan Diskriminasi terhadap Kusta [Internet]. 2018 [cited 6 May 2020]. Available from: http://www.Kemenkes RI.go.id/resources/download/pusdatin/infodatin/infoDatin-kusta-2018.pdf
Centers for Disease Control and Prevention. Etiologic Agent | Hansen's Disease (Leprosy) | CDC [Internet]. 2017 [cited 5 May 2020]. Available from: https://www.cdc.gov/leprosy/health-care-workers/etiologic-agent.html
World Health Organization. Guidelines for the diagnosis, treatment, and prevention of leprosy. New Delhi: World Health Organization, Regional Office for South-East Asia; 2018.
World Health Organization. Global leprosy strategy, 2016-2020. 1st ed. New Delhi: World Health Organization, Regional Office for South-East Asia; 2016.
World Health Organization. Global leprosy update, 2017: reducing the disease burden due to leprosy. Weekly Epidemiological Record. 2018;93(35):445-456.
World Health Organization. Global leprosy update, 2018: moving towards a leprosy-free world. Weekly Epidemiological Record. 2019;94(35):389-412.
World Health Organization. Global leprosy update, 2015: time for action, accountability and inclusion. Weekly Epidemiological Record. 2016;91(35):405-420.
Tabah E, Nsagha D, Bissek A, Njamnshi T, Njih I, Pluschke G et al. Community knowledge, perceptions and attitudes regarding leprosy in rural Cameroon: The case of Ekondotiti and Mbonge health districts in the South-west Region. PLOS Neglected Tropical Diseases. 2018;12(2):e0006233.
Barrett R. Health-Related Stigma and Discrimination. International Encyclopedia of Public Health. 2008;269-272.
Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med. 2006;11(3):277-87.
Weiss MG. Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis. 2008;2(5):e237.
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.
Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160-77.
Sermrittirong S, Van Brakel WH. Stigma in leprosy: concepts, causes and determinants. Lepr Rev. 2014;85(1):36-47.
Hofstraat K, van Brakel WH. Social stigma towards neglected tropical diseases: a systematic review. Int Health. 2016;8 Suppl 1:i53-70.
Singh R, Singh B, Mahato S. Community knowledge, attitude, and perceived stigma of leprosy amongst community members living in Dhanusha and Parsa districts of Southern Central Nepal. PLOS Neglected Tropical Diseases. 2019;13(1):e0007075.
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.
Adhikari B, Kaehler N, Raut S, Gyanwali K, Chapman RS. Stigma in Leprosy: A Qualitative Study of Leprosy Affected Patients at Green Pastures Hospital, Western Region of Nepal. J Health Res [Internet]. 1 [cited 2020July.7];27(5):295-00. Available from: https://he01.tci-thaijo.org/index.php/jhealthres/article/view/88694
Dako-Gyeke M. Courtesy stigma: A concealed consternation among caregivers of people affected by leprosy. Soc Sci Med. 2018;196:190-6.
Jung SH, Han HW, Koh H, Yu SY, Nawa N, Morita A, et al. Patients help other patients: Qualitative study on a longstanding community cooperative to tackle leprosy in India. PLoS Negl Trop Dis. 2020;14(1):e0008016.
Marahatta SB, Amatya R, Adhikari S, Giri D, Lama S, Kaehler N, et al. Perceived stigma of leprosy among community members and health care providers in Lalitpur district of Nepal: A qualitative study. PLoS One. 2018;13(12):e0209676.
van 't Noordende AT, Korfage IJ, Lisam S, Arif MA, Kumar A, van Brakel WH. The role of perceptions and knowledge of leprosy in the elimination of leprosy: A baseline study in Fatehpur district, northern India. PLoS Negl Trop Dis. 2019;13(4):e0007302.
Peters RM, Dadun, Zweekhorst MB, Bunders JF, Irwanto, van Brakel WH. A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia. PLoS Negl Trop Dis. 2015;9(10):e0004003.
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.
Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P. Factors affecting perceived stigma in leprosy affected persons in western Nepal. PLoS Negl Trop Dis. 2014;8(6):e2940.
Dako-Gyeke M, Asampong E, Oduro R. Stigmatisation and discrimination: Experiences of people affected by leprosy in Southern Ghana. Lepr Rev. 2017;88(1):58-74.
Goncalves M, Prado M, Silva SSD, Santos KDS, Araujo PN, Fortuna CM. Work and leprosy: women in their pains, struggles and toils. Rev Bras Enferm. 2018;71(suppl 1):660-7.
Garbin CA, Garbin AJ, Carloni ME, Rovida TA, Martins RJ. The stigma and prejudice of leprosy: influence on the human condition. Rev Soc Bras Med Trop. 2015;48(2):194-201.
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.
van 't Noordende AT, Aycheh MW, Schippers A. The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia. PLoS Negl Trop Dis. 2020;14(3):e0008173.
de Stigter DH, de Geus L, Heynders ML. Leprosy: between acceptance and segregation. Community behaviour towards persons affected by leprosy in eastern Nepal. Lepr Rev. 2000;71(4):492-8.
Seshadri D, Khaitan BK, Khanna N, Sagar R. The tangled web: a study of knowledge and attitude towards leprosy from a tertiary care hospital in India. Indian J Lepr. 2014;86(2):27-41.
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.
Brouwers C, Van Brakel W, Cornielje H, Pokhrel P, Dhakal K, Banstola N. Quality of Life, Perceived Stigma, Activity and Participation of People with Leprosy-Related Disabilities in South-East Nepal. Disability, CBR & Inclusive Development. 2011;22(1):16.
Crocker J, Cornwell B, Major B. The stigma of overweight: affective consequences of attributional ambiguity. J Pers Soc Psychol. 1993;64(1):60-70.
Adhikari B, Shrestha K, Kaehler N, Raut S, Chapman RS. Community attitudes towards leprosy affected persons in Pokhara municipality of western Nepal. J Nepal Health Res Counc. 2013;11(25):264-8.
Kaur H, Gandhi A. People's perception of leprosy--a study in Delhi. Indian J Lepr. 2003;75(1):37-46.
John AS, Rao PS. Awareness and attitudes towards leprosy in urban slums of Kolkata, India. Indian J Lepr. 2009;81(3):135-40.
Grewal I, Negi Y, Kishore J, Adhish SV. Knowledge and attitude about leprosy in Delhi in post elimination phase. Indian J Lepr. 2013;85(3):123-7.
Mankar MJ, Joshi SM, Velankar DH, Mhatre RK, Nalgundwar AN. A Comparative Study of the Quality of Life, Knowledge, Attitude and Belief About Leprosy Disease Among Leprosy Patients and Community Members in Shantivan Leprosy Rehabilitation centre, Nere, Maharashtra, India. J Glob Infect Dis. 2011;3(4):378-82.
Ibikunle P, Nwokeji S. Assessment of stigma among people living with Hansens disease in south-east Nigeria. Leprosy Review. 2017;88(1):43-57
Ebenso B, Newell J, Emmel N, Adeyemi G, Ola B. Changing stigmatisation of leprosy: an exploratory, qualitative life course study in Western Nigeria. BMJ Global Health. 2019;4(2):e001250.
Sottie CA, Darkey J. Living with stigma: Voices from the Cured Lepers' village in Ghana. Soc Work Health Care. 2019;58(2):151-65.
De Groot R, Van Brakel WH, De Vries HJ. Social implications of leprosy in the Netherlands--stigma among ex-leprosy patients in a non-endemic setting. Lepr Rev. 2011;82(2):168-77.
Barrett R. Self-mortification and the stigma of leprosy in northern India. Med Anthropol Q. 2005;19(2):216-30.
Nishida M, Nakamura Y, Aosaki N. Prevalence and characteristics of depression in a Japanese leprosarium from the viewpoints of social stigmas and ageing. A preliminary report. Lepr Rev. 2006;77(3):203-9.
van 't Noordende A, van Brakel W, Banstola N, Dhakal K. The Impact of Leprosy on Marital Relationships and Sexual Health among Married Women in Eastern Nepal. Journal of Tropical Medicine. 2016;2016:1-9.
Briden A, Maguire E. An assessment of knowledge and attitudes towards amongst leprosy/Hansen's disease workers in Guyana. Lepr Rev. 2003;74(2):154-62.
Rafferty J. Curing the stigma of leprosy. Lepr Rev. 2005;76(2):119-26.
van Brakel WH. Measuring health-related stigma--a literature review. Psychol Health Med. 2006;11(3):307-34.
Litt E, Baker MC, Molyneux D. Neglected tropical diseases and mental health: a perspective on comorbidity. Trends Parasitol. 2012;28(5):195-201.
Dako-Gyeke M, Dako-Gyeke P, Asampong E. Experiences of stigmatization and discrimination in accessing health services: voices of persons living with HIV in Ghana. Soc Work Health Care. 2015;54(3):269-85.
Scott J. The psychosocial needs of leprosy patients. Leprosy Review. 2000;71(4).
John AS, Rao PS, Kundu R, Raju MS. Leprosy among adolescents in Kolkata, India. Indian J Lepr. 2005;77(3):247-53.
Muthuvel T, Govindarajulu S, Isaakidis P, Shewade HD, Rokade V, Singh R, et al. "I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study. PLoS Negl Trop Dis. 2017;11(1):e0005192
Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(7): e1000097. doi:10.1371/journal.pmed1000097