1 INTRODUCTION

The COVID-19 pandemic has necessarily restricted freedom of movement, limited meetings, isolated those diagnosed with COVID-19, and instituted quarantines to reduce the number of infected people (Royal Decree, 2020). The common good has prevailed over individual good in managing the pandemic (Cetron & Landwirth, 2005; Institute of Medicine Forum on Microbial Threats, 2007), including closing hospitals to relatives. The concept of “common good” refers to the social strategies implemented to improve a community's health respectfully, contributing to individual benefit (Kalekin-Fishman, 1996). Therefore, patients were left isolated with the physical company of only the health professionals. Little is known about patients' and their families' ability to participate in decision-making during the pandemic (Asghari & Tehrani, 2020). A “family's physical presence” policy could increase the risk of infections during an outbreak and may pose moral dilemmas; hence, the need to minimize isolation requires a reassessment of these policies (Voo et al., 2020).

The ethical principle of autonomy requires patients to be treated as autonomous agents who can control their actions (Beauchamp & Childress, 2009). In Spain, as in most countries, the COVID-19 pandemic has caused a health emergency that has forced the transformation of general hospitals into monoliths of this disease and the optimization of material and human resources to ensure every effort was made to address the problem. In Spain, access to healthcare is universal for all citizens. The hospitals are open to relatives 24 h. Most hospitals have restricted visiting times for relatives in critical units such as Intensive Care or Operating Theater. The COVID-19 pandemic meant an essential paradigm shift since many patients and professionals had never worked before within a no-visitor policy.

During the COVID-19 pandemic, patients’ loneliness and unfamiliarity with professionals were identified as factors that could put patients’ decision-making ability in question, especially among people with mobility or communication problems (Wang et al., 2020). Another aspect that raises ethical challenges during a pandemic is patients’ refusal to undergo specific tests or preventive measures (Sprague et al., 2016). In such scenarios, it is crucial to approach the phenomenon from a bioethics perspective to help maintain public confidence (Asghari & Tehrani, 2020). It is also essential to fully understand the phenomenon, which may be beneficial for in situ adaptations or future outbreaks. Therefore, in response to measures during the COVID-19 pandemic, efforts should be made to identify and address patient concerns.

2 BACKGROUND

Autonomy is often seen only as a right to freedom. In contrast, the common good is a value of sufficient weight to advocate for a limitation of freedom and autonomy. The interests of individuals and communities are inevitably interrelated. Autonomy can be seen as an ethical construct with responsibilities toward other members of society (Jeffrey, 2020).

Clinical practice has evolved more in line with treating the patient's disease. Care ethics, as a moral orientation, imply promoting autonomy (Lindberg et al., 2014). Respect for autonomy is universally recognized as a fundamental principle in bioethics (Beauchamp & Childress, 2009); however, the reference to autonomy concerning patients in a healthcare context could be considered paradoxical. The level of vulnerability deepen (or heightened) for a person with physical or cognitive capacity in a care context, thus increasing the need to promote autonomy (Lindberg et al., 2014). However, the perception of autonomy is associated with the absence of limitations and does not consider the notions of relationship, responsibility, and care; it does not provide the best means to improve oneself (Greaney et al., 2012). For example, preventive isolation was implemented for those admitted to hospitals among the safety measures employed during the COVID-19 pandemic to prevent infection. Therefore, patients were no longer allowed to receive visits from their families, friends, or significant others, leading to a sense of loneliness since emotional care and face-to-face support from loved ones are necessary for patients as the central axis of healthcare (Voo et al., 2020).

Previous studies have addressed patients’ experiences in isolation due to infectious diseases, reporting feelings of loneliness and ethical dilemmas because of mobility limitations. Older people experience more sadness and loneliness; women in isolation are more concerned about transmission. Although these data suggest a problem exists, there is a gap in what we know about improving the experience of isolation and making it more tolerable for patients and their families (Hereng et al., 2019; Nair et al., 2021; Purssell et al., 2020). In the context of hospital admission during the COVID-19 pandemic, the autonomy and isolation aspects of the patient-professional relationship have, thus far, not been studied. Thus, the experiences of patients and caregivers and how their autonomy and isolation may have been compromised while receiving care remain unknown. This information is key to reviewing and adapting care protocols for future situations. Therefore, this study aimed to describe the hospital care experiences of patients and family caregivers in terms of autonomy and isolation during the COVID-19 pandemic by describing their experiences.

3 METHODS

This study used qualitative descriptive methods (Sandelowski, 2010), focusing on the experience of caregivers and patients in terms of autonomy and isolation after hospital admission due to COVID-19 during the pandemic. This type of qualitative design helps to illuminate how a particular phenomenon manifests itself and is especially useful for describing little-studied phenomena (Polit & Beck, 2017). The consolidated criteria for reporting qualitative research (COREQ) were followed (Tong et al., 2007).

Purposive sampling was used to recruit participants. The inclusion criteria were patients and their direct caregivers over 18 years of age who were discharged to their homes from the Vall d'Hebron University Hospital after a diagnosis of COVID-19. This is the largest hospital in Barcelona, and one of the biggest in Spain; thus, the highest number of COVID-19 patients, both critical and noncritical, were admitted there.

A hospital research nurse assessed the suitability of the candidates for participation and excluded those whose emotional or physical health situation contraindicated participation in the study (e.g., major depression, respiratory problems, speech problems, or psychotic disorders). The sample consisted of 13 patients (seven women, six men) and eight caregivers (three women, five men), all of whom were family members.

The principal investigator reviewed the discharges made during March–April 2020 and made the first telephone contact with those who could actively participate in the study according to their professional criteria. After describing the study, their participation was purposively requested. The principal investigator telephoned interested parties at least 7 days after discharge. Those who agreed to participate provided written consent; afterward, the interview date and time were set. Data were collected through semi-structured phone interviews, lasting approximately 60 min each. Before beginning the interviews, the participants were informed that the conversation would be recorded. Sociodemographic data from the medical history were also collected to describe the characteristics of the sample and help analyze the findings (age, sex, date of onset of symptoms, date of diagnosis, date of admission, date of discharge, level of education, place of residence, comorbidities, marital status, and family structure). The interview script (see Table 1) was developed according to the research aim and the decision of the research team after several meetings to discuss and verify the appropriateness of the questions and their clarity. The script was open to modifications as the study progressed. Field notes were taken during the interviews to promote reflective thinking, answer questions, identify topics, and propose new questions. The interviews were immediately transcribed verbatim after completion. The sample size was determined by data saturation; the series of interviews was terminated when the data obtained became redundant (Mandal, 2018). Four of those contacted refused to participate for different reasons (mainly not feeling well or not wanting to participate).

Data collection and analysis were simultaneously performed. Data were analyzed following the content analysis method proposed by Krippendorff (2019) with the support of the qualitative analysis software Atlas.ti® v8. Initially, the transcripts were read several times to familiarize researchers with them and identify their first impressions of the meaning(s) therein. Next, the texts were coded according to their content to group these codes into categories based on their similarities. This last step was discussed and agreed upon among the research team members to identify meanings and resolve doubts and disagreements regarding meaning(s). Data matrices helped clarify the findings and provide meaning for the entire process.

Once a preliminary version of the results had been obtained, two participants were asked for feedback to confirm the results. During the telephonic communication, participants fully confirmed the results, ensuring they felt represented and adequately identified with this information so that the findings' meaning and coherence were verified. Finally, verbatim fragments of the interviews (without identifying data) were provided to illustrate and provide evidence for the results (Polit & Beck, 2017).

Various procedures were performed to ensure the validity of the data (Guba & Lincoln, 1994). The interviews were conducted by two highly experienced researchers with no previous relationships with the participants (M.A. and J.L.). Audio files were transcribed by a single researcher (O.M.) to avoid discrepancies. Reflexivity, constant discussion, and verification by team members confirmed the accuracy of the interpretations obtained from the interviews. Since the interviews were all conducted in Spanish, they were translated into English by professional translators and verified by a bilingual team member (J.L.); thus, it was ensured that the translated texts contained not only the syntax but also the essence of the original meaning. Four participants verified the results and suggested that no changes were needed.

Approval was obtained from Vall d'Hebron Ethics and Research Committee. During the interviews, the participants' real names or any personal information that could reveal their identity were not recorded; the interviewees were identified by the letter P for “participant” and the number assigned to the interview. Additionally, it was confirmed whether the informant was alone or surrounded by people to whom they granted permission to observe the interview. Similarly, the interviewer let the participants know they were in a safe and private location suitable for conducting the interview. The participation was voluntary and could be withdrawn upon request. The participants did not receive any financial compensation for their participation. No hierarchical relationships between the interviewer and the interviewee were identified. Throughout the data collection and analysis, the researchers were mindful of the information collected on experiences, agreement or dissonance with their values, onto-epistemological background, and the possible impact on the analysis (Råheim et al., 2016).

4 RESULTS

Twenty-one participants were interviewed (13 patients and eight family members). The patients' ages ranged from 31 to 74 years, whereas caregivers were 38–52 years old (more details are shown in Table 2). The mean duration of hospital stay was 11.92 days. Data analysis identified two themes: (i) Acceptance of mandatory isolation for patients and family caregivers, and (ii) Limited autonomy perceived as necessary during hospitalization for patients and family caregivers (Table 3).

5 DISCUSSION

This study highlights the feeling of isolation and its relationship with the loneliness experienced by the participants during their COVID-19 hospital stay. Furthermore, it reveals the meaning that the interviewees gave to the concept of autonomy, with particular emphasis on the efforts of health personnel to maintain it, and the limitations on those efforts. Although autonomy is greatly valued, restrictions had to be implemented for the patients' and the general population's well-being to provide the best care. Notably, participants considered this limitation to be part of their duties as patients and caregivers or as members of society, and their loss was assumed to be natural, typical of the process they were experiencing, and always in furtherance of the common good (Bellver-Capella, 2020). These themes are repeated in other studies that analyze the experiences of hospitalized persons, especially in areas with strict infection controls or where significant isolation periods are required (Adams et al., 2020; Shaban et al., 2020; Siddiqui et al., 2019; Vottero & Rittenmeyer, 2012). Likewise, ethical issues related to care have emerged among the central pillars of healthcare, and their consideration and analysis are essential in all areas of health, especially in crises such as those described (Bellver-Capella, 2020; Tyrrell & Williams, 2020; Sun et al., 2021; WHO, 2021).

Owing to the pandemic, patients had to remain in isolation throughout their hospital stay. In addition, the unique circumstances of the COVID-19 pandemic meant that the restrictive measures imposed in various social environments, including the hospital environment, have increased. Decrease in transmission of the disease is based on physical distancing, which involves social isolation and professionals' use of specific protective measures (Tyrrell & Williams, 2020). This means that patients were admitted alone and faced challenging and complex situations in the absence of their loved ones, which undeniably impacted their emotional health (Ho & Neo, 2021). The participants verbalized feelings of loneliness, sadness, and helplessness in the face of an unforeseen situation, which coincides with other studies (Abad et al., 2010; Siddiqui et al., 2019; Eli et al., 2020; Shaban et al., 2020,). Similarly, according to the studies by Luchetti et al. (2020) and Purssell et al. (2020), loneliness is related to higher mortality and morbidity, is detrimental to emotional health, and has potential consequences for physical health.

The use of PPE was another prominent theme throughout the interviews and contributed directly to the isolation and loneliness experienced by the participants. PPE was related to the depersonalization of care, making it challenging to identify professionals and even generating feelings of stigmatization among patients. Especially in the case of people diagnosed with COVID-19, this stigma is accentuated because they feel excluded from other patients, making them feel like “strange creatures,” a concept that emerged in some of the interviews. Other authors have analyzed this aspect in other hospital care situations and reached similar conclusions (Gammon et al., 2019).

To combat against the feeling of loneliness, using mobile phones and other digital devices helped reduce the sense of distance between participants and their family members and loved ones, slightly alleviating their need for physical contact and providing them with the strength and motivation to persevere. This idea opens the door to future research in new technologies in times of crisis, which some authors have already launched (Conroy et al., 2020; Shah et al., 2020). For example, new technologies in the public health environment have made it possible to obtain epidemiological information quickly and improve the identification and traceability of cases (Budd et al., 2020; Molina-Mula & Gallo-Estrada, 2020).

This study also described the experiences of family members regarding their relative's hospitalization. The caregivers experienced feelings similar to those of the patients. In addition, family members' concern about being excluded from the care process has been analyzed in the literature (Bartoli et al., 2021). Evidence shows that disease impacts all family members and their relationships, making it necessary for the family to adapt to new demands, such as the distribution of new roles and functions (Canga et al., 2016). Family concerns, fear, and anxiety increase when the disease leads to hospitalization. In Spain, health services are organized around patients, considering the family as part of the context; they are a resource that provides a solution in caring for their sick relatives (Canga, 2014). During the COVID-19 pandemic, families could not care for their loved ones. As a result, families suffered alone at home with little or no follow-up from healthcare professionals. Therefore, families must be included as another vital piece in the healing process for future pandemic situations. It is known that interventions that consider the family as a caring unit positively impact health for both patients and family caregivers (Villanueva Lumbreras et al., 2015).

Another interview finding is that patients with COVID-19 had to delegate much of their autonomy in order to control transmission, even though their health status was stable and not critical (Molina-Mula & Gallo-Estrada, 2020). Preserving autonomy and mitigating the isolation of patients and their families during the pandemic was difficult, although not impossible, as indicated in this study. Therefore, nurses became the reference persons for their care and acted as intermediaries for caregivers and their families (Flagg, 2015; Woo et al., 2017). For this reason, nonverbal communication, such as caresses or gestures, acquired great value in ensuring excellent care. Likewise, the nurse–patient relationship evolved throughout the hospitalization process, passing through the role of professional, confidant, partner, and advisor, preserving as much autonomy as possible and alleviating patient loneliness. Consequently, there was unconditional acceptance of the nursing role, a valuing of professionalism, and the creation of a bridge between trust and nursing leadership (Woo et al., 2017).

The nursing role is directly related to concepts such as the humanization of care and patient-centered care (Flagg, 2015). These aspects are of particular relevance in 2020, which the World Health Organization has declared it the year of the nurse and midwife because of the excellent health work of the nursing profession (Borger, 2020). In addition, COVID-19 has highlighted the importance of this profession's work—its holistic approach including a sense of responsibility, capacity for sacrifice, professionalism, and dedication and commitment to the patients and families that nurses serve (Fernandez et al., 2020; Ulrich et al., 2020).

The gratitude of the participants toward the health personnel and the acceptance of the measures they took to protect themselves and other people being treated reveals a controversial issue that arises for healthcare providers in crises: the fine line that separates the care of patients from the self-care of professionals (Bellver-Capella, 2020). Health personnel have been among those most affected by COVID-19, and critical situations have been experienced due to the lack of adequate material to protect themselves from the risk of infection, increased workloads, and psychological and emotional effects of the stress experienced (Braquehais et al., 2020; Gómez-Ibáñez et al., 2020). The interviewees perceived this dedication, effort, and involvement of the health workers, and wanted to express their gratitude repeatedly to everyone who had collaborated in their recovery.

Facing the complexity of a global pandemic, the ethical issues that arise must be considered: not only those treated in this study, such as the autonomy violation and isolation, but also the scarcity of material and human resources, health system saturation, implementation of experimental therapies, and vaccine distribution that can be encompassed in the principle of equity; the consequences of this will prevail for a long time.

Although the sample may be small, reaching data saturation ensured the rigor and transferability of the results in territories with similar health policies. It should be considered that Spain has a free and universal health system with 24-hour open access for family members; therefore, the results cannot be applied to other health contexts. It should also be taken into account that because of the sampling procedure, it is highly probable that only those whose experience with professionals and the system was satisfactory agreed to participate, thus ignoring the experiences of those who were dissatisfied.

Therefore, patients consciously sacrificed their autonomy for the common good within a dynamic of acceptance and accurate knowledge of the pandemic. In many cases, the patient assumed a passive role with the nursing staff because their relationship focused on trust in decision-making (Molina-Mula & Gallo-Estrada, 2020). Evidence from a prior study highlights the importance of adequate control of patient autonomy in the hands of nursing professionals (Skår, 2010).

6 CONCLUSION

During the COVID-19 pandemic, feelings of loneliness among patients and caregivers remained latent, affecting their emotional health because of the strict isolation rules for infection control. Therefore, reduced autonomy concerning measures and protocols for the benefit of public health must be added. This fact has been well accepted by all the participants, who have also shown appreciation for the work done by the healthcare staff.

AUTHOR CONTRIBUTIONS

Study design: Olga Mestres, Juan M. Leyva, Rebeca Gomez Ibañez. Data collection: Olga Mestres, Marta Rosales, Juan M. Leyva, Mariela Aguayo. Data analysis: Juan M. Leyva, Mariela Aguayo, Rebeca Gomez Ibañez. Manuscript writing: Olga Mestres, Juan M. Leyva-Moral, Mariela Aguayo, Esperanza Zuriguel, Marta Rosales, Rebeca Gomez-Ibañez.

CONFLICT OF INTEREST

None declared.