New research study brings together community members, healthcare professionals, and people experiencing NTDs to create a stronger mental health support system in Kasai, DRC.
There is a critical gap in the healthcare system for people with NTDs in the province of Kasai in the Democratic Republic of the Congo (DRC). This area has one of the highest burdens of leprosy, lymphatic filariasis (LF), and onchocerciasis in sub-Saharan Africa. People with NTDs here face socio-economic instability, discrimination, and a weakened healthcare system due to decades of war and conflict. Not only does this create barriers to access within healthcare, but it also contributes to mental health issues for people experiencing NTDs.
This research study was produced in a collaborative effort between The Liverpool School of Tropical Medicine, The Leprosy Mission DRC, and Effect Hope. “Effect Hope was the sole funder of this project,” said Joy Kim, one of the co-researchers on this project from Effect Hope. “Our role was to ensure all of the project activities took place smoothly and on time, handle any logistical challenges, and provide technical support.”
The goal of this study was to better understand the mental health challenges and healthcare gaps experienced by people with NTDs in Kasai. Insights from the research will be used to develop better mental health support and interventions for those affected by NTDs in this area.
The researchers used a photovoice method to gather information. The participants, all of whom had lived with an NTD in Kasai, were given a camera and instructed to take photos that illustrated their perspective of three main themes: stigma, mental wellbeing, and coping strategies.
After they took the photographs, the participants were interviewed about the meaning behind them. They also organized the photos within each category, choosing three to represent each theme, and expanded on their perspective in focus groups.
The impact of pain on self-esteem and finances
The photos revealed how pain and changes in the body caused by NTDs affected participant’s self-esteem. Through photos and interviews, many compared their bodies to objects like rotten fruit and wasted tree trunks.
Some talked about how their disease caused mobility restrictions that limited their ability to access basic needs such as using toilets not adapted for disabilities.
They also expressed that their pain impacted their financial situation. Buying medications like Ibuprofen to help manage their pain put a strain on the finances of many who were already struggling financially.
Isolation, shame, and mental distress due to stigma and discrimination
Based on the accounts from people affected, researchers found that their experience of stigma fell into two categories. Many experienced stigma from external sources, such as acts of violence, rejection, and exclusion. However, many also experienced this stigma internally, such as feeling ashamed and anticipating discrimination before it happened.
Most participants felt isolated from family, friends, and community due to fears of discrimination. Many had been spoken to in derogatory ways, including being referred to as a “sorcerer” or “useless to society.”
Sometimes healthcare professionals spoke in derogatory ways, too. This caused mental distress for participants because it made them feel uncomfortable seeking medical help for fear of discrimination. However, they often had no other options available to them.
NTDs can cause depression, loss of hope, and poverty
This study revealed that many people with NTDs struggle with anxiety and depression due to a loss of hope.
One healthcare professional interviewed for the study said that, in Kasai, people with NTDs are often considered to be dying. Since they are perceived to be at the end of life, there isn’t much motivation within the healthcare system to care for them. These perceptions are part of what contributes to the loss of hope for those with NTDs. It also leads many to avoid seeking treatment or help from healthcare facilities.
Because of this, some people with NTDs turn to drinking alcohol or smoking as a coping mechanism. Some even struggle with self-harm or suicidal thoughts. Additionally, for many, their disease increased their dependency on others to care for them. This also lowered their sense of agency and self-worth.
Men and women can be impacted by NTDs in different ways
This study revealed that societal gender norms affected the ways men and women experienced having an NTD in Kasai. Men worried about their NTD impacting their ability to work and provide for their families. Women worried about the NTD impacting their ability to fulfill their role as a wife and mother.
One female participant took a photo of a pot and plates on the ground. “This pot and plates gives the image of the culinary work of any woman,” she said, describing the image. “This reminds me of what I am no longer able to do as a woman and a mother because of my state of health.”
A male participant took a photo of calabashes filled with wine. “To make this wine, sell it, and make money, you must have physical strength,” he said. “I no longer have the strength to work. I can no longer produce.”
Medical and mental health care options for people with NTDs in Kasai
This study showed that mental health support for those with NTDs in Kasai is rare. There are also limited medical supplies available to care for people with NTDs due to lack of funding.
“The support that we bring to those people is very small, the financing that does not cover what we have to do,” said one healthcare professional interviewed for the study. “We have never organized distribution of kits at the level of the community because what we receive is not sufficient.”
“There is no support service reserved for these people because resources are limited,” said another healthcare professional. “There has never been a mental health intervention.”
However, some compassionate community members and healthcare professionals did what they could to support people with NTDs, including accompanying them to healthcare facilities for treatment and providing informal counselling support.
Based on the information collected through the photos and interviews, the researchers identified four areas of opportunity within the Kasai healthcare system to create better mental health support for people with NTDs:
- Increasing awareness within the community and healthcare system
This could include training for medical professionals and community leaders on the impact of NTDs on mental health.
“Since they go to communities, [health providers] can also teach the notion of mental health in the community and assist those people with mental health, not to stigmatize them,” said one healthcare professional interviewed in the study.
- Improving organizational challenges in the healthcare system
Ensuring healthcare professionals and treatment facilities have the supplies they need, and enough of them, to help people struggling with NTDs is crucial. This includes medications, but also other logistics such as transportation.
- Establishing a community-driven mental health support system
“At the community level, it is necessary to accompany the patients who are in the community,” suggested one health professional. “It is also necessary to create support groups, mentors, people who are already sick, who become autonomous and who can support the people who are weak.”
In addition to peer support groups, another suggestion is to formally establish a mental health coordinator in the community.
“Having a mental health coordination office here is also a recommendation,” said a health professional, “to train someone that can stay here for help in case of any need.”
- Supporting the self-sufficiency of people experiencing NTDs
Many people who have NTDs lose the ability to work due to illness or disability from their illness. Because they can’t work, many beg for money just to survive. Because of this, one community member suggested teaching income-generating skills to help people with NTDs regain independence and, by extension, support their mental health.
Additionally, another community representative suggested continuing to explore better ways to support people with NTDs through accommodation, food, and getting treatment.
Creating change by establishing peer support groups
In response to the information gathered from photos and interviews, peer support groups were established in Kasai as a solution to address participant concerns and support people with NTDs in these six areas:
- Counselling
- Self-care
- Active case finding
- Home visits
- Self-sufficiency
- Recreation
The leaders of these support groups are required to have experience with NTDs themselves and attend training to help them identify mental health struggles, provide basic psychological support, and refer to appropriate healthcare professionals where needed.
Peer support groups help bolster self-esteem, improve overall health, and decrease stigma for those experiencing NTDs. They enrich members socially, teach skills for income generation, and bolster mental wellbeing through recreational activities.
Moving forward, together
This study established the need for increased mental health support for people with NTDs in Kasai.
Currently, there are little to no mental health interventions in place for those struggling with NTDs, even though this study showed that many with NTDs experience mental distress due to their disease. The study also showed that discrimination, even within the healthcare system, blocks many from seeking treatment and can even add to mental health struggles for those with NTDs.
This study also identified areas of opportunity to establish mental health support for people with NTDs, including creating peer support groups and increasing awareness of the issue in the healthcare system and the community.
These suggestions were created in partnership with input from healthcare professionals, community members, and people affected with NTDs in Kasai and is a strong step toward building a stronger healthcare and community system that promotes mental wellbeing for those affected by NTDs.
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