How can individuals break stigmatised barriers?

Stigma thwarts cooperation and hampers the functioning of organisations. But in public health – where it can destroy lives and livelihoods – its impact is particularly severe

Organisations, both large and small, rely on the wheels of cooperation turning smoothly – particularly when managing complex health services.

In a perfect world, individuals, organisations and state infrastructure communicate freely amid the certainty of shared, fixed goals, and guaranteed resources. But we know that unexpected events, such as COVID, can upend business as usual, causing misunderstandings and dividing allegiances. A smoothly oiled machine can founder as individuals’ motivations and goals diverge.

We studied HIV positive mothers and public health systems to explore how frontline healthcare providers step up when stigma disrupts public health bodies. We found a rich source of information in India, where the number of people living with HIV is the third highest in the world, leaving some mothers at risk of passing on the virus to their unborn babies.

Frontline workers can adapt and compensate for communication and management failures

Women with HIV or AIDS suffer from social stigma, and most infected women come from poor and rural communities. This hostility can have a knock-on effect at an individual and organisational level. Women can be reluctant to be tested or tell their families, and hospital staff can be fearful of infection, with some women refused access to treatment or care.

We looked at how three states attempted to coordinate a campaign to prevent mothers passing HIV on to their unborn children. In all three cases, a central body was charged with a national prevention programme in line with advice from the World Health Organisation. From this study, we hope to understand how stigma can damage coordination of tasks and resources and fracture goals and incentives – and what can be done to combat this.

Speaking to hospital and frontline community health staff (in Tamil Nadu, Orissa and West Bengal) working for non-governmental organisations, and their managers, we wanted to understand how public and private partnerships function in this difficult environment. 

What we discovered reveals the extent to which individuals can work around barriers, prejudice and communication breakdown. This is a necessary response – a mother is going to give birth come what may – and the situation requires immediate action. Through this research, we identified three separate ways in which individuals overcome failures in communication and coordination.

1. Role adaptation

Community workers understand the importance of involving families of HIV-positive mothers-to-be. Healthcare workers can be inventive and quick thinking, for example, posing as a “friend” to the expectant mother when meeting a potentially hostile family. Some district authorities introduced widespread testing of spouses to try to dispel stigma and combat further infection.

2. Social purpose identification

Every child born free of HIV is a victory for health workers – a source of pride. This informal shared goal of saving lives and tackling HIV continues to motivate outreach workers despite poor pay and status. They see their work in a positive light, and this motivates them to go the extra mile.

3. Affective attachment

Our research finds that the stigma of HIV can pose hurdles at an institutional as well as individual level. In less well managed situations, some outreach workers gave extraordinary amounts of time and effort to ensure women were supported. There were examples of workers waiting hours to deliver drugs, or paying the bus fare for a pregnant mother to attend a clinic. They took ownership of the task to near heroic levels to compensate for institutional inadequacies or community hostility. Where good managers were in place, they complemented the efforts of frontline employees.
 

In assessing how healthcare institutions and individuals succeed despite difficulties, we’ve been able to draw some broader conclusions.

By developing and maintaining shared knowledge, shared goals and mutual respect, employees have circumvented barriers thrown up by a hostile environment. Individuals and institutions have been able to compensate for friction and complexity within public and private sector collaboration. Everyone can work toward the same end, equipped with the same awareness of the task in hand and ideally with respect for individual roles.

Community workers understand the importance of involving families of HIV-positive mothers-to-be

While we looked at the stigma attached to HIV, our findings are equally applicable elsewhere, from the difficulties thrown up by the COVID pandemic to the Ukrainian refugee crisis. Frontline workers can adapt and compensate for communication and management failures within their organisations and between different organisations.  

There’s no blueprint for this kind of effort, and nor should there be – you can’t dictate employees’ responses. What we do know is that there aren’t enough hours in the day to tackle the world’s thorniest problems – climate change, infectious disease, poverty – without deep collaboration.

Governments need mechanisms which can bring state, private and non-governmental organisations on board and smooth communications. And the private sector requires individuals who are intrinsically motivated – like India’s community outreach officers – to understand the shared purpose and importance of stepping up to the challenge.

This article draws on findings from "Relational Co-ordination and Stigma at Work: How Frontline Employees Compensate for Failures in Public Health Systems" by Gerard George (Georgetown University), Sankalp Chaturvedi (Imperial College London), Christopher Corbishley (Imperial College London) and Rifat Atun (Harvard University).