The case for governments to take mental health integration into NTD programmes seriously
What do you do to support a community where 58 percent of men affected by NTDs and 80 percent of women affected by NTDs are screening positive for extreme depressive disorder? Where 54 percent of these men and 62 percent of these women have anxiety disorders? In any context, this would be a daunting challenge.
This is the situation in Kasai Province, DR Congo, where psychological support is not accessible through government health services. Where conflict exacerbates every problem, and funding and resources are sparse.
The Leprosy Mission’s team in DR Congo have been working with the Liverpool School of Tropical Medicine and Effect Hope to establish not only the extent of the burden (the data above is from their research), but to develop solutions that are workable and effective in Kasai communities.
This project started because there was a real lack of concrete, quantitative data to demonstrate the burden of mental health problems among persons affected by NTDs in DR Congo. Because there was no data to demonstrate the need, people were suffering without support.
In DR Congo, policymakers and public health officials are focused on reducing transmission of NTDs in the country. Whilst this is a laudable and important goal, the sole focus on this particular NTD intervention comes at the expense of other important interventions to manage longer term needs for persons affected.
Although our teams were routinely hearing about and seeing for themselves the cost of the mental health crisis amongst persons affected by NTDs in Congolese communities, they did not have the data to convince decision makers to intervene.
The aim of the project from its outset was to give shape to the crisis in DR Congo and then find solutions together with people affected and policy makers so that people would not have to suffer without support.
However, the hope has always been that the benefits of the project would not only be felt in DR Congo.
Across the world, it has long been acknowledged that there is a serious and common link between NTDs and mental health problems, but, as with DR Congo, evidence that prompts decision makers to action is still emerging. Further, there is limited evidence of how we might solve this problem in a way that is rooted in local contexts.
The project has been framed as ‘participatory action research’. This means understanding the scale of the mental health burden in equitable partnership with persons affected by NTDs and then working together to develop interventions that break down power hierarchies between implementers and recipients and are rooted within and build on community capabilities.
The research teams established the burden of the mental health crisis in Kasai through a survey and through photovoice. Photovoice is a process that allows research participants to share their stories through photographs, using their own words and reflecting on what is happening within their daily lives.
Whilst the research teams were working to establish the nature of the burden of mental health problems within Kasai, interventions were starting to take place. The project’s primary intervention was developing peer support groups through collective participation in photovoice. Through this, persons affected were realising that coming together and supporting each other was within their capacity and useful to their wellbeing.
In a province where mental health support is effectively non-existent, peer support was considered the most realistic option for intervening to care for the mental health of persons affected by NTDs.
The team started this process by training local health workers in basic mental health care. These health workers were then able to train community relay workers and leaders within the peer support groups.
Within these groups, persons affected by NTDs share their experiences and the challenges they have faced. Members of the peer support groups received some training in basic psychosocial support, which gave them an idea of the kind of support their peers might need and supported them to feel more comfortable to talk about their mental wellbeing.
Because the project was developed in partnership with persons affected by NTDs, they made it clear from the outset that their mental wellbeing would struggle to improve if they had worsening ulcers or if they were struggling to feed themselves and their families.
In order to care for their members’ overall wellbeing, the support groups needed to offer more than listening ears. Beyond peer counselling services, these groups provided self-care support and livelihoods support.
Home visits were also conducted, to ensure that people were reached by this intervention whether or not they were able to leave the home easily.
“I used to think about hurting myself somehow, but ever since we started attending meetings with others, I am more comfortable than ever. My brain is at peace.” 35 year old female group participant.
The project was launched through key stakeholders in Kasai Province and the national Ministry of Health. This meant that the interventions were implemented by people who were accustomed to leprosy control and case detection. For them, providing mental health support was almost an entirely new concept.
Some minor interventions had been attempted in the past at the provincial level, but they had not been effective and so the psychosocial consequences of NTDs became neglected. Meanwhile, for those within the national NTDs and leprosy programme, a mental health intervention was entirely new.
However, as the project developed, the stakeholders in Kasai became more aware of the challenges that persons affected by NTDs were facing and the training they received provided them with the confidence that they could make a difference.
Dr Jacob Kadima from TLM Congo presented the initial findings from the project at a national meeting that acts as an annual review for leprosy and TB programmes in DR Congo. Although much of this work was new to them, those in attendance were impressed by what was happening. Having data to hand made all the difference.
One of the things that stands out most about the data from the project is that women affected by NTDs are significantly more affected by mental health problems than men (80 percent vs 58 percent). For Dr Jacob, this was not a surprise.
“In conflict settings like Kasai, it is not uncommon for women to have significant mental health problems. The conflict limits their opportunities to thrive and find lives outside of the home. Even outside of conflict settings in Congo, women face challenges; they are marginalised, customs in the country leave them behind, and they do not have the opportunities that men do.
“It is not a surprise to us that the data shows how much greater the burden of mental health problems is amongst women affected by NTDs”
“Women affected by NTDs often struggle to find marriage partners and people think that a pregnant woman with leprosy will pass this on to her child. In this context, particularly without peer support, it is not a surprise to us that the data shows how much greater the burden of mental health problems is amongst women affected by NTDs. But, whilst we were not surprised, we were relieved to have some data to confirm our suspicions.”
The team behind this project have made a few key conclusions from their work to date. Firstly, they recognise that there will always be a feasibility challenge with this work; there are not enough resources across most of DR Congo to fund psychologists to support persons affected by NTDs (or anyone else). In these contexts, peer support groups are essential.
Another important conclusion is that getting buy-in from national-level policymakers and those working at lower levels e.g. provincial health workers to support the integration of psychosocial support into NTD programmes is essential to support sustainability.
Most importantly, the groups were shown to be effective. Most participants in the groups described how they started to re-engage with their community thanks to these groups; they attended family events, visited the market, and went to church again. They also identified their groups as safe spaces that gave them a sense of belonging, unity, reassurance, and hope.
Community members and health professionals also observed these behavioural changes and perceived a reduction in the experience of stigma and discrimination within the wider community.
Beyond these national and local level conclusions, the Liverpool School of Tropical Medicine, Effect Hope and TLM are going to take these findings and combine them with similar results in Nigeria and Liberia, where similar interventions have been effective through local adaptation. These findings will be shared across the sector, supporting to inform international guidance and understandings on how best to integrate mental health and NTD services.
Article photo credits: Tom Bradley
