14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License Received: 18 July 2022 Revised: 12 September 2022 Accepted: 13 September 2022 DOI: 10.1111/nhs.12986 RESEARCH ARTICLE Autonomy and isolation experienced by patients and primary caregivers during COVID-19 hospitalization in Barcelona (Spain) Olga Mestres-Soler PhD, MSc, RN 1,2 | Juan M. Leyva-Moral PhD, MSc, CHNS, RN 3 | Mariela Aguayo-González PhD, MSc, RN 1 | Esperanza Zuriguel-Pérez PhD, MSc, RN 4,5 | Marta Rosales RN 6 | Rebeca Go mez-Ibáñez PhD, MSc, RN 1 1 Nursing Department. Faculty of Medicine. Grupo de Investigacion Enfermera en Abstract Vulnerabilidad y Salud (GRIVIS), Universitat This study aims to describe patients' and family caregivers' hospitalization experi- Auto noma de Barcelona, Barcelona, Spain 2 Campus Docent, Sant Joan de Déu-Fundacio  ences during the COVID-19 pandemic. Using qualitative exploratory descriptive Privada, School of Nursing, Universitat de methods, 13 patients admitted to the largest hospital in Barcelona (Spain) due to Barcelona, Multidisciplinary Nursing Research Group, Vall d'Hebron Research Institute. COVID-19 were interviewed by telephone once discharged, as were eight primary (VHIR), Barcelona, Spain caregivers. Data were analyzed using the content analysis method proposed by Krip- 3 Department of Nursing. Faculty of Medicine. pendorff. Two main themes were identified: (i) Acceptance of mandatory isolation for Grupo de Investigacion Enfermera en Vulnerabilidad y Salud (GRIVIS), Universitat patients and family caregivers, which refers to the verbalization of a feeling that jus- Autònoma de Barcelona, Universitat tifies the imposed isolation and the need for the use of personal protective equip- Autonoma de Barcelona, Barcelona, Spain 4 Department of Knowledge Management and ment by the health team for everyone's safety; and (ii) Limited autonomy during Evaluation, Vall d'Hebron University Hospital, hospitalization for patients and family caregivers, which describes participants' per- Barcelona, Spain 5 ceptions of autonomy during hospitalization. Patients and caregivers experienced Head of Multidisciplinary Nursing Research Group, Vall d'Hebron Research Institute. feelings of loneliness, which negatively affected their emotional health. In addition, (VHIR), Barcelona, Spain they experienced reduced autonomy due to new habits and routines intended to 6 Hospitalization nurse at the Vall d'Hebron control the pandemic for the benefit of public and global health. General Hospital, Barcelona, Spain Correspondence KEYWORDS Juan M. Leyva-Moral, Universitat Autònoma autonomy, family, isolation, qualitative research, SARS-CoV-2 de Barcelona, Department of Nursing. Faculty n of Medicine. Grupo de Investigacio Enfermera en Vulnerabilidad y Salud (GRIVIS), Key points Universitat Autonoma de Barcelona, Avda. Can • The COVID-19 pandemic aroused feelings of loneliness among patients and caregivers Domenech, Building M. Office M3/211, because of the required isolation rules for infection control. 08193 Bellaterra (Cerdanyola del Vallès), • Patients and caregivers accepted the isolation policies as they felt they were necessary. 08193, Barcelona, Spain. Email: juanmanuel.leyva@uab.cat • In the event of a new pandemic scenario, digital/virtual communication channels must be implemented to reduce feelings of loneliness and loss of autonomy. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. © 2022 The Authors. Nursing & Health Sciences published by John Wiley & Sons Australia, Ltd. Nurs Health Sci. 2022;24:853–861. wileyonlinelibrary.com/journal/nhs 853 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License 854 MESTRES-SOLER ET AL. 1 | I N T RO DU CT I O N autonomy (Lindberg et al., 2014). Respect for autonomy is universally recognized as a fundamental principle in bioethics (Beauchamp & The COVID-19 pandemic has necessarily restricted freedom of move- Childress, 2009); however, the reference to autonomy concerning ment, limited meetings, isolated those diagnosed with COVID-19, and patients in a healthcare context could be considered paradoxical. The instituted quarantines to reduce the number of infected people (Royal level of vulnerability deepen (or heightened) for a person with physical Decree, 2020). The common good has prevailed over individual good or cognitive capacity in a care context, thus increasing the need to in managing the pandemic (Cetron & Landwirth, 2005; Institute of promote autonomy (Lindberg et al., 2014). However, the perception Medicine Forum on Microbial Threats, 2007), including closing hospi- of autonomy is associated with the absence of limitations and does tals to relatives. The concept of “common good” refers to the social not consider the notions of relationship, responsibility, and care; it strategies implemented to improve a community's health respectfully, does not provide the best means to improve oneself (Greaney contributing to individual benefit (Kalekin-Fishman, 1996). Therefore, et al., 2012). For example, preventive isolation was implemented for patients were left isolated with the physical company of only the those admitted to hospitals among the safety measures employed health professionals. Little is known about patients' and their families' during the COVID-19 pandemic to prevent infection. Therefore, ability to participate in decision-making during the pandemic patients were no longer allowed to receive visits from their families, (Asghari & Tehrani, 2020). A “family's physical presence” policy could friends, or significant others, leading to a sense of loneliness since increase the risk of infections during an outbreak and may pose moral emotional care and face-to-face support from loved ones are neces- dilemmas; hence, the need to minimize isolation requires a reassess- sary for patients as the central axis of healthcare (Voo et al., 2020). ment of these policies (Voo et al., 2020). Previous studies have addressed patients’ experiences in isolation The ethical principle of autonomy requires patients to be treated due to infectious diseases, reporting feelings of loneliness and ethical as autonomous agents who can control their actions (Beauchamp & dilemmas because of mobility limitations. Older people experience Childress, 2009). In Spain, as in most countries, the COVID-19 pan- more sadness and loneliness; women in isolation are more concerned demic has caused a health emergency that has forced the transforma- about transmission. Although these data suggest a problem exists, tion of general hospitals into monoliths of this disease and the there is a gap in what we know about improving the experience of optimization of material and human resources to ensure every effort isolation and making it more tolerable for patients and their families was made to address the problem. In Spain, access to healthcare is (Hereng et al., 2019; Nair et al., 2021; Purssell et al., 2020). In the con- universal for all citizens. The hospitals are open to relatives 24 h. Most text of hospital admission during the COVID-19 pandemic, the auton- hospitals have restricted visiting times for relatives in critical units omy and isolation aspects of the patient-professional relationship such as Intensive Care or Operating Theater. The COVID-19 pan- have, thus far, not been studied. Thus, the experiences of patients and demic meant an essential paradigm shift since many patients and pro- caregivers and how their autonomy and isolation may have been com- fessionals had never worked before within a no-visitor policy. promised while receiving care remain unknown. This information is During the COVID-19 pandemic, patients’ loneliness and unfamiliar- key to reviewing and adapting care protocols for future situations. ity with professionals were identified as factors that could put patients’ Therefore, this study aimed to describe the hospital care experiences decision-making ability in question, especially among people with mobility of patients and family caregivers in terms of autonomy and isolation or communication problems (Wang et al., 2020). Another aspect that during the COVID-19 pandemic by describing their experiences. raises ethical challenges during a pandemic is patients’ refusal to undergo specific tests or preventive measures (Sprague et al., 2016). In such sce- narios, it is crucial to approach the phenomenon from a bioethics perspec- 3 | METHODS tive to help maintain public confidence (Asghari & Tehrani, 2020). It is also essential to fully understand the phenomenon, which may be benefi- This study used qualitative descriptive methods (Sandelowski, 2010), cial for in situ adaptations or future outbreaks. Therefore, in response to focusing on the experience of caregivers and patients in terms of measures during the COVID-19 pandemic, efforts should be made to autonomy and isolation after hospital admission due to COVID-19 identify and address patient concerns. during the pandemic. This type of qualitative design helps to illumi- nate how a particular phenomenon manifests itself and is especially useful for describing little-studied phenomena (Polit & Beck, 2017). 2 | B A CKG R O U N D The consolidated criteria for reporting qualitative research (COREQ) were followed (Tong et al., 2007). Autonomy is often seen only as a right to freedom. In contrast, the Purposive sampling was used to recruit participants. The inclusion common good is a value of sufficient weight to advocate for a limita- criteria were patients and their direct caregivers over 18 years of age tion of freedom and autonomy. The interests of individuals and com- who were discharged to their homes from the Vall d'Hebron University munities are inevitably interrelated. Autonomy can be seen as an Hospital after a diagnosis of COVID-19. This is the largest hospital in ethical construct with responsibilities toward other members of soci- Barcelona, and one of the biggest in Spain; thus, the highest number of ety (Jeffrey, 2020). COVID-19 patients, both critical and noncritical, were admitted there. Clinical practice has evolved more in line with treating the A hospital research nurse assessed the suitability of the candidates patient's disease. Care ethics, as a moral orientation, imply promoting for participation and excluded those whose emotional or physical health 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License MESTRES-SOLER ET AL. 855 TABLE 1 Interview questions the telephonic communication, participants fully confirmed the • How was the nursing care received by you or your family member? results, ensuring they felt represented and adequately identified with • What memories are the most intense? Why? this information so that the findings' meaning and coherence were • Did you have a chance to ask questions? How did you feel? verified. Finally, verbatim fragments of the interviews (without identi- • Did you ever feel lonely? Why? What impact did it have on your fying data) were provided to illustrate and provide evidence for the autonomy? • Did you feel that your autonomy or that of your family member results (Polit & Beck, 2017). was violated? Why? Various procedures were performed to ensure the validity of the • How would you assess the information and care received from data (Guba & Lincoln, 1994). The interviews were conducted by two healthcare professionals? highly experienced researchers with no previous relationships with the participants (M.A. and J.L.). Audio files were transcribed by a sin- gle researcher (O.M.) to avoid discrepancies. Reflexivity, constant dis- situation contraindicated participation in the study (e.g., major depres- cussion, and verification by team members confirmed the accuracy of sion, respiratory problems, speech problems, or psychotic disorders). the interpretations obtained from the interviews. Since the interviews The sample consisted of 13 patients (seven women, six men) and eight were all conducted in Spanish, they were translated into English by caregivers (three women, five men), all of whom were family members. professional translators and verified by a bilingual team member (J.L.); The principal investigator reviewed the discharges made during thus, it was ensured that the translated texts contained not only the March–April 2020 and made the first telephone contact with those syntax but also the essence of the original meaning. Four participants who could actively participate in the study according to their profes- verified the results and suggested that no changes were needed. sional criteria. After describing the study, their participation was purpo- Approval was obtained from Vall d'Hebron Ethics and Research sively requested. The principal investigator telephoned interested Committee. During the interviews, the participants' real names or any parties at least 7 days after discharge. Those who agreed to participate personal information that could reveal their identity were not recorded; provided written consent; afterward, the interview date and time were the interviewees were identified by the letter P for “participant” and the set. Data were collected through semi-structured phone interviews, number assigned to the interview. Additionally, it was confirmed whether lasting approximately 60 min each. Before beginning the interviews, the the informant was alone or surrounded by people to whom they granted participants were informed that the conversation would be recorded. permission to observe the interview. Similarly, the interviewer let the Sociodemographic data from the medical history were also collected to participants know they were in a safe and private location suitable for describe the characteristics of the sample and help analyze the findings conducting the interview. The participation was voluntary and could be (age, sex, date of onset of symptoms, date of diagnosis, date of admis- withdrawn upon request. The participants did not receive any financial sion, date of discharge, level of education, place of residence, comorbid- compensation for their participation. No hierarchical relationships ities, marital status, and family structure). The interview script (see between the interviewer and the interviewee were identified. Through- Table 1) was developed according to the research aim and the decision out the data collection and analysis, the researchers were mindful of the of the research team after several meetings to discuss and verify the information collected on experiences, agreement or dissonance with appropriateness of the questions and their clarity. The script was open their values, onto-epistemological background, and the possible impact to modifications as the study progressed. Field notes were taken during on the analysis (Råheim et al., 2016). 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 4 | RE SU LT S by data saturation; the series of interviews was terminated when the data obtained became redundant (Mandal, 2018). Four of those con- Twenty-one participants were interviewed (13 patients and eight fam- tacted refused to participate for different reasons (mainly not feeling ily members). The patients' ages ranged from 31 to 74 years, whereas well or not wanting to participate). caregivers were 38–52 years old (more details are shown in Table 2). Data collection and analysis were simultaneously performed. Data The mean duration of hospital stay was 11.92 days. Data analysis were analyzed following the content analysis method proposed by identified two themes: (i) Acceptance of mandatory isolation for Krippendorff (2019) with the support of the qualitative analysis soft- patients and family caregivers, and (ii) Limited autonomy perceived as ware Atlas.ti® v8. Initially, the transcripts were read several times to necessary during hospitalization for patients and family caregivers familiarize researchers with them and identify their first impressions (Table 3). of the meaning(s) therein. Next, the texts were coded according to their content to group these codes into categories based on their simi- larities. This last step was discussed and agreed upon among the 4.1 | Theme 1: Acceptance of mandatory isolation research team members to identify meanings and resolve doubts and for patients and family caregivers disagreements regarding meaning(s). Data matrices helped clarify the findings and provide meaning for the entire process. Physical distancing was required to avoid COVID-19 transmission. Once a preliminary version of the results had been obtained, two The admitted patients could not receive visits from their loved ones, participants were asked for feedback to confirm the results. During and the only contact allowed was virtual (e.g., video chat, messaging) 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License 856 MESTRES-SOLER ET AL. TABLE 2 Participant details Participant Gender Kinship Age Occupation Level of education Total days of admission P1 Male – 31 Administrator University 10 P2 Female – 74 Retired Basic 36 P2-C Male Nephew 49 Informatics University – P3 Female – 72 Administrator Basic N/A P3-C Female Daughter 35 N/A N/A – P4 Female – 58 School teacher University 36 P4-C Female Sister 52 Event planner University – P5 Male – 44 Administrator Basic 30 P6 Female – 58 Retired Secondary 9 P7 Male – 38 Informatics University 30 P7-C Female Spouse 39 Administraor University – P8 Male – 57 Lawyer University 39 P8-C Female Friend 62 N/A N/A – P9 Male – 62 N/A N/A 20 P9-C Female Sister 58 Concierge Basic – P10 Female – 40 Sales Basic 4 P10-C Male Friend 45 Truck driver Basic – P11 Female – 38 Nurse assistant Secondary 6 P11-C Male Husband 38 Factory Basic – P12 Male – 39 Driver University 8 P13 Female – 36 Housekeeper Basic 6 Note: C, caregiver; N/A, not available; P, patient. with gloves and without fear. They came up and and by telephone. Based on this situation, this category is defined by touched me. That is the part where I said, “wow!” the circumstances shaped by the isolation that patients and their care- Above all, they made me feel like a person. (P12) givers underwent during hospitalization. Health professionals were forced to use personal protective equipment (PPE) to perform the necessary clinical and care proce- Patients and caregivers especially remembered feeling lonely. Pri- dures. These protective measures were necessary to prevent the ority was given to the common good, that is, to what felt right and spread of the virus. PPE consists of masks, glasses, gowns, gloves, and fair. Although they accepted, understood, and abided by these restric- caps. Having to wear such clothing and devices made it difficult to tions, some negative feelings were generated in the patients and care- identify the healthcare professional treating the patients then. Some givers. Despite understanding the causes and accepting these participants felt like “weirdos” or stigmatized, feeling they were being restrictions, for many participants, forced isolation was the most chal- treated differently from non-COVID-19 patients. However, most of lenging part of their admission—the aspect that made them suffer and them understood that health professionals should protect themselves saddened them the most. The patients could not see or have any in this way in such a situation. physical contact with their surroundings; the caregivers could not The depersonalization of care, such as not seeing the person, not experience the hospitalization process in person with their loved ones feeling skin-to-skin contact, or not seeing a smile, saddened them and offer personal support. Therefore, the most frequently used every day; nevertheless, the acceptance of the situation outweighed resources were telephone and virtual communication channels, allow- the sadness, and they complied with these conditions without protest. ing the participants to see, hear, and encourage each other. Albeit vir- They knew that the situation necessitated the conditions; it was sim- tually, distances were reduced, encouraging them to draw strength ply “the fairest thing for all.” They even valued simple gestures of and motivate themselves to face the situation. proximity, such as introducing themselves or a caress, even with a glove. These affectionate actions were experienced as gestures of There was no other choice but to do what they humanity that dignified them in such complicated circumstances. [nurses] told us, and I did not see anyone, even though it was very hard. I could not just think of myself but I felt very flattered that, even in this situation, those also the rest of the people and not infect any- nurses approached me affectionately and touched me, one. (P7-C) 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License MESTRES-SOLER ET AL. 857 TABLE 3 Themes and subthemes physical limitations, such as breathing difficulties; on the other, strict Theme Subtheme Codes measures were imposed by hospitals for COVID-19-positive patients Acceptance of Use of PPE Feeling stigmatized and their caregivers. Especially in regard to the latter situation, partici- mandatory isolation pants sometimes emphasized the restrictions on their autonomy of Depersonalization in for patients and care action and decision. However, they understood that these limitations family caregivers Understanding were widely imposed and were essential for managing hospital work Acceptance/abiding by that was organized to cope with the spread of the virus. On repeated the situation occasions, they lamented that they could not do everything they Feeling alone/ Suffering wanted, but they accepted the situation and were swayed by the loneliness Need of physical health personnel's decisions and the routines they set. Therefore, the contact health workers set the pace throughout the process, and patients con- Virtual/telephone veyed in various ways that they consciously ceded/delegated their relationship autonomy for the greater good. Motivation Limited autonomy Limitation of Limitations imposed Autonomy is basic, the fact of breathing is essential, perceived as autonomy Acceptance and we do not think about it when we do it—one necessary during Voluntary assignment/ breathes, and that is it. However, what about when hospitalization for delegation of you cannot breathe? Then I realized the importance of patients and family caregivers autonomy being autonomous. (P1) Provide security Effort of Enhance capabilities I entrusted them with my care. When I left the ICU, I healthcare staff Adapt to individual could hardly move, and if they had to clean me, they to maintain recovery rates cleaned me. That was what they had to do. However, patient autonomy Gratitude even if I felt better, I understood what must be done. Nurse role They [health workers] decide. (P7) Note: PPE, personal protective equipment. Health professionals cared for patients' safety and the safety of It was hard to get out of your routine all at once, out their caregivers with regard to the care and the information they pro- of your day-to-day, being away from everyone and vided. The participants perceived it this way and praised the health everything. I saw them [relatives] by video call, but of professionals for their confidence in action and willingness to answer course, it is not the same. You need physical con- any questions. This disposition and constant dedication generated tact. (P13) positive feelings in patients and their caregivers. Most interviewees valued the attempts of health workers to maintain patients’ autonomy The worst thing that she [a family member] always and decision-making power as much as possible. This was perceived comments on is loneliness, but it could not be other- as a way to enhance the capacity of each patient and promote their wise. One day she even said that she felt awful, not independence. They also emphasized that the professionals adapted because of the place or the virus, but because she was to different recovery rates and gave patients time to fend for always alone. (P3-C) themselves. Not being able to be there with him was like abandon- I felt that doctors and nurses knew what they were ing him. It was a horrible experience. (P4-C) doing; they gave me security. Although I know they faced the unknown, I do not know if they did, but they gave me security and helped me a lot. (P3-C) 4.2 | Theme 2: Limited autonomy perceived as necessary during hospitalization for patients and They counted on me for everything: checking blood family caregivers pressure, oxygen saturation, everything. They gave us support. When I could not, they (the nurses) were The hospitalization process includes changing habits, schedules, and rou- there.… There was no problem; there were so many tines for admitted patients and their caregivers. This thematic category personnel, and so many came in that they gave you all includes all aspects of the participants' perceptions of autonomy during the options to adapt. (P11) hospitalization. It comprises two subthemes: the limitation of autonomy, and the effort of healthcare staff to maintain patient autonomy. From all this, it can be inferred that the participants felt grateful Patients diagnosed with COVID-19 experienced more significant to the health professionals. The expressions “I appreciate it” and distress due to two main reasons: On one hand, the virus caused “thank you” were the most repeated phrases in all the interviews. 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License 858 MESTRES-SOLER ET AL. Participants felt grateful to healthcare professionals for taking care of ones, which undeniably impacted their emotional health (Ho & them, for all the efforts made, for always pursuing their well-being, Neo, 2021). The participants verbalized feelings of loneliness, sadness, and for their constant involvement in the patients' recovery. The and helplessness in the face of an unforeseen situation, which coin- group of nurses was the most praised and valued group by the partici- cides with other studies (Abad et al., 2010; Siddiqui et al., 2019; Eli pants. Many agreed on this group's excellent treatment, kindness, and et al., 2020; Shaban et al., 2020,). Similarly, according to the studies empathy. They remembered particular actions, many of them effort- by Luchetti et al. (2020) and Purssell et al. (2020), loneliness is related less, such as offering a coffee, a caress, a conversation, providing in- to higher mortality and morbidity, is detrimental to emotional health, depth information, or always encouraging them. Small gestures made and has potential consequences for physical health. them feel better and experience the situation differently. In the same The use of PPE was another prominent theme throughout the way, they emphasized the great professional care offered by the interviews and contributed directly to the isolation and loneliness nurses. experienced by the participants. PPE was related to the depersonali- zation of care, making it challenging to identify professionals and even I have two beautiful memories from two wonderful generating feelings of stigmatization among patients. Especially in the nurses—the day I said I am dying for a coffee, and they case of people diagnosed with COVID-19, this stigma is accentuated brought me a coffee, and the day I needed company, because they feel excluded from other patients, making them feel like and stayed with me, holding my hand. You do not “strange creatures,” a concept that emerged in some of the inter- know how much I appreciated it. It was a negative views. Other authors have analyzed this aspect in other hospital care experience due to the disease, but it has allowed me to situations and reached similar conclusions (Gammon et al., 2019). meet wonderful people who reduced my anguish. (P8) 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 alleviat- 5 | DISCUSSION ing their need for physical contact and providing them with the strength and motivation to persevere. This idea opens the door to This study highlights the feeling of isolation and its relationship with future research in new technologies in times of crisis, which some the loneliness experienced by the participants during their COVID-19 authors have already launched (Conroy et al., 2020; Shah et al., 2020). hospital stay. Furthermore, it reveals the meaning that the inter- For example, new technologies in the public health environment have viewees gave to the concept of autonomy, with particular emphasis made it possible to obtain epidemiological information quickly and on the efforts of health personnel to maintain it, and the limitations improve the identification and traceability of cases (Budd et al., 2020; on those efforts. Although autonomy is greatly valued, restrictions Molina-Mula & Gallo-Estrada, 2020). had to be implemented for the patients' and the general population's This study also described the experiences of family members well-being to provide the best care. Notably, participants considered regarding their relative's hospitalization. The caregivers experienced this limitation to be part of their duties as patients and caregivers or feelings similar to those of the patients. In addition, family members' as members of society, and their loss was assumed to be natural, typi- concern about being excluded from the care process has been ana- cal of the process they were experiencing, and always in furtherance lyzed in the literature (Bartoli et al., 2021). Evidence shows that dis- of the common good (Bellver-Capella, 2020). These themes are ease impacts all family members and their relationships, making it repeated in other studies that analyze the experiences of hospitalized necessary for the family to adapt to new demands, such as the distri- persons, especially in areas with strict infection controls or where sig- bution of new roles and functions (Canga et al., 2016). Family con- nificant isolation periods are required (Adams et al., 2020; Shaban cerns, fear, and anxiety increase when the disease leads to et al., 2020; Siddiqui et al., 2019; Vottero & Rittenmeyer, 2012). Like- hospitalization. In Spain, health services are organized around wise, ethical issues related to care have emerged among the central patients, considering the family as part of the context; they are a pillars of healthcare, and their consideration and analysis are essential resource that provides a solution in caring for their sick relatives in all areas of health, especially in crises such as those described (Canga, 2014). During the COVID-19 pandemic, families could not (Bellver-Capella, 2020; Tyrrell & Williams, 2020; Sun et al., 2021; care for their loved ones. As a result, families suffered alone at home WHO, 2021). with little or no follow-up from healthcare professionals. Therefore, Owing to the pandemic, patients had to remain in isolation families must be included as another vital piece in the healing process throughout their hospital stay. In addition, the unique circumstances for future pandemic situations. It is known that interventions that of the COVID-19 pandemic meant that the restrictive measures consider the family as a caring unit positively impact health for both imposed in various social environments, including the hospital envi- patients and family caregivers (Villanueva Lumbreras et al., 2015). ronment, have increased. Decrease in transmission of the disease is Another interview finding is that patients with COVID-19 had to based on physical distancing, which involves social isolation and pro- delegate much of their autonomy in order to control transmission, even fessionals' use of specific protective measures (Tyrrell & though their health status was stable and not critical (Molina-Mula & Williams, 2020). This means that patients were admitted alone and Gallo-Estrada, 2020). Preserving autonomy and mitigating the isolation faced challenging and complex situations in the absence of their loved of patients and their families during the pandemic was difficult, although 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License MESTRES-SOLER ET AL. 859 not impossible, as indicated in this study. Therefore, nurses became the knowledge of the pandemic. In many cases, the patient assumed a reference persons for their care and acted as intermediaries for care- passive role with the nursing staff because their relationship focused givers and their families (Flagg, 2015; Woo et al., 2017). For this reason, on trust in decision-making (Molina-Mula & Gallo-Estrada, 2020). Evi- nonverbal communication, such as caresses or gestures, acquired great dence from a prior study highlights the importance of adequate con- value in ensuring excellent care. Likewise, the nurse–patient relationship trol of patient autonomy in the hands of nursing professionals evolved throughout the hospitalization process, passing through the (Skår, 2010). 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 6 | CONC LU SION professionalism, and the creation of a bridge between trust and nursing leadership (Woo et al., 2017). During the COVID-19 pandemic, feelings of loneliness among patients The nursing role is directly related to concepts such as the humani- and caregivers remained latent, affecting their emotional health zation of care and patient-centered care (Flagg, 2015). These aspects because of the strict isolation rules for infection control. Therefore, are of particular relevance in 2020, which the World Health Organiza- reduced autonomy concerning measures and protocols for the benefit tion has declared it the year of the nurse and midwife because of the of public health must be added. This fact has been well accepted by excellent health work of the nursing profession (Borger, 2020). In addi- all the participants, who have also shown appreciation for the work tion, COVID-19 has highlighted the importance of this profession's done by the healthcare staff. work—its holistic approach including a sense of responsibility, capacity This study highlights the emotional impact of isolation for patients for sacrifice, professionalism, and dedication and commitment to the and caregivers due to the COVID-19 pandemic: feelings of loneliness patients and families that nurses serve (Fernandez et al., 2020; Ulrich and loss of autonomy. Appropriate strategies must be created to alle- et al., 2020). viate these situations. It is confirmed that caregivers should be The gratitude of the participants toward the health personnel and included in the care process, which is a positive element for all actors the acceptance of the measures they took to protect themselves and involved. From the COVID-19 pandemic, it is necessary to utilize other people being treated reveals a controversial issue that arises for information and communication technologies in a new health scenario healthcare providers in crises: the fine line that separates the care of as it has hastened the design of new health strategies and catalyzed patients from the self-care of professionals (Bellver-Capella, 2020). the rapid implementation of digital-virtual channels in many areas. Health personnel have been among those most affected by COVID- Telemedicine allows access to health information and professional 19, and critical situations have been experienced due to the lack of contacts, as well as the implementation of online procedures and clini- adequate material to protect themselves from the risk of infection, cal diagnoses, and promotes telephone assistance. In addition, situa- increased workloads, and psychological and emotional effects of the tions and conflicts triggered by the pandemic heighten the need to stress experienced (Braquehais et al., 2020;  mez-Ibáñez Go search for new strategies and resources to deal with patient isolation, et al., 2020). The interviewees perceived this dedication, effort, and loss of autonomy, and stress, all of which impact the evolution of ill- involvement of the health workers, and wanted to express their grati- ness and, in time, threaten to turn into mental health issues. tude repeatedly to everyone who had collaborated in their recovery. Facing the complexity of a global pandemic, the ethical issues that AUTHOR CONTRIBU TIONS arise must be considered: not only those treated in this study, such as Study design: Olga Mestres, Juan M. Leyva, Rebeca Gomez Ibañez. the autonomy violation and isolation, but also the scarcity of material Data collection: Olga Mestres, Marta Rosales, Juan M. Leyva, Mariela and human resources, health system saturation, implementation of Aguayo. Data analysis: Juan M. Leyva, Mariela Aguayo, Rebeca Gomez experimental therapies, and vaccine distribution that can be encom- Ibañez. Manuscript writing: Olga Mestres, Juan M. Leyva-Moral, Mar- passed in the principle of equity; the consequences of this will prevail iela Aguayo, Esperanza Zuriguel, Marta Rosales, Rebeca Gomez- for a long time. Ibañez. Although the sample may be small, reaching data saturation ensured the rigor and transferability of the results in territories with CONFLIC T OF INT ER E ST similar health policies. It should be considered that Spain has a free None declared. and universal health system with 24-hour open access for family members; therefore, the results cannot be applied to other health DATA AVAILABILITY STAT EMEN T contexts. It should also be taken into account that because of the The data that support the findings of this study are available on sampling procedure, it is highly probable that only those whose expe- request from the corresponding author. The data are not publicly rience with professionals and the system was satisfactory agreed to available due to privacy or ethical restrictions. participate, thus ignoring the experiences of those who were dissatisfied. OR CID Therefore, patients consciously sacrificed their autonomy for the Olga Mestres-Soler https://orcid.org/0000-0002-1548-5763 common good within a dynamic of acceptance and accurate Juan M. Leyva-Moral https://orcid.org/0000-0003-4241-4992 14422018, 2022, 4, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/nhs.12986 by Readcube (Labtiva Inc.), Wiley Online Library on [01/02/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License 860 MESTRES-SOLER ET AL. Mariela Aguayo-González https://orcid.org/0000-0002-5968-5214 Flagg, A. J. (2015). The role of patient-centered care in nursing. 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