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Gender, understood as socially constructed roles, behaviors and activities, and the attributes that a society considers appropriate to men, women and those with nonbinary identities,1 may determine inequalities in the impoverished places where neglected tropical diseases occur.2 Leprosy is a neglected disease that is common in low-income countries and the severe deformities and disabilities it causes may have a significant psychosocial impact on those affected. Leprosy patients and their families may be isolated by the stigma caused by the disease. In addition, women affected by leprosy may experience triple discrimination, related to their being women, being disabled by the disease and due to the negative impact of the associated stigma.3
Although in recent years countries have put national leprosy strategies into place, there are still discrepancies between the number of cases of leprosy that are registered and the true number of cases. These discrepancies are greater in the case of women.4,5 There is evidence that women who are less aware of the symptoms of leprosy have lower access to healthcare services. This contributes to delays in seeking treatment, which may be accompanied by increases in deformities and other conditions due to the worsening of the disease.6–8 Furthermore, the impact of the stigma associated with the disease tends to be greater among women than among men, because they suffer greater isolation and rejection both at the social and family levels.9–12 The disabilities and deformities caused by leprosy have different impacts on the perceptions that men and women have of their own image, the way in which they relate to others, and the self-care habits they develop. This is in part due to the socialization processes that define the sexes.13,14
There is growing evidence that incorporating the community into programs to improve health and decrease inequalities15–18 among the most disadvantaged populations is effective.19–23 Community participation, considered a process in which individuals, families and communities assume responsibilities related to health and well-being, was an initiative promoted at the Alma Ata Conference.24 Thus, organizations such as the World Health Organization (WHO) and the International Federation of Anti-Leprosy Associations (ILEP) recognize the importance of an integral approach that includes both people affected by leprosy and their communities.25
The gender perspective is defined as “the process of assessing the implications for women and men of any planned action, including legislation, policies or programs, in all areas and at all levels”. This approach was adopted to promote gender equity in health at the Fourth World Congress on Women in 1995 and ratified by the United Nations in 1997.26 Various publications offer resources and recommendations to help incorporate the gender perspective in scientific publications and research projects.27–30 Reports on neglected tropical diseases31 and on leprosy in particular32 include recommendations to incorporate the needs of women and children in leprosy research and implementation of programs. The types of methodologies used in data collection are also important to guarantee visibility of the most vulnerable groups,2 as is analysis of data disaggregated by sex,31,32 and the incorporation of gender analysis in all stages of research.33
The objective of this study was to analyze the inclusion of the gender perspective in articles about community participation programs carried out with people affected by leprosy.
Methodology
A gender-critical literature review was carried out based on articles identified in a prior study,34 in which a scoping review was carried out to identify published studies on community intervention programs with people affected by leprosy in “global priority countries”. An analysis was also conducted of how community participation contributes to the health of those affected by leprosy. The results showed that in general, women’s participation in the different phases of the programs was not considered. Therefore, it seemed important to conduct an analysis of the gender perspective in scientific publications based on the articles identified for the scoping review. Box 1 shows the inclusion criteria that were used. The other methodologies used can be consulted in the prior study.34 Thirty original articles on the evaluation of community participation programs with people with leprosy in “global priority countries” were identified in the scoping review and used for this study.35–64 The review and the writing of the article were carried out following the recommendations of the Prisma Declaration.65
Box 1
Inclusion Criteria
Community intervention programs: those que carried out with specific groups that present common characteristics, needs or interests, and that aim – through active participation in some or all of the program’s phases – to support the capability of these groups to address needs, promote health and increase quality of life and social well-being.24
Evaluated programs: programs that provide at least one indicator of analysis from the evaluation of results.
People affected by leprosy: those who are in treatment for leprosy and those cured of the disease.81
Community: a specific group of people, often living in a defined geographical area, who share a common culture, values and norms, are arranged in a social structure according to relationships which the community has developed over a period of time.82
“Global priority countries:” the countries that account for 95 percent of the disease burden of leprosy.83
For the critical gender review of the articles, an ad-hoc guide was developed based on the analysis of a gender perspective in scientific publications.30,66,67 Table 1 shows the guide and the questions related to each variable, classified by content of the article: theoretical framework, objectives, methodology, results and discussion. Two transversal questions were also included that were used in the texts related to use of the terms “sex” and “gender” and to the existence of gender biases and stereotypes.
The responses were divided into three categories based on whether the variable appeared in the text; whether it appeared or was mentioned but with only brief details or without providing details; or whether it appeared and was fully developed in the text. Values of 0, 1, and 2 were assigned respectively.
The variables “gender in the keywords” and “gender as a synonym for sex” were categorized in terms of Yes, No or NA. In the case of “gender in the key words”, NA was assigned in those cases in which key words did not appear in the text, and in “gender as a synonym for sex”, when the word gender did not appear in the text, which precluded evaluating whether it was used as a synonym for sex or not. The variable “gender biases or stereotypes” was categorized as Yes or No, and three types of biases were identified in cases in which they appeared in the text. Box 2 shows a glossary of the terms related to gender that are mentioned in the guide.
Two authors analyzed the concordance (GM and CV). Both carried out a parallel analysis of ten percent of the articles included in the study. They compared their observations and discussed and evaluated any differences until reaching an agreement.
Box 2
Glossary of Terms Included in the Ad-hoc Guides
Term
Definition
Sex
“The group of biological characteristics on which male and female categories are based”.
Gender
“Roles, characteristics and opportunities determined by society that are considered appropriate for men, women, boys, girls and nonbinary persons”.1
Gender as a determinant of health
“Characteristics that depend on social roles, attitudes, beliefs, sexual division of work, sexual identity, family role, life cycle… assigned to men and women through cultural models of gender” that result in patterns of unequal health risks, use of health services and state of health.84
Gender stereotypes
“Generalized opinion or prejudice about the attributes or characteristics that men and women possess or should possess of the social functions that each should carry out or do carry out.”85
Gender biases and their types
“Erroneous ideas about equality or the differences between men and women in terms of their nature, their behavior or thinking, which could generate unequal conduct in health services, including in research, and in which this conduct is discriminatory for one sex or the other.”29
The following are among the gender biases found:80
– Androcentrism (A): identifying masculine as the norm
– Error in recognition of differences (D): not identifying the differences between sexes, the different social realities, overgeneralizing and/or assuming heterogeneity
– Use of double standards (DE): use of different criteria to evaluate and treat situations or problems that are substantially similar or identical between sexes.
Table 1
Ad-hoc guide for the analysis of the gender perspective in scientific articles
| Theoretical framework |
| 1. Does it make reference to the magnitude of the problem in both women and men? |
| 1- Does not appear/does not exist/is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 2. Does it take into account the category of gender as a determinant of health? |
| 1- It doesn’t appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 3. Is the term “gender” included in the key words? Yes or No or Not Available |
| (if there is not a keywords section) |
| Objectives |
| 4. Does it include objectives and/or hypotheses to determine associations between the health topic and gender determinants? |
| 1- It doesn’t appear/does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed with detail in the text |
| Methodology |
| 5. Does it take gender into account as a central variable? |
| 1- It does not appear/ does not exist/ not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 6. Was the sample stratified by sex and age group? |
| 1- It does not appear/ it does not exist/ it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 7. Does it take gender into account as a determinant of inequalities in health? |
| 1- It does not appear/ it does not exist/ it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 8. Does it take into account other variables and categories relevant to the social, economic and cultural context? |
| 1- It does not appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 9. Specify variables (if necessary) |
| Results |
| 10. Are results shown disaggregated by sex? |
| 1- It does not appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 11. Were subgroups of men and women analyzed? |
| 1- It does not appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| Discussion |
| 12. Is there discussion of observed differences between men and women? |
| 1- It does not appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| 13. In cases where results are not stratified by sex, is there a discussion of the reasons why? |
| 1- It does not appear/it does not exist/it is not mentioned in the text |
| 2- It appears/it is mentioned in the text (but without detail or very briefly) |
| 3- It appears and is developed in detail in the text |
| Transversal questions |
| 14. Is “gender” used as a synonym for “sex”? Yes, No, NA (when the words gender or sex do not appear) |
| 15. Are there gender biases or stereotypes? Yes or No |
| 16. Type of bias: A (Androcentrism), D (Error in recognition of differences) or DE (Use of double standards). |
Results
General characteristics of the articles
Table 2 shows the descriptive characteristics of the articles, by intervention country. The articles were published between 1990 and 2018, with increased frequency after 2015. The publications are divided into Southeast Asian and African continent countries, and Indonesia and India are the countries with the greatest number of publications. The programs were primarily directed at the adult population, as very few articles addressed the child population or both populations. The study designs were very heterogeneous, and most used mixed methods.
Analysis of the gender perspective
Table 3 summarizes the results of the analysis of the gender perspective in the articles. None of the articles had a positive score for all of the research stages. Only one study stands out for its positive score in all areas except in the area related to objectives.64
Table 2
Descriptive characteristics of the articles
| Author, year of publication | Aim of the study | Target population | Study design |
| Africans Countries | |||
| Ethiopia (n = 4) | |||
| Abera, 200036 | To evaluate the performance and impacts on the beneficiaries of a small loan pilot project | Adults | Mixed Methods |
| Abera, 200335 | To assess the attitude of self-care group members involved in a self-care program and the opinion of health personnel working in leprosy affiliated institutions | Adults | Cross-sectional |
| Abera, 200337 | To evaluate any perceive changes regarding people affected by leprosy and their disease resulting from membership of a self-care leprosy control programs | Adults | Mixed Methods |
| Benbow, 200138 | To describe the development of self-care groups and the successes and failures experienced in the process | Adults | Mixed Methods |
| Mozambique (n = 1) | |||
| Deepak, 201347 | To present and overview of the National Self-Care Groups (SCG) strategy and to understand the perceptions of people with leprosy regarding the benefits and challenges of participation in SCG | Adults | Mixed Methods |
| Nigeria (n = 3) | |||
| Ebenso, 200749 | To explore the perceptions of people affected by leprosy regarding impact of socio-economic rehabilitation on stigma reduction | Adults | Mixed Methods |
| Ebenso, 200950 | To assess the impact of three self-care groups on ulcer prevalence and readmissions rate in a hospital and the perception of group members about self-care | Adults | Mixed Methods |
| Ebenso, 201048 | To propose a mechanism by which socio-economic rehabilitation (SER) reduces stigma following a re-analysis of the transcripts of interviews conducted to evaluate the impact of SER on leprosy-related stigma | Adults | Mixed Methods |
| Tanzania (n = 2) | |||
| Mwasuka, 201856 | To evaluate a prevention of disability project for people affected by leprosy | Adults and Children | Mixed Methods |
| Van der broek, 199864 | To assess the impact of a 7-year intensive health education campaign about leprosy to school children and general public | Adults and Children | Community Intervention: Quasi-experimental |
| South-East Asian Countries | |||
| India (n = 8) | |||
| Chakraborty, 200639 | To describe a self-care program aimed at preventing leprosy-related physical disabilities in a leprosy colony | Adults and Children | Community Intervention: Quasi-experimental |
| Crook, 199141 | To evaluate an educational approach to leprosy control | Adults | Community Intervention: Quasi-experimental |
| Ethiraj, 199551 | To study the effect of self-care learning by leprosy patients in prevention of disabilities | Adults | Community Intervention: Quasi-experimental |
| Gershon, 199252 | To evaluate the impact of community-based rehabilitation program to assess the associated problems | Adults | Mixed Methods |
| Jagannathan, 199353 | To assess the cost effectiveness and suitability of the application of a pilot project on community-based rehabilitation | Adults | Qualitative |
| Norman, 200457 | To describe a method of leprosy case detection in school children and to compare the evaluation with the National Leprosy Eradication Programme | Children | Community Intervention: Quasi-experimental |
| Porichha, 201161 | To evaluate the effectiveness of a prevention of disabilities services by self-care with community support | Adults and Children | Mixed Methods |
| Rao, 200062 | To assess the socio-economic rehabilitation needs of people affected by leprosy and to implement interventions acceptable to them and their families | Adults | Cross-sectional |
| Indonesia (n = 7) | |||
| Dadun, 201746 | To provide evidence of the effectiveness of three interventions in reducing leprosy-related stigma in order to provide policy recommendations | Adults | Community Intervention: Experimental |
| Lusli, 201554 | To draw out lessons from a pioneering study of involving lay and peer counselors in a leprosy oriented stigma reduction project | Adults | Mixed Methods |
| Lusli, 201655 | To assess the impact of a counseling intervention on reducing leprosy-related stigma | Adults | Mixed Methods |
| Peters, 201559 | To assess the effect of a contact intervention in reducing leprosy-related stigma | Adults | Mixed Methods |
| Peters, 201560 | To describe a study of a stigma assessment and reduction of impact project that designs and implements interventions for people affected by leprosy | Adults | Qualitative |
| Peters, 201658 | To demonstrated the impact of a participatory video process on video makers who are affected by leprosy and to increase understanding of how to deal the foreseeable difficulties | Adults | Mixed Methods |
| Susanto, 201763 | To understand the experiences of people affected of leprosy participating in self-care groups (SCG), to improve the functions of SCG to resolve self-care problem in the community | Adults | Qualitative |
| Nepal (n = 5) | |||
| Choudhary, 201740 | To ascertain the extent to which a stigma elimination project methodology might impact on poverty alleviation | Adults and Children | Mixed Methods |
| Cross, 200145 | To describe and to evaluate and intensive 14 day self-care training programs conducted in a leprosy center. | Adults | Qualitative |
| Cross, 200542 | To evaluate a program designed to address the issue of leprosy-related stigma | Adults | Mixed Methods |
| Cross, 200543 | To analyze the extent to which stigma elimination program affected the social participation of people affected by leprosy | Adults | Case-control |
| Cross, 201444 | To record whether leprosy effected people in a poverty reduction project were participating in leprosy services and if so what motivated them to do so and what might be done to encourage further involvement | Adults | Mixed Methods |
Table 3
Results of the analysis of the gender focus by variable group included in the ad-hoc guide
| Author, year of publication | Theoretical framework | Objectives | Methodology | Results | Discussion | Sex/Gender | Stereotypes |
| African Countries | |||||||
| Ethiopia (n = 4) | |||||||
| Abera, 200036 | - | - | + | + | - | x | A, D |
| Abera, 200335 | - | - | - | - | - | x | A, D |
| Abera, 200337 | - | - | + | - | - | x | A, D |
| Benbow, 200138 | - | - | - | - | - | x | A, D |
| Mozambique (n = 1) | |||||||
| Deepak, 201347 | - | - | ++ | ++ | - | + | A, D |
| Nigeria (n = 3) | |||||||
| Ebenso, 200749 | - | - | + | ++ | - | x | A, D |
| Ebenso, 200950 | - | - | + | - | - | - | A, D |
| Ebenso, 201048 | - | - | + | ++ | - | - | A, D |
| Tanzania (n = 2) | |||||||
| Mwasuka, 201856 | - | - | - | - | - | x | A, D |
| Van der broek, 199864 | ++ | - | ++ | + | + | - | A, D |
| South-East Asian Countries | |||||||
| India (n = 8) | |||||||
| Chakraborty, 200639 | - | - | ++ | + | - | x | A, D |
| Crook, 199141 | - | - | ++ | + | + | + | A, D |
| Ethiraj, 199551 | - | - | - | - | - | x | A, D |
| Gershon, 199252 | - | - | + | - | - | + | A, D |
| Jagannathan, 199353 | - | - | - | - | - | x | A, D |
| Norman, 200457 | - | - | + | - | + | + | A, D |
| Porichha, 201161 | - | - | ++ | - | - | + | A, D |
| Rao, 200062 | - | - | + | ++ | - | + | A, D |
| Indonesia (n = 7) | |||||||
| Dadun, 201746 | - | - | + | + | + | + | A, D |
| Lusli, 201554 | - | - | + | - | - | + | A, D |
| Lusli, 201655 | - | - | + | ++ | ++ | + | A, D |
| Peters, 201559 | - | - | + | ++ | - | + | A, D |
| Peters, 201560 | + | - | - | - | - | + | A, D |
| Peters, 201658 | - | - | + | ++ | - | + | A, D |
| Susanto, 201763 | - | - | + | - | - | + | A, D |
| Nepal (n = 5) | |||||||
| Choudhary, 201740 | - | - | ++ | - | - | + | A, D |
| Cross, 200145 | - | - | + | + | - | + | A, D |
| Cross, 200542 | - | - | ++ | - | - | + | A, D |
| Cross, 200543 | - | - | ++ | - | + | x | A, D |
| Cross, 201444 | - | - | + | - | - | x | A, D |
- All of the variables of the group have a 0 value. + In the group of variables there is at least one with a value of 1. ++ In the group of variables there is at least one with a value of 2. - Gender as a synonym for sex:. x: No assessment possible because the terms did not appear in the text. +: An adequate use of the therms was identified. -: The use of the term gender as a synonym for sex was identified. – “Gender stereotypes”: A (Androcentrism); D (error in the recognition of differences).
In terms of theoretical framework, the articles did not take into account differences between men and women affected by leprosy and whether these were equitable or avoidable. The category of “gender” as a social determinant of health was only identified in one study, which highlighted the importance of taking gender roles into account in order to promote program effectiveness.64 In general, it was not possible to evaluate whether gender was included in key words, given that in the articles analyzed key words were not included.
There were no article objectives that included detecting an association between the research topic and gender determinants.
In the methodology analysis the studies did not use gender as a dependent variable, nor as a determinant of health inequalities. Most studies mentioned a simple distribution of sex in the sample,36,44–46,48–50,52,54,55,57,59,62–64 and there were few studies that carried out a stratification of the sample to observe differences by sex.39,40,42,43,47,61 In contrast, the majority took into account other variables related to the social, economic and cultural contexts36,37,39,44,46–50,52,54,55,58,59,63 and some did so in detail.40,41,64 The variables mentioned included: marriage status,36,46–50,52,54,55,58,59,63 occupation,37,39,44,46,49,50,54,58,59,63,64 education level,41,44,46,48,49,52,54,55,59,63,64 religion,48,49,54,64 income level,40,46,59 ethnicity,48,49 place of residence,39 role in the community59 and family size.52
The analysis of the results showed that although some articles disaggregated the results by sex,36,45,48,49,55,58,59,62,64 the majority did not collect or describe the data in a way that would make it possible to carry out a comparative analysis by sex. Despite this, some of the articles did analyze subgroups of men and women in a brief way,39,41,45,46,64 and others did so in more detail.47–49,55,58,59,62
Discussion
This critical literature review analyzed the use of the gender perspective in 30 articles related to community participation programs and leprosy. In general, these studies did not take into account a gender perspective in the theoretical frameworks nor in the objectives. Gender biases were found in the articles, including androcentric biases and errors in recognition of differences. Although occasionally articles disaggregated the data by sex and took into account other variables related to the socio-economic and cultural contexts, the majority did not show disaggregated results, did not analyze subgroups of women and men, and failed to discuss the differences between them. In contrast, we found proper use of the terms sex/gender.
There is substantial evidence that shows that gender acts as a determinant of inequalities in health in people affected by leprosy.4,9,68,69 Thus, it should have been possible to consider differences between men and women and whether these were equitable or avoidable. This fact is related to androcentric bias errors in the recognition of the differences identified in the articles. This suggests a lack of sensitivity toward the differences between men and men affected by leprosy and a decontextualization of the social reality of both groups as well as androcentric universalization of the results. This generalizes the information derived from the dominant group and assumes the heterogeneity of both groups. As with research on other diseases such as HIV/AIDS, androcentric biases in the formulation of the problem can result in an underdiagnosis and an increase in women’s morbidity and can perpetuate existing gender inequalities.70
In addition to sex, age and the most commonly identified variables in this study (marriage status, occupation and socio-economic status), there are other variables that act as determinants of inequalities in health, for example ethnicity, religion, geography and disability.71 In this way, there are other factors that influence men and women affected by leprosy differently, such as in terms of mobility, access to health services, adherence to treatment, methods used to detect cases and cultural and religious taboos.69,72,73 Some authors suggest new methodological approaches based on the concept of “intersectionality”, which recognizes the heterogeneity of the groups of men and women defined by the multiple and interwoven dimensions already mentioned. They suggest the need to analyze these differences between both groups, taking into account these variables and the way in which they interact.2,71,74 Making use of these approaches on behalf of the research articles analyzed would have allowed for a wider view of the health situations of people affected by leprosy, which would also constitute a more appropriate and integrative approach to the disease.75
The distinction in the concepts “sex” and “gender” is fundamental in order to understand the social bases of the differences between men and women in research in health. Despite that there has been progress in this aspect, as observed in this and other studies,76 both terms are still used interchangeably and are often without conceptual development in the designs and analyses, which constitutes a lack of scientific rigor.
There is no evidence of other publications that analyze the gender perspective in research on interventions with people affected by leprosy, although there have been similar results found in similar studies that concern the gender perspective in research in the area of health.77,78 Their results coincide with those of this study in that, although they do disaggregate data by sex, there is a tendency to treat women as homogeneous groups and not to study intersectionality together with other social, cultural and economic variables. And on the other hand, they neither analyze nor discuss the differences in the results obtained between groups of men and women.
Limitations
This study presents some limitations. First, the articles analyzed in this study belong to a prior project focused on community intervention evaluations and leprosy. It could be that the observed results are influenced by the topics of these studies, although the coincidences in our results and results from other studies on other topics seem to minimize this possible limitation. The comparison of our results with other similar studies is limited by the fact that we did not find any study related to an analysis of the gender perspective in the publications related to leprosy.
Conclusion
We understand the gender perspective as an approach that takes into account differences between men and women and that explores their interactions, taking into account the fact that inequality has repercussions on the health process. In this sense, the results obtained indicate that these studies did not consider the inequalities in gender that are implicitly related to leprosy in the area of community intervention programs. For this reason, the results of these studies do not reflect the full reality of those who experience the disease. Therefore, they do not contribute to decreasing inequalities between men and women affected by leprosy.
Recommendations
Health policies are needed that aim to eliminate health inequalities in research and practice and that ensure universal healthcare.
In terms of methodology, it is important to use guides that have been specifically designed in a way that incorporates a gender perspective in research27,28,79 and to use tools that help identify and decrease the presence of gender biases.29,80 It is recommended that journal editors include instructions for their authors that recommend the inclusion of a gender focus in submitted manuscripts.
As a final practical recommendation, it is necessary to develop evidence-based strategies to raise awareness among health professionals and researchers on the importance of incorporating a gender perspective in all phases of research and programing with people affected by leprosy. This is essential in order to address inequalities. It is also important to promote the inclusion of those affected and their communities in these processes.
Funding
No funding was provided for this research.
Conflict of interest
The authors report no conflict of interest.
Contributorship
GM and CVC developed the study and designed the ad-hoc guide. GM, DG and CVC participated in the other areas of the design, analysis and interpretation of results. GM prepared a first draft of the manuscripts and sent it to DG and CVC for review. All authors made substantial contributions to the different versions of the study guide and to the manuscript. All authors gave final approval of the version to be published and take public responsibility for appropriate portions of the content. All authors agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
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