Care for older adults with long Covid: understanding Healthcare services provided by the health system

Abstract

Objective  To understand the care provided to older adults in healthcare services concerning long Covid from the perspective of users.

Method  This study employed a qualitative methodological approach with an exploratory design, involving 41 older adults from the State of Paraná who were diagnosed with Covid-19 in 2020 and exhibited persistent symptoms approximately 18 months after infection. Data collection and analysis were conducted between February and July 2022 through semi-structured telephone interviews. The analysis followed initial and focused coding steps.

Results  After exploring the results, three categories emerged for discussion: episodic reactive care, which demonstrates how care was delivered; uniprofessional care, which reveals which professionals provided assistance; and reflecting on the care received, which evidences satisfaction with the healthcare services provided.

Conclusion  The analysis of older adults' perspectives regarding the care received for persistent long Covid symptoms was positive, while also highlighting the presence of a reactive and episodic healthcare culture, where services are sought primarily for curative purposes.

Keywords
Post-Acute Covid-19 Syndrome; Health of Older Adults; Primary Health Care; Patient Satisfaction

Resumo

Objetivo  compreender o atendimento ofertado às pessoas idosas nos serviços de saúde em relação à covid-19 longa na análise dos usuários.

Método  A pesquisa utilizou-se de uma abordagem metodológica qualitativa, de caráter exploratório, realizada com 41 pessoas idosas do Estado do Paraná com diagnóstico de covid-19 no ano de 2020 e apresentaram resquícios sintomáticos cerca de 18 meses após a infecção. A coleta e análise dos dados ocorreram entre os meses de fevereiro e julho de 2022 por meio de entrevistas telefônicas semiestruturadas; na análise, foram utilizadas as etapas de codificação inicial e focalizada.

Resultados  Após a exploração dos resultados, despontaram três categorias para debate: atenção reativa episódica, que demonstra a forma com que o atendimento ocorreu; cuidado uniprofissional, que revela quais profissionais realizaram a assistência; e, por fim, refletindo acerca do cuidado recebido, que evidencia a satisfação com a atenção à saúde recebida.

Conclusão  A análise da pessoa idosa em relação aos atendimentos recebidos devido aos sintomas persistentes da covid-19 longa foi positiva, e ressalta ainda a presença da cultura de um atendimento de saúde reativo e episódico, em que consideram a procura do serviço apenas com cunho curativo.

Palavras-Chave:
Síndrome de Covid-19 Pós-aguda; Saúde do Idoso; Atenção Primária à Saúde; Satisfação do Paciente

INTRODUCTION

Approximately one year after the onset of the Covid-19 pandemic, in mid-2021, healthcare systems began encountering demands related to its long-term consequences, which remained poorly understood. The condition known as long Covid began to be observed primarily in individuals who developed moderate and/or severe cases following the isolation period¹.

This chronic condition, occurring in the aftermath of Covid-19, is characterized by the presence of signs and symptoms that may appear up to three months after infection and persist for at least two months without an alternative diagnosis to explain them. Symptoms may re-emerge after an initial full recovery or persist from the acute phase of the disease (four weeks)¹,².

Covid-19 and, consequently, long Covid can affect people of any age. However, individuals aged 65 and older bear a disproportionately high disease burden³. Symptoms such as cough, fever, dyspnea, fatigue, myalgia, and joint pain are commonly reported by older adults affected by long Covid. A cross-sectional study of 165 older adults monitored after hospital discharge due to acute COVID-19 found that 80% of patients reported persistent symptom⁴.

In Brazil, the healthcare system encompasses both public and private services. The public sector, represented by the Unified Health System (SUS), offers care free of charge, while the private sector includes supplemental healthcare services provided by Health Insurance Plan Operators (OPS), which are contracted by users, as well as private healthcare services paid through monthly fees and/or per consultation. These services coexist complementarily, offering a wide variety of healthcare professionals and services. This arrangement allows users to access both modalities of services simultaneously, according to their needs and financial capabilities⁵,⁶.

Older adults have a history of more frequent healthcare system utilization compared to other population groups due to their progressive decline in immune system function, multimorbidities, vulnerability to infections, and need for regular health monitoring. Having been classified as a high-risk group for Covid-19 by the World Health Organization (WHO), older adults have required even more attention regarding emerging health needs related to long Covid symptoms⁷,⁸.

Due to its continental dimensions, inequalities, and particular characteristics of each federal unit, Brazil's healthcare system faces significant challenges in uniformly addressing the population's health needs in general, and specifically the demands brought by older adults concerning long Covid. These factors create a major challenge in adapting and maintaining the quality and effectiveness of healthcare services⁹,¹⁰.

Understanding how healthcare services provide care is an essential aspect of qualifying patient-centered care, which is based on four fundamental principles: treating patients with dignity, providing coordinated support, delivering personalized care, and promoting self-care and autonomy. The healthcare system users' perspective is particularly valuable in assessing this quality, as it considers the viewpoint of those receiving care and validates their experience¹¹,¹².

This study stems from the importance of understanding the provision of public, contracted, and private healthcare services, examining their convergences, distinctions, and interconnections from the perspective of those who received them and presented symptoms of long-term COVID-19. Furthermore, it strengthens the core functioning of the national healthcare system, particularly during critical situations such as a pandemic, potentially establishing foundations for organizing new strategies for future cases.

Thus, the question arises: How was the care provided by healthcare services to older adults with long Covid, according to users' analyses? Accordingly, this study aims to understand the care provided to older adults in healthcare services concerning long Covid from the users' perspective.

METHOD

This is a qualitative study based on Constructivist Grounded Theory (CGT)¹³, conducted with older adults residing in the State of Paraná, Brazil, who tested positive for Covid-19 via RT-PCR in 2020 and, 18 months after the acute infection, still exhibited symptoms attributed to long Covid.

This study is part of the master's dissertation "Meeting the Health Needs and Demands of Older Adults with long Covid," which is linked to the research project "Longitudinal Follow-up of Adults and Older Adults Discharged from Covid-19 Hospitalization - Covid-19 Cohort Paraná/UEM," developed in partnership with the State Health Department of Paraná (SESA/PR).

Participants were selected by convenience sampling from the database of individuals monitored by the Paraná/UEM Covid-19 Cohort, focusing on those exhibiting symptoms related to long Covid 18 months after the acute phase of the disease. Older adults who experienced mild cases treated in outpatient settings were identified through 'Notifica Covid-19 Paraná,' a state-level database providing real-time information on Covid-19 in Paraná.

In contrast, older adults with moderate and severe cases requiring care in wards or Intensive Care Units (ICUs)¹⁰, respectively, were selected from the Influenza Epidemiological Surveillance Information System (SIVEP-Influenza), a national database monitoring Severe Acute Respiratory Syndrome (SARS) caused by respiratory viruses.

The inclusion criteria were: older adults residing in the State of Paraná, diagnosed with Covid-19 confirmed by laboratory testing in 2020, who received outpatient, ward, and/or ICU care during the acute phase of the disease and were reported to SESA/PR, and who presented symptoms attributed to long Covid 18 months post-infection.

Participants who received care in Paraná but did not reside in the state, as well as those identified as deceased at the time of telephone contact, were excluded from this study. The primary caregiver was interviewed on behalf of older adults with speech or cognitive limitations.

A total of 104 older adults were eligible for the study, of whom 41 participated, using theoretical saturation as a strategy to conclude data collection. Theoretical saturation is a systematic method for determining qualitative sample size, involving eight procedural steps: recording raw data; immersion in each record; compiling individual analyses; grouping themes; naming the data; allocating the data; verifying theoretical saturation; and, finally, visualizing theoretical saturation¹⁴.

Contact with participants was made via telephone calls, with recordings made on an electronic device using the Android Cube ACR® app. During the same call, the older adult was invited to participate in the study, and only after verbal consent was the interview conducted. The interview began with the reading of the Informed Consent Form (ICF), and at the end of the call, the ICF was sent via conventional mail or email, according to the participant's preference. Subsequently, the interviews were fully transcribed, and their content was verified for accuracy.

The interviews took place between February and July 2022, approximately 18 months after the acute infection. They were conducted by a group of researchers, including master's and doctoral students, as well as master's and doctoral degree holders in nursing, all part of the same research group. The interviews followed a semi-structured intensive interview guide¹³ divided into two parts: the first part collected objective sociodemographic data, such as age, sex, marital status, family income, education level, municipality of residence, Covid-19 severity, municipality of treatment, and type of healthcare service utilized; the second part consisted of open-ended questions that guided the interviewer in systematically gathering subjective information related to the research objective.

The interview began with a broad question about the older adult's health status: 'Tell me how your health has been since having Covid-19.' This was followed by more specific questions about healthcare services received: 'After having Covid-19, did you need to use any healthcare services for your new health conditions? If yes, why? If no, why not?', 'What healthcare services have you sought out and how did you access these services?' and 'Have the healthcare services you sought met your health needs after Covid-19? Why? Please comment on the healthcare you received.'

The data analysis occurred concurrently with data collection, following the assumptions of CGT, using the analytical techniques of initial and focused coding as proposed by Charmaz. To support the analysis of the materials, MAXQDA® 2022 software (license number 333214973) was used, enabling a deeper investigation of the qualitative data.

Initial coding involves the thorough analysis of each word and fragment of the interview, providing an in-depth understanding of the content. Then, data that occur most frequently are condensed, forming provisional codes. In focused coding, the most recurring and relevant codes are identified, refined in a deeper analysis, and categorized as source codes or result categories¹³.

The conceptual framework is based on the quality of care attribute "Person-Centered Care," which focuses on individual care, ensuring respect for the patient's values and preferences¹¹. The Consolidated Criteria for Reporting Qualitative Research (COREQ) were used to report the results in this manuscript to ensure the reliability and quality of the methodological process¹⁵.

In presenting the results, the interviews were edited without distorting the original content and were coded with the letter "E" (interviewee), followed by sequential Arabic numbering according to the order of the interviews, and the treatment locations designated as outpatient, ward, and ICU.

Considering the conceptual framework employed, the attribute of person-centered care is based on four basic principles: treatment with dignity, coordinated support, encouragement of self-care and autonomy, and personalized care. These principles align with the aim of this study, which is to understand, from the perspective of older adults, the care received regarding long Covid¹². Furthermore, the chosen methodological framework allowed for a coherent exploration of the theme and added robustness to the data analysis¹³.

All requirements set forth by Resolution 466/12 and 510/16 of the National Health Council, which regulate research involving human subjects, as well as Resolution 738/2024 regarding the use of databases in research with human subjects, were met. The study was approved by the Ethics Committee of the State Health Department (opinion number 4.214.589 and CAAE 34787020.0.3001.5225) and also by the Ethics Committee of the Universidade Estadual de Maringá (opinion number 4.156.272 and CAAE 34787020.0.0000.0104).

RESULTS

A total of 41 older adults who experienced long Covid participated in the study. The predominant age group was 60-69 years (28; 68%), with 22 (54%) males and 19 (46%) females. The majority of participants were married (30; 73%), had incomplete elementary education (15; 37%), and had a family income between one and two minimum wages (13; 32%). Of the total, 10 (24%) lived in the municipality of Curitiba and experienced a moderate form of Covid-19 during the acute phase, receiving treatment in a hospital ward (14; 34%). A total of 24 (58%) received treatment in their municipality of residence, and four (10%) had to travel to another city for care. Among them, 29 (71%) exclusively used the SUS, while 12 (29%) reported having health insurance, using both services in a mixed manner.

Different paths were taken by elderly individuals regarding their search for healthcare services. For SUS care, the results show that elderly individuals initially sought care at the Emergency Care Unit (UPA) or the Basic Health Units (UBS), with subsequent referral by the general practitioner to specialists through the National Regulation System (SISREG), a Ministry of Health tool that manages the regulation of consultations, examinations, and health procedures.

Conversely, the search for private healthcare services and/or private OPS was less complicated, meaning individuals directly sought the specialized healthcare professional in the area of interest. Regardless of the healthcare service, participants sought care for specific long Covid symptoms, aiming for attention from specialized professionals. There were no reports of active searches by users or scheduled healthcare appointments, either public or private.

Therefore, when evaluating the interviews, three categories emerged for discussion: reactive and episodic care; uniprofessional care; and analyzing care.

The category 'reactive and episodic care' shows that the system responded to specific symptoms presented by users, without active search and without a structured care schedule that would allow initial access and its continuity, as mentioned:

I didn’t go after it, and no one from the health center came here. I went to the UPA because of the shaking and back pain I was feeling, but they gave me some medication, and the pain improved, but the shaking not so much. (E11; ward).

The category ‘uniprofessional care’ reflects that the focus on the medical professional, particularly specialists, prevailed:

I only went for routine consultations, pulmonologist, cardiologist, but just routine stuff [...] I do everything through my health insurance. (E5; ICU)

I went to the ophthalmologist, the diabetes doctor [Endocrinologist], the health center doctor referred me. (E36; ward)

However, at times, other professionals—such as physiotherapists and speech-language pathologist—were also sought. In some cases, users were attended by more than one professional category, but in isolation:

Nowadays, I continue monitoring my chronic kidney issue, and the diabetes I now have, I also do physical therapy.’ (E15; ICU)

I’m going to see a speech-language pathologist because I feel like my tongue is a bit numb; it doesn’t work very well. (E39; ward)

Finally, the category ‘reflecting on the care received’ showed that, in general, older adults were satisfied with the care received both from SUS and private OPS, and this satisfaction was directly linked to the service/professional’s potential to resolve their health issues:

[...] Now, every year I go to the health center and have some tests to check how things are going. (E6; ward)

Since I have insurance, I always go to the doctor, get my tests done. Even the time I was hospitalized was through the insurance. They always treat me well. (E15; ICU)

There were statements reaffirming that, among the factors influencing the satisfaction of older adults with the healthcare system, were the intensity/urgency of the symptoms presented and the waiting time and reception received:

[...] They attended to me, I went there yesterday, solved it, did the tests, and I’ll get the results, so I can’t complain. (E32; outpatient)

[...] I went through very attentive doctors at the health center we go to. (E36; ward)

Similarly, some excerpts expressed gratitude for the reception provided by professionals and services that cared for the older adults:

But the care was very good, the kindness of the nurses and doctors, I received a lot of support from them while I was hospitalized. (E15; ICU)

[...] I thank SUS for taking care of me, and if it weren’t for SUS, I wouldn’t have been able to receive proper treatment because our financial situation doesn’t allow for that, and I know that private hospitalization is expensive. (E38; ward)

Finally, there were statements reflecting some dissatisfaction with the care received during the pandemic period, related to the high demand for care. However, these expressions also indicated that this dissatisfaction had been ongoing even before the advent of Covid-19:

I used to go to my health insurance, but now I don’t have it anymore, and at the health center, it was difficult, and it’s still hard to get in. It’s more about prioritization. (E2; ward)

Given the above, Figure 1 presents the decision-making journey of older adult users in their search for healthcare services:

Figure 1
Decision-making journey diagram for healthcare service search. Paraná, 2022.

It is important to note that both SUS users and health insurance users were, at some point, left to use private services on their own.

DISCUSSION

This study aimed to develop an understanding of the healthcare services provided to older adults who had acute Covid-19 in 2020 and exhibited long Covid symptoms 18 months after the illness, from the perspective of the users themselves. Understanding the user’s perspective provides the foundation for the continuation of treatment tailored to the real needs of the individual or group of individuals with similar characteristics, such as older adults¹².

The first two categories reflect the primary concerns of SUS long before the pandemic, and one of the issues the system has been working hard to address: reactive and episodic care, and uniprofessional care. These fit into the curative care model, which focuses on the disease rather than the individual and does not propose prevention, protection, or health recovery¹⁶.

Although Brazil is classified as a developing country, it has a consolidated healthcare system with SUS and supplementary health services, and from a technical standpoint, it is sufficiently structured to offer an adequate response to a public health emergency of the magnitude that was, and continues to be, Covid-19¹⁷.

However, the lack of mediation by federal agencies led states and municipalities to act in an isolated and heterogeneous manner, resulting in disparity in response and consequences across the national territory¹⁸.

In order for healthcare actions to be operationalized in a minimally equivalent manner, financial, structural, human, and professional resources, as well as adequate management and sufficient supplies, are required. These have gradually and subtly been withdrawn from SUS, resulting in underfunding, even before the pandemic. This dismantling of SUS brings with it chronic challenges that have been present since its inception, which were exacerbated by the arrival of the pandemic, and new obstacles that have emerged¹⁷.

At the beginning of the pandemic, investments were primarily focused on immediate and specialized care, the creation of ICUs, and the prioritization of hospital beds for acute and emergency treatment; concurrently, there was a reduction in elective care and in-person follow-ups for chronic conditions, with a significant increase in the waiting list for specialties related or not to the treatment of Covid-19¹⁸.

Regarding supplementary health, older adults who had contracts with OPS (supplementary health plans) have shifted to exclusive use of SUS due to financial restrictions imposed by the market, with increases in enrollment fees and monthly premiums, including additional costs for age and pre-existing chronic conditions. Care provided by OPS and private healthcare services follow a curative model, which is more widely spread among the older population compared to the care model that involves actions for promotion, prevention, protection, and recovery².

This curative treatment characteristic for acute conditions complicates the provision of adequate longitudinal care for chronic conditions necessary for older adults, who require medium- to long-term planning and follow-up. This reinforces the reactive and episodic care model for the older population provided by OPS⁶.

Additionally, there are reports that healthcare professionals feel unprepared and insufficient in number to handle the post- Covid-19 care needs, as other demands continue to exist. This context reinforces the culture of reactive, episodic, uniprofessional care without regular follow-up among older adults—often due to the worsening of chronic conditions or symptoms related to long Covid¹⁹.

The general population’s understanding of how the healthcare system works is limited, and it becomes even more insufficient when it comes to older adults. Therefore, their understanding of how healthcare services should operate (with respect to active search, follow-up of chronic conditions, and other actions advocated by SUS) is limited to what is seen on television and heard on the radio. Although these are considerable sources of information, they are not always reliable and/or complete²⁰.

Considering both the context of Covid-19 and long Covid, there was an infodemic regarding information about the disease and the virus, with many false claims about prevention and treatment. In this scenario, health education for the population gained prominence in an attempt to combat such fake news²¹.

During the pandemic period, which extends to the present day, there was an increase in the use of information and communication technologies for both interaction with family and friends, and for contacting and receiving healthcare services by older adults. The expanded use of communication technology served multiple purposes, such as a strategy to enhance social contact and reduce loneliness, particularly during the isolation recommendations, and to optimize healthcare services—highlighting and strengthening the practice of digital health and emphasizing the need to keep older adults engaged technologically²².

It is well-known that user satisfaction with healthcare services is closely related to the ability to resolve their health demands. Typically, satisfaction does not depend on how the service is sought, whether planned or reactive. While factors like speed and cordiality may influence the degree of satisfaction, the main factor for user contentment is the effective resolution of their health problem²².

This study has a limitation regarding data collection through phone calls due to the social isolation period during the Covid-19 pandemic, which may have excluded people without access to this technology and may not reflect additional aspects of the participants' experiences. Furthermore, the frequent use of phones for scams and telemarketing in Brazil may have created some initial distrust during data collection. However, this approach allowed the participation of older adults from different regions of the state. It is also important to note that, although the study considered various participant characteristics, socioeconomic, health, and cultural factors were not analyzed, which could impact both the course of long Covid and the experience with healthcare services.

The limitations do not invalidate the main strength of the study, which is the understanding of older adults who experienced long Covid regarding the care received within the Health Care Networks (HCN), highlighting important issues and weaknesses in healthcare services. This allows for an analysis to improve the quality of services offered to the population, especially older adults.

CONCLUSION

The analysis of older adults' perspectives on the care they received in relation to the persistent symptoms that characterize long Covid revealed that, despite the heterogeneity of the types of services sought (public, private, and/or Health Insurance Plan Operators), older adults were generally satisfied with the care they received. This satisfaction remained even when considering the particularities of their experiences, from the demands made by the users themselves to the overall healthcare journey.

Furthermore, it highlights the cultural tendency of older adults toward reactive and episodic care, where they view seeking care primarily for curative purposes, with little understanding of the importance of prevention and health promotion activities. Additionally, there is a strong trust placed in medical professionals, but without reaching the essential attributes of the Health Care Networks, which encompass interprofessional care. The perception of service users provides professionals with insights for directing healthcare actions and reinforces the importance of person-centered care with an emphasis on health education.

• Funding: Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq), Process number: 402882/2020-2 and Fundação Araucária, Process number: SUS2020131000103.
• DATA AVAILABILITY
  The dataset is not publicly available due to containing information that could compromise the privacy of the research participants. The study is available upon request from the corresponding author, Jessika Cavalaro.

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• ¹⁸ Vasques JDR, Peres AM, Straub M, Souza TLD. Organização dos sistemas de saúde no enfrentamento à covid-19: uma revisão de escopo. Revista Panamericana de Salud Pública [dataset] 2023;47(1):1-9. [acesso em mar./2024] disponível em https://doi.org/10.26633/RPSP.2023.38.
  » https://doi.org/10.26633/RPSP.2023.38
• ¹⁹ Landry MD, Van Den Bergh G, Hjelle KM, Jalovcic D, Tuntland HK. Traição de confiança? O impacto da pandemia global da COVID-19 em pessoas mais velhas. J Appl Gerontol [dataset] 2020;39(7):687–9. [acesso em abr./2024] disponível em https://doi.org/10.1177/0733464820924131
  » https://doi.org/10.1177/0733464820924131
• ²⁰ Tavares DMDS, Oliveira NGN, Marchiori GF, Guimarães MSF, Santana LPM. Idosos que vivem sozinhos: conhecimento e medidas de prevenção ao novo coronavírus. Rev Latino-Am Enfermagem [dataset] 2020;28(1):e3383. [acesso em abr./2024] disponível em https://doi.org/10.1590/1518-8345.4675.3383.
  » https://doi.org/10.1590/1518-8345.4675.3383
• ²¹ Yabrude ATZ, Souza ACMD, Campos CWD, Bohn L, Tiboni M. Desafios das Fake News com Idosos durante a Infodemia sobre Covid-19: Experiência de Estudantes de Medicina. Rev Bras Educ Med [dataset] 2020;44(1):e140. [acesso em jan./2024] disponível em https://doi.org/10.1590/1981-5271v44.supl.1-20200381.
  » https://doi.org/10.1590/1981-5271v44.supl.1-20200381
• ²² Araújo LMQ, Cândido VC, Araújo LV. Envelhecimento e telemedicina: desafios e possibilidades no cuidado ao idoso. Poliética [dataset] 2021;9(2):40–72. [acesso em jan./2024] disponível em https://doi.org/10.23925/politica.v9i2.56834.
  » https://doi.org/10.23925/politica.v9i2.56834.

Edited by

• Edited by: Rayssa Horácio Lopes

Data availability

The dataset is not publicly available due to containing information that could compromise the privacy of the research participants. The study is available upon request from the corresponding author, Jessika Cavalaro.

Publication Dates

• Publication in this collection
  24 Mar 2025
• Date of issue
  2025

History

• Received
  20 Aug 2024
• Accepted
  14 Jan 2025