Guidelines to reduce stigma

The Guidelines to reduce stigma is a series of four Guides to reduce stigma. The Guides are for all managers, health workers and social workers and service staff who have to deal with stigma in leprosy and other health conditions.
The first Guide provides basic information on stigma, its causes, manifestations, and effects. The second Guide describes when and how to access stigma using qualitative and quantitative methods and instruments. It also explains how to use the instruments.
The third Guide provides recommendations on how to develop an approach for reducing stigma. Through the use of a roadmap, several steps are discussed for reducing stigma related to a particular health conditions.The fourth Guide explains the use of counselling at a basic level in dealing with stigma. It provides an explanation on different techniques and approaches for counselling persons affected by stigma.

Guide 1 What is health-related stigma?
Guide 2 How to assess health-related stigma
Guide 3 A roadmap to stigma redcution: an empowerment intervention
Guide 4 Counselling to reduce stigma

Annotated bibliography

Leprosy (Hansen’s disease) and stigma: an annotated bibliography
Compiled by Lesley Jo Weaver
IDEA & The Innovia Foundation, 2009
Download full text

Reference list Leprosy related Stigma: 1998 - 2009

Nations MK, [et al.] Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceara State, Brazil. Cad Saude Publica 2009; 25(6):1215-1224.
Download full text

Raju MS, Rao PS, Mutatkar RK. A study on community-based approaches to reduce leprosy stigma in India. Indian J Lepr 2008; 80(3):267-73. 

Rao PS, Raju MS, Barkataki A, Nanda NK, Kumar S. Extent and correlates of leprosy stigma in rural India. Indian J Lepr 2008;80(2):167-74. 

Bajaj DR, Matlani BL, Soomro FR, Iqbal MP. Knowledge, attitude and practices regarding leprosy among general practitioners at Hyderabad. J Coll Physicians Surg Pak 2009;19(4):215-8.

Borenstein MS, Padilha MI, Costa E, Gregório VR, Koerich AM, Ribas DL. [Leprosy: stigma and prejudice lived by institucionalized patients in Santa Catarina State, Brazil (1940-1960)]. Rev Bras Enferm 2008;61 Spec No:708-12. Portuguese.
Download full text

Bang PD, Suzuki K, Ishii N, Khang TH. Leprosy situation in Vietnam--reduced burden of stigma. Nihon Hansenbyo Gakkai Zasshi 2008; 77(1):29-36.
Available from Infolep

Cornielje H, Piefer A, Khasnabis C, Thomas M, Velema JP. Inclusion of persons affected by leprosy in CBR. Lepr Rev 2008; 79(1):30-35.
Download full text

Gill AL, Gill GV, Beeching NJ. Familial transmission of leprosy in post-war Britain--discrimination and dissent. QJM 2008; 101(5):407-413.
Available from Infolep

Hotez PJ. Stigma: The Stealth Weapon of the NTD. PLoS Negl Trop Dis 2008; 2(4):e230.
Download full text

Jacob JT, Franco-Paredes C. The stigmatization of leprosy in India and its impact on future approaches to elimination and control. PLoS Negl Trop Dis 2008; 2(1):e113.
Download full text

Khasnabis C, Motsch KH. The participatory development of international guidelines for CBR. Lepr Rev 2008; 79(1):17-29.
Download full text

Seng LK. 'Our lives are bad but our luck is good': A Social History of Leprosy in Singapore. Soc Hist Med 2008; 21(2):291-309.
Available from Infolep

White C. Iatrogenic stigma in outpatient treatment for Hansen's disease (leprosy) in Brazil. Health Educ Res 2008; 23(1):25-39.
Available from Infolep

Ebenso B, Fashona A, Ayuba M, Idah M, Adeyemi G, S-Fada S. Impact of socio-economic rehabilitation on leprosy stigma in Northern Nigeria: findings of a retrospective study. Asia Pacific Disability Rehabilitation Journal 2007; 18(2):98-119.
Download full text

Mori S, Ishii N. [Leprosy and medicine II--progress and its establishment of an absolute isolation policy]. Nihon Hansenbyo Gakkai Zasshi 2007; 76(1):29-65.
Article in Japanese. Not available.

Nisar N, Khan IA. Knowledge attitude and practices about leprosy in a fishing community in Karachi Pakistan. Pak J Med Sci 2007; 23(5):936-940.
Download full text

Tsutsumi A, Izutsu T, Md IA, Maksuda AN, Kato H, Wakai S. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med 2007; 64(12):2443-2453.
Available from Infolep

Barkataki P, Kumar S, Rao PS. Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India. Lepr Rev 2006; 77(1):62-68.
Download full text

Brown W. Can social marketing approaches change community attitudes towards leprosy? Lepr Rev 2006; 77(2):89-98.
Download full text

Byamungo D. Discrimination against leprosy patients and their families: the situation (early 2005) in West Darfur, Sudan. Lepr Rev 2006; 77(1):82-83.
Download full text

Calcraft JH. The effects of the stigma of leprosy on the income generation of leprosy affected people in the Terai area of South East Nepal. Asia Pacific Disability Rehabilitation Journal 2006; 17(2):73-89.
Download full text

Cross H. Interventions to address the stigma associated with leprosy: A perspective on the issues. Psychol Health Med 2006; 11(3):367-373.
Available from Infolep

Heijnders M, Van Der MS. The fight against stigma: An overview of stigma-reduction strategies and interventions. Psychol Health Med 2006; 11(3):353-363.
Available from Infolep

Mahato ME. Disability prevention and medical rehabilitation (DPMR)--prevention of disability and timely referral in leprosy. J Indian Med Assoc 2006; 104(12):682-685.
Available from Infolep

Mori S, Ishii N. [Leprosy and medicine I--proposal of an isolation policy and its background]. Nihon Hansenbyo Gakkai Zasshi 2006; 75(1):3-22.
Article in Japanese. Not available.

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):203-209.
Download full text

Robins R, Martin D, Raj KD, Raju MS. Awareness about the persons with disability act among leprosy patients and other disabled persons. Indian J Lepr 2006; 78(3):217-229.

Seddon D, Seeley J. Leprosy and stigma : guest editorial. Asia Pacific Disability Rehabilitation Journal 2006; 17(2):3-6.
Download full text

Shieh C, Wang HH, Lin CF. From contagious to chronic: a life course experience with leprosy in Taiwanese women. Lepr Rev 2006; 77(2):99-113.
Download full text

van Brakel WH, Anderson AM, Mutatkar RK, Bakirtzief Z, Nicholls PG, Raju MS et al. The Participation Scale: Measuring a key concept in public health. Disabil Rehabil 2006; 28(4):193-203.
Available from Infolep

van Brakel WH. Measuring health-related stigma-A literature review. Psychol Health Med 2006; 11(3):307-334.
Available from Infolep

Wokaunn M, Juric I, Vrbica Z. Between stigma and dawn of medicine: the last leprosarium in Croatia. Croat Med J 2006; 47(5):759-766.
Download full text

Awofeso N. Concept and impact of stigma on discrimination against leprosy sufferers--minimizing the harm. Lepr Rev 2005; 76(1):101-102.
Download full text

Barrett R. Self-mortification and the stigma of leprosy in northern India. Med Anthropol Q 2005; 19(2):216-230.

Brandsma JW, Schwarz RJ, Anderson AM, Herm FB. Transformation of a leprosy hospital in Nepal into a rehabilitation centre: the Green Pastures Hospital experience. Lepr Rev 2005; 76(4):267-276.
Download full text

Chaturvedi SK, Singh G, Gupta N. Stigma experience in skin disorders: an Indian perspective. Dermatol Clin 2005; 23(4):635-642.
Available from Infolep

Chen S, Chu T, Wang Q. Qualitative assessment of social, economic and medical needs for ex-leprosy patients living in leprosy villages in Shandong Province, The People's Republic of China. Lepr Rev 2005; 76(4):335-347.
Download full text

Cross H, Choudhary R. STEP: an intervention to address the issue of stigma related to leprosy in Southern Nepal. Lepr Rev 2005; 76(4):316-324.
Download full text

Cross H, Choudhury R. Self care: a catalyst for community development. Asia Pacific Disability Rehabilitation Journal 2005; 16(2):100-114.
Download full text

Gill AL, Bell DR, Gill GV, Wyatt GB, Beeching NJ. Leprosy in Britain: 50 years experience in Liverpool. QJM 2005; 98(7):505-511.

Kar BR, Job CK. Visible deformity in childhood leprosy--a 10-year study. Int J Lepr Other Mycobact Dis 2005; 73(4):243-248.

Lockwood DN, Suneetha S. Leprosy: too complex a disease for a simple elimination paradigm. Bull World Health Organ 2005; 83(3):230-235.

Mou HJ, Ke W, Bao X, Wang Y. [Study on the living condition of people affected by leprosy in Guizhou province]. Zhonghua Liu Xing Bing Xue Za Zhi 2005; 26(5):348-350.

Rafferty J. Curing the stigma of leprosy. Lepr Rev 2005; 76(2):119-126.
Download full text

Sato H, Frantz JE. Termination of the leprosy isolation policy in the US and Japan : Science, policy changes, and the garbage can model. BMC Int Health Hum Rights 2005; 5(1):3.

Aoki Y. [Hansen's disease-associated disabilities in sanatoria residents. A study of the actual situation in three sanatoria located in the Setouchi area]. Nippon Koshu Eisei Zasshi 2004; 51(9):741-752.

Grange JM, Lethaby JI. Leprosy of the past and today. Semin Respir Crit Care Med 2004; 25(3):271-281.

Heijnders ML. The dynamics of stigma in leprosy. Int J Lepr Other Mycobact Dis 2004; 72(4):437-447.

Ishii N, Mori S, Nakajima H. [Summary of questionnaires on leprosy in Yokohama City area and university hospitals]. Nihon Hansenbyo Gakkai Zasshi 2004; 73(3):207-215.

Kumar R, Singhasivanon P, Sherchand JB, Mahaisavariya P, Kaewkungwal J, Peerapakorn S et al. Gender difference in socio-epidemiological factors for leprosy in the most hyper-endemic district of Nepal. Nepal Med Coll J 2004; 6(2):98-105.

Leekassa R, Bizuneh E, Alem A. Prevalence of mental distress in the outpatient clinic of a specialized leprosy hospital. Addis Ababa, Ethiopia, 2002. Lepr Rev 2004; 75(4):367-375.
Download full text

McCurry J. Japanese leprosy patients continue to fight social stigma. 2 years after landmark court ruling, incarcerated patients are still fearful of returning home. Lancet 2004; 363(9408):544.

Sasakawa Y. Elimination of leprosy: a need for urgency. Indian J Lepr 2004; 76(2):111-117.

Senturk V, Sagduyu A. [Psychiatric disorders and disability among leprosy patients; a review]. Turk Psikiyatri Derg 2004; 15(3):236-243.

Thakor HG, Murthy PS. Counselling of leprosy affected persons and the community. J Indian Med Assoc 2004; 102(12):684-687.

Tsutsumi A, Izutsu T, Akramul I, Amed JU, Nakahara S, Takagi F et al. Depressive status of leprosy patients in Bangladesh: association with self-perception of stigma. Lepr Rev 2004; 75(1):57-66.
Download full text

Wong ML. Designing programmes to address stigma in leprosy: issues and challenges. Asia Pacific Disability Rehabilitation Journal 2004; 15(2):3-12.

Alves MT. [A panorama of Hansen's disease: present status and perspectives]. Hist Cienc Saude Manguinhos 2003; 10(Suppl 1):291-307.

Briden A, Maguire E. An assessment of knowledge and attitudes towards amongst leprosy/Hansen's disease workers in Guyana. Lepr Rev 2003; 74(2):154-162.
Download full text

Cueto M, de la Puente JC. Vida de leprosa: the testimony of a woman living with Hansen's disease in the Peruvian Amazon, 1947. Hist Cienc Saude Manguinhos 2003; 10(Suppl 1):337-360.

Ganapati R, Pai VV, Kingsley S. Disability prevention and management in leprosy: a field experience. Indian J Dermatol Venereol Leprol 2003; 69(6):369-374.

 In combating social exclusion how are interventions on the 'excluded' related to interventions on the 'excluding society'? : a comparative analysis of leprosy rehabilitation and prevention in Bangladesh. 03 Apr 7; 2003.

Levison JH. Beyond quarantine: a history of leprosy in Puerto Rico, 1898-1930s. Hist Cienc Saude Manguinhos 2003; 10(Suppl 1):225-245.

Lu HM. [A study on the measures against Hansen's disease during the Colonial Korea]. Nippon Ishigaku Zasshi 2003; 49(2):223-261.

Miles M. Knowledge and management of disabling conditions in South Asian histories: implications for leprosy futures. Indian J Lepr 2003; 75(2):153-167.

Nicholls PG, Wiens C, Smith WC. Delay in presentation in the context of local knowledge and attitude towards leprosy--the results of qualitative fieldwork in Paraguay. Int J Lepr Other Mycobact Dis 2003; 71(3):198-209.

Obara A. [What was found in deformities of leprosy patients from the view-point of orthopedics?]. Nihon Hansenbyo Gakkai Zasshi 2003; 72(3):245-249.

Pfaltzgraff RE. Begging as a profession and dehabilitation among leprosy patients. Lepr Rev 2003; 74(3):280-281.
Download full text

Ustianowski AP, Lockwood DN. Leprosy: current diagnostic and treatment approaches. Curr Opin Infect Dis 2003; 16(5):421-427.

van Brakel WH. Measuring leprosy stigma--a preliminary review of the leprosy literature. Int J Lepr Other Mycobact Dis 2003; 71(3):190-197.

Withington SG, Joha S, Baird D, Brink M, Brink J. Assessing socio-economic factors in relation to stigmatization, impairment status, and selection for socio-economic rehabilitation: a 1-year cohort of new leprosy cases in north Bangladesh. Lepr Rev 2003; 74(2):120-132.
Download full text

Zhang L. Leprosy in China. Nihon Hansenbyo Gakkai Zasshi 2003; 72(3):209-215.

Aoki Y. Leprosy prevention law and healthcare professionals in Japan. Int Hist Nurs J 2002; 7(2):68-74.

Arole S, Premkumar R, Arole R, Maury M, Saunderson P. Social stigma: a comparative qualitative study of integrated and vertical care approaches to leprosy. Lepr Rev 2002; 73(2):186-196.
Download full text

el Hassan LA, Khalil EA, el Hassan AM. Socio-cultural aspects of leprosy among the Masalit and Hawsa tribes in the Sudan. Lepr Rev 2002; 73(1):20-28.
Download full text

Kaur H, Van Brakel W. Dehabilitation of leprosy-affected people--a study on leprosy-affected beggars. Lepr Rev 2002; 73(4):346-355.
Download full text

Peters ES, Eshiet AL. Male-female (sex) differences in leprosy patients in south eastern Nigeria: females present late for diagnosis and treatment and have higher rates of deformity. Lepr Rev 2002; 73(3):262-267.
Download full text

Bharath S, Shamasundar C, Raghuram R, Subbakrishna DK. Correlates of psychiatric morbidity in patients with leprosy. Indian J Lepr 2001; 73(3):217-228.

Maury M, Nicholls P. Enacted and percieved stigma : literature review.  2001.
Ref Type: Unpublished Work

Watts J. Japanese leprosy patients receive official apology. Lancet 2001; 357(9270):1774.

Watts J. Japan's government compensates leprosy patients for isolation policy. Lancet 2001; 357(9268):1599.

Floyd-Richard M, Gurung S. Stigma reduction through group counselling of persons affected by leprosy--a pilot study. Lepr Rev 2000; 71(4):499-504.
Download full text

Frist TF. Stigma and societal response to leprosy: experience of the last half century. Indian J Lepr 2000; 72(1):1-3.

The stigma of leprosy. Lepr Rev 1999;71-72.

Archibald H, Fitzpatrick PF, Ree GH. Locally acquired Hansen's disease in north Queensland. Med J Aust 1999; 170(2):72-73.

Barret RL. Coping with the stigma of leprosy in Northern India.  1999. Atlanta, Emory University, Department of Anthropology.
Ref Type: Report

Dikko A, Post E, Gambo E, Post F, Eboh W, Van Jaarsveld T. Market shoes: a better alternative? : a study of the acceptability and utilisation of protective footwear by leprosy patients in Kaduna State, Nigeria.  1999.
Ref Type: Unpublished Work

Gilman SL. Disease and stigma. Lancet 1999; 354 Suppl:SIV15.

Ishida Y, Pecorini L, Guglielmelli E. A case of reconstruction of saddle nose deformity in leprosy. Nihon Hansenbyo Gakkai Zasshi 1999; 68(3):201-205.

van Brakel WH, Anderson AM, Worpel FC, Saiju R, Bk HB, Sherpa S et al. A scale to assess activities of daily living in persons affected by leprosy. Lepr Rev 1999; 70(3):314-323.

Walter CS. Social aspects and rehabilitation. International Leprosy Congress, Beijing, 7-12 September 1998. Workshop report. Lepr Rev 1999; 70(1):85-94.

Bainson KA, Van den BB. Dimensions and process of stigmatization in leprosy. Lepr Rev 1998; 69(4):341-350.

Bekri W, Gebre S, Mengiste A, Saunderson PR, Zewge S. Delay in presentation and start of treatment in leprosy patients: a case-control study of disabled and non-disabled patients in three different settings in Ethiopia. Int J Lepr Other Mycobact Dis 1998; 66(1):1-9.

Naik SS, Ganapati R. Socioeconomics of a global leprosy eradication programme. Pharmacoeconomics 1998; 13(6):677-686.

Navon L. Beggars, metaphors, and stigma: a missing link in the social history of leprosy. Soc Hist Med 1998; 11(1):89-105.

Wakai S. Health care in Burma. Lancet 1998; 352(9135):1230.

Watts J. Japanese victims of discrimination against lepers sue government. Lancet 1998; 352(9128):631.
Available from Infolep

Produced by Infolep, last update: July 2009.
Contact Infolep to request full text copies of selected articles.

Related Links

Health related stigma page - at Royal Tropical Institute

ICRAAS - International Consortium for Research and Action Against health-related Stigma
- at Royal Tropical Institute
- at D-Groups

Stigma Research Workshop, Amsterdam 2010 - Presentations