Vidal et al. BMC Health Services Research (2020) 20:474 https://doi.org/10.1186/s12913-020-05249-8 RESEARCH ARTICLE Open Access Community and health staff perceptions on non-communicable disease management in El Salvador’s health system: a qualitative study Nicole Vidal1, Montserrat León-García1,2* , Marta Jiménez1, Keven Bermúdez1 and Pol De Vos1,3 Abstract Background: Non-communicable Diseases (NCDs) are the leading cause of global mortality and disability with a rising burden in low- and middle-income countries. Their multifactorial aetiology, and their requirement of long-term care, implies the need for comprehensive approaches. From 2009, the Ministry of Health (MoH) in El Salvador has developed a national public health system based on comprehensive primary health care. This study aims to describe the different stakeholders’ perceptions about the management of NCDs along the pathways of care in this health system. Methods: During three fieldwork periods in 2018, three complementary qualitative data collection methods were deployed and conducted in settings with high prevalence of NCDs within El Salvador. First, illness narrative methodology was used to document the life histories of people living with a chronic disease and being treated in second and third level health facilities. Second, through social mapping, support resources that NCD patients used throughout the process of their illness within the same settings were analysed. Third, semi-structured interviews were conducted in the same locations, with both chronic patients and health personnel working at different levels of the primary health care setting. Participants were recruited through purposive and snowball sampling, and a deductive approach was implemented for coding during the analysis phase. After grouping codes into potential themes, a thematic framework was developed using a reflexive approach and following triangulation of the data. Results: This innovative approach of combining three well-defined qualitative methods identified key implications for the implementation of a comprehensive approach to NCD management in resource-poor settings. The following elements are identified: 1) social risk factors and barriers to care; 2) patient pathways to NCD care; 3) available resources identified through social connections mapping; 4) trust in social connections; and 5) community health promotion and NCD prevention management. (Continued on next page) * Correspondence: monselg8@gmail.com This work was conducted with funding from the NIHR Research Unit on Health in Situations of Fragility, through the NIHR Global Health Research Programme 16/136/100. 1 Institute for Global Health and Development, Queen Margaret University, Edinburgh, UK 2 Biomedical Research Institute Sant Pau (IIBSant Pau), Iberoamerican Cochrane Centre, Universidad Autónoma de Barcelona, Barcelona, Spain Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. 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BMC Health Services Research (2020) 20:474 Page 2 of 14 (Continued from previous page) Conclusions: The Salvadoran public health system has been able to strengthen its comprehensive approach to NCDs, combining a clinical approach – including long-term follow-up – with a preventive community-based strategy. The structural collaboration between the health system and the (self-) organised community has been essential for identifying failings, discuss tensions and work out adapted solutions. Keywords: Non-communicable diseases, Community health, El Salvador, Qualitative methods Background NCD care. For this, three complementary qualitative ap- Non-communicable diseases (NCDs) are a major health proaches were combined and conducted at different priority in low- and middle-income countries (LMICs) [1]. levels of the health system. At the hospital level, we elic- In 2016, over three quarters of NCD deaths (31.5 million) ited narratives of patients with a long NCD history on took place in these countries, with nearly half of these their illness experiences and health seeking. In communi- deaths occurring before the age of 70 [2]. Though largely ties, we mapped health care resources reported by patients preventable, these illnesses are the leading cause of global and how these were used. Within primary health services, mortality and disability, and have complex social, eco- we examined the experiences of both patients and PHC nomic and environmental aetiologies [3, 4]. The burden providers in the diagnosis and management of NCDs. This created by NCDs undermines individual and family well- study is in line with other studies reporting on resource- being and hampers social and economic development, scarce countries. During a trial in Cuba for instance, Stein with a particular threat to vulnerable populations [5]. and Susser [9] had the opportunity to observe the Cuban In El Salvador, NCDs are a leading cause of early death health system whilst undertaking a consultancy for the among the adult population. Lifestyle behaviours such as WHO. They found that post-revolutionary Cuba had low consumption of fruit, vegetables and water, exces- placed a high priority on health, and aimed to create a sive consumption of saturated fats and sugary drinks, health service that is comprehensive in scope and content, but also exposure to agrochemicals, are the main risk in population covered, and in organisational forms and factors and are directly linked to social and structural levels of specialisation. They highlight that their achieve- barriers. During the period of 2011–2015, the Ministry ments cannot be understood without an appreciation of of Health (MoH) recorded 48,554 NCD deaths, with car- the social and political context within which they oc- diovascular diseases accounting for 12.0% of the total curred. Furthermore, community-based NCD interven- deaths registered nationwide. This is followed by chronic tions have been shown to be effective in the management kidney disease (CKD) at 6.3%, cancer at 5.4%, and dia- of NCDs in developing countries [10]. Their study reveals betes mellitus type 2 (DMT2) at 3.0% [6] Though the how programmes should be planned, run and evaluated World Health Organisation (WHO) does not consider according to clear principles and rules, and how they CKD to be part of the NCD group, it was included in should collaborate with all sectors of the community while this study due to its high prevalence in the country. maintaining close contact with the national authorities Since 2009 – within a context of high levels of poverty [10]. This is a novel study as it describes how NCDs are and social violence – the Salvadoran government devel- managed in a low-resource setting by taking into account oped a strong primary health care (PHC) policy, increas- not only a comprehensive health system approach but also ing access to care, with emphasis on remote populations the social, economic and political environment that im- [7]. In this context, the current study explores the differ- pact on NCD care, thereby including the communities in ent stakeholders’ perceptions of the management of their own healthcare management. NCDs along the pathways of care in this health system. El Salvador, the smallest country in Central America, Our hypothesis is that a well-structured and sufficiently has suffered several periods of armed conflict during its resourced PHC system can ensure adequate pathways history. The twentieth century alone included a military for diagnosis, care and long-term treatment for people dictatorship from the early 1930s to 1979, and a civil living with NCDs. war from 1980 to 1992, during which 75,000 civilians Due to the high burden of NCDs, there is a growing were killed. A long and complex process led to a peace interest in effective strategies to address complex com- agreement in 1992 and the transition to formal democ- munity health issues, especially when health systems face racy. In this period, the Farabundo Marti National Liber- significant resource constraints [8]. Hence, this study ation Front (FMLN), a leftist guerrilla organisation, also describes the extent to which an intensive coalition became a political party, which later played a key role in between the public health care system and an organised the development of a comprehensive health reform. community can support a comprehensive approach to From 1992 until 2008, neoliberal governments ruled the Vidal et al. BMC Health Services Research (2020) 20:474 Page 3 of 14 country. This period saw structural neglect of the public prevention and control of NCDs recommended by the health system accompanying health sector privatisation, WHO Global Action Plan of NCDs 2013–2020 [20]. further developing an already dramatically socially de- It addressed three aims: first, the development of pro- pressed country [11]. grammes for NCD management, aiming at prompt pre- Currently, the war between gangs (“maras”) among vention and effective treatment, pursuing an efficient the young population remains a serious social problem, system of early diagnosis, and the development of educa- leading to displacements and thousands of deaths every tional programmes; second, the coordination of activities year. The United Nations (UN) has classified El Salvador with other public institutions and with community orga- as one of the deadliest countries in the world outside of nisations for the prevention and control of NCDs, aim- a war zone, with more than 108 homicides per 100,000 ing at a comprehensive and multidisciplinary national inhabitants in 2015. Young people are the most affected programme; and third, multi-sectoral interventions with by violence: more than half of the victims of homicide in broad social participation to reduce NCD morbidity and El Salvador, Guatemala and Honduras in 2015 were mortality. Hence, our study also describes the role that under the age of 30. El Salvador continues to have one social participation played in the implementation of of the highest murder rates in the world with 3605 ho- these proposals, and the lessons for structured processes micides per year in 2017; 429 of which were femicides of social engagement with care and prevention of NCDs [12, 13]. From 2009 until 2018, the FMLN played an im- in settings of fragility. portant role in the government. The right to health was The overall rationale of using these three well-defined core to their political programme. The new MoH em- qualitative methods at the hospital, primary health care braced and further developed community participation and community levels was to obtain an in-depth under- in the preparation, development and management of the standing of NCD management in El Salvador, along the health reform [14, 15]. pathway of care in order to identify key implications for Over the last decade, El Salvador has developed a strong the implementation of a comprehensive approach to integrated public health system, in which organised social NCDs in resource-poor settings. participation – defined and implemented as a structured This study relates to other global health research con- democratic space for the accountability of health care in- ducted under the auspices of the NIHR Research Unit stitutions – played an essential role in building trust be- on Health in Fragility (RUHF), at the Institute for Global tween the population and the public health system [14]. Health and Development at Queen Margaret University The Salvadorian approach builds on the extensive experi- (QMU), emphasising strengthening the provision of ence of the People’s Health Movement and shows how quality care for NCDs and mental health in fragile set- organised communities can support – or even accelerate tings including Syrian refugees and host communities in – the implementation of comprehensive approaches to Lebanon and fragile communities in Sierra Leone, and community health. The struggle for accessible health care El Salvador. has always been part of a broader movement for health equity and social change [16]. Moreover, health providers Methodology play a strong supporting role in strengthening people’s Study setting empowerment [17]. Opportunities for this depend on the This study was conducted in two urban and five rural lo- context of national health policies and existing levels of cations across five departments of El Salvador: the de- community organisation or involvement. In El Salvador, partments of San Salvador and San Miguel (phases 1 the National Health Forum (NHF), a broad national and 2), Usulután (phase 2), and Chalatenango, Morazán movement of organised civil society, strongly supported and Bajo Lempa, which is also located in Usulután the rollout of the health reform, encouraging community (phase 3). The health facilities visited, which were lo- participation at all levels. cated in the central, oriental and metropolitan regions, Through its empowering strategies and active mobil- were selected to represent variation in size of health in- isation, the NHF aimed to strengthen the participation frastructure, population served, geographical characteris- of community leaders in the co-management and con- tics, and prevalence of chronic conditions (Table 1). trol over health policies, practices and services. The Access to data collection sites was facilitated by mem- movement also mobilised in support of the health re- bers of the MoH, social movement members, and med- form’s efforts towards universal access, universal health ical staff from the health facilities where data were coverage, and the pursuit of equity [18]. collected. Within this context, the MoH launched its “Multi-sec- toral National Strategic Plan towards the Comprehensive Study design Management of Non-Communicable Diseases in El Sal- Along with document review, this study used three com- vador” [19]. The plan implemented interventions for the plementary qualitative methods over three stages of data Vidal et al. BMC Health Services Research (2020) 20:474 Page 4 of 14 Table 1 Prevalence of chronic conditions in El Salvador Diabetes mellitus (DM) Hypertension (HBP) Chronic kidney disease (CKD) NATIONAL LEVEL 487,875 1,446,381 459,114 REGION Occidental (Ahuachapán, Santa Ana, Sonsonate) 86,524 296,275 74,181 Central (Chalatenangoa, La Libertad) 52,274 141,189 23,634 Paracentral (Cuscatlán, La Paz, Cabañas, San Vicente) 53,799 180,519 82,133 Oriental (Usulutána, San Miguela, Morazána, La Unión) 101,084 297,210 150,990 Metropolitana (San Salvadora) 194,194 531,187 128,176 SEX Male 179,708 604,184 283,905 Female 308,167 842,196 175,210 a Regions where health facilities are located collection to give voice to participants and gain an in- Data collection depth understanding of patient and provider experiences Data were collected to investigate the resources available related to NCD care: for managing NCDs at two levels of care: specialised and primary health care (including at the community level). 1) Illness narratives of patients with chronic kidney Fieldwork took place over three respective phases, in disease (CKD) and Diabetes Mellitus type 2 November 2017, March 2018 and June 2018. (DMT2) developed through in-depth interviews with patients in both national and regional public Patient illness narratives using in-depth interviews hospitals. The aim of using this method was to gain Illness narratives are a useful means to access patients’ understanding of the social risk factors, barriers to perspectives on illness. They provide a way to gain an care and patient pathways to NCD care. in-depth understanding of the pathways of care and 2) Mapping social connections of NCD patients with treatment of people living with NCDs, taking the socio- the aim to obtain an insight into patients’ social cultural and political context into account [22]. The re- networks. For this, an adapted version of a search team decided to perform the illness narratives participatory tool [21] was used. The original tool, over the first phase of data collection as they raised designed to map social relationships in questions and problems related to NCD management, humanitarian contexts to gain an understanding of which could be further investigated at the community the social resources available to communities affected and primary health care level. by conflict [21], was modified for this study to Through in-depth interviews, six illness narratives were provide detail on the social networks of NCD collected during the first phase of data collection. Partici- patients in the specific fragile conflict-affected con- pants were recruited through purposive and snowball text of El Salvador. This method equally enables com- sampling in two separate Salvadoran hospitals which have munities to participate in identifying levels of specific epidemiological and geographical characteristics connection and trust among the people and organisa- in regard to NCDs. Participants included hospitalised pa- tions who provide support with their NCD manage- tients who were identified and recruited by health care ment. The tool was implemented with the technical staff unaware of the research objectives and who met the support of QMU researchers who have applied its following inclusion criteria: (1) being aged 35 or older, (2) use in other fragile and conflict-affected settings. having been diagnosed with DMT2 or CKD, and (3) exhi- 3) Semi-structured interviews with patients and staff biting lucidity and thereby the ability to freely consent to members in the PHC setting aimed at understanding participate in this study. The age group was determined the pathways of NCD care within the health system based on the WHO-defined “higher risk group” for NCDs from the viewpoint or perception of the participants, [23]. Patients suffering from CKD and DMT2 were pur- emphasising community perspectives and the role of posively selected for illness narrative interviews consider- social participation to strengthen NCD services. This ing the high prevalence of these diseases in the country method was aimed at gaining understanding of (487,785 patients with CKD and 459,114 with DMT2) [24] community health promotion, prevention and and also because of the social factors involved in the aeti- management of NCDs as well as the role of the NHF ology of both diseases (e.g. diet, access to fresh water, in providing NCD care. sedentarism, violence, pesticide use). Vidal et al. BMC Health Services Research (2020) 20:474 Page 5 of 14 Firstly, three of the illness narratives were obtained NHF and health care staff. Inclusion criteria for partici- with patients at Rosales Hospital, the national public pants included: (1) being aged 35 or older, (2) having an hospital of El Salvador, located in the metropolitan re- NCD diagnosis, (3) being affiliated to the NHF (for par- gion where the majority of NCD cases are managed [6]. ticipants belonging to the “organised” communities), and Patients were selected from this hospital as it attends to (4) exhibiting lucidity and thereby the ability to freely people from all over the country. As such, the research consent to participate in this study. team was able to explore the different experiences and Participants were asked about the different people and pathways of support among patients coming not just organisations in their communities whom they identified from the capital but also from very remote areas of El to be helpful if encountering problems during the stages Salvador. Moreover, it is the main hospital where severe of care. Five workshops of four participants each were complications of NCDs are treated. carried out to cover communities organised under the Secondly, three interviews were conducted at San Juan auspices of the NHF social movement, as well as those de Dios Hospital, in the city of San Miguel, located in that were not organised under the NHF movement. the eastern part of the country (oriental region), where Workshops were held in two urban areas of San Salva- there is the highest incidence of CKD. This hospital is a dor: District 1 (organised group in an urban setting) and referral public hospital for CKD management with an San Jacinto (non-organised group in an urban setting), interdisciplinary approach and promotion of ambulatory and three rural areas: Nueva Granada, Usulután (orga- peritoneal dialysis. The hospital also has a dialysis unit, nised group in a rural setting); Tierra Blanca, San Miguel which is where interviews were conducted. Patients were (organised group in a rural setting); and Pamchimalco, selected from this hospital given its rural location as well San Salvador (non-organised group in a rural setting) as to explore CKD management in detail as it is a less (Fig. 1). These locations were selected to capture urban commonly named NCD yet highly prevalent in the and rural settings as well as to be near the hospitals country, with El Salvador rating among the highest assessed in phase 1 where more cases of NCDs are present. worldwide [25]. During the workshops, participants were presented The interviews elicited information on the patients’ with three disease-based problem scenarios – diagnosis, background, family history, social networks and health, acute episodes, and follow-up – in order to determine with emphasis on detailed patient experiences of treat- whom they might contact and to whom each of these ment initiation, follow-up, care and support, communi- connections might pass them on to, if necessary. Re- cation with providers at each stage of treatment, and the sponses were plotted on paper linking persons or organi- broader social and structural determinants of health care sations to the problems for which they were accessed. accessibility and quality. After mapping social connections and resources in the The illness narratives were developed in the hospital different stages of care, participants were interviewed in- environment including the endocrinology unit, nephrol- dividually to determine the level of trust placed in each ogy unit and dialysis unit. As hospital settings are usually of the identified sources. For all connections identified, the last step of care, they provide an opportunity to ex- participants were asked to grade the level of trust they plore with participants the “causes of the causes” and placed on each. This process was facilitated through a the different stages in the development of the disease card sorting activity, consisting of the researchers produ- and pathways of care [23]. Furthermore, information on cing a set of cards with each of the identified connec- existing support through social networks and commu- tions written clearly on each. Participants then graded nity structures was also included in the illness narrative the cards by placing them in one of three piles repre- interviews. senting either no trust in that resource, some or little trust in that resource, or high trust in that resource. Mapping participants’ social connections using a social There was no overlap in sampling and recruitment of connections mapping tool participants between phase 1 (illness narratives) and The second phase of this study aimed at gaining insight phase 2 (social mapping) and the participants were not into the formal and informal support resources available informed about the other phases of the research at any to people with NCDs by mapping their network of social time. connections and their levels of trust with the connec- tions identified. Semi-structured interviews with NCD patients and staff Mapping participants’ network of connections was en- members in the first line setting sured through a series of participatory mapping work- The third phase of data collection involved conducting shops, designed to elicit awareness of local social semi-structured interviews with NCD patients and their connections and resources. Participants were recruited health providers, building on the findings from the ill- through purposive and snowball sampling facilitated by ness narratives and social connections mapping. The Vidal et al. BMC Health Services Research (2020) 20:474 Page 6 of 14 Fig. 1 Communities included in social mapping exercise objective was to gain an extensive understanding of pa- comprehensive understanding of the PHC system by tient and provider experiences with NCD care in the presenting the providers’ perspective of NCD care. first line setting. Health providers working in different levels within PHC The study population consisted of staff members were selected to participate (Table 3). working in PHC facilities and of patients with one or more NCD attending these units. Patient inclusion cri- Data management and analysis teria included: (1) being aged 35 or older, (2) living with All interviews and participatory workshops were con- an NCD, and (3) receiving care from the PHC units. ducted by the researchers in Spanish, and were digitally Purposive and snowball sampling methods were used recorded and subsequently transcribed into Microsoft to recruit participants. Purposive sampling, which is use- Word documents. Audio recordings were permanently ful for identifying hard to reach populations, was used to deleted following transcription. All qualitative data were locate participants from specific communities. Staff then coded, both manually and using NVivo Qualitative members and patients were initially identified by referral Analysis Software version 10.0. from the health unit coordinators, who assessed eligibil- Data collected from all three methods were analysed ity. A chain referral system was then used by asking par- separately. A deductive approach was used to develop an ticipants to recommend any other staff members or open coding system around the topics of patient path- patients they were aware of who met the recruitment ways to care, and patient and provider interactions and criteria and might be interested in participating in this experiences of care. All data were then triangulated to study. identify consistencies or variations across the dataset. Interviews were conducted with 14 NCD patients and The last step involved collating the coded data into a 12 staff members using a semi-structured interview unique pre-defined thematic framework (Table 4). guide developed specifically for this study (Additional file 1). Participants were interviewed at their place of Ethical considerations choice, in either the workplace or domicile. This study was approved by the National Health Ethics Patient interviews covered aspects of their experience Committee of El Salvador (CNEIS/2018/005_A) and by seeking and/or receiving care at the PHC facility, and in- the ethics committee of Queen Margaret University in cluded questions on treatment initiation, care and sup- Edinburgh. All participants were provided with an port, communication with providers at each stage of treatment, and the broader familial and social context of Table 2 NCD patient interviews their medicine-taking (or other aspects of care seeking) Non-communicable diseases suffered by patients interviewed N behaviour. Cardiovascular disease 9 The 14 NCD patients interviewed suffered from car- Diabetes Mellitus type 2 3 diovascular disease, DMT2 and/or CKD (Table 2). The Chronic Kidney Disease 2 median age of those interviewed was 64 years old. Staff Total 14 member interviews were included to incorporate a Vidal et al. BMC Health Services Research (2020) 20:474 Page 7 of 14 Table 3 Health provider interviews dictatorship (1930–1979), the civil war (1980–1992) and Primary health care staff Professional profile N the social consequences of a neoliberal economic and so- Coordination level Departmental coordinator (1) 4 cial policy (1992–2008). This protracted situation of social Intermunicipal coordinator (2) unrest had an important impact on the mental health sta- tus of the Salvadorian population, heightening the inability Regional coordinator (1) to manage chronic conditions. Many chronic patients Interdisciplinary PHC team Health educator (1) 8 interviewed related their illnesses to stress situations and Sanitary inspector (1) shocks derived from this situation. More than a real causal Medical student in year relationship, it illustrates the tensions for the poorer layers of social service (1) of the population during that neoliberal period. General practitioner (1) Family doctor (1) They found I had high sugar, but at the beginning, Nurses (1) the doctor told me that maybe it was just because of stress, because look, so much that we lived during Pharmacist (1) the war, for 12 years. That is why one has acquired Laboratory technician (1) so much harm. Then, I went to consultation and the Total 12 family doctor told me that these are the conse- quences of the war. (Patient with DMT2). information sheet detailing the objectives of the study and their rights as participants. Written informed con- During the interviews in primary health settings (phase sent was obtained from each participant prior to their 3), social violence, unhealthy lifestyles and economic involvement, with participants being informed of their barriers were mentioned as the main social risk factors right to decline to take part and/or leave at any time. for developing an NCD. Health providers further identified lifestyle factors Findings such as unhealthy diets as a major cause of presenting a From across the three sources of data collection, the fol- chronic condition, highlighting that participant back- lowing key issues were analysed: grounds and their economic situation need to be consid- 1) social risk factors and barriers to care; 2) patient path- ered in order to facilitate access to healthy diets. ways to care; 3) resources available identified through so- cial connections mapping; 4) trust in social connections; The biggest challenge is that patients need to comply 5) community health promotion, prevention and manage- with taking their medication or following other rec- ment of NCDs. These are described below. ommendations. Especially when these recommenda- tions have to do with lifestyle, principally with the Social risk factors and barriers to care diet. (General practitioner). Social violence due to the long war and unrest suffered in the country, along with the on-going disputes among The economy is the main reason for not changing criminal gangs, has strongly affected communities’ health the diet, they look for the most economical way for and their ability to secure continuity of care. This social their families and here the “pupusas” [toasts made violence has a long history, including a period of military of corn and stuffed with beans, cheese and pork Table 4 Thematic framework Illness narratives 1) Social determinants of care 2) Patient pathways 3) Health systems issues (e.g. costs of care, waiting times, quality of care) Mapping social connections and trust allocation 1) Public institutions (e.g. primary health care centres, public hospitals, maternity health centres, social insurance services) 2) Private institutions (e.g. private clinics, private hospitals, private doctors, naturopath) 3) Organisations (including local and international NGOs) 4) Community (e.g. neighbours, community associations) 5) Family (e.g. immediate or extended family members) Semi-structured interviews with NCD patients and 1) Primary health care in El Salvador (including organisation and coordination of staff members in the PHC setting care, evolution of the country’s health system, accessibility and barriers to care) 2) Chronic disease management in the PHC system (including prevention and promotion of care, pathways to care, quality of care and barriers to care) 3) Community engagement Vidal et al. BMC Health Services Research (2020) 20:474 Page 8 of 14 rinds], are very common, all the people here eat In addition, CKD patients with a higher socio- them because they are cheap and accessible, most economic status reported that they were diagnosed in people eat fried meals even if it is so unhealthy. private facilities, as there is still the belief that paying for (Health educator). medicines means they are better. Patients may also re- ceive diagnosis during or because of an emergency, Patients also emphasized the high costs of healthy in- which often happens when public facilities are closed or gredients and water. there are long distances to get to these facilities. It is expensive to maintain a healthy diet. I can’t, When I have an emergency, I prefer to go to the pri- and not everyone has everything, we can only buy vate clinic of San Salvador because there are no very little, and the bottled water. (Man with hyper- medicines in La Palma [public PHC centre] that tension and CKD). can be given as good as in the private one. In the private clinic I do not wait, they attend you at the In PHC settings, we observed a comprehensive ap- time you arrive. (Patient with hypertension). proach to lifestyle behaviours by promoting community- based NCD management that considers the population’s Health promoters play a very important role in identi- social and economic environment. An example of this, fying patients at risk of a chronic condition, showing as reported by one of the nurses of Chalatenanago, was that the promotion of community health is an important a weekly local radio programme, set up by collaboration aspect of strengthening this health system. between the PHC centre of La Palma and the local school, which engages with adolescents to promote Our strategy is based on the fact that health pro- healthy eating and other healthy lifestyle behaviours. moters are the eyes of the health centre, of everything that happens in the community, they are the first to Patient pathways to NCD care tell us that there is a person who might suffer from a Given the above challenges, it was important to consider chronic disease, knowing that, we schedule a visit to how these issues affect patient and provider experiences go to that patient’s home. (Nurse). of NCD care. A chronic patient follows a clearly re- ported pathway. In the case of hypertension and DMT2, Once patients are diagnosed, the follow-up is normally patients go to the PHC facility with the onset of symp- done in the PHC facilities, where they receive their toms such as fatigue. In some instances, patients may medication and follow-up examinations. For this reason, present at the PHC facility with chest pains or depres- the health reform reinforced the visits of specialised sion caused by the anxieties they feel given the on-going teams to the communities to assure a comprehensive ap- social violence. proach for all, including remote areas, giving access to a gynaecologist, paediatrician, psychologist, physiotherap- For me this started because of some problems that ist, nutritionist, health educator, sanitary inspector and the family had with people. The problem was, they family doctor. told me that they were going to kill a son of mine ... From that I was left with that distress. And from The specialist physicians have programmed ap- there I got a lot of affliction, I had a lot of sadness proaches to go to the communities, they evaluate the with a desire to cry, I had no joy, and a strong pain patients and identify those who need to attend a in my chest. (Patient with hypertension). health facility or they leave them in control; in this approach, home visits can also occur and also there For CKD patients, underdiagnoses are a major prob- is a comprehensive family care visit at their home lem [25], with many only discovering their diagnosis (Departmental coordinator). when presenting a severe condition of their disease at the hospital. Therefore, the hospital (specialised care) is The referral system still lacks strong coordination the entry point in many cases. within the different levels of care (specialised and pri- mary care), but has been reported to have improved with Several factors may influence [why] they are seen at the health reform [14, 15], giving patients a more com- the hospital level, because they have not been prehensive response to managing their disease. followed previously in the first level of care and they go to the hospital when they are already serious, As family doctors, when a patient can no longer be others because of lack of access. (Intermunicipal given their medication or a disease is difficult to con- coordinator). trol, or if there is an emergency, we refer the patient Vidal et al. BMC Health Services Research (2020) 20:474 Page 9 of 14 to the hospital. For example, if it is a renal patient, The same pattern is followed during acute episodes of there is a whole area for that, there they are assessed the disease, with participants mainly seeking help from by an internist, and if [the internist] considers that the private sector. This was reported as a change in pa- the patient has to continue their follow-up there, the tient behaviour, with the private sector used in cases of patient stays there. If not, they send us a referral to emergency. continue the patient’s follow-up here in PHC, en- gaging the patient in preventive activities with, for At the [public] clinic, normal exams are conducted example, the health educator. (Family doctor). and they do all of that, but they don’t give us what we need most, and this is specifically to do with our Available resources individual illnesses. For me, it’s my kidney and all The social connections mapping exercise highlighted the my organs, and they can’t test for this in the clinic. I resources available to, and used by, participants through think a lot of people are dying because of this, be- the three stages of their illness: diagnosis, acute episodes cause they can’t pay for this [private clinic]. (Man and follow-up. Five workshops were held: three in rural with DMT2). settings and two in urban settings. Within each setting, a workshop was conducted in an “organised area”. These Following the health reform, access to remote commu- were identified and selected by a key stakeholder, the nities has improved due to the implementation of spe- MoH. Organised areas were defined as those with higher cialised community teams [22]. However, emergencies social capital levels, social cohesion, and more presence often occur at times of difficult access to hospitals, for of social and community organisations such as the NHF. example, at night when there is limited public transport. Figures 2 and 3, respectively, show the identification and This may lead to significant indirect costs, such as family mapping of resources during a workshop and the re- members often having to be called upon to assist with fi- source used for each of the three scenarios: diagnosis, nancial support and to accompany the patient to the acute episodes and follow-up. hospital. The hospital, as a public institution, is usually the The greatest variety of resources is used during the place where people are first diagnosed. Additionally, follow-up phase, with PHC playing an important role. public health campaigns account for high burdens of Since the health reform, the public system, including ex- diagnoses, as many patients reported being diagnosed at tended first line services and the presence of supporting their work place during annual examinations. specialists, has reached more remote areas, and patients Fig. 2 Workshop map of organised rural community Vidal et al. BMC Health Services Research (2020) 20:474 Page 10 of 14 Fig. 3 Resources used during diagnosis, acute episodes and follow-up stages can ensure a follow-up of their illness in a comprehen- evident throughout the progression of the disease and sive manner. Natural medicine is also widely used, since mainly used for transportation and social support. it is cheap and easy to access and there is a perception that there is no risk in its use. Extensive popular know- ledge of these alternative medicines is in evidence. Trust in social connections Overall, in rural communities, private practitioners As shown in Fig. 4, there were higher levels of trust in (mainly naturopaths) were regularly drawn upon during public institutions. This may have been. diagnosis and follow-up, due to relative ease of access due to greater trust felt in first levels of care (PHC), and more economic options compared to urban areas. relative to trust placed in hospital care. In addition, ac- Religion is also predominant as an ‘institution’, as gath- cess to free medicine following the abolition of fees for ering in the church was seen to strengthen community both medicines and consultation due to the health re- cohesion, becoming more predominant as the disease form, may have also constituted a trust factor. progresses. A greater use of religious resources occurs There were varied levels of trust expressed in the pri- during follow-up, revealing the relevance religion has in vate sector. Participants had more confidence in exami- the management of chronic diseases, particularly for psy- nations done in private rather than public centres, but chosocial aspects. there was less trust during follow-up due to economic The most predominant organisational resource was the constraints. NHF, which played a predominant role in tackling social Regarding religion, the participants commonly refer- and health inequalities affecting chronic conditions such enced confidence in God and felt uplifted by the church as access to clean water [25]. Finally, family support is environment. Fig. 4 Levels of trust in resources used Vidal et al. BMC Health Services Research (2020) 20:474 Page 11 of 14 I think God gives us help and strength, because a lot society approach, linked to an extending network of of people I know with these illnesses have gotten very empowering community activism and organisation. depressed and even suicidal. That’s why I think that being in a group and being in church helps to lift For us, there is strength in counting on social partici- one’s spirits. Because God says that he is here. pation, because they [NHF] are in a way, the guards (Woman with DMT2). of the health system … Who better than they to visu- alise and follow-up, since a lot of the time we are In our study, we included and compared communities not able to due to work … It is the communities that with a strong level of organisation (in terms of social are organised, or those which the NHF has orga- capital and social cohesion) with communities that had nised, that participate the most in our programmes, not yet organised themselves. Participants who belonged such as vaccinations, or controlling dengue fever and to an organised community felt empowered to form chronic illnesses. In the territories where the NHF is local associations. Although overall, there was not much present, the population is very organised. The people trust in other members of the community due to the know what their obligations are. We collaborate current situation of social violence. However, partici- also, but they know that this is a shared responsibil- pants from organised communities reported high levels ity … [empowered communities] know that health is of trust in their communities and believed they could for everyone, it is not just the responsibility of the better respond to their health needs. MoH. It is not just about being cured, but it should be more about prevention. This is where the people Thankfully we are part of an organised community, of the NHF are helping the most. (Regional Director because of this we formed an association. And in of PHC centre). that association, we were able to get professional support. So, we had to form our own groups in order In line with the “health in all policies” WHO frame- to mutually help each other. (Woman with work, the community collaborates with the health sys- hypertension). tem by identifying their needs and by participating in the design of strategies to improve NCD care and Gender differences were also observed while analysing follow-up at community level. An example of this is in levels of trust at the family level, with some positing the region of Bajo Lempa where CKD is managed by in- higher levels of trust to female over male family volving all community assets. More attention is given to members. the prevention and early diagnosis of renal insufficiency linked to pesticide intoxication, known as chronic inter- ...with men, it’s like they see the worst, they don’t stitial nephritis of agricultural communities (CINAC). In place the same importance on things as women. We this region, the promotion of community peer support [women] are more careful to notice other people’s groups for NCDs where patients can learn from each problems. (Woman with DM). other is advocated, as further described in another study conducted by the same research team [25]. Community health promotion, prevention and management of NCDs Discussion An interesting aspect of our analysis in El Salvador was In view of the growing burden of NCDs worldwide, the the high level of organisation at the community level. It experience in El Salvador on the development of a com- was reported by staff members that people had gained prehensive strategy of NCD management highlights the strong organisation levels during the civil war period following findings: and therefore there was a strong commitment to partici- The combined use of qualitative data collection pate in decision-making. The NHF was born from methods within different levels of care and at the com- people of the communities who commenced advocating munity level help to better understand the comprehen- for the right to healthcare in the early 90s. These com- sive approach that is needed in NCD management. By munity bonds were reinforced due to the need for orga- investigating the experiences of health care staff and nised activism for structural change to overcome the people living with an NCD in El Salvador, social risk fac- current social, economic and political aspects that im- tors and barriers to care were identified as having a pact on health. The NHF is present in 12 of 14 depart- strong impact in the management of NCDs. Lifestyle ments of the country. factors and economic barriers were also mentioned as Their perspective grants activist advocacy for compre- social risk factors affecting the ability to maintain the hensive health policies, in which the structural causes of type of healthy lifestyle behaviours needed for preventing poverty and inequality are addressed through a whole and presenting with NCDs. Vidal et al. BMC Health Services Research (2020) 20:474 Page 12 of 14 Regarding patient pathways to care, the implementa- The Latin American current of critical epidemiology tion of PHC has enabled a more accessible NCD follow- [32] criticises the concept of social determinants of up with a holistic approach by combining a multidiscip- health on the basis of its fragmented analysis of the so- linary PHC staff with specialised teams going to cial reality. They instead advance the concept of social communities. determination of health, as this approach emphasises the A clear change in health seeking behaviours was noted determining influence of the overarching structural in- when assessing the available health resources. Patient equalities and the skewed power relations at all levels, diagnosis, still highly dependent on the private sector up which help us to better understand the complex interac- until follow-up, showed that psychosocial needs were tions of these layers on the social and health reality of mainly met through family support and religion. Further, communities and individuals. organisations such as the NHF are used to empower pa- This public health trend explicitly links their ana- tients. This has improved shared decision-making, lead- lysis to organised activism for structural change [33], ing to a better understanding of patient health needs. advocating for an extending network of empowering Participants from organised communities also reported community activism and organisation [34, 35]. Conse- high levels of trust in their own communities and be- quently, health promotion then refers to a process lieved they were more responsive to their health needs. where individuals organise and act to increase control Finally, concerning community health promotion and over factors related to their individual and collective prevention of NCDs, highly organised communities are health [36, 37]. participating in the identification of the needs and in the While this approach is widely embraced in communi- design of strategies to improve NCD care and follow-up ties that engage with the NHF, this type of organised en- at community level. Social health movements, such as gagement has a clearly political stand, implying a the NHF are promoting policies and strategies, which continuous struggle to maintain their influence on local consider the population needs. health policies through social mobilisation. While over The findings highlighted that community-based NCD time the number of organised communities and their programmes such as those included in this study could impact has been increasing, their focus is mainly on potentially be useful in other settings. The essential ele- rural areas, rather than cities. Moreover, other social ments for adapting these to other contexts relate to the phenomena cause contrasting dynamics: youth gangs role of the organised community as a complementary create high levels of social violence, related to the enor- approach for supporting health services [10, 26]. Else- mous economic divide in the country. where it is suggested that community-based interven- Political accountability mechanisms ensured through tions are useful for supporting individuals, families and the NHF constituted an important factor to rate higher communities to overcome obstacles, such as ensuring trust in health system performance. Accordingly, our continuity of care from diagnosis to follow-up, which is study found that quality of the management of NCD achieved through the guidance of the health services and care lies in a comprehensive approach to improve the re- well-developed NCD guidelines [27]. lation between PHC and specialised environments, rely- A study reporting recommendations for the man- ing on community-based interventions involving all agement of NCDs in conflict areas [28] highlights that community assets and taking into account the social and an integrated, multi- and interdisciplinary approach economic context. should be developed, ensuring the provision of quality care involving community leaders and influential indi- viduals. Such an approach, as reported by Magnusson Limitations et al. [29] needs to be grounded in the right to The complexity of the sociocultural, political and eco- health. This includes the prevention of NCDs and nomic context of El Salvador must be noted. The pe- their risk factors, the improvement of access to care, riods of fieldwork may have been too short to gain an and addressing the social impact of these ailments. overall in-depth knowledge of this context. Moreover, This highlights the appropriateness of a strategy the high level of violence in important parts of the coun- under the health in all policies framework [30] as car- try limited the fieldwork possibilities. Many of these ried out by the NHF. challenges were partially solved thanks to the support Over the last 10 years (2009–2019), El Salvador has and accompaniment of key Salvadorian stakeholders. implemented a national health system with the aim to This study was conducted between November 2017 guarantee universal health coverage. Progress has been and January 2019. The results of the national elections made, but the fragile context remains challenging, not in February 2019 led to a government change, which only to ensure further progress, but also to maintain might imply important changes in the health system what has been accomplished [31]. analysed here. Vidal et al. BMC Health Services Research (2020) 20:474 Page 13 of 14 Conclusion those of the UK National Health Service, the NIHR RUHF or the UK The complementary research methods and the different Department of Health and Social Care. groups of participants (patients, health personnel and Availability of data and materials health system coordinators) all identified similar strengths The datasets used and analysed during the current study are available from and obstacles in NCD management. The combined use of the corresponding author on reasonable request. these methods proved effective for obtaining an in-depth Ethics approval and consent to participate understanding of NCD management strategies in El Salva- This study was approved by the National Health Ethics Committee of El dor along the different levels of care (PHC and specialised Salvador (CNEIS/2018/005_A) and by the ethics committee of Queen care), and could serve to guide analyses in function of Margaret University in Edinburgh. All participants were informed of the aims and objectives of the study and their role, and signed a consent form that is policy-making in other fragile contexts. being securely stored in line with the requirements of Queen Margaret The generation of equitable health policies that pursue University’s ethics committee. accessible quality services is an essential first step to im- Consent for publication prove access and continuity of care for NCDs. However, Non-Applicable. the Salvadorian experience also shows that a strong and well-organised involvement of the communities can Competing interests The authors declared no conflicts of interest with respect to the research, positively influence health care access at the community authorship, and/or publication of this article. level, while also promoting a prevention culture. Participants insisted on the strengthening of healthy Author details 1 Institute for Global Health and Development, Queen Margaret University, lifestyle initiatives adapted to their sociocultural and Edinburgh, UK. 2Biomedical Research Institute Sant Pau (IIBSant Pau), economic contexts. Iberoamerican Cochrane Centre, Universidad Autónoma de Barcelona, Barcelona, Spain. 3Institute of Tropical Medicine, Antwerp, Belgium. Supplementary information Received: 1 October 2019 Accepted: 23 April 2020 Supplementary information accompanies this paper at https://doi.org/10. 1186/s12913-020-05249-8. 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