Koutiala, Mali.

Koutiala is a city in Sikasso region, Mali. A severe humanitarian crisis has been ongoing across the country since 2018 due to conflict, extreme climatic events, displacement, and high food insecurity, leading to malnutrition. The most affected have been children and women, with high level of poverty across the country [14]. According to UNICEF [15], 4.1 million people were in need of humanitarian assistance due to lack of access to health services, clean water, and schools. Climate change has contributed to the increase of malnutrition, due to erratic rainfall, poor agriculture production, desertification and increment of crop pests [15]. The national prevalence of acute malnutrition is 9%, and the prevalence of stunting in children under 5 years is 27% according to USAID in 2022 [16].

MSF has worked in Koutiala since 2009 in collaboration with the Malian Ministry of Health (MoH), to improve prevention and treatment services, particularly for young children. MSF supports both in-patient and out-patient paediatric malnutrition care services at a reference hospital, and several health facilities.

Rutshuru, DRC.

Rutshuru is in the North Kivu province in the east of the Democratic Republic of Congo. There are two rainy seasons, in which malaria and malnutrition prevalence are higher. The first one is from March to May and the second from September to December, although with climatic change the seasons are becoming more unpredictable [17]. North Kivu is affected by conflict, especially in the eastern regions, along the borders with Rwanda and Uganda. As a consequence, episodes of violence, displacement, and difficulty in accessing health facilities have increased, with a negative effect on the local communities, especially women and young children [18]

In Rutshuru, MSF provides paediatric services and malnutrition care at three hospitals and five health centres since 2005. Based on USAID data (2022), 12% of children under age 5 were affected by severe acute malnutrition (SAM), and 42% by stunting. Malaria, respiratory infections and diarrhoea are also leading causes of morbidity and mortality in young children in this setting [19].

Reflexivity statement.

The authors of this article have different backgrounds, but all have experience in public health research projects. Many authors have a medical/nursing background or global health research expertise. Most of them have clinical or research experience in non-governmental organizations (Medecins Sans Frontiers, Save the Children). However, the place of origin and work vary (Europe, Sub-Saharan Africa, North America). Five co-authors are from DRC, and one is from Mali.

Our experiences in participatory research and decolonial methods influenced the design of this research as well as the type of engagement with the participants on the ground.

Some of the participants worked closely in DRC or Mali with some co-authors, but not with the first or last author of the paper, who were primarily involved in the data collection and analysis. Therefore, the potential for bias is possible, but limited. For the interpretation/discussion of some specific results, for example needs of health workers for improving the diagnosis of bilateral pitting oedema, co-authors may have reflected their own experience informing the final recommendations. However, due to the participatory nature of this research and the close relationship between participants and researchers, any recommendations and final results have been discussed and agreed with the participants to make sure they are context-relevant and in line with the current medical practice.

Illness interpretation.

Health workers described their perspectives regarding the causes of bilateral pitting oedema in the community. All participants, when talking about ‘bilateral pitting oedema’ first mentioned ‘malnutrition’ or ‘nutritional oedema’ more than any other diseases. Participants reported that Kwashiorkor patients were particularly at risk of death. While the underlying causes of this type of malnutrition are still unknown, health workers reported that Kwashiorkor was probably the result of an imbalanced diet, low in proteins, fats and vitamins.

Health staff who had worked in both Mali and DRC highlighted some differences in the two countries, namely that in Mali the patients who accessed MSF facilities were more familiar with nutritional oedema, and that health services were more reachable than in DRC.

Additionally, health workers in Mali and DRC described specific periods of the year during which greater numbers of patients with bilateral pitting oedema accessed MSF health facilities, which they linked to the agricultural period and season prior to harvesting, when food insecurity was higher. Additionally, it was frequently mentioned that malnutrition and bilateral pitting oedema cases were likely to increase during malaria and measles’ peak occurring yearly.

The majority of the health professionals reported that bilateral pitting oedema was a serious issue in both locations with the potential for severe health outcomes for their patients. However, one participant noted that the perceived severity of nutritional oedema among health workers could be overshadowed by the presence of other diseases considered to have higher risk of mortality.

We manage malnutrition, [but] we don’t take it very seriously (Male participant, IDI)

Resource seeking.

High transportation costs, inconvenient geographical locations, inaccessibility of roads in both settings, and insecurity due to armed clashes in DRC were among the barriers listed by the participants to bringing a child to MSF health facilities. Local health workers living in Rutshuru and Koutiala reported that many of their patients described accessing health centres as more expensive than being treated by traditional healers. They added that families accessing their health facilities were worried that MSF hospitals would ask for money to treat the child. According to them, many families, who were treated at MSF hospitals were not aware of the free treatment in MSF health centres, especially in Rutshuru. In fact, in Rutshuru the in-patient paediatric department was run by Ministry of Health’s staff, and there was previously a fee to pay at the admission. According to participants, there was higher awareness regarding MSF in Koutiala:

[...] people are well aware of MSF’s activities and they know that when you go to the hospital, you have access to free care […] we’ll say for certain criteria only (you are referred to MSF centres), and when you arrive at the hospital, there’s a sorting process, and according to the sorting process, you’re referred there (to MSF), but I also know that there are many people who go to the hospital, hoping to be referred to MSF (Male participant, IDI).

Local health workers reported that at the MSF hospitals in Rutshuru and Koutiala children often arrived very sick, reducing chances of successful treatment. They stated that caregivers often reported not feeling comfortable in many health settings because of previous experiences of mistreatment, which contributed to decisions to delay seeking care at the hospital until the child was very sick:

So they don’t believe in what happens at the hospital, often people say that when you arrive at the hospital, they don’t treat you properly, so people still prefer to leave, to be treated by the traditional therapist (Male participant, IDI).

Also, local health workers reported that both Koutiala and Rutshuru have a patriarchal society, in which the father holds the responsibility of decision-maker. However, they noted that the mother was usually the one accompanying the sick child to the health facilities, and generally looking after the child when sick. Thus, participants thought that more involvement of the entire family in the childcare would have a positive impact on child’s health:

And if we manage to involve the parents, which is not only the mothers, especially in our context, here in Mali, decision-making on women is a bit complicated. It’s only the men. But if we manage to approach these men, to discuss with them, to make them understand, to involve them in the care, I think that can help us a lot (Female participant, IDI).

Medical pluralism.

Participants from both sites explained that, when the child was sick, caregivers could access traditional remedies, which included home treatment and the use of traditional healers, and medical treatment, which included the use of pharmacies and health facilities.

During the focus groups, health workers from Mali and DRC agreed that that taking children to traditional healers and administering traditional drugs first could make their recovery more complicated, given that the dosages administered during traditional treatments were unknown by the medical staff. They also explained that children with bilateral pitting oedema were very vulnerable to organ damage, and if the correct diagnosis of oedema was not made, traditional drugs could worsen the situation, leading to higher risk of death:

And then you see with traditional products, we don’t know the dosage. We don’t know the active ingredients of what we are giving. And most of the time, a child who has taken a lot of traditional products is difficult to be saved [...] And if it’s a malnourished child, liver and kidneys are already damaged. […] These children get a lot of poisoning (FGD).

Medical challenges.

Health worker recommendations.

During the FGDs and IDIs, health workers discussed recommendations to improve the outcome of children presenting with bilateral pitting oedema (Table 2). Strengthening prevention and collaboration, standardizing the steps of the diagnosis process, hiring additional and specialized medical staff, and investing in research were found to be essential to improve outcomes of patients presenting with bilateral pitting oedema.

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Table 2. Recommendations agreed by the health workers during the study in mixed focus groups (local health workers from both countries) to be applicable for Mali and DRC context.

https://doi.org/10.1371/journal.pgph.0004125.t002

During the FGDs, particular attention was paid to the strengthening of communication between medical staff and caregivers to improve prevention and health outcomes in patients:

The medical team is too focused on care, and often forgets about the mother. For me, we should put more emphasis on raising the mother’s awareness, explaining to her what illness her child has, and also explaining to her how this type of pathology can be avoided [...] if she sees another child who has the same symptoms, the same problems, so she can explain (to another mother) to be careful, to go to the hospital (Female participant, FGD)

Also, health workers agreed that additional and specialized staff is critical to properly monitor patients presenting with bilateral pitting oedema, particularly Kwashiorkor, whose condition can deteriorate very quickly if not constantly monitored:

Because for me, Kwashiorkor children need special attention, you know, in a care room, for me a Kwashiorkor child, you have to find a space, group them together, do a more special monitoring as if it was in intensive care even if they are not yet in the intensive care charts […]You cannot look after a Kwashiorkor child like any other child. A Kwashiorkor child can take the milk at 2pm, drinking everything, normally, then when you come back at 2.30pm, he can have a sudden cardiac arrest, like this (Male participant, FGD).

Participants working in Rutshuru agreed that more training would have helped to better diagnose patients presenting with bilateral pitting oedema. In Koutiala, most of the staff reported to have sufficient skills to make the diagnosis without needing further education.

Probably we should invest a bit more time to train at the different levels, from the Community health workers to the people that are doing the triage at the entrance of the child, that’s on the paediatrician, that is doing them MUAC, the weight for height and the assessing oedema. And sometimes when the child comes in with, the child has oedema, nobody is really questioning if it’s true or not. So you know in all the different steps of the diagnosis process and the assessment process, people should be properly trained (Female participant, IDI).

Finally, participants agreed that further research is needed to understand the physiopathology, improve the treatment, manage complications, and reduce child mortality in patients presenting with bilateral pitting oedema. They said they use the same treatment for marasmus, which is another type of non-oedematous malnutrition, though this may not be optimal for children with Kwashiorkor.

My feeling is that we kind of gave up trying to understand what Kwashiorkor is. So, it doesn’t sound challenging anymore, you know. There have been, I mean not much research, but many hypotheses […] and none of it was kind of confirmed. So difficult to understand because even children in the same family at different ages they come to the hospital, both with malnutrition, one with Kwashiorkor and one without. […] some children will have Kwashiorkor and you will never be able to understand why, you know (Female participant, IDI).

Research design.

This study has been conceptually designed using participatory approaches, and a decolonising lens and methods. We provided a platform for health workers in various roles to come together and discuss an often-overlooked issue: the complexity of diagnosing and managing nutritional and non-nutritional oedema. This enabled the comparison of diverse perspectives and facilitated consensus on the direction that practice and research should take to improve the lives of children presenting with bilateral pitting oedema. The decolonising approach [26] allowed local health workers to raise their voice, and explain their needs in order to be considered at higher level (headquarter staff is, in fact, often based in high income countries), and their data used for action. Decolonising research, in our work, means empowering health staff based in the Global South, and balance the power between local clinicians and nurses, and headquarter workers.

Research content.

In this work, we summarised and critically appraised the recommendations of the interviewees to improve the understanding, diagnosis and treatment of bilateral pitting oedema, and to tailor on-the-ground actions to the community needs to reduce children mortality.

Health workers identified five areas of improvement at the community and medical level to ameliorate the health outcomes of children presenting with bilateral pitting oedema. First, prevention has been identified from all health workers as key element to reduce, early detect and treat bilateral pitting oedema, increasing the chance of patients’ survival. Working closely with community health workers and community leaders on prevention of malnutrition, including health and nutrition promotion (for example, on Infant and Young Child Feeding- IYCF), will help to: i) prevent malnutrition cases, ii) increase utilization of health facilities, iii) eliminate stigmatization about the bilateral pitting oedema among the most vulnerable [27], and iv) increase the utilization and access of patients to specialized medical centres and hospitals [28]. In parallel, as poverty is an underlying cause of malnutrition, all poverty-reducing interventions are needed to decrease the prevalence of malnutrition and related nutritional oedema over the long-term [29].

Second, collaboration between staff members in the MSF health facilities was found to be essential for the correct diagnosis and treatment of children presenting with bilateral pitting oedema. They highlighted challenges arising from the lack of brainstorming between junior and senior staff, lack of child deaths review, and medical assessment on admission conducted by less experienced health workers. Collaboration has the potential to have a positive effect on patient outcomes [30]. According to a systematic review [31], health workers should first work together to establish roles, tasks and responsibilities prior to caring for patients. More integrated collaboration models which are also patient-centred, and more specialized training for existing staff could reduce the tensions among the team in the best interest of the patient [32,33]. Also, a routine training schedule could help expatriate staff to learn procedures on site and contextualize medical practice in the field.

Third, standardization of practices was considered to be a critical element for the implementation of care in patients with bilateral pitting oedema in Mali and DRC. The participants emphasized that the entire health team should receive adequate training, have access to appropriate tests, and have clearly defined roles to improve the differential diagnosis in patients presenting with bilateral pitting oedema. Participants also highlighted the disagreement among health professionals working both in Mali and DRC about the use of feeding treatments at home (promoting RUTF along with home meals or RUTF alone), which varied according to the person in charge in the nutrition unit. According to the literature, the standardization of the medical practice would, in fact, reduce variations in clinical treatment, by improving the quality of care and decreasing potential errors [34].

Fourth, lack of staff and specialized health professionals in the hospital settings was found to be a major challenge during the diagnosis and care processes of patients with bilateral pitting oedema in both countries. The nurse to patients ratio was not ideal, according to the participants, as it exceed 5 patients per nurse. The low number of medical staff has been documented in literature, especially in middle and high-income countries [35]. According to a recent study, if the number of doctors, and especially nurses, is adequate—the ideal ratio in low to middle income countries is one nurse for four patients in medical and surgical units—many lives could be saved. In addition, this nurse to patients ration was shown to reduce the length of hospitalization, which has the additional benefit of decreasing the cost and resource burden for the hospitals [36]. Also, lack of psychological support for the family was identified as a barrier. Participants reported that often there were no available health workers specialized in psychology to help families in need. A life-threatening illness, which is the case of many patients presenting with bilateral pitting oedema, can cause high levels of stress, both psychologically and physically, for the patient and the family [37]. Psychological support for the families can help during such times and can have a beneficial impact on the patient as the family is often the patient’s primary emotional support. Psychological support for the family in this way also acts as a facilitator for the patient’s recovery as well as protecting the mother-child dyad, which is usually at risk in case of severe malnutrition. According to Babaei and Abolhasani’s study, only the family can strengthen the feeling of love and belonging during the time of sickness, and provide care which is culturally appropriate for his/her sick family member [38]. Intervention such as the psycho-stimulation of severely malnourished children is necessary to ensure better outcomes [39].

Fifth, lack of research about the causes of death in children presenting with bilateral pitting oedema, was considered to be an important limitation for advancing care and improving health outcomes. The participants reported that conducting autopsies could help in identifying causes of death to reinforce the differential diagnosis. Many middle and low-income countries lack nationally representative causes of death data [40–42]. Indirect methods are much less reliable than direct methods, which are critical to establish country priorities (31). Also, research on better diagnostic methods would help to disentangle the causes of bilateral pitting oedema in Kwashiorkor and non-Kwashiorkor cases [43], by improving patient management, and reducing the burden of child deaths.

During the interviews and FGDs, participants discussed about the causes of Kwashiorkor, for which the aetiology remains unclear [44]. Although more research is needed to better understand the physiopathology of nutritional oedema, this work highlights the need of investing in nutritional research and finding ad hoc treatments to reduce mortality for children presenting with bilateral pitting oedema. In practice and in the literature the treatment for Kwashiorkor and marasmus (malnutrition presenting with non-pitting oedema) is the same [45]. However, further research would be useful to better understand if the two different nutritional status’ require different treatments to improve the health outcomes.

This work together with the first quantitative component provide an idea of the trend of Kwashiorkor in Rutshuru and Koutiala, for which estimates were previously unclear, and often missing in the literature [21].

Further clinical recommendations.

Some additional clinical recommendations can be made by looking at our findings.

In terms of the diagnostic process, children presenting with bilateral pitting oedema and other signs of malnutrition (measured through the middle upper arm circumference or weight-for-height z score) should be immediately started on the nutrition treatment, however it is important to evaluate other possible co-morbidities to exclude a differential diagnosis. On the other hand, if the child does not have any other clinical signs of malnutrition rather than the pitting bilateral oedema, the nutritional status should still be closely evaluated as discussed by the participants. Also, the assessment of food security, weight loss, changes in diet pattern and other co-morbidities could indicate the presence of underlying severe micronutrient deficiency needing nutritional treatment [46,47].

In terms of patient management, cares should be tailored to the needs of the child [48]. Children presenting with bilateral oedema should possibly be placed in nearby nursing station and vital signs frequently monitored (every 3 hours) by the medical and nursing staff. The participants reported that children presenting with bilateral oedema can worsen unexpectedly and quickly. Good hygiene practices would also reduce the risk of nosocomial infections [49]. Health workers discussed the assessment of nutritional status and feeding practices during the hospitalization, noting that feeding and hydration should be assessed and ensured in a timely manner, and adequate feeding support measures should be put in practice if needed (e.g., use of nasogastric tube). Breastfeeding should always be supported, and skin-to-skin encouraged to prevent the risk of hypothermia and promote the psychosocial wellbeing of the mother-child dyad [47].

The impact of Kwashiorkor is significant, with a high mortality rate in young children [8]. Therefore, policymakers and researchers should engage more actively in addressing the causes of mortality related to Kwashiorkor and other bilateral pitting oedema pathologies to save the lives of many affected children worldwide.