Gender and Leprosy-Related Stigma in Endemic Areas: a Systematic Review

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 extracted data to elucidate the leprosy- related stigma experiences with special reference to gender-related stigma differences. The results regarding male-female stigma consequences are divided into three main pillars: social, health and psychological.

Results

SEARCH RESULTS

The PRISMA Flow Diagram visualises the process of article review and inclusion (see Appendix 2). The initial number of hits was 241, excluding the duplicates. After the screening, 42 full-text articles were assessed for eligibility. Eighteen studies met the criteria, published between 1993 and 2016. Study designs included cross-sectional, narrative, and retrospective studies. Table 1 shows an overview of the studies incorporated in the review, while Table 2 lists their results (see Appendix 3).

STIGMA-RELATED GENDER DIFFERENCES AND SIMILARITIES Differences between experiences of men and women All comparative studies, except the study by Rao et al.,48 demonstrate a female gender disadvantage attached to leprosy, in the physical, psychosocial and/or economic domain.10,11,18,20,29,30,45 –47,51 –53 The ﬁve single-sex studies add information to the female perspective.36,43,44,49,50 Withington et al. found female sex to be an independent predictive factor for stigma (4·2 vs 1·1%).53 Tsutsumi et al. show an overall lower quality of life score for women than men (74·12 vs 78·61), a higher mental burden among women compared to controls (4·85 vs 2·86), and perceived stigma affecting QOL of women more negatively than that of men (66·74 vs 70·60).29 In contrast, Rao et al. found higher perceived stigma in men compared to women: in society (traditional services: 11·25 vs 3·90; bathing and washing: 9·27 vs 6·23; social participation: 9·13 vs 8·45), and in social institutions (treatment by colleagues: 7·30 vs 4·90; employment and wages: 6·24 vs 3·90).48 Table 1. Study characteristics of the 18 included studies

Article (Author) Sample Design Study site Publication

1 It is within ourselves that we start Personal account, and female Case study Brazil 2004, Lancet (London, to overcome prejudice (Borges, Brazilian self-help groups England) 2004) (43) 2 The dynamics of stigma in leprosy 76 leprosy patients: 47 had In-depth interviews Eastern Leprosy Control 2004, International (Heijnders, 2004) (30) completed treatment and project area (ELCP), Nepal journal of leprosy and 29 discontinued treatment other mycobacterial diseases 3 Assessment of needs and quality 104 women leprosy patients, In-depth interviews and clinical Leprosy Referral Hospital in 2006, Leprosy review care issues of women with leprosy 46 were aged ,40yrs assessment Kolkata, India (John, Rao, & Das, 2010) (44) 4 Gender differences in 273 leprosy cases, aged Analytic cross-sectional study, Most hyperendemic district of 2004, Nepal Medical epidemiological factors .15yrs: 183 males, including record review Nepal, Dhanusa College associated with treatment 90 females method and standardized journal: NMCJ completion status of leprosy questionnaire patients in the most hyperendemic district of Nepal (Kumar et al., 2004) (45) 5 A Comparative Study of the Quality 109 participants: 51 leprosy Cross-sectional study, Leprosy Rehabilitation Centre, 2011, Journal of global of Life, Knowledge, Attitude and patients (36 males, 15 including questionnaires Shantivan, Nere, infectious diseases stigma leprosy-related and Gender Belief About Leprosy Disease females) and 58 community and interviews Maharashtra, India Among Leprosy Patients and members (controls), aged Community Members in .19yrs Shantivan Leprosy Rehabilitation centre, Nere, Maharashtra, India (Mankar, et al., 2011) (20) 6 Risk factors for participation 264 individuals receiving Case-control study design, Quantitative fieldwork in six 2005, Leprosy review restriction in leprosy and leprosy treatment or including a questionnaire and centres in India and one in development of a screening tool to rehabilitation services retrospective assessment Brazil identify individuals at risk (case/control: with/without (Nicholls et al., 2005) (46) participation restriction: 187/177) 7 The effects of leprosy on men and 202 leprosy patients, aged Structured questionnaire, and City of Ribeiraõ Preto, Saõ Paulo 1998, Cadernos de saude women: a Gender Study (Oliveira .15yrs: 132 males, 20 in-depth interviews State, Brazil publica & Romanelli, 1998) (18) 70 females (10 men, 10 women) 423 424 Table 1. Continued Article (Author) Sample Design Study site Publication

8 Male-female (sex) differences in Case notes from 2309 patients: Retrospective study, 10-year Leprosy hospital near Ekpene 2002, Leprosy review Dijkstra J.I.R. leprosy patients in south eastern 1527 males, 782 females review (1988–1997), Obom, South Eastern Nigeria Nigeria: females present late for including standardized diagnosis and treatment and have questionnaire higher rates of deformity (Peters & Eshiet, 2002) (47) 9 Extent and correlates of leprosy 590 leprosy cases (392 males, Survey and in-depth Three leprosy mission hospitals, 2008, Indian journal al et stigma in rural India (Rao, Raju, 198 females), 2399 interviews one each from Uttar Pradesh, of leprosy . Barkataki, Nanda, & Kumar, community members West Bengal and Chattisgarh 2008) (48) (2111 males, 288 females) states (India) 10 The way women experience 5 women with leprosy-related In-depth interviews Two rural districts around 2010, Asia Paciﬁc disabilities and especially and 5 with other disabilities and FGDs Makassar on South-Sulawesi, Disability disabilities related to leprosy in þ5 FGDs with disabled Gowa and Maros (Indonesia) Rehabilitation Journal rural areas in south Sulawesi, women Indonesia (Schuller et al., 2010) (49) 11 From contagious to chronic: a life 21 women: 12 from Narrative analysis method: Lo-Sheng leprosarium and a 2006, Leprosy review course experience with leprosy in leprosarium, 5 from LLTCC 3 FGDs and 7 individual leprosy long-term care Taiwanese women (Shieh, Wang, and 4 from community interviews (life-long centre (LLTCC) in Taiwan & Lin, 2006) (50) (former LLTCC), age perspective of disease) range 54–88yrs 12 Disclosure of Leprosy by Health 155 study participants: In-depth interviews Rural community 2015, Indian journal Care Providers in South-India: 91 males, 64 females covering 7 health of leprosy Patients’ Perception and sub-centres near Relevance to Leprosy Control, Chennai in Tamil Nadu (Thilakavathi, Tamil Nadu (India) Manickam, & Mehendale, 2015) (51) 13 Gendered experiences: marriage 19 patients: 9 males, 10 females 19 semi-structured Lalgadh Leprosy Services Centre 2006, Asia Paciﬁc and the stigma of leprosy interviews in Janakpur District, South Disability (Try, 2006) (11) East Nepal Rehabilitation Journal 14 The quality of life, mental health, 188 participants (154 males, Cross-sectional study, including Governmental Leprosy Institute 2007, Social science and and perceived stigma of leprosy 34 females), 203 controls surveys, questionnaires and and Hospital Compound, Dhaka medicine patients in Bangladesh (Tsutsumi, (115 males, 88 females) interviews (Bangladesh) Izutsu, Islam, et al., 2007) (29) Table 1. Continued Article (Author) Sample Design Study site Publication

15 The Impact of Leprosy on Marital 30 women: 10 affected by Cross-sectional non-random Eastern Terai region 2016, Journal of tropical Relationships and Sexual Health leprosy, 10 other physical survey design, including of Nepal medicine among Married Women in disability, 10 able-bodied. in-depth semi-structured Eastern Nepal (van ‘t Noordende Age range 22–50 yrs. interviews et al., 2016) (36) 16 Gender and leprosy: case studies Participants include patients, Comparative exploratory Clinics in Indonesia, Nigeria, 2009, Leprosy review in Indonesia, Nigeria, Nepal and relatives, community research. Quantitative: Nepal and Brazil Brazil (Varkevisser et al, members and health staff. Analysis 500 patient records. 2009) (10) Total interviews per country Qualitative: 433 structured (66-156-141-80) þ total interviews, 81 FGDs. FGDs per country (15-22-44-0). 17 Double jeopardy: women and 2495 respondents: 934 Structured questionnaires, Bihar and Maharashtra, two 1996, World health leprosy in India (Vlassoff, non-dehabilitated (59% supplemented by in-depth Indian states statistics quarterly Khot, & Rao, 1996) (52) male), 1071 dehabilitated interviews and 25 case studies (63% male), 100 (13 males, 12 females) rehabilitated (55% male) cases; 300 family members; stigma leprosy-related and Gender 90 health workers 18 Assessing socio-economic factors Cohort of 2364 new cases Retrospective, descriptive study Rural north Bangladesh 2003, Leprosy review in relation to stigmatization, of leprosy: 1360 males, of collected data. impairment status, and selection 1004 females. Age range Socio-economic questionnaires for socio-economic rehabilitation: 2–90, mean age 31·4. 546 (new cases in 1996) a 1-year cohort of new leprosy cases (23%) were children cases in north Bangladesh ,16 years. (Withington, Joha, Baird, Brink, & Brink, 2003) (53) 425 426 J.I.R. Dijkstra et al. Social impact In most leprosy-endemic areas, there are patriarchal societies in which men have a dominant role,11,18,52 making them more mobile and financially independent.10 Women’s inferior position and their lower social status make them (more) vulnerable to stigmatisation,10,30,50,52,53 both at family11,18,20,29,30,52 and community level.10,20,30,43,48 – 50,52,53 Mankar et al. found higher percentages of experienced stigma in women than men: at work (73 vs 55%), within the family (40 vs 30%), by society (80 vs 58%), and during schooling (33 vs 8%).20 Varkevisser et al. also reported higher female stigma in social avoidance by family (25 vs 4%) and community stigma (20 vs 12%), both in Brazil.10 At family level, female leprosy patients are neglected18 and rejected52 more often, as they are dependent on others for their living.11 Try found that three out of 10 women experienced a changed attitude of family members, whereas this was the case for only one out of nine men.11 Moreover, Vlassoff et al. found higher female stigma percentages in family events: sitting (37 vs 22%), eating (39 vs 18%), and physical contact in form of touch (25 vs 15%) and sex (24 vs 9%).52 At community level, female leprosy patients have a socio-economic disadvantage50 as they have a lower income or no income at all.53 Borges points out that women may be fired due to leprosy,43 and Schuller et al. reported that they have difficulties finding a job.49 Neither study mentioned male patients. Oliveira & Romanelli, however, stated that men have fear of losing their job,18 and Tsutsumi et al. found that men scored worse on social relationships than women (13·85 vs 14·35), which can be a result of the male social position being more affected by leprosy because they have a more active role in society.21 Female inferiority is reflected in the female marital position as well. Several articles mention women affected by leprosy who were abandoned by their husbands10,11,18,36,44 and family.44 According to Varkevisser et al., 25% of leprosy-affected Brazilian women were abandoned by their spouse, compared to 10% of men,10 similar to findings reported by Try, who found that four out of 10 women were abandoned by their husband, whereas one in nine men was abandoned by his wife.11 Women more often have a negative reaction from their spouse.52 For them, marriage is difficult,49 and remarriage is more difficult compared to men (Try found difficulties in 4/10 women and 0/9 men).11 Due to fear of transmission there is no intercourse and more distance between marriage partners.36 Oliveira & Romanelli stated that affected men more often remained married (74 vs 56%),18 and according to Vlassoff et al., they had to make fewer compromises in their choice of a spouse.52 Society’s negative attitude towards women is magnified due to visible leprosy signs.30,36 Van ‘t Noordende et al. found that three out of four women with disability Grade II (DGII) were sexually abused by their husband, and both women abandoned by their spouse had DGII.36 Women more often avoid social contact, for instance by quitting their job,18 which is explained in two single-sex studies as a result of being shy and ashamed.49,50

Health Several studies reported male patients more frequently having MB and Grade II disabilities than women. Varkevisser et al. found significant differences in Brazil (69·3 vs 57·9% with MB; 14 vs 7·9% with DGII) and in one of the two Nepalese regions (48·6 vs 35·2% with MB; 13·6 vs 6·2% with DGII);10 Kumar et al. found a higher percentage of men with DGII than women (19 vs 7%);45 and Withington et al. also found that men were physically more affected Gender and leprosy-related stigma 427 (19·6 vs 9·4% with DGI/II).53 They also found that women had PB disease more often than men (86 vs 76%).53 Moreover, Mankar et al. found that men were more negatively impacted on the physical QOL domain than women, compared to their gender controls (1·67 vs 0·03).20 However, despite males’ apparent worse health, Kumar et al. found a higher male proportion of treatment completion (79 vs 66%), and a higher female default proportion (34 vs 21%).45 Oliveira & Romanelli, however, state that more men are on MDT (76 vs 63%), but are less likely to complete treatment.18 Social avoidance is often correlated with concealment of the disease and delay in seeking treatment, which can affect patients’ health. According to Oliveira & Romanelli, women are more inclined to conceal leprosy.18 Furthermore, Varkevisser et al. found a longer period before diagnosis for women in two Nepalese regions (6·7 vs 5·3 years and 4·4 vs 2·5 years).10 Peters & Eshiet’s 10-year study also found women’s delay being almost twice as long as that of men. In addition, proportionally more women had deformities than men (49 vs 42%).47 The fact that women report late and are underrepresented in leprosy statistics10 could be a result of social stigma fear52 or of clinic hours that conflict with their domestic or social duties.44 However, physical changes can also interfere with their daily routines and socialisation,50 which may be perceived as incompetence and worthlessness in their gender-ascribed tasks.18 From a male perspective, men ignored the first signs of leprosy more frequently,10 and some men concealed their disease because of concerns for family members.30 In addition, Oliveira & Romanelli mention sexual malfunction due to a reduction in sexual activity and fertility, as a solely male health consequence.18 Sexual health consequences for females, however, are mentioned by Van ‘t Noordende et al.; the single-sex study found that five out of 10 leprosy-affected women were sexually abused by their husbands. As this happened among controls as well, some of it seemed alcohol-abuse related (11/12 of the women who had an alcoholic partner, were sexually abused by him).36 Since education can have an impact on stigma, several studies mention male and female educational levels. Overall, it seems that leprosy-affected men are more likely to have had any formal education and to have more leprosy knowledge than women.10,18,53 According to Oliveira & Romanelli, women have a higher illiteracy rate than men (20 vs 9%),18 and according to Withington et al., adult women are less likely to have had any formal education compared to their male counterparts (84 vs 61%).53

Psychological impact Several articles mention a female disadvantage for leprosy patients in the psychological domain. Mankar et al. measured the QOL for both sexes, and found a relatively higher impact of leprosy on the psychological domain of women compared to female controls than men compared to male controls (1·76 vs 0·76).20 Women suffer in silence43,44 due to self- stigmatization49 and a poor self-image.29,50 Try found three out of 10 women to have low self-esteem compared to 0 of nine men.11 Oliveira & Romanelli mentioned that female leprosy patients tend to neglect themselves, that they fear of abandonment and stigma, and that they are concerned about their appearance.18 Nicholls et al. found fear of abandonment to be a signiﬁcant risk factor for participation restrictions (OR 3·3).46 Vlassoff et al. found a higher female fear of deformity (63 vs 49%).52 Thilakavathi et al. found four of 22 women just diagnosed to have fear and worries concerning stigma, compared to 0 of nine men.51 Shieh et al.’s study of women is in line with Thilakavathi’s study and adds attempted or considered suicide of female leprosy patients.50 428 J.I.R. Dijkstra et al. Similarities between experiences of men and women Mankar et al. stated that both male and female leprosy patients demonstrate lower scores compared to their gendered controls in each quality of life (QOL) domain: physical, psychological, social relationships and environmental.20

Social impact Several studies mention similar social effects of stigma for both genders. First, Varkevisser et al. found similar divorce rates for leprosy-affected men (4/15) and women (2/10).10 Second, Mankar et al. found that the same proportion of men and women experience discrimination during social functions (55 vs 53%).20 Third, Rao et al. found a similar perception of stigma within family in both genders (male-female % in domestic work 4·63–4·63; sleeping and bedding 6·00–5·90; and participation in rituals 11·87–11·00).48 Moreover, Vlassoff et al. stated that both sexes’ family and marital lives are damaged due to leprosy, in terms of family and spouse indifference or rejection, and they found similar percentages of family pressure to leave home for men (49%) and women (63%).52 Fourth, Try found both sexes to experience community stigma (one male and one female interviewee), and banishment (two males and one female). Both sexes reported using separate utensils (eight males/females) and eating separately.11 Fifth, Tsutsumi et al. found a similar impact of deformity on the QOL of both men and women compared to their gendered controls (8·22 and 7·85).21

Health Both genders use secrecy and conceal their disease,11,30 for instance due to fear of exposure, because they wish to keep their social integrity intact,30 or because of courtesy stigma (Try found 4/9 men and 2/10 women).11 Try found self-isolation of both genders (one male, two females).11 Finally, Peters & Eshiet reported no male-female difference in patients’ knowledge level.47

Psychological impact Both men and women affected by leprosy have a worse QOL and worse general mental health,20,29 for instance because of negative experiences, lower self-esteem,11 an altered appearance causing distress,18 or fear of deformity (Indonesia) or disease return when cured (50% of patients Nigeria/Indonesia/Brazil, 75% of patients in Nepal).10

Discussion

This study investigated the differences and similarities in leprosy-related stigma experiences between men and women. In terms of similarities, results confirm earlier findings and underpin the general leprosy disadvantage: all those affected by the disease have a lower quality of life compared to controls. Literature supports this with evidence.5,23,29 The results Gender and leprosy-related stigma 429 also show experienced stigma in the form of discrimination and social exclusion, anticipated stigma leading to disease concealment and self-isolation, and internalised stigma leading to a lower self-esteem, distress and fear. These consequences have been found for other neglected tropical diseases (NTDs) or stigmatising conditions as well.54,55 In terms of differences, the stigma reinforces the leprosy gender disadvantage, and is cited frequently,23,31 –33,35,56 also for other NTDs and stigmatising conditions.24,25,57 –61 Women’s inferior position more specifically results in a number of overarching factors. These five are listed below. First, leprosy-affected women are more frequently rejected at family and community level than men. This confirms findings regarding HIV-related stigma reported by Loutfy et al.69 and TB-related stigma reported by Johansson et al.62 In addition, Turmen’s review has highlighted the threat of or actual violence against women with HIV/AIDS,63 and Gosoniu et al. found abuse of TB-affected Bangladeshi women by their husbands. However, they found more TB-affected men losing their jobs than women.65 Second, women affected by leprosy experience more difficulties in their marital life than men. Similar results are found in Gosoniu’s study on TB.65 A single-sex study on leishmaniasis-affected women also found stigma having an impact on marriage.64 Vlassoff’s study, however, found more men being affected by onchocerciasis-related stigma on various aspects of marriage than women.52 Third, leprosy-affected women suffer more heavily from social avoidance and self- isolation compared to men, which is found for TB as well.65 Two single-sex studies also report social avoidance: Bandyopadhyay’s study on female LF patients found women avoiding contact with their children because of fear of contagion;70 Al-Kamel’s study on female leishmaniasis-patients reported women avoiding potentially stigmatising situations.64 Fourth, women affected by leprosy are found to conceal their disease more often and have a longer delay in seeking treatment than men. This is also found for women affected by TB.66,67 Two single-sex studies reported women concealing HIV or leishmaniasis and having a delayed diagnosis.64,68 Turmen added that HIV-affected women have limited access to or inferior quality of care compared to men,63 and Murthy & Smith’s gender-based review on infectious diseases found significant female disadvantages in accessing healthcare.25 Fifth, it is found that leprosy-affected women suffer more severely from self- stigmatisation compared to men, which is also found for TB and HIV.65,69 Three single-sex studies on HIV,68 LF,70 and leishmaniasis64 reported women having a low self-esteem, shame, embarrassment and perceived stigma. Furthermore, internal fears of leprosy-affected women are also reported in relation to other NTDs and stigmatising conditions. Lawless et al. mention fear of discrimination;68 Bandyopadhyay reports fear of rejection by their husband,70 and Johansson et al. mention fear of abandonment by their husband.67 Vlassoff et al. point out female concerns about physical appearance and life chances;52 Gosoniu et al. state fear of stigma and social isolation,65 and Johansson et al. mention sensitivity for society’s stigma.67 To conclude, the above five factors reinforce the lower social status of women. Three gender-comparative studies, however, found no significant gender differences in stigma scores: one study on podoconiosis, one on onchocerciasis, and one on Buruli ulcer.66,71,72 That said, NTDs such as leprosy are closely related to human rights violations.24 As discussed above, fundamental rights such as freedom from discrimination and violence and access to adequate health care are systematically violated in patients suffering from an NTD, and particularly in females.24,25,73,74 430 J.I.R. Dijkstra et al.

INCONSISTENT FINDINGS

Some of the results of Mankar et al.,20 Varkevisser et al.,10 Rao et al.,48 Vlassoff et al.,52 Try11 and Tsutsumi et al.21 found similar stigma rates for both men and women in the family, marital and/or community field, whereas other studies demonstrated that one gender was more severely or more often affected. Furthermore, most studies report a female gender disadvantage; however, Rao et al. found that men more often perceived stigma in society and social institutions.48 As this is the only study to report this result, this may be due to men perceiving their more active role in society to be more heavily affected by stigma than women’s perception of their role. Other differences in findings involve leprosy-affected men having more leprosy knowledge in Brazil, Nepal and Bangladesh10,18,53 versus both genders having the same level of leprosy awareness in Nigeria.47 Finally, when Nepal and Brazil are compared, men are found to complete leprosy treatment more often than women in Nepal45 versus less often in Brazil.18 The inconsistent findings may be real differences between countries or regions, or may have resulted from a poor-quality study design. Sampling differences between studies, such as rural versus urban or cultural (stigma) variability may also have played a role.

QUALITY OF INCLUDED STUDIES

The design of some of the studies did not fit with our purpose of gender comparison. For example, some included only one gender perspective (5/18). In addition, some studies had flaws in design. For example, some had small sample sizes (4/18 with 30 participants or less), and some lacked information regarding the sample group, such as number of male and female participants (4/18) or the literacy rate. Participants were rarely randomly selected, so findings may have been affected by selection bias. Moreover, some studies lacked a critical appraisal of their own methods and results, which decreases their internal validity.

LIMITATIONS

The review design and methods used also had some limitations. We reviewed only English and Dutch articles, and selection and data extraction was not done independently by two reviewers. However, in case of doubts, the selection and data extracted were discussed with a second author (WvB). We did not use a standard method to rate the quality of each included study. A meta-analysis was not possible due to the heterogeneity and qualitative nature of many studies.

Conclusion

This study supports the consensus that female leprosy patients are more severely affected by the leprosy-related stigma than men: 12 out of 18 gender-comparative studies found a significant gender inequality. Five female single-sex studies strengthen the female findings. The same results are found in other NTDs and stigmatising conditions. These findings highlight the need for attention to gender-specific disadvantages and, where relevant, to measures to reduce leprosy-related stigma and its impact, especially among women and girls. Gender and leprosy-related stigma 431 There is a need for high quality studies on leprosy-related stigma and other leprosy topics that disaggregate data by gender, so the results can inform gender-sensitive policies, approaches and interventions.

References

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Appendices

Appendix 1: Search syntaxes

Thomson Reuters/Web of Science 6 okt 2016 (60) Set Results Search #1 60 TOPIC: (lepros* AND stigma* AND (sex OR gender* OR men OR man OR woman OR women OR male* OR female* OR sexis*)) Indexes ¼ SCI-EXPANDED, SSCI, A&HCI, ESCI Timespan ¼ All years

Ebsco/PsycInfo 6 okt 2016 (10) # Query Results S4 S1 AND S2 AND S3 10 S3 (DE “Gender Equality” OR DE “Sex Roles” OR DE “Sex” OR DE “Human Sex 914,859 Differences” OR DE “Human Males” OR DE “Brothers” OR DE “Fathers” OR DE “Husbands” OR DE “Male Criminals” OR DE “Sons” OR DE “Widowers” OR DE “Human Females” OR DE “Battered Females” OR DE “Daughters” OR DE “Female Criminals” OR DE “Mothers” OR DE “Sisters” OR DE “Widows” OR DE “Wives” OR DE “Working Women” OR DE “Mothers” OR DE “Adolescent Mothers” OR DE “Schizophrenogenic Mothers” OR DE “Single Mothers” OR DE “Unwed Mothers” OR DE “Human Males” OR DE “Brothers” OR DE “Fathers” OR DE “Husbands” OR DE “Male Criminals” OR DE “Sons” OR DE “Widowers” OR DE “Fathers” OR DE “Adolescent Fathers” OR DE “Single Fathers” OR DE “Sex Role Attitudes” OR DE “Sexism”) OR TI (sex OR gender* OR men OR man OR woman OR women OR male* OR female* OR sexis*) OR AB (sex OR gender* OR men OR man OR woman OR women OR male* OR female* OR sexis*) S2 (DE “Stigma” OR DE “Prejudice” OR DE “Religious Prejudices” OR DE 49,467 “Stereotyped Attitudes” OR DE “Discrimination” OR DE “Social Discrimination”) OR TI stigma* OR AB stigma* S1 TI (lepros* OR leper* OR lepra*) OR AB (lepros* OR leper* OR lepra*) 263 434 J.I.R. Dijkstra et al.

Ebsco/CINAHL 6 okt 2016 (23) # Query Results S4 S1 AND S2 AND S3 23 S3 ((MH “Sex Factors”) OR (MH “Sex Role”)) OR ((MH “Male”) OR (MH “Men”) 1,096,558 OR (MH “Married Men”) OR (MH “Single Men”)) OR ((MH “Female”) OR (MH “Married Women”) OR (MH “Single Women”) OR (MH “Women”)) OR (MH “Sexism”) OR (TI (sex OR gender* OR men OR man OR woman OR women OR male* OR female* OR sexis*) OR AB (sex OR gender* OR men OR man OR woman OR women OR male* OR female* OR sexis*)) S2 ((MH “Stigma”) OR (MH “Stereotyping”) OR (MH “Social Participation”) OR 28,578 (MH “Social Inclusion”) OR (MH “Prejudice”) OR (MH “Social Attitudes”)) OR ((MH “Discrimination”) OR (MH “Discrimination, Employment”)) OR (TI stigma* OR AB stigma*) S1 (MH “Leprosy”) OR (TI (lepros* OR leper* OR lepra*) OR AB (lepros* OR leper* 736 OR lepra*))

PubMed 6 okt 2016 (200) Search Query Items found #19 (#15 AND #16 AND #18) 200 #18 “Sexism”[Mesh] OR “Men”[Mesh:NoExp] OR “Women”[Mesh:NoExp] OR 10314928 “Female”[Mesh] OR “Male”[Mesh] OR “Sex Factors”[Mesh] OR sex[tiab] OR gender*[tiab] OR men[tiab] OR man[tiab] OR woman[tiab] OR women[tiab] OR male[tiab] OR males[tiab] OR female*[tiab] OR sexis*[tiab] #16 “Stereotyping”[Mesh] OR “Stereotyped Behavior”[Mesh] OR “Social 60761 Participation”[Mesh] OR “Prejudice”[Mesh:NoExp] OR “Social Discrimination”[Mesh:NoExp] OR “Social Stigma”[Mesh] OR stigma*[tiab] #15 “Leprosy”[Mesh] OR lepros*[tiab] OR leper*[tiab] OR lepra*[tiab] 26048 Gender and leprosy-related stigma 435 Appendix 2: Prisma 2009 ﬂow diagram

Records identified through Additional records identified database searching through other sources (n = 293) (n = 0) Identification

Records after duplicates removed (n = 241) Screening

Records screened Records excluded (n = 241) (n = 199)

Full-text articles assessed Full-text articles excluded,

Eligibility for eligibility with reasons (n = 42) (n = 24)

Studies included in qualitative synthesis (n = 18) Included Appendix 3: Table 2. Results: Leprosy-related stigma experiences through a gendered lens 436

Gendered experiences (social; health; psychological)

Neutral Dijkstra J.I.R. Type of stigma (experienced; Article Differences Similarities anticipated; internalized)

1 It is within ourselves that we start to Social: Women are ﬁred (they cause embarrassment and shame). Experienced: Women get ﬁred. overcome prejudice (43) Health: Women try to hide disease. Anticipated: Women concealment of disease. Psychological: Women often suffer in silence. Internalized: Women suffer in silence. al et . 2 The dynamics of stigma in Social: Women lower social status, on Social: Concealment of disease. Experienced: Visible signs of leprosy were leprosy (30) family and community level. triggers for negative actions towards some women. Anticipated: Strategies of concealment.

3 Assessment of needs and quality care Social/psychological: Husband and family abandonment (when physical Experienced: Female patients face social issues of women with leprosy (44) deterioration), causing mental, social and economic problems. restrictions. Husband and family Social/Health: Most women delay seeking treatment. Time conﬂicted with abandonment. Female delay seeking domestic and lowered social worth. treatment. Internalized: Mental suffering.

4 Gender differences in Social/Health: Men vs women: epidemiological factors associated Higher proportion of treatment with treatment completion status of completion vs default. leprosy patients in the most Health: More men suffer from hyperendemic district of Nepal (45) disability grade II.

5 A Comparative Study of the Quality Social: Discrimination higher in Social: Discrimination. However, Experienced: Discrimination, higher in of Life, Knowledge, Attitude and female patients. leprosy not a deterrent for marriage. women. Belief About Leprosy Disease Among Health/Psychological: Leprosy has Social/Health/Psychological: Mean Internalized: Psychological suffering, higher Leprosy Patients and Community bigger impact on women than men in QOL scores lower in each domain in women. Physical suffering, relatively Members in Shantivan Leprosy psychological domain, and on men in compared to controls. higher in men. Rehabilitation centre, Nere, physical domain. Maharashtra, India (20) Appendix 3: Continued Gendered experiences (social; health; psychological)

Neutral Type of stigma (experienced; Article Differences Similarities anticipated; internalized)

6 Risk factors for participation Social: Female sex is risk factor for Psychological: Both men and women Experienced/Anticipated/Internalized: restriction in leprosy and participation restriction in Brazil but fear abandonment. Participation restriction, women more at risk. development of a screening tool to not India. Internalized: Fear of abandonment. identify individuals at risk (46)

7 The effects of leprosy on men and Social: Women: greater self- Social: Disease causes negative Experienced: Women more often women: a Gender Study (18) stigmatization. More often self- emotional impact. Isolation from abandonment by husband. Neglect of women isolation and abandonment spouse. society. by family. More secrecy from family. Men more Psychological: Distress altered Anticipated: Men fear of losing job, whereas often remained married. appearance caused by disease and women fear of stigma. Women more often Health: Men more education and on treatment. social avoidance, and secrecy from family. MDT, but less likely to complete Both self-isolation. Women quit job before treatment. Men sexual malfunction. leprosy identiﬁed. Psychological: Women more concern Internalized: Women more self- physical appearance and side effects stigmatization, and concern appearance and stigma leprosy-related and Gender MDT. Men fear of losing job, whereas side effects MDT. Women neglect women fear of stigma. Women themselves. Women fear of abandonment. emotional breakdowns and sense of worthlessness. Male fears: Sexual impotence and threat role family provider.

8 Male-female (sex) differences in Health: Women longer duration of Social/Health: No signiﬁcant Anticipated: Women longer delay before leprosy patients in south eastern illness before diagnosis and difference in knowledge level about diagnosis and treatment than men. Nigeria: females present late for treatment, resulting in higher symptoms and curability of leprosy. diagnosis and treatment and have proportion of disabilities. higher rates of deformity (47)

9 Extent and correlates of leprosy Social: Men higher perceived stigma Social: Comparable perception of Anticipated: Men higher stigma perception in stigma in rural India (48) in society and social institutions. stigma within family. society and social institutions. 437 Appendix 3: Continued 438 Gendered experiences (social; health; psychological)

Neutral

Type of stigma (experienced; Dijkstra J.I.R. Article Differences Similarities anticipated; internalized)

10 The way women experience Social: People avoid female leprosy patient and family. Patients also self- Experienced: Exclusion from social activities disabilities and especially disabilities isolation. Female patients not accepted as marriage partner to healthy person. at community-level. Lower marriage related to leprosy in rural areas in Difﬁcult to ﬁnd job. prospects for women and family. Stigmatized

south Sulawesi, Indonesia (49) Psychological: Female cases suffer from self-stigma. by relatives and community. Hard to ﬁnd al et employment.

Anticipated: Avoid social contact due to . embarrassment. Internalized: Women have little self-esteem.

11 From contagious to chronic: a life Social: Women conceal their disease and avoid social/family gatherings. Experienced: Physical changes have negative course experience with leprosy in Health: Physical changes interfere with daily routines and socialization. impact on socialization. Others stare, quickly Taiwanese women (50) Psychological: Women report feelings of shame and incompetence. Some walk away, or avoid close contact. women attempted/considered suicide. Women suffer emotionally. Anticipated: Social avoidance and self- isolation. Internalized: Females low self-image. Worries about marital problems, offspring’s detachment, and embarrassment in family. Sense of shame.

12 Disclosure of Leprosy by Health Care Psychological: 4 of these 22 women Health: 31/155 patients were not Anticipated/Internalized: Women fear or Providers in South-India: Patients’ just diagnosed mentioned fear, worry diagnosed correctly by healthcare worries due to possibility of experiencing Perception and Relevance to Leprosy or stigma. provider, 22 were women. stigma. Control, Tamil Nadu (51)

13 Gendered experiences: marriage and Social: Some say women treated Social: Both genders targets for Experienced: Both targets of community, the stigma of leprosy (11) worse and suffer more. community’s negative behaviour. family and courtesy stigma. Women Women more abandonment by spouse Some men and women say both experience more restrictions in domestic than men. For women, remarriage genders equal burden. sphere, more abandoned by husband, and difﬁcult. More restrictions in Stigmatization within family. Society remarriage difﬁcult. domestic sphere. Female status is banish patients. Courtesy stigma Anticipated: Both self-isolation and more degraded compared to male. affecting families. Self-isolation. concealment of disease. Women low self-esteem. Health: Concealment of disease. Internalized: Women low self-esteem. Appendix 3: Continued Gendered experiences (social; health; psychological)

Neutral Type of stigma (experienced; Article Differences Similarities anticipated; internalized)

14 The quality of life, mental health, and Social: Men (patient and control) Social/Health/Psychological: Both Experienced: Both genders worse QOL perceived stigma of leprosy patients worse scores in social relationships. worse QOL and general mental health compared to controls/no deformity/no in Bangladesh (29) Psychological: Women more than controls/patients without stigma. Men score worse in social psychiatric disturbances, and more deformity/patients without stigma. relationships. affected by perceived stigma than Anticipated: Women more affected by men. Women in purdah no effect on perceived stigma. perceived or internalized stigma. Internalized: Both genders worse mental health than controls/no deformity/no stigma. Women more psychiatric burden. Anticipated/Internalized: Purdah no effect on perceived or self-stigma.

15 The Impact of Leprosy on Marital Social: Women face problems in marital and sexual relationships: Sexual Experienced: Women in marriage: No Relationships and Sexual Health abuse by husband, as well as abandonment. More distance from others. Visible intercourse, more distance, and sleeping in among Married Women in Eastern impairments leads to more (marital) discrimination and abuse. separate beds. Discrimination and abuse by

Nepal (36) spouse, visibility negative effect. More stigma leprosy-related and Gender distance from others. Anticipated: No intercourse due to fear of transmission.

16 Gender and leprosy: case studies Social: Women more often/severely Social: Public avoidance, expulsion Experienced/Anticipated/Internalized: in Indonesia, Nigeria, Nepal and stigmatized within family and from community, and divorce. Stigma is delaying factor in seeking Brazil (10) community, and more abandoned by Psychological: Fear of deformities treatment. spouse. and return of disease. Anticipated: Women late and underreporting. Health: Men higher rates of MB Men more often suppress ﬁrst leprosy signs. leprosy and grade II deformities. Men Internalized: Fear of deformities and return of take longer to seek professional help. disease. Women were late/underreporting. 439 440 Appendix 3: Continued Gendered experiences (social; health; psychological)

Neutral Dijkstra J.I.R. Type of stigma (experienced; Article Differences Similarities anticipated; internalized)

17 Double jeopardy: women and leprosy Social: More often negative spouse’ Social: Both negatively affected in Experienced: More male negative spouse in India (52) reaction towards women. Women family and marital lives. Both have reaction than female, such as fear, shame and isolated/excluded more often from signs of rejection in form of blame. Women more isolated/excluded from al et family/community events. Women indifference by family. Both can family/community events. Women loss of . less likely mention marital problems. leave home, e.g. due to family family intimacy. Both suffer resulting family Men fewer compromises in spouse’ pressure. indifference, and can experience family choice. pressure to leave home. Psychological: Women more Anticipated: Women feeling vulnerable due to loss of family redundant/useless in family and decision intimacy. Women higher fear of to leave. deformity. Internalized: Women higher fear of deformity.

18 Assessing socio-economic factors in Social/Health/Psychological: Female Experienced/Anticipated/Internalized: relation to stigmatization, impairment sex associated with increase Women higher stigmatization. status, and selection for socio- stigmatization. economic rehabilitation: a 1-year Social: Women signiﬁcant lower/no cohort of new leprosy cases in north income. Bangladesh (53) Health: Women more likely PB, less likely to have any formal education. Men higher risk of nerve function impairment at diagnosis.