From across the three sources of data collection, the following key issues were identified:
1) social risk factors and barriers to care; 2) patient pathways to care; 3) resources available identified through social connections mapping; 4) trust in social connections; 5) community health promotion and prevention of NCDs; management. These are described below.
4.1 Social risk factors and barriers to care
Social violence due to the long war and unrest suffered in the country, along with the ongoing disputes among criminal gangs, has strongly affected communities’ health and their ability to secure continuity of care. This social violence has a long history, from the period of military dictatorship (1930-1979), over the civil war (1980-1992) and the social consequences of a neoliberal economic and social policy (1992-2008). This protracted situation of social unrest had an important impact on the mental health status of the Salvadorian population, worsening the management of their chronic condition. Many chronic patients interviewed related their illnesses to stress situations and shocks derived from this situation. More than a real causal relationship, it illustrates the tensions for the poorer layers of the population during that neoliberal period.
They found I had high sugar, but at the beginning, the doctor told me that maybe it was just because of stress, because look, so much that we lived during the war, for 12 years. That is why one has acquired so much harm. Then, I went to consultation and the family doctor told me that these are the consequences of the war. (Patient with DM)
During the interviews in, specially primary health settings (phase III); social violence, unhealthy lifestyles and economic barriers were mention as the main social risk factors for developing an NCD.
Health providers further identified lifestyle factors such as diet as a major barrier to care, highlighting that participant backgrounds and economic situation needs to be considered in order to facilitate healthcare access.
The biggest challenge is that patients need to comply with taking their medication or following other recommendations. Especially when these recommendations have to do with lifestyle, principally with the diet. (General practitioner)
“The economy is the main reason for not changing the diet, they look for the most economical way for their families and here the " pupusas” are very common, all the people here eat them because they are cheap and accessible, most people eat fried meals even if it is so unhealthy.” Health educator.
Patients also emphasized that economic barriers contribute to these risk factors.
It is expensive to maintain a healthy diet. I can’t, and not everyone has everything, we can only buy very little. (Man with hypertension and CKD).
It’s in the primary health care settings where we observed a comprehensive approach to lifestyle behaviors by promoting community-based NCD management that considers the population’s social and economic environment. An example of this was a local radio, set up by a collaboration between the PHC centre of La Palma and the local school, which engages adolescents to promote health eating and other healthy lifestyle behaviour through a weekly program, as reported by on of the nurses of Chalatenanago.
4.2 Patient pathways to NCD care
Given the above challenges, it was important to consider how these issues affect patient and provider experiences of NCD care. There is a clearly reported pathway a chronic patient follows. In the case of hypertension and DM, patients go to primary health care with the onset of symptoms such as fatigue. In some instances, patients may present at the PHC facility because they feel scared due to the ongoing social violence, causing them to have chest pains or even depression.
For me this started because of some problems that the family had with people. The problem was, they told me that they were going to kill a son of mine .... From that I was left with that distress. And from there I got a lot of affliction, I had a lot of sadness with a desire to cry, I had no joy, and a strong pain in my chest. (Patient with hypertension)
Related to CKD, patients present a severe condition of their disease at the moment of diagnosis, hence revealing a big problem of underdiagnosis. Therefore, the hospital (specialized care) is the entry point in many cases.
Several factors may influence in that they are seen at the hospital level, because they have not been followed previously in the first level of care and they go to the hospital when they are already serious, others because of lack of access. (Intermunicipal Coordinator)
Also, CKD patients with a higher socio-economic status reported that they were diagnosed in private facilities as there is still the belief that paying for medicines means they are better. Patients may also receive diagnosis during or because of an emergency, which often happens when public facilities are closed or there are long distances to get to these facilities.
When I have an emergency, I prefer to go to the private clinic of San Salvador because there are no medicines in La Palma [public PHC centre] that can be given as good as in the private one. In the private clinic I do not wait, they attend you at the time you arrive. (Patient with hypertension).
Health promoters play a very important role in identifying patients at risk of a chronic condition.
Our strategy is based on the fact that health promoters are the eyes of the health centre, of everything that happens in the community, they are the first to tell us that there is a person who might suffer from a chronic disease, knowing that, we schedule a visit to go to that patient's home. (Nurse).
Once patients are diagnosed, the follow-up is normally done in the PHC facilities, where they receive their medication and follow-up examinations. For this reason, the health reform reinforced the visits of specialized teams to the communities. The health reform reinforced the visits of specialized teams to the communities to assure a comprehensive approach also in remote areas giving access to gynecolist, paediatrician, psychologist, physiotherapist, nutritionist, health educator, sanitary inspector and family doctor.
“The specialist physicians have programmed approaches to go to the communities, they evaluate the patients and identify those who need to attend a health facility or they leave them in control; in this approach, home visits can also occur and also there is a comprehensive family care visit at their home” (Departmental Coordinator).
However, the referral system still lacks strong coordination, but has been reported to have improved with the health reform, giving patients a more comprehensive response to managing their disease.
As family doctors, when a patient can no longer be given their medication, or a disease is difficult to control, or if there is an emergency, we refer the patient to the hospital. For example, if it is a renal patient, there is a whole area for that, there they are assessed by an internist, and if [the internist] considers that the patient has to continue their follow-up there, the patient stays there. If not, they send us a referral to continue the patient’s follow-up here in PHC, engaging the patient in preventive activities with, for example, the health educator. (Family doctor).
Continuity of care has been reported to have improved and involves a comprehensive system of care that guides and tracks patients over time through a comprehensive array of health services, spanning all levels of intensity of care for NCDs.
The first time I visited the specialized health unit, they requested I stay the whole morning and I saw a lot of health professionals who explained different things about my chronic illness, what I eat, for example. (Woman with DM)
4.3 Available Resources
The social connections mapping exercise highlighted the resources available to, and used by, participants through the three stages of their illness: diagnosis, acute episodes and follow-up. Five workshops were held: three in rural settings and two in urban settings. Within each location, a workshop was conducted in more “organized areas”. These were identified and selected by a key stakeholder, the Ministry of Health. Organized areas were defined as those with higher social capital levels and more presence of social and community organizations such as the social movement, the National Health Forum. Figure 2 shows how the resources were identified and mapped in one of the workshops. Figure 3 shows the resource used for each of the three scenarios: diagnosis, acute episodes and follow-up.
Within the diagnosis scenario, the hospital, as a public institution, is usually the place where people are diagnosed, although, the private sector accounts for high burdens of diagnoses, as many patients reported being diagnosed at their work place (during annual examinations).
The same pattern is followed during acute episodes of the disease, with participants mainly seeking help from the public sector, particularly hospitals. This was reported as a change in the patient behaviour, with the private sector used in cases of emergency.
At the [public] clinic, normal exams are conducted and they do all of that, but they don’t give us what we need most, and this is specifically to do with our individual illnesses. For me, it’s my kidney and all my organs, and they can’t test for this in the clinic. I think a lot of people are dying because of this, because they can’t pay for this [private clinic]. (Man with DM)
This is considered a big achievement of the health reform, as access to remote communities has improved due to the implementation of specialized community teams. (24) However, emergency situations often occur at times of difficult access to hospitals, for example, at nights where there is limited public transport. This may lead to significant indirect costs. Family members were often called upon to assist with financial support, and to accompany the patient to the hospital.
During the follow-up phase the greatest variety of different resources are used. Primary health care play an important role. The public system following the health reform, with extended first line services, including the presence of supporting specialists, reaches out to more remote areas, and patients can ensure a follow-up of their illness in a comprehensive manner. Natural medicine is also widely used, since it is cheap and easy to access and there is a perception that there is no risk in its use. Extensive popular knowledge of these alternative medicines is in evidence.
Overall, in rural communities, private practitioners (mainly naturopaths) were regularly drawn upon during diagnosis and follow-up, due to easy access and more economic options compared to urban areas. Religion is also predominant as an ‘institution’, as gathering in the church was seen to strengthen community cohesion, becoming more predominant as the disease progresses. During follow-up is where there is a greater use of religious resources, revealing the relevance religion has in the management of chronic diseases, particularly for psychosocial aspects.
The most predominant organization resource was the health social movement, the National Health Forum, which played a predominant role in tackling health social inequalities, affecting chronic conditions such as access to clean water. (37)
Finally, family support is evident throughout the progression of the disease and mainly used for transportation and social support.
4.4 Trust in social connections
As shown in Figure 4, there were higher levels of trust in public institutions. This may have been
due to greater trust felt in first levels of care (PHC), relative to trust placed in hospital care. In, addition, access to free medicine following the abolition of fees for both medicines and consultation due to the health reform, may have also constituted a trust factor.
There were varied levels of trust expressed in the private sector. Participants had more confidence in examinations done in private rather than public centres, but there was less trust during follow-up due to economic constraints.
Regarding religion, the participants commonly referenced confidence in God and felt uplifted by the church environment.
I think God gives us help and strength, because a lot of people I know with these illnesses, have gotten very depressed and even suicidal. That’s why I think that being in a group and being in church helps to lift one’s spirits. Because God says that he is here. (Woman with DM)
In our study, we included and compared communities with a strong level of organization and communities that had not yet organized themselves. Participants who belonged to an organized community felt empowered to form local associations. Although overall there was not much trust in other members of the community due to the current situation of violence, however participants from organized communities reported high levels of trust in their communities and believed they could better respond to their health needs.
Thankfully we are part of an organized community, because of this we formed an association. And in that association, we were able to get professional support. So, we had to form our own groups in order to mutually help each other. (Woman with hypertension)
Gender differences were also observed while analysing levels of trust at the family level, with some positing higher levels of trust to female over male family members.
...with men, it’s like they see the worst, they don’t place the same importance on things as women. We [women] are more careful to notice other people’s problems. (Woman with DM)
4.5 Community health promotion and prevention of NCDs
An interesting aspect of our analysis in El Salvador was the high level of organization at the community level. It was reported by staff members that people had gained strong organization levels during the civil war period and therefore there was a strong commitment of people to participate in decision-making. The National Health Forum was born from people of the communities which commenced advocating for the right to healthcare in the early 90s. This community bonds were reinforced due to the need for organized activism for structural change to overcome the current social, economic and political aspects that impact on health.
This perspective implies activist advocacy for comprehensive health policies, in which the structural causes of poverty and inequality are addressed through a whole society approach, linked to an extending network of empowering community activism and organization.
For us, there is strength in counting on social participation, because they are in a way, the guards of the health system…Who better than they to visualize and follow-up, since a lot of the time we are not able to due to work…It is the communities that are organized, or those which the NHF has organized, that participate the most in our programmes, such as vaccinations, or controlling dengue fever and chronic illnesses. In the territories where the NHF is present, the population is very organized. The people know what their obligations are. We collaborate also, but they know that this is a shared responsibility…[empowered communities] know that health is for everyone, it is not just the responsibility of the MoH. It is not just about being cured, but it should be more about prevention. This is where the people of the NHF are helping the most” (Regional Director of Primary Health Care).
In line with the “health in all policies” framework, the community collaborates with the health system by identifying their needs and by participating in the design of strategies to improve the NCD care and follow-up at community level. An example of this was in the region of Bajo Lempa and the management of CKD by involving all community assets. More attention is advocated towards the prevention and early diagnosis of renal insufficiency, linked to pesticide intoxication, the so called chronic interstitial nephritis of agricultural communities (CINAC), in this region the promotion of community peer support groups for NCDs was advocated, where patients can learn from each other, as further described on another study developed by the same research team. (37)