Abstract

Introduction

The SARS-CoV-2 pandemic poses an unprecedented challenge in Latin America and the Caribbean. Although these regions contain 8% of the world’s population, they reported 17% of COVID-19 cases and 29% of confirmed deaths, besides an economic recession resulting in a 6.7% drop in gross domestic product (GDP) in 2020, an estimated loss of 39 million jobs and 20 million people pushed into extreme poverty, configuring a triple crisis situation: health, economic and social ¹1. Savedoff WD, Bernal P, Distrutti M, Goyeneche L, Bernal C. Going beyond normal challenges for health and healthcare in Latin America and the Caribbean exposed by Covid-19. Washington DC: Inter-American Development Bank; 2022. (Technical Note, IDB-TN-2471).. By July 2022, Brazil had recorded over 678,000 deaths and 33.7 million people infected ²2. Ministério da Saúde. Painel Coronavírus. https://COVID.saude.gov.br/ (acessado em 29/Jul/2022).
https://COVID.saude.gov.br/... . The absence of coordinated action between different government levels and the deliberate position of the Federal Government, combined with normative acts that created obstacles to local responses and encouraged misinformation, partly explain the severity of the health context in Brazil ³3. The Lancet. COVID-19 in Brazil: "so what?". Lancet 2020; 395:1461.^,44. Centro de Estudos e Pesquisas de Direito Sanitário; CONECTAS Direitos Humanos. Direitos na pandemia, mapeamento e análise das normas jurídicas de resposta à Covid-19 no Brasil. Faculdade de Saúde Pública da Universidade de São Paulo. São Paulo; 2021. (Boletim, 10)., to which are added an economic recession and a significant increase in poverty ⁵5. Carvalho AR, Souza LR, Gonçalves SL, Almeida ERF. Social vulnerability and health crisis in Brazil. Cad Saúde Pública 2021; 37:e00071721..

The severe forms of the disease affected population groups who were older, suffered from chronic comorbidities and had high body mass index (BMI) ⁶6. Oshakbayev K, Zhankalova Z, Gazaliyeva M, Mustafin K, Bedelbayeva G, Dukenbayeva B, et al. Association between COVID-19 morbidity, mortality, and gross domestic product, overweight/obesity, non-communicable diseases, vaccination rate: a cross-sectional study. J Infect Public Health 2022; 15:255-60.^,77. Mesenburg MA, Hallal PC, Menezes AMP, Barros AJD, Horta BL, Barros FC, et al. Chronic non-communicable diseases and COVID-19: EPICOVID-19 Brazil results. Rev Saúde Pública 2021; 55:38.. However, distribution in Brazil was quite uneven, with twice the number of cases in the poorest quintile of the population compared to the richest ⁸8. Hallal PC, Hartwig FP, Horta BL, Silveira MF, Struchiner CJ, Vidaletti LP, et al. SARS-CoV-2 antibody prevalence in Brazil: results from two successive nationwide serological household surveys. Lancet Glob Health 2020; 8:1390-8.. This can be characterized as a syndemic ⁹9. Bispo Júnior JP, Santos DB. COVID-19 como sindemia: modelo teórico e fundamentos para a abordagem abrangente em saúde. Cad Saúde Pública 2021; 37:e00119021., a situation in which social inequalities contribute to the worsening of COVID-19 consequences, as observed, for example, in states of the North and Northeast regions, whose health systems are more fragile ¹⁰10. Macinko J, Wooley NO, Seixas BV, Andrade FB, Lima-Costa MF. Procura por atendimento médico devido a sintomas relacionados à COVID-19 e cancelamento de consultas médicas em função da epidemia entre adultos brasileiros mais velhos: iniciativa ELSI-COVID-19. Cad Saúde Pública 2020; 36 Suppl 3:e00181920.. This socio-economically vulnerable population group with a burden of pre-existing diseases relies primarily on the public system for health care ¹¹11. Palmeira NC, Moro JP, Getulino FA, Vieira YP, Soares Junior AO, Saes MO. Análise do acesso a serviços de saúde no Brasil segundo perfil sociodemográfico: Pesquisa Nacional de Saúde, 2019. Epidemiol Serv Saúde 2022; 31:e2022966..

A comprehensive response to a health problem such as COVID-19 requires simultaneous and coordinated action at different levels of care, with an obvious need for healthcare systems to provide recovery from the effects of long COVID ¹²12. Miranda RAR, Ostolin TLVP. Mapa de evidências sobre sequelas e reabilitação pós-Covid-19: relatório completo. São Paulo: Organização Pan-Americana da Saúde; 2022.. Only in December 2021 did the Brazilian Ministry of Health approve a change in the list of services covered by the Brazilian Unified National Health System (SUS), including payment for rehabilitation of post-COVID-19 patients and functional rehabilitation of post-COVID-19 patients, through the Strategic Action and Compensation Fund ¹³13. Ministério da Saúde. Portaria GM/MS nº 3.872, de 23 de dezembro de 2021. Inclui procedimentos na Tabela de Procedimentos, Medicamentos, Órteses, Próteses e Materiais Especiais (OPM) do Sistema Único de Saúde - SUS. Diário Oficial da União 2021; 29 dez.. Given the omission of the federal administration, municipalities and states strove to organize services and initiatives to face the effects of COVID-19, including treatment and rehabilitation ¹⁴14. Carvalho ALB, Rocha E, Sampaio RF, Ouverney ALM. Os governos estaduais no enfrentamento da Covid-19: um novo protagonismo no federalismo brasileiro? Saúde Debate 2022; 46(spe 1):62-77..

The consequences for the continued care of chronic conditions such as diabetes, high blood pressure and cancer, among others, are felt differently during emergencies, with greater impact in low- and middle-income countries, whose health systems struggle to reconcile measures targeted at severe conditions with those aimed at the prevention and control of noncommunicable diseases ¹⁵15. Slama S, Kim HJ, Roglic G, Boulle P, Hering H, Varghese C, et al. Care of non-communicable diseases in emergencies. Lancet 2017; 389:326-30.. In the case of COVID-19, the need for testing, screening, monitoring of cases and contacts and, subsequently, vaccination, increased the strain on health systems, causing, for example, the suspension of previously scheduled appointments and face-to-face visits in primary health care (PHC) and communication problems between health authorities, providers and the population in various situations ¹⁶16. Bullen C, McCormack J, Calder A, Parag V, Subramaniam K, Majumdar A, et al. The impact of COVID-19 on the care of people living with noncommunicable diseases in low- and middle-income countries: an online survey of physicians and pharmacists in nine countries. Prim Health Care Res Dev 2021; 14:e30.^,1717. Deml MJ, Minnema J, Dubois J, Senn O, Streit S, Rachamin Y, et al. The impact of the COVID-19 pandemic on the continuity of care for at-risk patients in Swiss primary care settings: a mixed-methods study. Soc Sci Med 2022; 298:114858..

Such evidence indicates that health emergencies require contingency plans which address the health system as a whole and not just the infectious agent ¹⁷17. Deml MJ, Minnema J, Dubois J, Senn O, Streit S, Rachamin Y, et al. The impact of the COVID-19 pandemic on the continuity of care for at-risk patients in Swiss primary care settings: a mixed-methods study. Soc Sci Med 2022; 298:114858., incorporating measures to (re)organize actions and services aimed at maintaining primary care and also respond to the needs arising from the emergency situation. In this sense, this article aims to analyze the care trajectories of patients diagnosed with COVID-19 who had been hospitalized and were undergoing rehabilitation regarding the use of and access to the various services offered by the healthcare network (HN). The goal is to identify obstacles that stand between patients and the health system, adopted strategies and possible innovations and lessons learned that support policies, organization and practices capable of responding to the emerging needs of the pandemic, the successive waves of contamination and the persistent obstacles to care trajectories in SUS.

Methodology

Study design

This is an evaluative study with a qualitative approach aimed at the production of care trajectories of COVID-19 patients with experiences of diagnosis, hospitalization and rehabilitation in the city of Niterói, Rio de Janeiro State, Brazil. The care trajectories are used to evaluate the organization and provision of health services based on the strategies and means used by patients in their search for care ¹⁸18. Wang J, Liu S, Bao Z, Gao M, Peng Y, Huang Y, et al. Patients' experiences across the trajectory of atrial fibrillation: a qualitative systematic review. Health Expect 2022; 25:869-84.. They represent evaluative practices that, based on the experiences of illness, enable the identification of constraints, conditions of use and access to HN and quality of care ¹⁹19. Galvão JR, Almeida PF, Santos AM, Bousquat A. Percursos e obstáculos na Rede de Atenção à Saúde: trajetórias assistenciais de mulheres em região de saúde do Nordeste brasileiro. Cad Saúde Pública 2019; 35:e00004119., which is justified in the case of a health condition - COVID-19 - whose patterns of intervention and evaluation lack studies and evidence.

Data collection and study sample

The study was carried out in Niterói, a city of 515,000 inhabitants, seat of the II Metropolitan Health Region of the state of Rio de Janeiro. It is part of a broader investigation funded through a public notice in line with the Municipal Strategic Plan, related to Care Management and Healthcare Networks. Data were collected at the rehabilitation service for post-COVID-19 patients, opened in August 2021 in the Gilson Cantarino Oceanic Municipal Hospital (HMON), which, in the most acute period of the pandemic, was exclusively used to treat severe cases of the disease ²⁰20. Prefeitura Municipal de Niterói. Niterói inaugura primeiro Centro de Reabilitação Pós-Covid no Hospital Municipal Oceânico. http://www.niteroi.rj.gov.br/2021/08/24/niteroi-inaugura-primeiro-centro-de-reabilitacao-pos-COVID-no-hospital-municipal-oceanico/ (acessado em 02/Ago/2022).
http://www.niteroi.rj.gov.br/2021/08/24/... . The facility was selected for being a municipal referral center in rehabilitation, providing regular healthcare services and, at the time of data collection, treating patients who had been hospitalized.

In order to reconstruct the care trajectories, 27 face-to-face interviews were carried out between September and December 2021. The inclusion of participants met the following criteria: patients diagnosed with COVID-19 who had been hospitalized and were undergoing rehabilitation, that is, who had comprehensive care in HN and, therefore, could report on successes and challenges along the care continuum for the production of care trajectories. Since all of them met the study’s inclusion criteria, the selection was based on convenience, i.e., all patients attending the rehabilitation service could be invited to participate. Those with a physical or mental condition that made it impossible to be interviewed were excluded. The participants were approached in the waiting room of the rehabilitation service and the interviews were conducted on site, in an ample and adequate location. As consultations were carried out by appointment and the number of waiting patients was small, it was possible to guarantee both distancing and privacy. The interviews were carried out by the authors and guided by a semi-structured questionnaire designed to gather personal and sociodemographic data, followed by the pandemic experiences related to the social support and healthcare networks, whose dimensions and components are described in Box 1. The questionnaire was first administered in a pilot interview to adjust content and language, which was not included in the analysis.

The interviews were carried out in an atmosphere of empathy and interested conversation between the researcher and the participant, which is a relevant aspect in addressing an event that generates suffering and loss. There was an attempt to control to some extent the anticipated interaction between researcher and participants of such studies by defining beforehand the dimensions and components of interest according to the research objectives, even though unforeseen contextual variables were considered. As most patients were accompanied (spouses and/or children), in many interviews there was spontaneous interaction of family members, whose contributions were transcribed and incorporated into the general corpus of the content analysis, since they added complementary memories to the description of the patients’ care trajectories. The recordings lasted 40 minutes on average and all audios were fully transcribed. Data collection was interrupted based on theoretical saturation criteria ²¹21. Glaser BG, Strauss AL. The discovery of grounded theory: strategies for qualitative research. Nova York: Aldine de Gruyter; 1967., that is, the inclusion of new participants was suspended when the data obtained began to present, in the researchers’ assessment, a certain level of repetition and convergence in the production of care trajectories. This analysis was performed continuously, from the beginning of the collection, considering each of the dimensions/components addressed in the interview questionnaire.

Analysis of results

A thematic analysis of the content of the interviews was carried out to identify and describe patterns or themes, following quality ensuring criteria, such as: complete and inclusive coding of each interview, selection of relevant excerpts grouped into themes and interpretive analysis of data ²²22. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3:77-101..

Then, the study aimed to reconstruct the care trajectories at three different occasions that express the experiences and journeys of COVID-19 patients in HN: prevention, support and diagnosis measures; hospitalization; post-COVID-19 care, rehabilitation and support. Within those three different instances, we identified components related to social support, access, comprehensiveness, care continuity and care satisfaction. Box 1 presents the three dimensions and components, based on studies on the subject ¹⁹19. Galvão JR, Almeida PF, Santos AM, Bousquat A. Percursos e obstáculos na Rede de Atenção à Saúde: trajetórias assistenciais de mulheres em região de saúde do Nordeste brasileiro. Cad Saúde Pública 2019; 35:e00004119.^,2323. Raupp LM, Dhein G, Medeiros CRG, Grave MTQ, Saldanha OMFL, Santos MV, et al. Doenças crônicas e trajetórias assistenciais: avaliação do sistema de saúde de pequenos municípios. Physis (Rio J.) 2015; 25:615-34.^,2424. Fausto MCR, Campos SMS, Almeida PF, Medina MG, Giovanella L, Bousquat A, et al. Therapeutic itineraries for patients with cerebrovascular accident: fragmentation of care in a regionalized health network. Rev Bras Saúde Mater Infant 2017; 17 Suppl 1:S63-72. that initially guided the interview questionnaire and emerging empirical data, from which stemmed the interpretation and presentation of results.

Ethics aspects

The study was approved by the Human Sciences Research Ethics Committee of the Fluminense Federal University (opinion n. 4,456,756). The participants signed the informed consent form and were identified by numbers, according to the order in which the interviews were carried out, to guarantee anonymity.

Results

Twenty-seven participants were interviewed, most of whom were over 60 years old (18); with family income of up to two minimum wages (17); who received some type of social benefit (17); whose first contact with health services was through the Family Health Strategy (FHS) (14); who self-declared black or brown (15); and who lived with their spouse (17).

Eight participants reported having some kind of private health insurance, including low-cost plans paid by month and coinsurance systems for outpatient appointments and lab tests. Regarding habits, almost all were non-smokers and did not consume alcoholic beverages (Table 1).

COVID-19 prevention, support and diagnosis measures: from TV newscasts to family support

The main preventive measures adopted were related to sanitizing food and clothes and body hygiene. There were frequent reports of taking showers and washing all clothing items after going out, as well as of intense hand sanitizer use, measures that were still maintained. Few patients mentioned the distribution of face masks and hand sanitizers by health centers or other public bodies.

The main source of information about COVID-19 was television, especially newscasts, mentioned by all patients. Many reported having watched a lot of TV due to social distancing measures (Box 2). One of the interviewees pointed out divergent information given by different broadcasters: “This station... Globo says one thing, Record says another. It’s never quite the same, you know? Then you start wondering...” (E9).

Information about symptoms was considered important as it encouraged the adoption of preventive actions such as social distancing and staying home. The participants considered themselves to be well-informed about COVID-19.

The closest family members (spouse, children, grandchildren) were the only support network to help with daily and outside activities, aiming to avoid crowded places such as supermarkets and drugstores (Box 2). Only one patient received food baskets from a municipal program and almost none of them (26) mentioned any type of community mobilization in the neighborhood to help during the pandemic. Family support was also important in seeking care when COVID-19 symptoms appeared.

Most participants reported having complied with social distancing measures, including the interruption of physical, leisure and collective activities. Most of them were not doing any kind of exercise at the time of the interview, although ten participants claimed they had stopped due to the disease (Table 1).

Among the 27 participants, 17 were diagnosed with COVID-19 in hospitals; 4 in emergency care units (UPA); 4 in specialized policlinics with emergency care; 1 in a basic health unit (UBS); and 1 was unable to identify the kind of health facility.

After diagnosis, 24 participants were transferred to HMON, usually on the same day. The fact that most were in the age group of highest risk and had comorbidities increased their concern and psychological distress. Particularly harrowing were the reports of elderly couples who lived alone and one of them fell ill (Box 2).

Hospitalization experience: from fear to the perception of being cared for

There were no reports of difficulties in being admitted to the municipal referral facility, nor of waiting or relocation. However, following the referral for hospitalization, the main fear was the possibility of intubation, plus the fear of dying and having no contact with the family (Box 3).

Despite the initial uneasiness, satisfaction with the care provided during hospitalization was unanimous, especially in terms of user embracement, care provided by the multidisciplinary team and attention of all staff - from reception to cleaning and clinical staff. Despite the severity of the situation, from a clinical point of view, most interviewees appreciated such attributes, which produced a feeling of reassurance regarding the treatment (Box 3).

The positive feedback about the care provided at HMON was based on comparison with private services and the perception that such standards were not offered in other public health facilities (Box 3).

Another highly appreciated element referred to the systematic process of communication with family members. All interviewees reported receiving virtual visits via bedside videoconferencing, coordinated by the social worker and psychologist. This contact was of great value not only for the patients, some of whom were moved when describing them, but also for the family members who stayed at home, many of whom were also older adults in social isolation (Box 3).

In addition to the virtual visits, doctors would call relatives to inform them about the health status or treatment. “Sincere” communication by physicians was valued by participants and family members. Relatives had the staff’s contact information and could request additional information (Box 3).

Another appreciated aspect was the issuance of a post-discharge report with the hospitalization record and care plan to be initiated or continued in other HN facilities (Box 3).

Due to the quality of care, some interviewees suggested the hospital should be used for all types of care, so that the population might have access to humanized care: “This should not be just for COVID, but also for others things people need” (E19).

Post-COVID-19 care, rehabilitation and support: life goes on

Many after effects were reported following hospital discharge, the most frequent being: overall weakness, especially in the legs; tiredness; lack of balance and appetite; leg swelling; persistent cough; heart and breathing problems; diarrhea; and sleeping difficulties (Box 4).

One aspect associated with the post-discharge period relates to the burden on family members. Post-COVID-19 effects required more care from those responsible for the patients, who felt exhausted and, at the same time, neglected self-care. The after effects increased the psychological suffering of patients due to physical limitations and the overload caused to family members (Box 4).

While access to hospitalization was unhindered and provided quality care, post-discharge follow-up was considered insufficient/non-existent by all interviewees, due to difficulty of access in the public network, whether for new problems and rehabilitation or for monitoring of pre-existing comorbidities (Box 4).

Reports by patients of self-medication and search for appointments and complementary tests after discharge were significant, due to medical recommendation but also on their own account, for fear of after effects of the disease. Many reported having used private services for appointments with pulmonologists and imaging tests, citing the long waiting times at SUS (Box 4).

Of the 27 interviewees, only 14 reported being assigned to FHS teams, but hardly recognizing them as a regular health service. Low-cost health insurance plans were mentioned by patients and relatives. Difficulty in accessing the public network, for both PHC appointments and specialized procedures, was the main reason for using such services to ensure regular follow-up and check-ups. The need for coinsurance payments, in addition to the monthly fees, made some patients consider it more advantageous to look up and pay for private health providers (Box 4).

There was a feeling of post-discharge “care vacuum” until the opening of the rehabilitation service at HMON in August 2021. According to some patients, health staff in PHC and polyclinics claimed they were not prepared to treat post-discharge effects of COVID-19 (Box 4).

Most of the respondents were contacted by the hospital itself to assess the need for rehabilitation, as they had been admitted to that facility. Other means of access were reported: participants who found out about the service and made direct contact, cases of referral by PHC or polyclinic, personal contact with hospital staff. One of the patients considered that access to rehabilitation would be more difficult for patients who had not been admitted to HMON, as the referral procedure was unknown and the other HN services were not yet making referrals at that point.

As in the case of hospitalization, the feedback on rehabilitation was quite positive. Introduction of the service resolved the difficulties in seeking care in HN and, according to reports, maintained the same standards of quality and humanization of hospitalization. The respondents praised the consultation with a general practitioner for an overall evaluation and, subsequently, the care provided by a multidisciplinary team that included speech therapist, nutritionist, psychologist and physical therapist. Due to difficulties in accessing post-COVID-19 care in the public network, there was an expectation that the rehabilitation service would meet all health demands (Box 4).

Discussion

In this study, the use of a new and challenging condition - COVID-19 - afforded an expanded view on the points of interdiction of care trajectories, imparting a sense of urgency in guaranteeing access to and integration of health care ¹1. Savedoff WD, Bernal P, Distrutti M, Goyeneche L, Bernal C. Going beyond normal challenges for health and healthcare in Latin America and the Caribbean exposed by Covid-19. Washington DC: Inter-American Development Bank; 2022. (Technical Note, IDB-TN-2471)..

Most participants were older adults with comorbidities, the population group most susceptible to the more severe forms of the disease and to the economic, racial and gender inequalities that affect aging ²⁵25. Batista SR, Souza ASS, Nogueira J, Andrade FB, Thumé E, Teixeira DSC, et al. Comportamentos de proteção contra COVID-19 entre adultos e idosos brasileiros que vivem com multimorbidade: iniciativa ELSI-COVID-19. Cad Saúde Pública 2020; 36:e00196120.^,2626. Mazuchelli LP, Soares MFP, Noronha DO, Oliveira MVB. Discourses on ag(e)ing individuals, social inequality, and the effects of social distancing in times of Covid-19. Saúde Soc 2021; 30:e200885.. Even so, there were few reports of longitudinal follow-up by any SUS service during the pandemic or of support networks other than the family.

In the care trajectories, hand washing was identified as one of the main measures to prevent COVID-19, a practice with the highest adherence in Brazil, according to other studies, especially among older adults ²⁷27. Villela EFM, López RVM, Sato APS, Oliveira FM, Waldman EA, Van den Bergh R, et al. COVID-19 outbreak in Brazil: adherence to national preventive measures and impact on people's lives, an online survey. BMC Public Health 2021; 21:152.. Although wearing face masks was considered important, washing and sanitizing food, clothes and body were highlighted in the reports. These measures were especially emphasized at the beginning of the pandemic.

While greater attention is given to social media, the findings of this study revealed the relevance of television as the main means of accessing information about COVID-19, especially TV newscasts, which seem to have a widespread penetration among older adults, according to this study. The necessary occupation of traditional media by health authorities constitutes a learned lesson, one to be better understood in terms of form, exposure and content ²⁸28. Chao M, Xue D, Liu T, Yang H, Hall BJ. Media use and acute psychological outcomes during COVID-19 outbreak in China. J Anxiety Disord 2020; 74:102248..

The results indicate that, with regard to COVID-19 diagnoses, most were performed in SUS hospitals, without no relevant reports of difficult access. However, it should be noted that the participants underwent hospitalization, which suggests that these were more serious cases compared to the general population that sought testing in different types of services, both public and private ²⁹29. Kameda K, Barbeitas MM, Caetano R, Löwy I, Oliveira ACD, Corrêa MCDV, et al. Testing COVID-19 in Brazil: fragmented efforts and challenges to expand diagnostic capacity at the Brazilian Unified National Health System. Cad Saúde Pública 2021; 37:e00277420..

Despite the lack of beds, especially for COVID-19 intensive care, in several situations ³⁰30. Noronha KVMS, Guedes GR, Turra CM, Andrade MV, Botega L, Nogueira D, et al. Pandemia por COVID-19 no Brasil: análise da demanda e da oferta de leitos hospitalares e equipamentos de ventilação assistida segundo diferentes cenários. Cad Saúde Pública 2020; 36:e00115320.^,3131. IHME COVID-19 Health Service Utilization Forecasting Team. Forecasting COVID-19 impact on hospital bed-days, ICU-days, ventilator days and deaths by US state in the next 4 months. medRxiv 2020; 30 mar. https://www.medrxiv.org/content/10.1101/2020.03.27.20043752v1.
https://www.medrxiv.org/content/10.1101/... , no admission difficulties were identified in care trajectories thanks to the creation of a specific municipal referral facility. Nonetheless, this finding must be analyzed with caution, since the participants were recruited in the rehabilitation service that operates in the actual hospital.

The initial fears of hospitalization and intubation were assuaged by the care provided at the hospital, with strong positive feedback regarding all staff. Besides the actual physical structure, cordiality and respect contribute to the perception of hospitality and are appreciated by patients who underwent treatment for COVID-19 ³²32. Rodrigues JLSQ, Villar VCFL, Duarte SCM, Corrêa CDTSO, Reis EC, Janotti L. Perspectiva do paciente sobre a assistência à saúde no contexto da Covid-19. Saúde Debate 2022; 46(spe 1):165-80., as also found in this study. Nevertheless, the benchmark of excellence for comparison purposes was private hospitals with great media presence for being regularly frequented by public authorities, corroborating the identification of SUS services as being of low quality.

Becoming ill with COVID-19 evokes the experience of toxic and dangerous bodies due to the need for isolation during hospitalization, with no visits allowed ³³33. Missel M, Bernild C, Westh Christensen S, Dagyaran I, Kikkenborg Berg S. The marked body: a qualitative study on survivors embodied experiences of a COVID-19 illness trajectory. Scand J Caring Sci 2022; 36:183-91.. Among hospitalized patients in the state of Rio de Janeiro, 64.7% reported having received news or some contact from relatives ³²32. Rodrigues JLSQ, Villar VCFL, Duarte SCM, Corrêa CDTSO, Reis EC, Janotti L. Perspectiva do paciente sobre a assistência à saúde no contexto da Covid-19. Saúde Debate 2022; 46(spe 1):165-80.. In this study, virtual bedside visits were confirmed by all participants, which is another aspect considered relevant for high satisfaction with the hospital service. Having access to clear information is related to a greater perception of safety and satisfaction with the treatment ³⁴34. Doubova SV, Infante-Castañeda C, Roder-DeWan S, Pérez-Cuevas R. User experience and satisfaction with specialty consultations and surgical care in secondary and tertiary level hospitals in Mexico. BMC Health Serv Res 2019; 19:872.. In this sense, both telephone contacts and virtual visits are “soft-hard” technologies that should be widely adopted, since distance, transportation costs and lack of time are factors that can make it difficult to routinely visit hospitalized patients.

The institutionalization of the post-discharge report with the treatment plan is another aspect that contributes to continued care and low readmission ³⁵35. Costa MFBNA, Ciosak SI, Andrade SR, Soares SF, Pérez EIB, Bernardino E. Continuity of hospital discharge care for primary health care: Spanish practice. Texto & Contexto Enferm 2020; 29:e20180332., although in this study there was no follow-up by the other network services.

According to the reports, the greatest difficulties in using and accessing health services occurred in the third care trajectories period, represented by post-discharge needs. Transitions between care environments can be disruptive for patients and relatives, with negative effects in different areas of life, especially for older adults affected by post-COVID-19 effects ³⁶36. Faria LP, Rafael AP. Dimensão psicossocial da pandemia do Sars-CoV-2 nas práticas de cuidado em saúde de idosos. Interface (Botucatu) 2022; 26:e210673.. Long COVID is a complex condition whose nature, frequency and etiology are still undefined ³⁷37. Michelen M, Manoharan L, Elkheir N, Cheng V, Dagens A, Hastie C, et al. Characterising long COVID: a living systematic review. BMJ Glob Health 2021; 6:e005427.. In this sense, in addition to defining management, rehabilitation and clinical studies to improve long-term results ³⁷37. Michelen M, Manoharan L, Elkheir N, Cheng V, Dagens A, Hastie C, et al. Characterising long COVID: a living systematic review. BMJ Glob Health 2021; 6:e005427., more in-depth research is needed on the experience of using health services due to COVID-19 after effects, especially from the perspective of patients.

Caring for the physical and mental health of people infected with COVID-19 and their families will remain a challenge for health services ³⁸38. Ornell F, Schuch JB, Sordi AO, Kessler FHP. "Pandemic fear" and COVID-19: mental health burden and strategies. Braz J Psychiatry 2020; 42:232-5. due to the postponement of regular care, intensified by social distancing. In Brazil, studies show that individuals with comorbidities stayed more at home, with possible effects on the worsening of chronic problems ²⁵25. Batista SR, Souza ASS, Nogueira J, Andrade FB, Thumé E, Teixeira DSC, et al. Comportamentos de proteção contra COVID-19 entre adultos e idosos brasileiros que vivem com multimorbidade: iniciativa ELSI-COVID-19. Cad Saúde Pública 2020; 36:e00196120.. The need to intensify local health surveillance, with a special focus on post-COVID patients and their immediate family, will more than ever require the family and community approaches of FHS, which were undermined by the new federal policy guidelines and funding ³⁹39. Mendes A, Melo MA, Carnut L. Análise crítica sobre a implantação do novo modelo de alocação dos recursos federais para atenção primária à saúde: operacionalismo e improvisos. Cad Saúde Pública 2022; 38:e00164621., which favor, for example, other models of PHC teams more focused on clinical and individual interventions.

A perception of post-discharge “care vacuum” prevailed in this study. The sense of abandonment between hospital discharge and the beginning of rehabilitation represented a break in care trajectories. The support of PHC and specialized SUS services proved to be absent or inaccessible, unable to meet the demands for rehabilitation and pre-existing conditions. The shortfalls in the public network provide yet another opportunity for the offer private health services in the form of low-cost insurance plans or “discount vouchers”, unregulated by the Brazilian National Supplementary Health Agency (ANS) ⁴⁰40. Fontenelle LF, Camargo MBJ, Bertoldi AD, Gonçalves H, Maciel ELN, Barros AJD. Cobertura por plano de saúde ou cartão de desconto: inquérito domiciliar na área de abrangência da Estratégia Saúde da Família. Cad Saúde Pública 2017; 33:e00141515.. Part of the patients and relatives sought of their own accord, and without any guarantee of quality, specialized consultations to treat new and old health problems, increasing the development of solitary, fragmented and privatized care trajectories.

The results pointed to an overestimation of hospital and specialized care as an ideal model for regular monitoring of health problems, which may have been exacerbated by the emphasis on hospital care as the main strategy for coping with COVID-19 ⁴¹41. Plagg B, Piccoliori G, Oschmann J, Engl A, Eisendle K. Primary health care and hospital management during COVID-19: lessons from Lombardy. Risk Manag Healthc Policy 2021; 14:3987-92.^,4242. Rawaf S, Allen LN, Stigler FL, Kringos D, Quezada Yamamoto H, van Weel C, et al. Lessons on the COVID-19 pandemic, for and by primary care professionals worldwide. Eur J Gen Pract 2020; 26:129-33.. Likewise, the need to identify and treat after effects seems to have increased confidence in specialists. On the other hand, the public network proved to be poorly suited to deal with post-hospitalization demands, which, in the case studied, was revealed in the difficulty to access PHC and the long waiting times for specialized care.

Such results express the pressing need to strengthen PHC. Studies show a perception of continuity of care among patients who were able to access general practitioners during the pandemic, even if remotely ¹⁷17. Deml MJ, Minnema J, Dubois J, Senn O, Streit S, Rachamin Y, et al. The impact of the COVID-19 pandemic on the continuity of care for at-risk patients in Swiss primary care settings: a mixed-methods study. Soc Sci Med 2022; 298:114858.. Experiences of trust and familiarity seem to be decisive in the decision to opt for regular care with the family doctor rather than seeking treatment with unknown specialists ¹⁷17. Deml MJ, Minnema J, Dubois J, Senn O, Streit S, Rachamin Y, et al. The impact of the COVID-19 pandemic on the continuity of care for at-risk patients in Swiss primary care settings: a mixed-methods study. Soc Sci Med 2022; 298:114858.. In this sense, the COVID-19 pandemic reinforces the need for quality primary care and not the other way around. According to The Lancet Global Health Commission ⁴³43. Hanson K, Brikci N, Erlangga D, Alebachew A, Allegri M, Balabanova D, et al. The Lancet Global Health Commission on financing primary health care: putting people at the centre. Lancet Glob Health 2022; 10:e715-72., public funding, a key element of health systems, is insufficient and feeds the vicious cycle that undermines the credibility and quality of PHC and encourages the search for alternative care.

As limitations of the study, most participants were recruited in the referral hospital where they were treated and were undergoing rehabilitation. Therefore, these are experiences that may not reflect the situation found among patients admitted to other hospitals or who suffered after effects without having had to be hospitalized. In addition, the viewpoint of health management and staff was not considered. Nevertheless, this is an unprecedented study that reconstructs the care trajectories of patients and family members who underwent intense and extensive experiences resulting from COVID-19 and make it possible to analyze the operating characteristics of local health systems. Future studies should aim at producing a logical model for planning and evaluating measures of prevention, social support, treatment and rehabilitation of COVID-19, based on different sources of information and validated.

Conclusions

Solitary and discontinuous care trajectories reveal several barriers to the care of individuals and families that, at the same time, represent areas for intervention and improvement for the management of this and other local health systems, in terms of both organization and practice. This emphasizes the need for expanded social support structures to minimize the burden on families; communication by health authorities in different media; and measures to resume care for pre-COVID-19 conditions and strengthen PHC so that it can fulfill its role of accessible first contact and care coordination, supported by specialized public services and rehabilitation networks, aligned with the principles of humanized care. One of the effects of the perception of a “care vacuum” in the post-discharge period was the search for services in the private sector, which compromises family budgets and increases fragmentation and the direct search for specialists.

Prominent among the positive aspects was the perception of quality hospital care and related rehabilitation, especially with regards to commitment and support. This finding is very significant, as it is part of a situation in which healthcare staff were subjected to work overload and high daily stress, which did not prevent patients and relatives from being the focus of care, with the help of communication mediating technologies, resulting in satisfaction, respect, trust and reassurance regarding treatment.

Identifying and caring for post-COVID-19 after effects are global challenges and have a multidimensional impact on the lives of survivors and their support network. In addition to health services that offer comprehensive, family and community follow-up, intersectoral actions should be implemented, including strategies in the area of mental, physical and leisure health, besides maintaining income transfer policies to guarantee subsistence conditions.

Acknowledgments

The authors are grateful to the Municipal Government of Niterói, in partnership with Fluminense Federal University, for funding the study through the Public Notice of the Program for the Development of Applied Projects (PDPA); and to the Brazilian National Research Council (CNPq) for supporting P. F. Almeida through the research productivity grant (PQ).

References

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