Introduction

India accounts for 21% of the 1.45 billion people estimated to be infected with soil-transmitted helminths (STH) globally [1]. The World Health Organization’s (WHO) target for endemic countries is to reach 75% of at-risk pre-school aged children (PSAC) aged (1–4 years) and school-aged children (SAC) aged (5–14 years) with deworming treatment by 2020 [2]. Based on these recommendations, the Ministry of Health & Family Welfare (MOH&FW), Government of India, initiated the National Deworming Day (NDD) programme in 2015 where all PSAC and SAC are targeted for deworming biannually in endemic areas [3]. In one of the largest mass drug administration (MDA) programs in the world, an estimated 226 million children were treated by the NDD programme in 2018 [4]. This is a multi-sectoral initiative where, in addition to MOHFW, implementation takes place through the combined efforts of Department of School Education and Literacy under Ministry of Human Resource and Development, Ministry of Women and Child Development and Ministry of Drinking Water and Sanitation.

Recent mathematical modelling studies have indicated that it may be possible to interrupt the transmission of STH by expanding treatment eligibility to individuals of all ages [5,6]. The DeWorm3 study is a multi-country community cluster randomized community-based trial being conducted in Benin, India, and Malawi testing the feasibility of interrupting STH transmission using community-wide MDA (cMDA) compared to standard of care school-based deworming programmes [7]. This hybrid implementation-effectiveness trial also uses mixed-methods to optimize the delivery of trial interventions and generate potential recommendations for translation of study evidence into relevant changes in policy and practice [8]. At study baseline, prior to the launch of the DeWorm3 intervention, qualitative formative research was conducted among men and women residing in these communities to identify barriers and facilitators to cMDA and opportunities for streamlining and optimizing community wide STH programmes.

Evidence suggests that gendered beliefs and norms influence healthy practices and health-seeking behaviour and may contribute to disparities in health outcomes resulting from neglected tropical diseases (NTDs) (including STH), diarrhoeal diseases, HIV and other maternal and child health conditions [9–13]. A recent systematic review and meta-analysis demonstrated that the prevalence of Schistosoma japonicum and hookworm was higher among males reflecting the role of gender norms like fishing and farming to be the reason for higher prevalence among men [11]. While one analysis of MDA coverage from 16 countries found that MDA coverage is generally gender equitable [12], in 2016, the median coverage for all diseases was slightly higher for women than men. For lymphatic filariasis (LF), only two countries, Haiti and Indonesia, reported higher coverage among men than women. Studies of MDA for lymphatic filariasis (LF) in India also observed discrepancies in MDA compliance (proportion of people who take a drug after receiving it) by gender in different regions; men had higher treatment compliance than women in Odisha but in Maharashtra, coverage was lower among men [14,15]. Deliberate examination of gender equality and equity in health research and health programmes may be one strategy for reducing these disparities [16]. However, there are few studies on the gender-based factors that influence participation in MDA programs, particularly in the Indian sub-continent, where the largest proportion of the world’s population at-risk of STH resides.

We describe gender-based perspectives of STH infection and cMDA for STH among adult men and women residing in the community in India where the DeWorm3 trial is being conducted. We investigated community members’ beliefs and knowledge of STH, perceived effect of STH treatment on health and wellbeing, and attitudes toward the cMDA programme.

Methods

Results

A total of 65 adult community members participated in the FGDs, including 33 women and 32 men (Table 1). The age of women who participated in the FGDs ranged from 19–65 years (median 40), most of them were married, and belonged to the Hindu religion. Nearly half (47%) of the women completed middle or higher secondary school. Most of them (79%) were daily wage labourers, had a petty business, or were working on their farms and the rest were homemakers. The age of men who participated in the FGDs ranged from 21–75 years (median 58) of age. Most of them were married and all were Hindus. The majority of males (72%) completed middle or higher secondary school. Most men (59%) were farmers and others were engaged in small business activities or were retirees.

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Table 1. Background characteristics of the FGD participants.

https://doi.org/10.1371/journal.pntd.0008829.t001

Broadly, the results presented include knowledge among men and women about STH in general; the awareness of STH among adults; what they believe could prevent STH; and their attitude to cMDA and cMDA strategy they believe would result in high treatment coverage. Overall, women needed more prompts to continue the discussion and answered briefly whereas men were more descriptive in their response.

Discussion

This study describes gendered perspectives of knowledge, beliefs, and attitudes regarding STH transmission and cMDA. Barriers to acceptance and utilization of health services can be addressed if community perspectives, including gender specific perspectives, are considered during program planning and implementation. Analysis of national-level datasets shows that although overall gender disparity is improving over time among children’s health and care-seeking behaviours like immunization, stunting, and treatment-seeking for acute respiratory infections, but it persists probably due to gender discrimination favouring the male child [18]. Among adults, reproductive health and HIV related programs have shown improvement in gender and health inequity by enhancing participant’s agency to adopt a behaviour [19]. In Indonesia, women have been shown to be more likely than men to have received MDA for LF, likely because the MDA was conducted during the day when men were not available. However, in this study, women were less likely to have consumed the drug, due to avoidance of MDA among pregnant and lactating mothers [20]. Compliance by gender in MDA programmes, including LF programmes, varies across states in India. Reasons for non-compliance include fear of side effects, forgetting to consume, too many tablets, and no repeat visit to houses; however, to date, drivers of differential non-compliance by gender including household power relations influencing participation have not been systematically reported [15,16]. Understanding gender-specific factors influencing demand for MDA and treatment uptake is important in order to maximize program design and implementation.

Men and women in this study demonstrated similarly high levels of knowledge regarding STH and STH transmission probably because of government’s biannual school deworming program. The high level of knowledge about STH infections observed in this study may be due to the intensive national deworming day and WASH government programming and sensitization in this study area. Female participants appeared to have a more comprehensive understanding of the signs and symptoms associated with STH infection. This is possibly because women have more opportunities to learn about maternal, child health, and adolescent health programs where deworming could have been discussed in the relation to nutrition, anaemia, and growth. Both men and women were aware that STH infections could affect adults and were not limited to children alone, and they believed that adults may be re-infecting children after they are treated as part of the national deworming day. Both men and women knew that STH transmission is associated with inadequate hygiene and sanitation. Gender norms, as also reported in other studies [11], seems to shape vulnerability to STH infections as women highlighted transmission risks related to sanitation and food consumption while men associated their risk to STH infection with farming because it is not feasible while farming to go home to use a toilet. They believed that loss of appetite and loss of weight due to STH infections made infected individuals prone to many other illnesses. However, this study also showed that misconceptions about having worms may also prevail in the community, including the belief that worms aid in digestion though the source of this misconception is not known. This is similar to findings reported in a study from Bangladesh [21]. Studies comparing knowledge of STH among men and women in India are limited. Available data do suggest that knowledge of LF is similar among men and women, while knowledge of tuberculosis and HIV appears higher among men than women [16,22,23].

Our study showed that stigma of having STH infections was probably a barrier to accessing treatment by the adults and therefore, both men and women felt that cMDA might alleviate such concerns regarding STH stigma, which otherwise prevented adults from openly seeking treatment. Systematic reviews have shown stigma resulting in feeling of shame and social exclusion to be a barrier to accessing treatment for other NTDs like LF and leprosy [24,25]. Our study suggests that stigma may be an important driver of non-compliance with NTD programs even for relatively asymptomatic infections. This finding supports the likelihood that cMDA for STH may be a preferred approach to increasing access of STH chemotherapy in adults, as this approach avoids discrimination in drug delivery between those infected and not infected.

While both men and women had concerns about the safety of deworming medications, women were more concerned about drug side-effects and drug quality than men. Fear of side effects may be due to personal experience of side-effects or from reports from other community members experiences of MDA programmes, including those for STH, LF, and other NTDs. [15]. Women, influenced by gender roles, may be particularly concerned about side-effects, in themselves or their family members, because as the primary caregivers they are perceived to be responsible for family health and welfare. Also, observing side-effects among family members and neighbours can create fear, and lead to non-compliance.

As caregivers of the family, women discussed that only children benefit from school deworming, but with cMDA, everyone in the household. Men, on the other hand, generalized as cMDA will benefit everyone. The men and women in this study believed that door-to-door drug distribution by trusted community care providers would help in community participation in the cMDA programme. As men described, door to door distribution will also provide opportunities for information sharing at the household level through interpersonal communication, provide an opportunity to clarify concerns and overcome fear and misgivings, and establish trust with the drug distributors, and thus facilitate high coverage. Importantly, as noted by men in this study, the timing of drug distribution in the community should be considered during cMDA micro-planning, as many would be out of home for work during the day and some would be temporarily migrated for work or other commitments. Studies have shown that the availability of community members at home during MDA can be as low as 50% [15].

Unlike other studies, female participants in our study did not express that males have all decision-making control regarding household participation in cMDA. Studies from Indonesia and Ethiopia indicated that women’s participation in MDAs was controlled by men in their families [13,26]. One study in Uganda found that women indirectly had greater decision-making power to participate in NTD treatment programmes because men were away for work and were absent during MDAs [27].

We used the CFIR framework to structure our DeWorm3 qualitative data collection and analysis, from which this sub-study was conducted. The CFIR is a determinants framework, used to identify facilitator and barriers to implementation. However, the CFIR does not incorporate gender theory, and one of the CFIR constructs, ‘knowledge & beliefs about the intervention’, emerges as salient drivers of thematic content. This construct explores individuals’ attitudes towards, and value placed on the innovation, as well as familiarity with facts, truths, and principles related to the innovation. Although the CFIR does not include gender theory, these constructs drove key findings that mirror constructs included in other gender-based theories such as Harvard Analytical Framework and Women’s Empowerment Framework [28,29]. These gender-based theories include constructs that evaluate factors influencing differences in access to services by women and men and control of resources.

A limitation of this study is that the FGDs were not mixed gender, which might have allowed us to understand obvert agreements and disagreements between men and women regarding perceptions of STH programming. However, FGDs were conducted separately in order to ensure safe opportunities for women to speak freely. There is also a possibility that gender relations within the households that were approached could have influenced the participation of community members, particularly of women, in the FGDs. The study design limited participation of only one person from a household, and it cannot be assumed that the perceptions of the selected individuals are representative of their household or community. Moreover, community members of all ages were included in FGDs which limited deeper understanding of the intersectional perceptions of cMDA, influenced by both age and gender. Further, we did not use a gender analysis framework to design and analyse the data from these FGDs. This study discusses cMDA for STH and did not compare it with delivery of school-based deworming which is the standard of care.

These findings suggest, that (i) both men and women should be informed about the rationale for multiple rounds of cMDA for STH regardless of STH infection status to achieve sustained high compliance; (ii) women in particular, need to be informed that the drug distributed in cMDA is safe and it is the same drug that is distributed to children in schools by the government; (iii) though women are more concerned about side-effects of the treatment, both men and women should have or know the contact details of the person/s to call in the event of any adverse events; (iv) misconceptions raised by some men like STH infections aiding in digestion should be clarified, while the knowledge the women had about effects of STH infections on health should be reinforced; (v) behaviour change to adopt WASH practices should be encouraged; and (vi) information about cMDA and drug delivery should be carried out by trusted government frontline health workers.

Conclusion

This study showed high baseline knowledge of STH infections among men and women residing in this community, indicating fairly equitable access to information about these infections. Men and women had similar positive beliefs and attitudes towards cMDA for STH, indicating broad community willingness to participate. Some gender differences were observed, particularly with women expressing concerns regarding drug quality and men expressing concerns that the timing of cMDA delivery to the household may affect the likelihood of reaching migratory individuals or those away from the household during the day. This study identified some general and gender-specific key messages that should be incorporated within communication strategies for future cMDA programmes, including the rationale for cMDA, information on drug safety and information, and details of whom to contact in case of adverse events.

Supporting information

Acknowledgments

We thank the community leaders of the study site for their support and all the participants for their time and effort taken to share valuable information about community-wide deworming. We thank Guru Nagarajan, Christian Medical College, Vellore and Pallavi Lele, KEM Hospital Research Centre, Pune for their support in training, Surya Kulasekaran and Malvika Saxena, Christian Medical College, Vellore, for their support in data collection and coding respectively. We thank the field managers, field supervisors and field workers of the DeWorm3 study for logistic support during data collection activities in the field.