Abstract
The coordination of primary care is pivotal to the management of chronic conditions. However, current systems may not be as efficient or effective as one would hope. This article addresses to the managers and health teams in the primary care setting and their challenges regarding children and adolescents with chronic conditions in Brazil. A qualitative study was conducted with 26 primary care professionals and managers using thematic content analysis. The results showed a scarcity of specialists for referrals and a lack of professional training for dealing with this specific group of patients. It is necessary to improve health information systems to ensure the continuity of care. Current health care of children and adolescents with chronic conditions is neither efficient nor effective. For this type of care to be comprehensive, the health needs of this population must be addressed and the operational structure of the health care network must be strengthened.
Introduction
In Brazil, the traditional primary care model relies on the Family Health Strategy (FHS) as the preferred gateway to the health care network, placing it at the forefront of care coordination (Mendes, 2015; Starfield, 2002). The coordination of primary care in organizing health systems is considered pivotal to the management of chronic diseases, as patients with these conditions (especially children and adolescents) often access different points of the network, have contact with different types of professionals, and require continuous health promotion and prevention actions (Bousquat et al., 2017).
A study conducted at the University of Michigan (United States) in 2012 reported that approximately 15% to 18% of children live with a chronic health condition, that is, a health problem that lasts more than 3 months, affects daily activities, and requires extensive care, hospitalizations, and homecare (University of Michigan, 2012). It was estimated to be up to 35% higher than cost of coordinated care in the United States (Owens, 2010). In the general population in Brazil, 9.1% of children between 0 and 4 years of age, 9.7% of children/adolescents between 5 and 13 years of age, and 11% of adolescents between 14 and 19 years of age have a chronic disease (Brazilian Institute of Geography and Statistics, 2010).
The Brazilian Ministry of Health recommends the provision of comprehensive care to the population with chronic disease at all points of the health care network (Ministry of Health, 2014). However, it does not list actions directed at children and adolescents with chronic conditions and who require special care. Moreover, there are gaps in national public health policies that expose this population to greater vulnerability, as health services are not prepared to receive these patients properly and offer them effective treatment for their illnesses, which affects the continuity of care (Nóbrega et al., 2017).
A study conducted by the European Commission (2014) stated that the situation regarding chronic conditions in Brazil and throughout the world requires stronger political leadership, integrated health services, a more efficient use of available resources as well as information on prevention, treatment, cost-effectiveness, and demographic changes.
Thus, primary care faces challenges in terms of coordinating and managing the therapeutic course of children and adolescents with chronic conditions through the health care network, highlighting actions aimed at overcoming the fragmentation of health care and service management and improving the operation of universal coverage systems throughout the world (Lapão, Arcêncio, Popolin, & Rodrigues, 2017).
A qualitative longitudinal study conducted in Sweden with parents of children affected by hemophilia found that families want to learn to care for children with chronic diseases with autonomy and independence and, as such, need the support of health professionals in their learning process (Westesson, Wallengren, Baghaei, & Sparud-Lundin, 2018).
A study conducted in Brazil that evaluated the coordination/integration of care demonstrated the satisfaction of mothers when their children were sent to a secondary health care institution for specific exams or consultations with specialists as well as their satisfaction with the fact that the family health team was always close to the child (Furtado, Braz, Pina, Mello, & Lima, 2013). It was also found that the health team used the documents, records, or reports required for the coordination of care during the children’s visits.
However, a study conducted in the city of Belo Horizonte, Brazil, showed the fragmentation of the network of health services and a lack of coordination in primary care actions to ensure the continuity of care for children with chronic conditions (Duarte et al., 2015). Thus, for chronic conditions in children and adolescents to be managed and effectively controlled in a proactive, continuous, and integrated manner by the health care system, managers, health professionals, and users (Mendes, 2017), it is necessary to adopt information sharing, mutual aid, and reciprocity among all those involved in the care of this population (Lapão et al., 2017).
The challenges faced by primary care managers and professionals in the continuity of care for children and adolescents with chronic conditions are associated with the small number of pediatric specialists in the health care network, the fragmented work of the family health team, the inefficiency of referrals and counter-referrals, the difficulty in achieving intersectoral actions, and the insufficient operational structure of the health care network for following-up this specific population (Duarte et al., 2015).
In view of the considerations presented herein, the following questions can be raised: How has the primary care of children/adolescents with chronic conditions been managed in the FHS? How does communication take place between the family health team and those on other health care levels related to children/adolescents/families with chronic conditions? How do FHS staff and managers perceive the health care network with regard to care for children/adolescents/families with chronic conditions? What are the challenges faced by these professionals in the care of these children and adolescents?
Thus, the aim of the present study was to identify challenges faced by managers and teams in the primary care setting for the care of children and adolescents with chronic conditions in Brazil.
Method
A qualitative study was conducted in the primary care, comprised 191 family health units distributed among the five health districts of the city of João Pessoa, state of Paraíba, Brazil (Department of Health of the Municipality of João Pessoa, Paraíba Brazil, 2018). Five units in each health district were randomly selected and analyzed based on information from community health agents to determine whether these family health units provided care to children and adolescents with chronic conditions. If the community health agent reported that there were no records of such patients at the unit, a new random selection was performed. At the end of 3 months of applying this strategy, 20 units with registered children and adolescents with chronic conditions were selected.
Five health district managers/directors, six matrix supporters, four doctors, and 11 nurses participated in this study, totaling 26 primary care professionals.
In Brazil, the matrix support in the work process of the family health team in primary care is supported by the teams of the Family Health Support Centers (NASF), which can be composed of the different health professions, which aims to offer technical-assistance and pedagogical support, to achieve comprehensiveness of care and resolutiveness (Oliveira & Campos, 2015; Viana & Campos, 2018).
These professionals were selected based on the following inclusion criteria: must be a manager in primary care or part of the FHS for more than a year and have experience in the care of children/adolescents/families with chronic conditions in their daily activities. Managers and health professionals who were on leave or vacation during the period of data collection were excluded.
Prior to the data collection, the moderator and observers underwent training regarding the focus group (FG) technique by a researcher with ample experience in this method and qualitative studies. Empirical data were collected from five FGs in June and July, 2016. Data collection lasted for approximately 90 minutes in each FG and was performed by a moderator and two observers. The groups were composed of three to seven professionals/managers. The same researchers collected the data in all five FGs. The discussions that emerged by reading a trigger text were recorded, transcribed in full, and submitted to thematic content analysis (Bardin, 2012).
The empirical material was analyzed in three phases: (a) reading of all pages of the text several times to become familiar with the data, (b) comprehensive reading for the identification of central ideas contained in the discussions, and (c) the grouping of ideas by similarity in cores of meaning and regrouping based on the central theme: challenges faced by primary care managers and the family health teams regarding the coordination and organization of the health care network for children/adolescents/families with chronic conditions. This central theme was analyzed in two dimensions: management of the chronic conditions of children/adolescents in the health care network and operational structure for the follow-up of children/adolescents with chronic conditions in the health care network.
To increase the validity of the study, the transcripts were read by three examiners during the analysis and all emerging data categories were discussed until an agreement was reached. It should be pointed out that the examiners had more than 20 years of work experience involving children/adolescents with chronic conditions and qualitative research. During the FG sessions, the examiner who was in charge of the data collection took notes, which were used to discuss categories with the other three examiners.
This study received approval from the Human Research Ethics Committee of the Center for Health Sciences the Federal University of Paraíba (Protocol Number: 054/14; Certificate Number: 27102214.6.0000.5188; João Pessoa Municipal Secretary of Health Authorization Number: 25.020/2013). All participants signed a statement of informed consent prior to enrollment in the study. Representative excerpts from FG discussions were used to illustrate the observations, which are shown in the order in which they took place (FG1, FG2, FG3, FG4, and FG5).
Results
Characterization of the Participants
The participants were between 25 and 65 years of age. Twenty-four were women and two were men. All participants had a higher education background, with 2 to 38 years of specialization in the fields of family, public, and collective health and had worked in the FHS from 1 to 18 years. During the discussions, the professionals and managers pointed out some of the challenges associated with the management of chronic conditions and the operational structure of the health care network that affect the coordination of care and network organization for assisting the young population affected by chronic illnesses.
Management of Chronic Conditions of Children and Adolescents in the Health Care Network
The management of the chronic conditions of children/adolescents in the health care network involves several challenges, including one associated with changes in the epidemiological profile of these conditions over time. This population requires a differentiated care network and constant follow-up by specialists. Another challenge mentioned by the participants was the scarce availability of specialists in the health care network to assist this group of patients.
With the change in the epidemiological profile of the disease, the biggest challenge is the availability of specialists in the network to refer a child. Currently, there are no pediatric neurologists and pediatricians are scarce in the network. (FG1) There is a scarcity of specialized professionals to assist children and adolescents with a chronic illness in the network. There is a lack of focus on the part of professionals regarding this particular group of patients. (FG3)
In this sense, a lack of professional training was considered an aggravating factor. Indeed, the participants emphasized the need to be properly trained for the follow-up of children/adolescents who require differentiated and special care.
Even today, it is difficult to find qualified professionals to assist children and adolescents, especially those with chronic conditions. (FG5) These patients need longitudinal care. And there is no training for professionals in the network. We struggle to stay updated. (FG2)
The perception of professionals/managers is that strengthening the health care network for children/adolescents with a chronic illness to achieve effective follow-up is a challenge that requires the involvement of all parties to ensure the family/team bond and the continuity of care in the primary care setting.
The biggest challenge is to think of a way that strengthens the care network for children with chronic diseases; to focus on them, thinking of a type of care that preserves the family/team bond. (FG5) It is necessary for all parties to handle these conditions properly for the continuity of care. Strengthening this network means that all professionals share the responsibility for care. (FG3)
Another challenge faced by management is trying to get professionals of specialized and in-hospital care to follow-up children/adolescents with chronic conditions, implement counter-referrals, and update records so that primary care professionals can continue to assist patients based on what has been documented by the referred service.
Another challenge is formalizing counter-referrals, having counter-referrals filled out by the specialists so that children return to the FHS for the continuity of care. There is such an instrument, but we have difficulties making it official. (FG5)
For doctors and nurses, counter-referrals would not only ensure that the bond between this population and the family health team is preserved, but would also facilitate follow-up throughout the health care network by identifying patients’ needs and avoiding repeating care procedures.
The FHS professional would not lose the bond with the patient if the specialist made a formal counter-referral. With documented information, one would know if the problem was solved so that procedures would not be repeated. (FG1) When the child returns to the FHS, one important thing would be to know what the specialist had done; whether the problem was solved so as not to repeat the same procedures. (FG4)
Operational Structure for the Follow-Up of Children and Adolescents With Chronic Conditions in the Health Care Network
As the communication center within the operational structure of the health care network, primary care coordinates the flow and counter-flow of children/adolescents with chronic conditions through secondary and tertiary care points. As such, it relies on support, logistics, and governance systems. The FGs addressed aspects associated with the logistics of the health care network, including the electronic health record system, regulated access, and transportation for patients. In the participants’ perception, the lack of an electronic record system in the municipality contributed to the discontinuity of care. The implementation of an electronic health registry would enable the rational organization of the information on the children/adolescents with chronic illnesses throughout the network, as it would facilitate communication among managers, professionals, and health services.
The solution would be an electronic health record system. Any professional or manager would be able to access information through the internet, which would facilitate communication among the three levels of care. (FG1) The implementation of an electronic health record system to electronically monitor the care provided at the different points of care in the network would ensure the continuity of care. (FG3)
Another challenge mentioned was the difficulty in ensuring regulated access to the health care of children/adolescents with chronic illnesses. Currently, the primary care manager is the one who requests specialized consultations or exams at the referral center based on the municipal criteria established for the flow of these patients. However, most of the time, the wait is so long that the family decides to look for the services on their own or seek alternatives in the private health sector.
We request appointments through the referral center and hope that it will work out. The waiting time to get specialized care or a more sophisticated exam is very long. The mothers do not want to be on the waiting list to have access through normal procedures and they end up searching alternatives on their own. (FG5) Families get tired of waiting and go after a solution on their own. They prefer to pay a “popular” [term used in Brazil to refer to services covered by a low-cost health plan with restricted coverage] consultation or exam. They end up tightening their belts and getting a health plan for the child. (FG2)
The problem of transporting these chronic patients, who often are bedridden and whose family members do not have the means to take them to the referral services on their own, was discussed.
This child with cerebral palsy needed to be followed-up by primary care and the Foundation for the Support of People with Disabilities. But you don’t have a car to pick the child up and the family doesn’t have the means to go on their own. We used to have a social ambulance, but not anymore. (FG1) The transport issue is a strain. You are able to make an appointment for a high-cost exam or service and when you inform the family that the location is distant, they say they won’t go because they are not able to. (FG4)
Other aspects that emerged from the discussions were associated with the support system of the operational structure of the health care network in the municipality, including telehealth and the health information systems. Conversely, aspects on diagnostic/therapeutic support and pharmaceutical care were not discussed.
According to the managers, strengthening the telehealth system to promote the interest of family health team professionals to access the system as a support for continuing education and thus expand the autonomy and effectiveness of the family health team remains a challenge.
Access to telehealth in the municipality has improved in the last three months, but needs to be strengthened. The professionals have computers at the health units connected to the network, but do not always access them. (FG5)
Another challenge was related to the change in the information system from the unified health care system (denominated e-SUS) to primary care e-SUS. According to reports, this system is still entered manually in João Pessoa through forms and not electronically, as proposed. This has led to resistance among those who enter information into the system, that is, the community health agents, which affects the updating of information.
E-SUS in the city is still not electronic. This information system comes with a lot of paper forms. The community health agents must enter information manually and correctly so that the matrix supporters can send it to the districts, where it will be entered into the electronic system. Some resist and do not fill out the forms correctly or at all, making it difficult to consolidate local information. (FG4)
Due to the difficulty encountered by managers to keep e-SUS data updated and digitalized, health situation meetings are not taking place in the city. This type of meeting is an instrument to help managers and professionals on the teams identify health indicators and intervene in epidemiological situations that affect the FHS.
Health indicators serve as a barometer for the teams to develop strategic actions to improve the conditions of the population. The situation meetings enabled the teams to assess what was being produced and the quality of the care provided. (FG5) We no longer do situation meetings. There are no more discussions on health indicators. Before, with the former information system, we were able to visualize the critical issues in the care network. Not anymore. (FG3)
Discussion
The findings of the present study underscore the need for the creation of patient flow and counter-flow mechanisms, an effective communication system, and the availability of specialists for the management of chronic health conditions, which will enable the continuity of health care offered to children, adolescents, and their families. This population requires a closer look from primary care managers and professionals, who, in turn, face challenges with regard to coordinating care of such individuals throughout the entire process in the health care network. The coordination of this process requires the involvement and co-responsibility of health providers and the planning of efficient actions for ensuring effective care.
A previous study found that the families of children with autism considered the support of the services that follow-up these children to be fundamental but often insufficient to meet their needs (Nicholas et al., 2015). The lack of specialists in the health care network to assist children and adolescents with chronic illnesses hinders the management of these conditions. Moreover, the generalist training of health professionals and the lack of training opportunities for these professionals to deal with children/adolescents with chronic illnesses remain an issue, as these patients require specific, differentiated care.
Thus, the disconnection between health training and the reality of the health care network further hinders the process of change in the system (Tesser & Neto, 2017). One study found that few health services, managers, and health professionals follow-up with children with special needs and that this may be due to a lack of training and specific preparation regarding care coordination activities throughout their education and professional lives (Zanello et al., 2017).
Moreover, the proper management of these conditions requires an organization of primary, secondary, and tertiary care services to ensure the continuity of care, the preservation of the patient/health team bond, and the meeting of health needs. As such, a strengthened, non-fragmented care network is needed to offer high-quality and effective care so that the family creates a bond with the FHS professionals and returns for follow-up with the primary care team.
Regarding care for children, the establishment of a bond requires the appreciation of the caregiver’s experience, particularly because caregivers must convey trust and mutual respect. This contributes significantly to the decrease in health issues within this population, as caregivers mediate the search for health care services in such a way that those who are more receptive to their needs will be part of their itinerary (Reichert, Rodrigues, Albuquerque, Collet, & Minayo, 2016). In this respect, a greater bond between the families of children/adolescents with chronic conditions and the health care system implies greater care network coverage. However, a previous study reports that when a health care network is disjointed and fragmented among different services, follow-up for children/adolescents with chronic conditions is not adequate, which exerts an impact on the ability of primary care to provide continuous, comprehensive care (Santos, Marques, & Souza, 2017).
In the present study, one of the factors identified as contributing to such disjointedness was the lack of counter-referrals by professionals to outpatient and in-hospital health care services, making it a challenge for primary care providers to make counter-referrals official. The data suggest that the participants did not value this form of communication in the network, despite knowing that the referral and counter-referral systems represent the optimal way to monitor the care flow of the young population with chronic diseases within the network services, thereby promoting the comprehensiveness of care (Costa et al., 2015).
The scientific literature shows that the referral and counter-referral systems in Brazilian municipalities are still incipient, with a larger number of referrals in the network as opposed to counter-referrals (Alves, Guedes, Martins, & Chianca, 2015; Costa et al., 2015; Protasio et al., 2014). This results in weaknesses for health care network integration in terms of flow organization and definition, especially in counter-referrals, which can compromise the comprehensiveness of care and the role of primary care in care coordination and network organization (Silva & Fracolli, 2016). Primary care can coordinate the path of users through the different health care levels of the referral/counter-referral network as a system with four components that work in an integrated way: primary care, which coordinates and establishes the bond with the population; secondary and tertiary care; logistics systems; and support systems (Mendes, 2011, 2015; National Council of Health Secretaries, 2015).
Furthermore, it is necessary to collect and use health information to enable managers and health professionals to carry out a situational assessment of a given community area. Such an assessment can assist in the planning and implementation of the strategies required to address the problems encountered (Deininger et al., 2014). It will therefore be possible to build a network in which primary health care ensures adequate support for more effective management of chronic conditions in childhood and adolescence.
Logistics systems are technological solutions strongly anchored in information technologies that ensure the rational organization of the flow and counter-flow of information, products, and people in the health care network and support systems, enabling an effective referral/counter-referral system (Mendes, 2017). These systems consist of electronic health records (user identification cards, medical records, regulated health care access systems) and transport systems in health (Mendes, 2011; Pan-American Health Organization [PAHO], 2011). The implementation of the electronic health record system contributes to the elimination of information duplication and reduces the wait time for appointments, exams, and procedures, contributing to the better quality of records and better access for the population (Lapão et al., 2017).
In the municipality of João Pessoa, no computerized integrated medical record system has been implemented, which may explain the absence of a referral/counter-referral system. The lack of this resource reduces opportunities for inter-professional communication, which is one of the dimensions of health care coordination (Bousquat et al., 2017), and consequently affects the continuity of care provided by primary care to children/adolescents with chronic conditions. A systematic review demonstrated that the use of the Electronic Medical Record facilitates the understanding of disease patterns and prevalence rates (McBrien et al., 2018). As the patient’s medical record can be accessed at different points of the health care network, there is the possibility of inter-consultations by sharing information with all professionals and health care teams, regardless of distance.
Regulated access systems constitute operational structures that mediate a certain supply and demand for health services to streamline access according to the level of risks and defined standards in health care protocols and patient flow (PAHO, 2011). However, one study showed that gaps between supply and demand are still found in the daily routine of the Brazilian public health care system, making the referral center insufficient to meet the health needs of the population (Peiter, Lanzoni, & Oliveira, 2016).
The health care of children/adolescents with chronic conditions is controlled by the referral center in the municipality. However, with the high demand, the wait for appointments or specialized exams is long, which results in the family seeking specialized services on their own or investing in private health plans. This contributes to the low effectiveness of primary care, which excessively and improperly refers patients to specialized services, leading waiting lists and user dissatisfaction (Albieri & Cecilio, 2015).
Transport systems in health care are logistical solutions that extend across all health care networks, are indispensable for access to health care services and diagnostic/therapeutic support systems, transport biological material, and transport health teams (PAHO, 2011). The transportation of children/adolescents with chronic conditions within the city—such as in cases of children with cerebral palsy who have difficulty in locomotion (Santos et al., 2017) and children with chronic diseases who need to travel from other municipalities to receive assistance in the capital (Nóbrega et al., 2017)—was considered poor, as this population is physically and/or economically unable to commute to other health care network facilities. This situation is a challenge for primary care professionals who coordinate the care of children with chronic conditions, because it makes it difficult for these patients to be discharged for care (da Silva, Sobrinho, Neves, Toso, & Viera, 2015; Duarte et al., 2015).
In the operational structure of the health care network, support systems refer to diagnostic and therapeutic support, pharmaceutical care, telehealth, and health information systems (Mendes, 2011, 2015) Among these, the telehealth program of the city needs to be strengthened to facilitate the matrix support for chronic conditions and enable a remote second opinion from specialists at the general practitioner’s request (Mendes, 2015). Telehealth activities in primary care occur under a perspective of continuing education, with the aim of expanding the autonomy and effectiveness of the FHS professionals requesting them (Ministry of Health, 2013). Telehealth is an electronic data and connectivity tool used to organize a productive health chain and improve the strategies and logistics of the health system. It is a promising tool in the training and continuing education of FHS professionals and requires an investment in specific equipment for better experiences in distance education (Dantas, Santos, Araújo, & Pinheiro Neto, 2016; Wen, 2015).
The Primary Health Care Information System and the primary care e-SUS are also instruments that need to be strengthened. Managers and members of the family health team struggle to keep these systems updated, as records are still being entered manually. This makes it difficult to identify health indicators that need to be addressed at situation meetings, which are not occurring in this city. Although this study indicates that the restructuring of primary care systems by the primary care e-SUS in the health districts of João Pessoa, Brazil, is in an advanced stage, it still has limitations, such as the inability to edit information already entered into the system and the fact that its reporting system provides little help for monitoring the local health situation (Oliveira, Lima, Nascimento, Coelho, & Santos, 2016). The experience in a health district in João Pessoa with a situation meeting for dengue fever provided a more in-depth analysis of the situation and enabled the proposal of actions to combat this epidemic resulting from the dialogue between managers and health care professionals on different care levels (Deininger et al., 2014).
Primary care e-SUS must restructure primary care information on the national level, taking into consideration that the quality of information management is essential to increasing the quality of care provided to the population (Ministry of Health, 2018). Given the high demand of users, complexity of the scenarios, and diversity of the territories, effectively using a tool that provides an overview of the health system is a strategy inherent to high-quality management (Garcia & Reis, 2016). As such, it is necessary to implement actions to consolidate the health care services network to meet the specific demands of users, facilitate access, and ensure the continuity of care. Such actions include making counter-referrals official; documenting the care provided by the referred professional service to avoid the repetition of procedures; implementing electronic medical records to improve communication among users, managers, professionals, and health services; ensuring regulated access; scheduling consultations or exams and reducing the wait time; improving the transport system in health care, which is not appropriate for the commuting of users or professionals; strengthening the telehealth system and favoring continuing education; and improving health information systems with the use of electronic tools, which can help with the follow-up of local health situations. There are still many challenges facing managers and family health teams to be able to coordinate care and organize the health care network of children/adolescents with chronic conditions in the municipality of João Pessoa in northeastern Brazil.
The limitations of this study are directly related to the nature of the qualitative approach, which does not consider the number of participants, but instead the phenomena and meanings attributed to study participants in an appropriate context. Thus, further research with alternative approaches and covering other cities in Brazil is warranted.
Conclusion
This study developed at primary care services in Brazil addressed the challenges faced by professionals and managers at these services, showing that the coordination of care for children/adolescents with chronic conditions is still not efficient or effective in the city studied. For this type of care to become comprehensive and integrated, improvements are needed in the management of the health needs of this population as well as the operational structure that affects the organization of the health care network.
The availability of specialized professionals in the health care network is low and primary care general practitioners lack specific training to deal with this group of patients. The participants in the present study indicated that the network support and logistics systems need to be strengthened to ensure the preservation of the user/professional/service bond and the continuity of care.
The results presented here can contribute to the reorganization of health care for the child/adolescent population with chronic illnesses to assist in combating these conditions, which requires a differentiated care network, as such patients require constant follow-up with specialized outpatient and in-hospital services. Further studies are needed to broaden knowledge on the coordination of care for children/adolescents with chronic conditions so that these challenges can be used to design interventions to alter this situation.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
