From across the three sources of data collection, the following key issues were analysed:
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, prevention and management of NCDs. 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 on-going disputes among criminal gangs, has strongly affected communities’ health and their ability to secure continuity of care. This social violence has a long history, including a period of military dictatorship (1930-1979), 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, heightening the inability to manage chronic conditions. 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 DMT2)
During the interviews in primary health settings (phase 3), social violence, unhealthy lifestyles and economic barriers were mentioned as the main social risk factors for developing an NCD. Health providers further identified lifestyle factors such as unhealthy diets as a major cause of presenting a chronic condition, highlighting that participant backgrounds and their economic situation need to be considered in order to facilitate access to healthy diets.
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” [toasts made of corn and stuffed with beans, cheese and pork rinds], 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 the high costs of healthy ingredients and water.
It is expensive to maintain a healthy diet. I can’t, and not everyone has everything, we can only buy very little, and the bottled water. (Man with hypertension and CKD).
In PHC settings, we observed a comprehensive approach to lifestyle behaviours by promoting community-based NCD management that considers the population’s social and economic environment. An example of this, as reported by one of the nurses of Chalatenanago, was a weekly local radio programme, set up by collaboration between the PHC centre of La Palma and the local school, which engages with adolescents to promote healthy eating and other healthy lifestyle behaviours.
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. A chronic patient follows a clearly reported pathway. In the case of hypertension and DMT2, patients go to the PHC facility with the onset of symptoms such as fatigue. In some instances, patients may present at the PHC facility with chest pains or depression caused by the anxieties they feel given the on-going social violence.
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)
For CKD patients, underdiagnoses are a major problem,(37) with many only discovering their diagnosis when presenting a severe condition of their disease at the hospital. Therefore, the hospital (specialised care) is the entry point in many cases.
Several factors may influence [why] 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)
In addition, 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, showing that the promotion of community health is an important aspect of strengthening this health system.
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 specialised teams to the communities to assure a comprehensive approach for all, including remote areas, giving access to a gynaecologist, 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).
The referral system still lacks strong coordination within the different levels of care (specialised and primary care), but has been reported to have improved with the health reform,(14,15) 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)
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 setting, a workshop was conducted in an “organised area”. These were identified and selected by a key stakeholder, the MoH. Organised areas were defined as those with higher social capital levels, social cohesion, and more presence of social and community organisations such as the NHF. Figures 2 and 3, respectively, show the identification and mapping of resources during a workshop and the resource used for each of the three scenarios: diagnosis, acute episodes and follow-up.
The hospital, as a public institution, is usually the place where people are first diagnosed. Additionally, public health campaigns account 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 private sector. This was reported as a change in 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 DMT2)
Following the health reform, access to remote communities has improved due to the implementation of specialised community teams. (24) However, emergencies often occur at times of difficult access to hospitals, for example, at night when there is limited public transport. This may lead to significant indirect costs, such as family members often having to be called upon to assist with financial support and to accompany the patient to the hospital.
The greatest variety of resources is used during the follow-up phase, with PHC playing an important role. Since the health reform, the public system, including extended first line services and the presence of supporting specialists, has reached 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 relative ease of 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. A greater use of religious resources occurs during follow-up, revealing the relevance religion has in the management of chronic diseases, particularly for psychosocial aspects.
The most predominant organisational resource was the NHF, which played a predominant role in tackling social and health 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 DMT2)
In our study, we included and compared communities with a strong level of organisation (in terms of social capital and social cohesion) with communities that had not yet organised themselves. Participants who belonged to an organised 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 social violence. However, participants from organised 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 organised 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, prevention and management of NCDs
An interesting aspect of our analysis in El Salvador was the high level of organisation at the community level. It was reported by staff members that people had gained strong organisation levels during the civil war period and therefore there was a strong commitment to participate in decision-making. The NHF was born from people of the communities who commenced advocating for the right to healthcare in the early 90s. These community bonds were reinforced due to the need for organised activism for structural change to overcome the current social, economic and political aspects that impact on health. The NHF is present in 12 of 14 departments of the country.
Their perspective grants 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 organisation.
For us, there is strength in counting on social participation, because they [NHF] are in a way, the guards of the health system…Who better than they to visualise and follow-up, since a lot of the time we are not able to due to work…It is the communities that are organised, or those which the NHF has organised, 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 organised. 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 PHC centre)
In line with the “health in all policies” WHO framework, the community collaborates with the health system by identifying their needs and by participating in the design of strategies to improve NCD care and follow-up at community level. An example of this is in the region of Bajo Lempa where CKD is managed by involving all community assets. More attention is given to the prevention and early diagnosis of renal insufficiency linked to pesticide intoxication, known as chronic interstitial nephritis of agricultural communities (CINAC). In this region, the promotion of community peer support groups for NCDs where patients can learn from each other is advocated, as further described in another study conducted by the same research team. (37)