Lesson 1: Tailored gender frameworks help make the focus on gender explicit

Gender frameworks can help researchers, policy makers and practitioners understand and address the gender power relations which are most relevant to their work. Morgan et al10 identified 42 gender frameworks, guidelines and tools developed by a variety of agencies and organisations (15 of which focus on health, health systems and development).10 The health examples included a manual for integrating gender in reproductive health and HIV programmes and a guide by Pan American Health Organization (PAHO) to organise analysis and monitoring of gender equity in health policies.10 To date, no gender mainstreaming frameworks relate specifically to NTDs, which is a missed opportunity for action.

To promote gender equity within MDA, we need to start by breaking down the different components of the intervention. MDA can be implemented in different ways depending on the context, target groups and diseases which are being treated and prevented. In table 1, drawing on discussions at the Women and Girls in Focus meeting, we have broken down the different elements of MDA, summarised the extent to which sex disaggregated data are collected and posed questions to support critical reflection on how gender may shape access to, and experiences of, MDA. This is not an exhaustive list, and the issues and questions under discussion may not be appropriate for all settings. Gender frameworks, such as in table 1, are most effective when used as a starting point for collective thinking to develop deeper understanding and ownership of gender issues and to ensure that the questions under review are appropriately adapted to context.17

Lesson 2: Gender does not operate in isolation: taking on the challenge of intersectionality

Gender interplays with other axes of privilege, power and inequity such as age, nationality, ethnicity, religion, sexuality, (dis)ability and socioeconomic status.18 Larson et al12 argue that ‘Intersectionality has emerged as an important framework for understanding and responding to health inequities by making visible the fluid and interconnected structures of power that create them’.12 Intersectional analysis therefore allows for a more thorough and nuanced approach to promoting gender equity. Some of the gender questions above speak to how gender interplays with other axes of power and privilege, but it is important to recognise that individual positionalities are often shifting, and in the case of NTDs, very different positionalities may result in the same outcome—lack of access to MDA. Women with caring responsibilities within the home may encounter challenges in making time to come to a central location. Similarly, migrant or nomadic women or men may face particular challenges in accessing MDA, as might those living in fast growing urban informal settlements where MDA programmes have faced more challenges.19

For example, in the Nubian Desert area of Sudan, Charles Mackenzie from Liverpool School of Tropical Medicine described how during the distribution of ivermectin, certain nomadic groups do not allow contact between nomad women and girls, and Sudanese health workers distributing the drugs; this presents difficulties in monitoring and provision of MDA to these individuals due to cultural and traditional norms.

Affected individuals can also be hidden within communities due to stigma and lack of perceived need.

For example, in Nigeria people living with disability may be excluded from community level interventions such as house-to-house distribution due to confusion among CDDs regarding how to treat people living with disabilities, particularly when people are unable to stand or perceived to be sick due to their disability.20

In addition, disabled people may find the accessibility of fixed distribution points challenging. The involvement of disabled people as CDDs, as a mechanism to increase the involvement and integration of disabled people in community-based interventions, is rarely considered. These examples demonstrate how gender can interact with poverty, (dis)ability, occupation, power, geography and other individual positionalities. We need to think about, and address, multiple interactions if MDA programmes are to be able to rise to the challenge of addressing and promoting equity. Other developments in gender mainstreaming include a critique of the male/female binary and how this might limit analysis and action to address the needs of people of other genders. Using an intersectional lens to adapt existing gender frameworks to use for NTD programming would allow for a more structured approach to intersectional analysis.

Lesson 3: Gender power and participation—who gets chosen as community representatives and why it matters

There are many people involved in MDA campaigns and this often varies by disease programme.21 CDDs are arguably the backbone of NTD programmes at the community level and include teachers, midwives, nurses and lay people. The rationale behind CDDs is that they are selected by communities through a participatory process, and are trustworthy individuals who are committed to promoting community health. We have become accustomed to the idea that community ownership is an essential element of NTD control, but communities are dynamic with complex power structures that may need better understanding and research in real time.22 Lessons from research on community health workers (CHWs) in five African contexts (that may be of relevance and provide lesson learning for the NTD community) show how respondents described several problems related to CHW selection. These included nepotism in the selection process; that the participants willing to undertake the role may not meet selection criteria (eg, older women and men may not meet the educational criteria); the difficulty in recruiting young literate CHWs; early drop out due to misinformation about the job; and too few people volunteering.23 The ways in which selection of CDDs is carried out and the extent to which this mirrors or challenges gender norms within NTD programmes is not clear, but arguably the more open and participatory the process, the more chance the process could be gender equitable. Thus, although community participation strategies may look equitable on paper, their implementation is often challenging and can have the unintended consequence of reinforcing gender and social hierarchies within communities.

There are evidence gaps in understanding who CDDs are, by gender and by age. What is clear from the broader literature on CHWs is that gender matters. Naimoli et al24 state that in many countries, women figure prominently as CHWs although this varies by context and by policy. In Ethiopia, all health extension workers are women and this was found to be positively valued by the community because of the perceived cultural suitability of women handling reproductive health issues.24 25 Raven et al’s7 23 analysis from exploratory case studies using document reviews, in-depth interviews and focus group discussions shows that in the Democratic Republic of Congo, Senegal, Uganda and Zimbabwe, CHWs were reportedly more likely to be female and aged over 30 years. Older women were seen as being more interested in health issues; already involved in health within families; respected and listened to within communities; and perceived as being able to work easily with people. However, in Ghana, CHWs were more likely to be male as women are more occupied with taking care of their farms, homes and families.23 There is need to think critically about who is chosen to be a CDD, what this means for interactions within the community and how they are best supported to deliver on their important role.

Lesson 4: We need to unpack gender and power dynamics at household level

Gender analysts have long argued that we need to unpack the household and understand the ways in which gender, generation and power play out to affect who can make choices (including to seek healthcare), access resources and take medicines.26 27 CHWs (such as CDDs) often have to negotiate complex gendered decision-making processes when they visit house to house to deliver MDA.

An example provided at the meeting showed how in Mafia Island in Tanzania, fishermen go to their farms on the mainland (Rufiji) for several months at time, and leave their wives behind with the remaining family feeling unauthorised to make decisions about whether household members were ‘allowed to take drugs’. For pregnant women, gendered dynamics were also compounded by fear and lack of certainty as to whether it was safe to take drugs during pregnancy. The pressure to need to ‘be pregnant’ can give women a negative opinion of a drug that cannot be taken during pregnancy.

CDDs are well placed to understand these gendered dynamics as they are embedded and come from the communities they serve.28 As such, they could potentially address the social and cultural norms which can determine health outcomes by acting as agents for social change.28 As CDDs may experience the same gender norms and power dynamics as other members of their community, it is important to enhance their critical awareness of these factors and how they have an impact on health. This requires ongoing supportive supervision structures and strategies to enable CDDs to reflect on how they promote gender equity in their work, which ‘coverage improvement’ strategies will be most appropriate in different contexts, including on particularly neglected NTDs such as female genital schistosomiasis.29

Parker and Allen’s30 work on MDA programmes has highlighted the importance of consent and community engagement and how at times community members may feel consent is lacking.30 CDDs are a critical bridge between the community and health programmes.31 They have underused tacit knowledge about the challenges, opportunities and concerns of different community members with respect to MDA, and how these are shaped by gender and other axes of marginality. Creating forums through which CDDs can share their experiences has the potential to strengthen the responsiveness of NTD programmes and ensure that programmes are adaptable to the realities that community members face. Greater involvement in advising health programmes can also lead to the greater recognition of CDDs and support career advancement and progression, which is particularly important for often underpaid and under-recognised women providers. Furthermore, as the majority of CDDs are unpaid, giving them an opportunity to better understand and feed into MDA processes may increase their motivation and sense of job satisfaction.

Lesson 5: We need to bring a critical gender lens to data at all times

Lessons from gender mainstreaming include the need to think critically about data, how it is collected, its quality and what it represents. Collecting and using sex disaggregated data to improve the gender equity and responsiveness of NTD programmes, especially at district and community levels, is important. The WHO introduced sex disaggregated reporting forms in 2009. However, how this disaggregated data is reported, collected and used is not always clear. Disaggregated data are rarely found at the national or global level. It is possible that some of the data collected is sex disaggregated at the community level, but this disaggregation is then lost at national level, meaning that important patterns in terms of gender, age and geography are disguised and cannot be acted on. Additionally, collation and aggregation of sex disaggregated at higher levels of the health system may mask gender inequity which is prevalent at local levels, and at specific to certain communities. Participants at the meeting committed to disaggregating by sex and age as the minimum requirement for programmes. However, this commitment could go further by adding questions to coverage evaluation surveys and data quality assessments to provide insights into gender equity. Qualitative and participatory research can also support with better understanding of how gender influences experiences, access to MDA and strategies to document the tacit knowledge of CDDs.

Tanya Wood from the International Federation of Anti-Leprosy Associations raised an important concern relating to how data are collected. She provided an example of how leprosy data have been disaggregated demonstrating that in some contexts, more men have leprosy than women and that this has been taken at face value in the figures that are reported by WHO and others. She explained that in reality, women were not showing up in the data because of the multiple challenges they face in accessing care and treatment.

While collecting and disaggregating data is important, the ways these data are collected can make certain groups invisible and this is especially problematic when data are collected at health centres rather than within households at the community level.