Lepr Rev (2017) 88, 419–440 REVIEW Gender and leprosy-related stigma in endemic areas: A systematic review JANNA I.R. DIJKSTRA*, WIM H. VAN BRAKEL** & MARIANNE VAN ELTEREN* *VU University Amsterdam, Netherlands **Netherlands Leprosy Relief, Netherlands Accepted for publication 23 June 2017 Summary Background: The social impact of leprosy is said to exacerbate existing gender inequalities, but what is the evidence for this? What are the differences and similarities in leprosy-related stigma experiences between men and women? Methods: A systematic search was done in PubMed, Web of Science, PsycInfo and CINAHL databases, using the web-based version of Mendeley and following PRISMA guidelines. Search terms used in the search syntaxes involved synonyms for leprosy, stigma, and sex or gender. Criteria for eligibility were articles providing data on leprosy-related stigma separate for men and/or women, Dutch or English language, access to full-text copy, information based on primary data (excluding reviews), and a sample group of leprosy-affected subjects above 15 years old, living in leprosy-endemic areas. Case reports were excluded. Findings: 18 articles met the criteria and were reviewed. They demonstrated a female gender disadvantage, in the social, health and/or psychological domain. This was evidenced by a higher percentage of women experiencing stigma, a lower quality of life score for women, and a higher mental burden among women compared to controls. Only one article indicated higher perceived stigma in men compared to women, in society and in social institutions. Overall, it was found that women’s inferior position results in more rejection at family and community level, more difficulties in their marital position, more social avoidance, more concealment and treatment delay, and more self-stigmatisation. All these factors and the lower female social status mutually reinforce each other. It is argued that this gender inequality is the case in other neglected tropical diseases and stigmatising conditions as well. Conclusion: The consensus that female leprosy patients are more severely affected by leprosy-related stigma than male patients is supported by 12 of the 18 reviewed articles, and by other literature. These findings highlight a need for gender sensitivity Correspondence to: Janna Dijkstra, VU Medisch centrum, Amsterdam, The Netherlands (e-mail: [email protected]) 0305-7518/17/064053+22 $1.00 q Lepra 419 420 J.I.R. Dijkstra et al. in leprosy interventions to reduce leprosy-related stigma and its impact, especially among women and girls. Keywords: Leprosy, Stigma, Gender, Neglected Tropical Diseases Introduction BACKGROUND: LEPROSY Leprosy is a chronic infectious disease caused by the bacillus Mycobacterium leprae.1,2 The spread of this bacillus takes place via respiratory droplets and requires close contact. Leprosy mainly affects the skin, nerves, eyes and the upper airway.1–3 People with one to five skin lesions are classified as paucibacillary (PB), and those with more than five as multibacillary (MB).2 The disease is mildly contagious4 with an average incubation period of 4 years in PB and 8 years in MB patients.2 If untreated, the stigmatising disease may lead to permanent and progressive disability – physically, psychologically and socially.5,6 Fortunately, since 1981, an effective multi-drug therapy (MDT) has been available free of charge, and over 20 million patients have been treated until this day.7 The annual global reported prevalence of leprosy is around 200,000 people, and incidence also lies around 200,000 people.7 However, the number of people left disabled worldwide due to the effects of leprosy is much bigger: about two million.8 Because of this case load and the social stigma attached to the disease, leprosy remains a significant global health issue.9 STIGMA There is a certain limitation to the treatment of leprosy: it destroys the bacillus rapidly, but nonetheless, the leprosy-related stigma often remains. This stigma is fed by the fear of transmission, incurability, and disfigurement, and is often – but not always – caused or aggravated by incorrect or insufficient knowledge.10,11 Other factors playing a main role in stigmatisation are fear of stigma,12 social rejection13 and loss of status.14,15 The misconceptions lead to a certain behaviour, and these two mutually strengthen each other.11 There are three types of stigma from the perspective of the stigmatised: it can be experienced, anticipated or internalised.16,17 Experienced stigma is often called discrimination, anticipated or perceived stigma is the expectation or fear of negative attitudes and being stigmatised, and internalised or self-stigma is internalisation of negative attitudes, stereotypes or experiences, affecting a person’s self-esteem and dignity. Other factors caused by or related to the disease and contributing to its stigma are: visibility,18 concealment,19 delay in seeking treatment,5,10,20 fewer years of education,21 lower income or poverty,22 –25 employment problems,26 perceived dangerousness of mental illness,27 – 29 comorbidity,18 culture,30 and gender.31 –33 This study will elaborate on the factor gender, focusing on the triple jeopardy of female leprosy patients. GENDER INEQUALITY Most women in leprosy-endemic areas are seen and treated as inferior to men, due to male dominance in patriarchal societies, and suffer from socioeconomic dependency: men are the primary income providers, whereas women have domestic duties.7,11,34 –37 Next to this Gender and leprosy-related stigma 421 vulnerable position, women are more exposed to gender-related stressors, such as gender based violence and constant responsibility for the care of others.38 Having leprosy reinforces this gender inequality.18,30 Literature refers to this phenomenon as double or triple jeopardy, encompassing the higher female discrimination risk due to lower female status, higher disability impact (including on pregnancy) and more stigmatisation.31,33,35 Braboy Jackson et al. refer to this paradigm with the intersectionality theory, in which multiple forms of stigma overlap.22,23,39 Studies claim that women face more treatment delay risking permanent disability, greater discrimination, more marital rejection, higher poverty, potential abuse, and a lower self-image, even though physically the condition is often less severe.31,33 PROBLEM STATEMENT Despite all earlier research, a comprehensive review of male and female stigmatising experiences is missing. Male experiences of stigma, specifically, have been underreported. However, issues related to gender are relevant to efforts to minimise the stigma’s negative impact;31 knowledge of the relation between stigma and gender can help in reducing discrimination, supporting social acceptance, improving disease control, increasing knowledge and preventing disability.6,40 The purpose of this study is to review research into leprosy-related stigma experiences, focussing on male-female differences and similarities. The main research question is: What are the differences and similarities in leprosy-related stigma experiences between men and women? The hypothesis is that women with leprosy experience a higher risk of disability, social exclusion and other negative effects of stigma than men; however, do studies support this claim? Methods STUDY DESIGN AND LITERATURE SEARCH A systematic literature review design is used to collect multiple relevant studies and to critically analyse them. Search strategy A systematic search was conducted on the 6th October 2016, including four electronic databases: Web of Science, PsycINFO, CINAHL and PubMed. The review was done in line with PRISMA guidelines, relating to qualitative assessment of evidence.41,42 The search syntaxes of the several databases can be found in Appendix 1. Search terms used in all four databases included synonyms for leprosy, stigma, and sex or gender. Eligibility criteria Eligible studies described leprosy-related stigma experiences and had to reflect sex or gender, whether male, female or both. Criteria for eligibility were Dutch or English language, access to full-text copy, and information based on primary data (excluding reviews). The publication date or journal were not considered. Further inclusion criteria were that the sample group had to consist of leprosy-affected subjects above 15 years old, living in leprosy-endemic areas. Case reports were excluded. 422 J.I.R. Dijkstra et al. Study selection Two levels of screening were used. In the initial screen, all titles and abstracts were scanned, duplicates were removed using the web-based version of Mendeley, and eligible studies were identified using the inclusion and exclusion criteria. In the second in-depth screening, all eligible available full-text articles were critically screened. The selected articles were reviewed to confirm eligibility by the supervisor. When there was uncertainty about the eligibility or content of an article, the second author was consulted. DATA EXTRACTION AND ANALYSIS The data extracted included the study perspective (male/female/both), consequences (social, health, psychological), and type of stigma (experienced, anticipated, internalised). When a study solely mentioned either a male or female perspective without indicating a gender similarity or difference, results were put under the subheading ‘neutral’.In addition, study characteristics were added: author, publication year, study design, type of study and sample characteristics. The data analysis encompassed the evaluation of