Results from the first research study to examine depression, anxiety, stigma, and quality of life for people with skin NTDs in the Democratic Republic of Congo.
How do Neglected Tropical Diseases (NTDs) affect mental health? It is known that isolation, stigma, and the financial impact of having an NTD can decrease mental wellbeing. But how widespread are depression and anxiety among people impacted by NTDs? What are the contributing factors? And what does effective mental health intervention look like for those experiencing NTDs?
Currently, there isn’t much research available about the relationship between NTDs and mental health. This study, produced in collaboration with The Liverpool School of Tropical Medicine, The Leprosy Mission DRC, and Effect Hope, is a step toward bridging that knowledge gap.
“NTDs are not just diseases that affect physical health. They also affect mental health and quality of life,” said Joy Kim, a co-researcher on this project from Effect Hope. “This is why we need to find cases early and provide treatment effectively so that the effects of NTDs do not linger in people for a prolonged period of time.”
This is the first research study to examine the relationship between depression, anxiety, stigma, and quality of life for people experiencing lymphatic filariasis (LF), Buruli Ulcer (BU), onchocerciasis and leprosy in the Democratic Republic of the Congo (DRC). All these skin NTDs are endemic in the province of Kasai, DRC, where this research took place. Over one hundred people in Kasai participated in the study and all of them had experienced at least one of these four skin NTDs.
The results of this study are important because they can be used to inform the development of more effective mental health treatments, evaluations, and services for people impacted by NTDs.
Results: Internalized stigma
Stigma about NTDs doesn’t exclusively come from external sources like community members or relatives. Many people with NTDs internalize these ideas, which reinforces stigma and affects self-esteem.
Responses from this study revealed how people experiencing NTDs often view themselves:
- 85.4% of the participants felt embarrassed
- 72% felt unclean
- 67% felt like a bad person
- 69.5% felt NTD patients like themselves were a nuisance
- 68.6% felt that they were disgusting
Although the survey showed that the participants experienced high levels of stigma in general, the highest scores emerged in the area of internalized stigma.
Results: Depression and anxiety
Compared to the information available about the general population in Kasai, the scores on this survey show that depression is significantly higher among those with NTDs than the rest of the population.
Based on the survey responses:
- 80% of female participants and 58.3% of male participants screened positive for major depressive disorder.
- 62.2% of female participants and 54.8% of male participants had symptoms of generalized anxiety disorder.
This study found that being female, experiencing stigma, and having a low physical quality of life were risk factors for depression.
Age and physical quality of life contributed to symptoms of anxiety. However, men and women also experienced anxiety from different sources.
For men, having a disability strongly contributed to their anxiety. Women, on the other hand, experienced anxiety regardless of disability. For them, anxiety was more associated with aspects of their environment such as personal safety, financial security, and access to health services.
‘Diseases of poverty’ and post- conflict areas
NTDs are often called “diseases of poverty’ because people experiencing them are usually from poor and marginalized areas of low- and middle-income countries. Gender inequality, stigma, and political conflict are also often found in these areas.
Kasai province, DRC, is no exception to this. It is a post-conflict zone with a history of socio-economic instability. Living in the stress and unpredictability of this environment can impact mental health, too. This context is important to consider when examining what factors may cause anxiety and depression for people with NTDs living in this area.
Looking to the future
The researchers concluded that the relationship between mental health and NTDs is complex. However, mental health care is crucial to continue to develop for those impacted by NTDs in Kasai, as experiences of depression and anxiety are particularly high within this group.
This study is a step toward understanding how to effectively address mental health concerns in people with NTDs, but there is still work to be done. “Recent studies on mental health and NTDs showed that living with NTDs could lead to poor mental health in some people,” said Joy. “However, there is still so much that we need to learn in terms of how we could help these people within the limitations that they face.”
Ultimately, though, Joy says that research like this provides important information that creates real change, from designing new interventions, advocating on a national and global level, and sharing knowledge with other researchers and organizations. It creates a foundation for bringing tangible life change, and hope, for people with NTDs.
Do you want to help us fund more research efforts like this? Your support allows us to continue this important work and provide the most effective care for people struggling with NTDs. Learn more and make a gift at effecthope.org/donate
