Conflicting realities: community vs. stakeholder perspectives

Beatrice Egid and Pavani Pendyala

There is an assumption in much of qualitative research that individuals subjectively construct their own realities based on the way they experience the world. While the role of the researcher is to try and understand these realities, it is hard or impossible to arrive at a definitive knowledge of a particular phenomenon. However, in fields such as global health, which are ‘evidence-based’ and ultimately aim to address problems to improve health and health equity, establishing what is really happening in a situation is essential in order to make changes, and to know where to invest time, effort and resources. In this blog post, we share our experiences of coming into close contact with this methodological challenge while conducting research looking at vector-borne diseases (VBDs) in waste-picking communities in Andhra Pradesh, India.

How the research process exposed differing perspectives

The initial phase of our study focused on three waste-picking communities in the state, and sought to explore perceptions, behaviours and other contextual factors relating to VBDs. We utilised qualitative and participatory methods to try and understand the lived experiences of waste-pickers and enable them to highlight their priorities and concerns from their own perspectives. Overarching themes raised by participants included poor coverage of prevention and control interventions in their communities (such as bed nets,  insecticide spraying and environmental management) and lack of access to health services for VBD diagnosis and treatment. Some of the reported reasons for this were living in isolated, undocumented settlements, long travel distances and times required to reach health facilities, and discrimination from health workers when trying to access health services.

When we began the second phase of this study – engaging with stakeholders involved in VBD prevention and control to understand how relevant policies are implemented – our expectations and assumptions were shaped by the conversations we had had with the waste-picking communities. We had taken what they had told us as the ‘truth’. We were focused on finding out more about the barriers to reaching marginalised waste-picking communities with interventions and health services, and why they were not being provided with the basic services they were entitled to. Instead, it quickly emerged that the picture was far more complicated and unclear than we had thought, and what we began to hear from stakeholders often directly contradicted what the communities had told us.

Examples of conflicting realities

One example of this emerged when discussing the utilisation of health facilities by waste-pickers living at a site known as the ‘dump yard’. We carried out a participatory mapping activity where participants drew maps of their communities, highlighting features such as water access points and mosquito hotspots as well as the location of their nearest shops, schools and health facilities. When prompted to mark their nearest health care facility on the map, participants located the government hospital, which is 16km away, discussing how travel to this hospital was costly, time consuming and tiring.

However, when we engaged with the health workers responsible for the dump yard locality during the second part of the study, we found that there was a primary health care (PHC) centre only 2km away from the community. This mismatch puzzled us – had there been a miscommunication during the mapping activity? Were the waste-pickers unaware that the closer PHC centre existed? Did they know it was there, but other factors – such as limited service availability or discrimination from health workers – were preventing them from using that particular centre?

In Vambay colony, a resettlement colony where waste-pickers who used to live in informal shelters now live in government-built housing, another example of seemingly conflicting realities arose. Despite policies which state that community health workers (known in India as Accredited Social Health Activists or ‘ASHAs’) are supposed to visit communities every week to conduct fever surveys and activities as part of the ‘Friday Dry Day’ campaign for mosquito control, Vambay colony waste-pickers told us that ‘ASHAs come once in a few months, while malaria workers come very rarely’.  

However, when we spoke to the district malaria officer who oversees Vambay Colony, he assured us that all policies are implemented as intended and that ASHAs consistently do their visits every week. We also directly observed the activities of the Friday Dry Day campaign taking place in Vambay Colony, but it was hard to ascertain how genuinely routine this is and how much the local health systems actors were presenting a polished version to give a positive impression to us as ‘outsiders’.

Another layer of information was added when we spoke to the ASHAs from Vambay colony. We heard that ASHAs face very poor treatment, sometimes even abuse, from community members – according to ASHAs, community members don’t want to listen to the health information that they attempt to share and use ASHAs to vent their frustrations about their poor living conditions. ASHAs perceived that part of the lack of status and respect they receive is because they are women, highlighting a gender dimension that we had not previously considered when thinking about waste-pickers’ interactions with the health system.

In our discussions with health workers and health officials, we also found that their perceptions of waste-pickers did not line up with the realities we observed on the ground. On the one hand, health officials were dismissive of waste-pickers and their struggles. They overgeneralised that waste-pickers are all mobile, migratory populations, and that there is no point in investing resources or providing services to them because they will just move on. This very much contradicts the fact that some of the waste-picking communities we work with have lived in the same location for over 10 years. In one instance, we had to take local health workers to a waste-picking settlement because they were unaware that a settlement even existed there, highlighting the extent to which many waste-pickers live undocumented lives on the margins of Indian society. Other officials had the opposite view and questioned why we were even working with waste-pickers, suggesting that as a group, waste-pickers are not very marginalised at all and have entirely adequate living conditions and access to services.  

The importance of observation

These are just some of the examples of the different perspectives we encountered when trying to understand the VBD prevention and control situation from the standpoint of waste-picking communities and other health systems stakeholders. There are many reasons why views on these issues can be so different; people may have hidden agendas, they might be protecting their reputations, there could be overt or covert prejudices at play as well as breakdowns in communication. It made us reflect on the importance of observation and what the benefits might have been of taking a more ethnographic approach in this study. – There are some things that you’ll only be able to understand by being physically present in a place, and looking directly at what is happening, over an extended period of time.

Next steps for the research

In the next stage of our work, we hope to bring the different groups together to discuss the findings from this research and explore potential solutions for better protecting waste-picking communities against VBDs in a collaborative, participatory way – it will be interesting, and no doubt challenging, to navigate the conflicting realities in this space.

We are grateful to all of community members and stakeholders who gave their time and shared their insights in this study.  

Image credit: Beatrice Egid