Introduction

According to data published by the José Alencar Gomes da Silva National Cancer Institute (Instituto Nacional de Câncer - INCA), there are more than 100 types of cancers¹ which may arise from internal causes such as hormonal conditions, immune system disorders, and genetic mutations, as well as external causes associated with pollutants, solar radiation, and lifestyle habits. The latter are linked to 90 % of cancer cases.²⁾ It is worth noting that cancer (CA) is considered the leading public health issue worldwide, predominantly affecting individuals over the age of 65.³ However, although less frequently, cancer also affects young adults. ⁴

Young adults are defined as individuals aged between 15 and 29 years. ⁵ The risk of developing CA in young people is associated with high rates of genomic mutations in cells, the multiple stages of disease pathogenesis, or the inheritance of alleles predisposing to CA, compounded by external factors that may contribute to disease development. ⁴

Regarding oncological treatment, its aggressiveness raises concerns, as it can impair the immune system, leading to immunosuppression and increased susceptibility to infectious diseases. ⁶ Therefore, improved care and precautionary measures are deemed essential, as cancer patients are at greater risk of severe respiratory complications compared to patients with other pathologies. Additionally, cancer patients may experience more rapid clinical destabilization, often requiring intensive care unit (ICU) admissions. This need for heightened care becomes even more evident in the context of a pandemic such as COVID-19.⁷

COVID-19, a respiratory infection caused by the SARS-CoV-2 virus, can progress to severe conditions, including respiratory failure, which in some cases may result in death. Transmission occurs through contact, droplets, or aerosols. ⁸ In response, social distancing and isolation were crucial strategies to mitigate the disease and protect public health and safety. However, these measures impacted the general population and disrupted healthcare services. ⁹

A study conducted in the United States investigated the pandemic’s impact on healthcare systems, revealing delays in consultations, diagnostic tests, surgeries, chemotherapy, radiotherapy, and physiotherapy, raising concerns about cancer screening, diagnosis, and treatment. ¹⁰ A similar situation was observed in Brazil, specifically in the state of Bahia, regarding radiotherapy services. A 12 % decrease in first consultation appointments was identified in 2020 compared to the same period in the year prior to the pandemic. Simultaneously, researchers noted a worsening in tumor staging, leading to an increase in secondary metastases in 2020. ¹¹

These delays caused anxiety and distress among individuals undergoing cancer treatment, compounded by fears of contracting COVID-19 and potentially dying from it. The study also highlighted participants’ feelings of isolation, loneliness, difficulty or inability to work, financial hardships, and concerns about losing friends and family members to COVID-19. ¹⁰

Beyond the impacts on healthcare services, young adult cancer patients were also affected by social isolation. According to a study on young adults living with cancer, they expressed a greater need for peer support and interaction, ¹² which was restricted during the pandemic, amplifying negative emotions and weakening their mental health.

Receiving a cancer diagnosis can trigger a range of emotions, including fear, anxiety, insecurity, emotional and financial instability. These are further compounded by feelings related to lifestyle changes and physical alterations, potentially leading to aggression and hopelessness, especially given the life-threatening nature of the disease. ^{(13, 14)} This impact may be even more pronounced when the affected individual is young and experiencing a pandemic.

Young adults undergoing cancer treatment during the pandemic face numerous challenges, including the risk of contracting COVID-19, the reorganization of healthcare services, and mental health impacts. In this context, it is crucial to develop studies aimed at devising strategies to mitigate these consequences and promote the psychological and social well-being of this population.

Given the above, there is a need to deepen understanding of the repercussions of the pandemic on cancer patients, particularly young adults. To this end, the following research question was formulated: How did young adults with cancer experience the COVID-19 pandemic and what were the psycho-emotional impacts on their lives? Thus, this study aims to explore the experiences of young adults with cancer during the COVID-19 pandemic and its psycho-emotional impacts on their lives.

Method

This is a qualitative case study conducted with young adults with cancer, treated at the oncology center of a Teaching Hospital (TH) affiliated with the Unified Health System (SUS), specifically in the outpatient chemotherapy service in southern Rio Grande do Sul, Brazil. The case study aims to deeply explore a contemporary phenomenon while preserving its unitary nature within its context. ¹⁵ In this research, the focus is on the experience of young adults with cancer during the pandemic.

Six young adults who underwent treatment at the aforementioned service between March 2020 and December 2021, during the COVID-19 pandemic, participated in the study. Data collection was carried out through semi-structured interviews, which included questions about participant demographics, their experience with cancer during the COVID-19 pandemic, and potential changes in care and treatment. The following questions were asked: What changes occurred in your life due to cancer, especially during the pandemic? What feelings did you experience during the pandemic? How did the pandemic impact your life? How did the pandemic impact your treatment? These questions were developed based on prior readings that highlighted the need to expand knowledge about the impact of cancer on young adults, particularly during health crises like the COVID-19 pandemic.

The study was approved by the Research Ethics Committee for Human Subjects under CAAE: 65944322.4.0000.5337 and opinion number 5.920.267. To adhere to ethical principles, participants’ anonymity was maintained by assigning them the letter I (interviewee) followed by a number (1, 2, 3...), according to the order of the interviews. Additionally, participant profiles were presented in general terms and not linked to specific statements to prevent identification.

Participants were identified through referrals from professionals working at the research site and information from the service’s database, which provided details such as phone numbers and ages of potential participants. Those who met the inclusion criteria (undergoing chemotherapy at the selected service during the COVID-19 pandemic and aged between 18 and 29 years) were contacted by phone. Invitations to participate in the study were made via phone calls or in person for those still receiving treatment at the service. For individuals who did not answer phone calls, messages were sent via the WhatsApp messaging app.

The selection criteria focused on the first two years of the pandemic, considering that the first year was marked by significant uncertainty about the disease, while the second year saw the highest rates of infection and mortality. Regarding participants’ age, young adults were chosen as they represent an active population engaged in various social activities (professional training, entry into the job market, and diverse leisure activities). The pandemic and its social isolation measures likely had a stronger impact on this age group, which is also not typically associated with a high prevalence of cancer.

The service initially referred 22 individuals; however, only nine met the inclusion criteria, as some were over 29 years old or had completed cancer treatment before the onset of the COVID-19 pandemic. Of these nine, three did not answer phone calls or respond to WhatsApp messages.

Thus, six individuals met all criteria and constituted the final participant group. It is acknowledged that the small sample size is a limitation of the study, restricting the generalizability of results to other contexts. However, as this is a qualitative study, the goal is not generalization but rather an in-depth exploration of participants’ perspectives and emotions, with theoretical saturation being subjective in such cases.

In thematic analysis, as employed in this study, theoretical saturation cannot be predetermined since meaning is derived from interpretation. Therefore, the decision to cease data collection is subjective and cannot be fully determined prior to analysis. Consequently, data saturation is not a universally applicable concept in thematic analysis, as it depends on how thematic analysis and qualitative research are conceptualized and how data saturation itself is defined and determined.¹⁶

Before starting the interviews, participants were individually informed about the study’s objectives, voluntary participation, and the need to sign an Informed Consent Form. Following participant invitations and acceptance, data collection commenced through semi-structured interviews. The interviews were conducted in a quiet, private, and silent location provided by the service to facilitate information gathering. It should be noted that both the study participants and the researcher wore PFF2 masks to prevent contamination and transmission of the COVID-19 virus.

The interviews lasted an average of 20 minutes and were conducted between April and June 2023. They were recorded and manually transcribed in full, with double-checking for accuracy. Transcriptions were completed in Word documents. After transcription, the data were uploaded and organized using the WebQDA software, an online platform. The use of this software enhanced the categorization and interpretation processes of qualitative data by enabling structured coding and ensuring faster and more efficient data management with systematic and transparent analysis. ¹⁷ Through this software, statements were grouped based on similarity, creating codes that were later refined and evaluated for their significance within the overall findings.

The following word cloud was generated with the 100 most frequent words, considering those with at least three characters and excluding pronouns, adverbs, adjectives, verbs, and other common words (e.g., “that,” “not,” “but,” “he,” “this,” “did,” “have,” “one,” among others) to highlight the most representative terms: F1

Figure 1: Word cloud of the 100 most frequent words. 

Based on the figure, it is evident that the word “because” was the most cited, reflecting the questions and explanations the interviewees associated with the disease and the limitations it imposed on their lives. This served as an important guide in developing the codes that generated the categories. Some words related to the experienced period and how participants perceived their journey toward diagnosis and treatment (identified as initial codes) stand out, such as: “now”, “during”, “after”, “time”. Words associated with the disease and the pandemic, as well as the precautions participants adopted in response to cancer and the pandemic (also identified as initial codes), include: “cancer”, “Covid”, “disease”, “impacted”, “treatment”, “fear”, “pandemic”, “changes”, “family”, “work”. Based on these words, initial codes were created, followed by the grouping of statements to form categories.

The analysis of the collected narratives was conducted using thematic analysis, ¹⁸ which involved identifying, analyzing, and reporting themes present in the data. This process followed six steps: familiarization with the interviews (transcription and in-depth reading); generation of codes (extraction of the most frequent words, as shown in the software’s word cloud); theme construction (grouping data that converged into a common theme); theme review phase (reviewing the data and categories into which they were divided); synthesis and report production phases (organization, interpretation, and discussion of themes within the established categories). Thus, based on the initial coding derived from the word cloud and following the steps outlined above, two categories were developed to present the synthesis of results: Diagnosis and treatment for cancer in association with the COVID-19 pandemic, and Perspectives and emotions experienced in the face of cancer and COVID-19.

Results

Regarding participant profiles, they ranged in age from 21 to 29 years, with four females and two males. In terms of occupational activities, three were university students, two were employed, and one received government assistance. Three participants lived with their parents, while the other three lived with partners. As for diagnoses, participants had various types of cancer, including breast cancer, cervical cancer, testicular cancer, synovial sarcoma, Hodgkin’s lymphoma, and non-Hodgkin’s lymphoma. Although data were collected during the treatment phase, participants shared experiences and emotions spanning the entire illness process.

Discussion

Based on the results, it was observed that most participants did not perceive significant changes in cancer treatment due to COVID-19, nor in the care received from healthcare professionals. However, what intensified were the precautions adopted in care, such as asepsis.

According to participant I4, the main issue was the delay in consulting a specialist. This delay may be related to the reorganization of healthcare services during the pandemic, as one of the first measures adopted in the study’s municipality was the closure of specialty outpatient clinics and the temporary suspension of specialist consultations and elective surgeries, redirecting resources to combat COVID-19 due to the high mortality rate.

Thus, it can be inferred that individuals in the initial phase, i.e., undergoing cancer screening and diagnosis, were the most negatively affected by the pandemic. The healthcare system already exhibited weaknesses prior to the pandemic, which only further exposed this problem in the country. According to a study conducted in Brazil using data from the cancer information system, there was a decline in procedures related to cancer screening, diagnostic investigation, and treatment in 2020 compared to 2019, except for chemotherapy, which maintained its volume with a slight increase in 2020. ¹⁹ However, screening tests experienced the greatest reductions, particularly from April to June 2020, the period of greatest pandemic complexity in the country.

In a study conducted in northern Brazil with data collected during the first six months of the pandemic, adequate therapeutic maintenance for patients at an oncology center was identified. This was attributed to the adoption of preventive safety measures by the service.²⁰ Similarly, this study also investigated patients who were mostly undergoing ongoing cancer treatment at the institution, unlike other studies that examined specialist consultations and screening and diagnostic tests.

Likewise, a comparative study on cancer treatment before and after the pandemic identified a significant decrease in the number of patients undergoing treatment and those attended to. These declines were observed in medical consultations, particularly initial consultations and the initiation of new cycles of systemic intravenous treatments, oncological surgeries, hospitalizations for cancer-related diagnoses, and stem cell transplants. ²¹ In other words, the most significant and negative impact was observed among patients in the screening and treatment initiation phases.

For young adults, difficulties in screening and diagnosis can directly impact their quality of life and that of their families. The need for longer, more aggressive treatments and hospitalizations can interfere with their education and/or work processes, disrupting daily life and family income. It also isolates these young individuals from social interactions for prolonged periods, which may further affect their mental health.

From participants’ accounts, it is also evident that young adults with cancer undergoing treatment experience feelings of insecurity and fear of contracting COVID-19 or other illnesses due to immunosuppression. As a result, they adopted social isolation measures to avoid contagion. In a study on social representations conducted with young people undergoing cancer treatment during the pandemic in Pernambuco, it was found that young individuals expressed fear of contracting the virus, given the compromised immunity caused by treatment. ²²

Although results do not confirm that cancer patients are more susceptible to severe infections, societies dedicated to treating these patients have highlighted an extremely vulnerable group. This group includes patients undergoing induction chemotherapy, which often involves high doses of steroids; individuals being treated for leukemia and lymphoma; those who underwent hematopoietic stem cell transplants in the past 12 months; and those receiving CAR T-cell gene therapy. ²³ It is worth noting that, in addition to complications, healthcare professionals should be vigilant about the possibility of co-infections, i.e., concurrent infections by COVID-19 and other microorganisms, especially in transplant populations.

It is known that COVID-19 spreads through person-to-person contact. However, even while staying at home in isolation, some participants interacted with family members within the same household or with service providers, which generated feelings of fear and insecurity. One participant even mentioned contracting COVID-19 through service providers:

As a strategy to remain isolated, adopting changes in shopping habits -such as using delivery services and online shopping- was identified as a way to minimize exposure among study participants. During the pandemic, many people in Brazil ⁽²⁴ and globally ⁽²⁵ changed their shopping habits, opting for online platforms or delivery services. This allowed greater adherence to health protocols and became an alternative to minimize infection risk and protect health. For cancer patients who are immunosuppressed, this option proved to be not only important but necessary.

The fear of contagion, lifestyle changes, and confinement of cancer patients during the COVID-19 pandemic had a negative impact on their mental well-being, exacerbating feelings such as stress, anxiety, depression, and loneliness. Additionally, a decline in quality of life, emotional functioning, cognitive functioning, and social functioning was identified among cancer patients during the COVID-19 period. ^26,27

It is important to consider that oncology patients are already at risk of developing depression due to situations associated with cancer, such as fear of death. ²⁸ This was compounded by anxieties related to the pandemic and the patients’ age group. Although the pandemic is now being overcome, it is essential to invest in long-term mental health care for these individuals, as the effects of the pandemic may persist.

In this context, it is crucial to develop specific interventions for young adults undergoing cancer treatment and their families to address their psychological and social needs, ²⁹ thereby minimizing the negative repercussions caused by COVID-19. Moreover, these strategies could foster policies aimed at mental health care for young adult oncology patients during crises, assisting in structuring the healthcare system to address pandemics and other catastrophes.

One participant shared her experience of accompanying her mother, who required hospitalization for breast cancer treatment. This demanded care, exposure to a hospital environment, and potential contamination. On the other hand, I6 reported that his greatest concern about exposure was for his mother rather than himself. The fear of contracting COVID-19 and transmitting it to the person with cancer negatively impacts the mental health of family members and their ability to support the cancer patient.

Thus, it is essential for healthcare professionals to provide support not only to the person with cancer but also to their caregiver. Considering the broader context, it is relevant to develop activities such as support groups and to expand the presence of mental health professionals in oncology services. Cancer treatment generates a range of negative emotions, and sharing ideas and thoughts could serve as a coping strategy to mitigate these challenges.

It is important to highlight that direct exposure to hospital units, the use of public transportation, and limited resources for personal protective equipment such as alcohol-based sanitizers and masks increased individuals’ risk of contracting the disease. ¹⁹. Consequently, concerns about falling ill and transmitting the virus to family, friends, or coworkers can directly affect mental health. These factors may lead to varying degrees of psychological distress, making this population vulnerable to feelings of insecurity about their own lives.

This phenomenon was also identified in a study conducted in Iran, where the failure to adhere to standard precautionary measures, such as mask-wearing and vaccination, due to negligence by companions of cancer patients, caused fear of infection and mental distress.³⁰ Similarly, feelings of frustration were reported by cancer patients who noticed that family members were not adopting safety measures against the virus. ³¹

A COVID-19 is highly transmissible among humans. Patients presented symptoms such as fever, malaise, and cough. While pneumonia was initially the clinical hallmark of the disease that led to case detection, more recent reports have described gastrointestinal symptoms and asymptomatic infections. ³² Thus, COVID-19 symptoms such as body aches and fever were confused with cancer symptoms by one participant, as these symptoms can occur in both diseases. During the pandemic, communication barriers between patients and healthcare professionals were identified due to mask usage (making it difficult to clearly hear what was being said), ³⁰ combined with the need to create cancer care protocols to ensure well-being and provide support during a global health crisis. ³³ In this context, it is imperative for healthcare professionals to provide support to oncology patients so they can distinguish between symptoms of cancer and COVID-19, thereby enabling appropriate treatment and care.

Additionally, the role of nursing professionals is particularly significant in this regard, as they spend most of the time with patients across all levels of healthcare services, facilitating communication and addressing doubts. Thus, training healthcare professionals to identify symptoms and ensure accurate diagnoses for cancer patients infected with COVID-19 is essential.

Conclusions

It was found that, from the perspective of most participants, there were no changes or delays in their treatment during the COVID-19 pandemic. However, they highlighted the fear of contracting the virus due to their low immunity caused by treatment, leading to heightened asepsis precautions. The COVID-19 pandemic intensified the social isolation already experienced by young people with cancer, limiting their social interactions and distancing them from their roles and families. Thus, the necessary distancing to avoid virus transmission, combined with the isolation resulting from cancer treatment, generated feelings that could have significant psychological consequences for these young individuals.

Data collection faced limitations due to the low number of young people undergoing treatment during this period, as most were referred to the state’s main oncology center in Porto Alegre, the state capital and a specialized oncology hub. Although the results cannot be generalized to other populations, the qualitative approach addresses a specific reality and may provide important care guidelines for other contexts involving young people with cancer.

The study highlights the importance of psychological support for cancer patients and their families, especially during crises such as the COVID-19 pandemic. The fear of contamination, social isolation, and uncertainty about the future generate high levels of stress in these individuals.

To address this, it is crucial to develop specific care protocols for cancer patients during pandemics. These protocols should include clear information about COVID-19, psychological support to address emotional issues caused by the disease and the pandemic, and the expansion of multidisciplinary teams trained to meet the complex demands of this population. Implementing these protocols will help develop effective coping strategies and improve the quality of life for patients and their families.