One of the main effects of skin neglected tropical diseases (NTDs) on individuals, alongside direct effects on health, is that of stigmatisation. SHARP scientists conducted research, published in PLOS Neglected Tropical Diseases, in two central districts in Ghana and demonstrated how stigma impacts individuals with Yaws and Buruli ulcer differently, highlighting disease-specific nuances and how stigma varies by age group.

Skin NTDs, by their nature, attract stigmatisation. They are often visually apparent and are regularly nested within negative cultural and societal perceptions and beliefs. 

While the World Health Organization (WHO) has issued a call for integrated disease management of skin NTDs, there isn’t an abundance of research on the particulars of how stigma affects different individuals, and different types of skin NTDs.

SHARP has found that stigma experiences had notable negative consequences on psychosocial well-being, schooling, and social relations, particularly for individuals affected by Buruli ulcer, and in a more direct way for younger study participants.

Dr Yaw Amoako, Senior Specialist Infectious Diseases Physician and Research Scientist at KCCR said, "Our work on stigma provides evidence on the interplay and nuances between stigma experiences, effects and coping strategies employed by people affected with different skin NTDs.

“Our evidence on how stigma may affect people of differing age groups is crucial to tailor context-specific intervention packages for people affected by skin NTDs."

Defining stigma

Much modern research on stigma has roots in Goffman’s treatise on stigma. Goffman defines stigma as the reaction to an ‘undesired differentness from what we had anticipated’.  It’s how a perception (either from themself or from others) of an individual differs from societal norms in a negative way.

To fully understand this phenomenon, SHARP researchers broke their study of stigma down into different parts. This includes macro stigma, micro stigma, the effects of stigmatisation, and coping strategies used by individuals. The framework for this semi-structured interview format is available online.

Macro stigma is what likely first springs to mind when stigma is discussed. It is what you see when you take a broad look at society and includes actions such as teasing, avoidance, or exclusion of affected individuals by their peers. Micro stigma, on the other hand, focuses on the individual and includes self-isolation, and how an individual perceives others’ views of them.

A novel approach

Ideally, healthcare systems need to be adaptable to the specific needs of individuals. A successful intervention, therefore, must be informed by these nuances.

SHARP’s study provides two important insights. Firstly, differences between yaws and Buruli ulcer. For example, yaws lesions tend to be smaller and less disfiguring than BU ulcers and so induce less stigma and be socially acceptable. This logic is supported by the finding that non-ulcerated forms of BU were associated with less stigma than large ulcers.

Secondly, the study looks closely at how age affects stigma. Older participants and caregivers mainly discussed the pain of dealing with public staring, and more subtle experiences than younger participants.

“People can stare at me because I think they wonder why such an old person like me has a bandage on her leg. Especially, when I walk around with my stick, I bow down my head, they can stare at you for such a long time” - 60-year-old female, formerly affected with BU.

On the other hand, younger participants shared more direct experiences of stigma, such as teasing and name-calling.

“…when I leave it [ulcer] open without dressing it, some people will see me and say, [referring to the ulcer]  look at the torch … it made me feel very sad, there were even times that I cry when they say that.

“Before I had BU, my classmates were close to me, but after I had the condition, they were afraid that they will get infected if they come closer to me. When I go to school, all the pupils do not want to get closer to me” - 11-year-old female, formerly affected with BU

Hearing the experiences of young people was particularly revealing, as exclusionary behaviour was enacted not only by other students, but by some teachers and school food vendors too.

Learning this is important, and feeds into SHARP’s intervention development. If some teachers are perpetuating stigma through ignorance of these diseases, they must be included in the development of interventions. As teachers are widely regarded as champions of the community, it is vital that they do not become agents of stigma.

A deeper understanding of stigma, and its effect on individuals, is integral to creating a robust and effective intervention that considers the intersection of different patient’s needs.

Read the full publication

Neglected Tropical Diseases (NTDs) are diseases that are largely absent from the global health agenda and often result in stigma and social exclusion. Yaws, Buruli Ulcer, and Leprosy are examples of skin NTDs that the Skin Health Africa Research Programme (SHARP) research, and all three are associated with physical disability, psychological distress, financial hardship, and social isolation. These diseases are caused by bacterial infection of the skin and surrounding tissues, but while effective cures exist, systemic and social barriers can prevent the access to care that affected individuals need.

In 2021, the Ghana Health Service updated its Neglected Tropical Disease (NTD) Masterplan. This initiative from the Ghana Health Service promotes integration of previously disease-specific, centralised programmes within regular primary healthcare services. Implementing this new style of programming to manage NTDs of the skin is complicated and requires tailoring to local contexts. 

To support this, researchers from SHARP have conducted extensive research with community members in Atwima Mponua District in Ghana’s Ashanti Region to explore people’s routes into and through care systems with the goal of implementing effective interventions to help management of skin NTDs. This work has now been published in PLOS Global Public Health for both formative research and intervention development.

Dr Jennifer Palmer, one of the study’s co-authors from LSHTM noted, “To date, investment in skin NTDs in Ghana has been focused in other areas of the country, while this really rural district, Atwima Mponua, has not benefited from any specific skin NTDs programming. This lack of investment was very evident once we began engaging with health workers.”

Understanding the problem

The team sought to investigate the local health system’s readiness to provide care, as well as the local community’s perceptions and experiences of skin NTDs and services. In doing so, SHARP was able to uncover what existing good practices there are that can be preserved and built on, as well as what needs to change.

To do this, SHARP’s study brought together diverse skillsets from The London School of Hygiene & Tropical Medicine, Kumasi Centre for Collaborative Research in Tropical Medicine, and The Noguchi Memorial Institute for Medical Research. Together, they used a variety of techniques from open-ended interviews to more structured enquiries about health facilities to inform on possible interventions and understand common skin NTD care-seeking practices in the district.

The team took a holistic bottom-up approach involving group discussions with community members, plentiful and varied stakeholder meetings, and engaging with health workers. The aim was to not only understand what strategies are employed to detect skin NTD cases, and their understanding of stigma, but also how affected people and communities use the health system within a context of plural medicine.  Expanding on this, SHARP have also conducted an in-depth study of skin NTD stigma, published in PLOS Neglected Tropical Diseases, and we will be sharing an article delving deeper into the topic on our website soon.

Prof. Dorothy Yeboah-Manu, Director of the Noguchi Memorial Institute for Medical Research said, “Our initial research in the Atwima Mponua District of Ghana provided context about the burden of skin NTDs and people’s lived experiences.

“Engagement helped us to re-orient our initial ideas to align with the needs of the people and to start developing a new decentralised skin health care model."

Developing the intervention

Initial research made it clear that there was a lack of previous skin NTDs programming investment in district health facilities. Key health workers described not really knowing how to manage skin NTDs and simply referred people who might need care to hospitals outside the district. This meant a key task for SHARP was to break down diagnostic and treatment processes for primary healthcare level implementation.

Using yaws as an example, it is treatable with a single dose of azithromycin, commonly available in frontline facilities and diagnosable with the same rapid test used for syphilis screening. With all the tools for effective treatment already there, the next step is working with health authorities and facility managers to communicate that these diagnostics and medicines can be used for this purpose, and training frontline staff to recognise the signs of yaws to know when to use them.

Another example, for Buruli ulcer, is that there was no systematic way to send samples for testing at regional labs. Instead, health workers used personal connections with lab staff at KCCR for sample testing. It therefore made sense that the intervention included formalising the sample testing pathway, pre-positioning necessary supplies, and expanding existing WhatsApp groups to facilitate sample transportation.

In co-development workshops, stakeholders agreed that addressing skin conditions and wounds comprehensively, rather than focusing solely on skin NTDs, would be more effective. This broader focus on skin health was seen as more acceptable to the population, likely to encourage timely care-seeking behaviour, and could offer an efficient method for improving overall health and strengthening health service delivery.

The co-development process also facilitated the identification of practical solutions that considered local contexts and resources. For example, a training and support package for health worker supervision of home-based care for some wounds was introduced to build on an existing practice of home management. Government stakeholders also prioritised a strategy that would not rely on external funding, emphasising the importance of sustainability and local ownership. This participatory approach ensured that the proposed strategy could be feasibly implemented by the district health management team within the study district and had the potential for scalability if successful.

By engaging diverse perspectives, the co-development workshops promoted a more inclusive and well-rounded strategy, enhancing the likelihood of its success and sustainability in creating impactful change for people suffering with skin NTDs.

On the first World NTD Day, Steve Walker presented about SHARP at an event organized by the London Centre for Neglected Tropical Disease Research (LCNTDR). The gathering included more than 145 attendees and a keynote address by Catherine West, a member of parliament and chair of the All-Party Parliamentary Group for Malaria and NTDs.

Read more about the World NTD Day. 

The London School of Hygiene & Tropical Medicine (LSHTM) is to co-lead a major new project to identify the best ways to improve the diagnosis, treatment and quality of life of people with neglected tropical diseases (NTDs) of the skin.

Read more about the £5 million project. 

The SHARP team held highly productive meetings in Addis Ababa, Ethiopia on 2-3 December and in Accra, Ghana on 5-6 December, 2019 to kick off the research programme. Members of the LSHTM team first joined researchers from AHRI and Addis Ababa University for a two-day meeting in Addis before flying to Accra for a second two-day meeting with researchers from KNUST/KCCR and the Noguchi Memorial Institute at the University of Ghana. While some members of the team are longstanding collaborators, these face-to-face meetings also allowed other members of the team to meet one another for the first time. Presentations were given on all aspects of the research programme and plans agreed for how to take the research forwards. External stakeholders participated in both meetings and provided valuable guidance on how to ensure that the research programme produces positive change for individuals and communities affected by neglected tropical diseases of the skin.