Background
In early March 2020, the WHO declared COVID-19 a global pandemic [1, 2]. The first wave of COVID-19 heavily impacted vulnerable populations, especially in local or regional hospitals, leading to significant casualties among the frail, chronically ill, and dementia patients [3‐5]. This highlighted the extensive human, social, and economic costs of the pandemic both locally and globally [6]. By March 28, 2022, Spain had recorded 11.5 million COVID-19 cases, 653,000 hospitalizations, 55,000 ICU admissions, and 119,000 deaths. In the Balearic Islands, there were approximately 268,000 cases, 10,000 hospitalizations, 1,300 ICU admissions, and 1,600 deaths [1]. In the Manacor Hospital, 705 patients were admitted, 92 required ICU care, and 62 deaths were reported during the same period. The health system was strained, urging the restructuring of hospitalization units and an increase in ICU beds to meet the demand for care. Strict isolation and home confinement measures were implemented to control the spread of the virus and prevent the collapse of health centers [7]. However, these measures also adversely affected the health of the most vulnerable populations, worsening their biopsychosocial well-being due to isolation [8‐11]. This situation led to increased consumption of psychotropic drugs, higher chronic care demands, and delays in urgent surgical interventions, escalating morbidity and mortality [12‐14]. Prolonged use of personal protective equipment (PPE) also hampered effective communication between healthcare providers and patients [15]. Altisent, a physician and COVID-19 patient, described feeling physically and emotionally vulnerable, emphasizing the value of compassionate care and small gestures during his treatment [16]. Given the significant social and health impact of COVID-19, strategies were developed to protect the population and prevent in-hospital outbreaks, particularly through visiting guidelines for patients with poor prognosis [17]. Most of these guidelines restricted family visits to hospitals, nursing homes, and other healthcare facilities, causing widespread fear and distress among the public [18, 19].
In April 2020, the Balearic Islands Health System proposed a visitors’ policy aimed at improving the emotional well-being of patients and their families during the pandemic. This policy, based on recommendations from the Spanish Ministry of Health, mandated infection prevention and control measures, including restricted family visits and alternatives, such as video calls [20]. In the Manacor Hospital, the COVID-19 Commission adapted these recommendations to local conditions, aiming to balance emotional well-being and safety for patients and families.
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The COVID-19 Commission drafted two protocols. The first was the family visit protocol, which allowed a caregiver family member to visit for 15 min once or twice a day. The visiting caregiver family member was required to use personal protective equipment (PPE). The second protocol was the caregiver accompanying protocol, which allowed a caregiver family member to remain in the patient’s room at all times, providing care while using PPE. When the patient was discharged, the caregiver family member was required to stay in quarantine for a few days and undergo a SARS-CoV-2 test to confirm they had not contracted the virus. These measures were adjusted based on epidemiological trends and vaccination rates. The Case Manager Nurse (CMN) played a crucial role in facilitating visits by identifying low-risk family members and ensuring they were informed about PPE usage and the associated risks. For non-COVID-19 patients, visiting restrictions also varied according to the epidemiological situation. Generally, a family member could visit for one hour twice a day, with exceptions made for vulnerable patients at the healthcare team’s discretion. From January 2021, weekly PCR tests for SARS-CoV-2 were conducted on non-COVID-19 patients and their caregivers to facilitate visits.
The study focuses on experiences of patients and family caregivers regarding accompanying care, and support provided under the family visit and the caregiver accompanying protocols during hospitalization in the context of the COVID-19 pandemic.
Methods
Aims and reflexivity
This study aimed to explore the perceptions of patients and family caregivers regarding care and family support during hospitalization amid the COVID-19 pandemic at a regional hospital in Mallorca, Balearic Islands, Spain. Additionally, it sought to analyze the perceived impacts and put forth strategies to enhance care and protocols in future pandemics.
This study was undertaken by a team of five nurses (four women and one man) working in the clinical practice, clinical management, teaching, and research fields. Researchers have diverse professional backgrounds and different levels of experience. Two authors are clinical researchers and another holds a nursing management role, and they were directly involved in the care of COVID-19 patients or participated as members of ethical or clinical committees during the pandemic. Two other authors are research experts in qualitative health research. The research team adopts a reflective stance based on certain premises. First, we recognize that the knowledge and experiences of patients and their families regarding hospital visitor guidelines during the pandemic are critical to the review and development of future protocols or interventions in crises similar to that of COVID-19. Secondly, we believe that the experiences, opinions and perspectives of patients and their relatives provide relevant data to revise existing visitor guidelines, and to make policies more participatory and humanizing.
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Study design and setting
We conducted a qualitative research design following an interpretive phenomenological approach, which enabled the study of the phenomenon within its natural context in order to derive interpretations based on the participants’ meanings [21]. The interpretive phenomenological approach was particularly relevant, as the study aimed to gain a deep understanding of the subjective experiences and lived realities of both patients and family caregivers. Thus, we focused on capturing these experiences from the perspective of those directly involved, which is especially critical in the healthcare context, where emotions, perceptions, and personal meanings can strongly influence well-being [22]. Specifically, the employed interpretive approach asserts that individuals cannot be fully understood in isolation from their cultural, social, or historical contexts [22]. A thematic analysis was then made using data obtained from semi-structured interviews and the first author’s field diary [23].
The semi-structured interview is a frequently used technique in health and social sciences that allowed us to better understand the experiences and perspectives of the phenomenon of study [24]. In turn, the field diary enabled the principal investigator to make descriptive, methodological and theoretical notes during fieldwork and record observations on the personal and team reflective process [25].
The Regional Hospital in Manacor, Balearic Islands, Spain, was selected for accessibility and feasibility, as it is the workplace of researchers who had first-hand experience of the visiting policies in effect and the phenomenon of study. This also facilitated the transfer of knowledge garnered in this research. The hospital serves a population of approximately 160 thousand people, has 230 beds, 6 ICU beds and 8 operating rooms. Since the beginning of the pandemic, the number of beds in the COVID-19 unit varied, starting with 18 beds, and reaching a maximum of 110 beds. These figures changed depending on the incidence rate. ICU beds increased to 12 for COVID-19 patients. The number of ICU beds for non-COVID-19 patients was also modified. Operating theatres and resuscitation beds were used according to the occupation circumstances, and many patients had to be referred to other hospitals, as operating theatres were transformed into ICU boxes. The staffing ratios in the ward were 1 nurse and 1 assistant for every 5 patients and 1 nurse per patient in ICU. There were 128 non-COVID-19 hospitalization beds, with numbers varying depending on the incidence of COVID-19.
Participants and sampling
An intentional theoretical sampling of patients and family caregivers was undertaken, with recruitment strategies employing a snowball approach by key informants, who provided information on patients admitted during the first and subsequent waves of COVID-19, and their family caregivers. A total of 30 interviews were conducted, 13 of them with patients and another 17 with their caregivers, until data saturation was achieved.
As the analysis progressed, profiles of participant Patients (P) and Family Caregivers (FC) were balanced to include a diverse range of situations according to whether they had been hospitalized for COVID-19 (CV), or Non-COVID-19 (NCV) conditions, in General Hospitalization Units, or Intensive Care Units. The length of caregiving and the level of dependency of the person cared for were also taken into account. Additionally, it was deemed relevant to include family caregivers who had accompanied patients at the end of their life, to gather narratives about grief in the context of the pandemic.
The inclusion criteria for patients (P) were being hospitalized for 7 or more days due to CV or NCV, and being able to speak and understand Catalan or Spanish. The inclusion criteria for family caregivers (FC) were that the patient they were caring for had been hospitalized for 7 or more days due to CV or NCV, and that they could communicate in Catalan or Spanish. All participants had to be over 18 years old.
Exclusion criteria for patients included difficulties in effective communication, cognitive impairment at the time of the interview, or hospitalization in pediatric or obstetric units. Exclusion criteria for family caregivers included any mental health issues or cognitive disorders, or the fact that their relative was hospitalized in pediatric or obstetric units.
To recruit patient participants, the proportion of men and women hospitalized during the pandemic was considered, while data on sex was not taken into account to select family caregivers. The recruitment process was undertaken by the three researchers with the most extensive engagement in clinical practice in the hospital and, consequently, the greatest interaction with patients and family caregivers.
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The interviewers contacted the patient or family caregiver to explain the purpose of the study, inclusion and exclusion criteria, and the approximate duration of the interview. Even so, at the beginning of each interview, the interviewer confirmed the required criteria were met to ensure proper communication.
Data collection
The interviews took place between April and June 2022. A total of 30 semi-structured interviews were conducted individually, except in instances where the patient and caregiver requested to be interviewed jointly. The location of the interviews was agreed upon between the interviewer and interviewee, with views to ensure a comfortable and quiet environment, if possible, outside the hospital. The interviews were face-to-face, with a duration ranging from 20 to 35 min. Each interview was audio recorded and transcribed for analysis. Prior to the interviews, participants completed a sociodemographic data sheet. A structured interview script was prepared, as outlined in Table 1. The interview process consisted of three phases: introduction, development, and closure. During the development phase, we posed questions designed to explore the objectives of the study. The interviewer’s role was non-directive, allowing participants to prioritize and foreground their stories. The interview script was reviewed by study members and qualitative research experts.
Table 1
Interview guide
Participants | Questions |
|---|---|
Patients | During your admission to (COVID-19/other unit/ICU) what memories do you have about visitor guidelines? • Regarding visitor guidelines, what made you feel better and comforted you more? How did you feel at the time of your admission to (COVID-19/other unit/ICU) when you learnt you should be isolated in a room or under restricted visitation measures? • Could you explain how you felt during the hours you were alone in the room? How did time pass? • How did visitor guidelines influence your physical and/or emotional recovery? From your experience, what improvements would you propose in relation to visitor guidelines in situations such as those experienced during the pandemic? • What improvements would you propose regarding the communication and information received from nurses, nurse assistants or physicians regarding visits? |
Family caregivers | What memories do you have and what did it mean for you to visit or accompany your family member during admission? • What made you feel most comforted when visiting or accompanying? How did the visiting system affect you? • How did being able to visit/accompany affect their physical recovery and/or emotional state? • How did your family member feel about your visits? What did it mean for him/her? What improvements would you propose in relation to visits? How can it be improved in situations like this? • What is your opinion about how you were treated by or the information you received from nurses, nurse assistants or physicians regarding visits? In cases of grieving family members: How did the hospital’s visitor guidelines affect the experience of loss and mourning of your family member? |
No incidents occurred during the face-to-face interviews. Most of the participants expressed gratitude for the opportunity to engage in dialogue and share their experiences. The interviews were conducted between 12 and 18 months after admission. This timeframe was deemed appropriate, as it allowed participants to recall the events while minimizing the risk of revisiting potentially traumatic memories.
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Data analysis
This study employed the thematic analysis procedure proposed by Braun and Clarke [21]. Thematic analysis is a flexible and useful method for qualitative research that seeks to identify patterns or themes [26]. This analytical approach involves organizing and examining data in detail to uncover key insights [27]. Thematic analysis is particularly useful for health research projects that aim to describe important issues affecting specific groups or individuals.
The transcribed data were reviewed multiple times, and initial observations were recorded to familiarize with the material. Interesting data features were then coded, and the codes were reviewed and grouped into potential themes. The researchers then identified themes and subthemes, compared the data, and created a thematic map.
For all transcripts, the team met regularly during the analysis to systematically compare and discuss discrepancies between their independent application of codes. Coded content was also reviewed in these meetings to ensure consistent coding as the codebook evolved. Therefore, the codification of each interview was the result of three revisions: two independent ones and a joint one. Once the list of codes had been completed, two team members drew up the analysis categories and subcategories and revised the codes under each of them. Subsequently, they compared the coherence of each code and revised the list of codes, excluding the ones that lacked a specific sense and unifying the ones that, despite having the same meaning, had been tagged with different codes. It is important to note that few codes referring to different categories were unified and that most of the fusions were done under the same categories. Finally, a continuous analysis was conducted to refine the details of each theme and uncover the overall story of the analysis [26].
Rigor
The research followed the criteria of credibility, transferability, reliability, and confirmability proposed by Guba and Lincoln [28, 29]. We secured the checklist of items that needed to be included in qualitative research reports (COREQ) [30]. The research team ensured methodological rigor by implementing validity strategies, such as literal and systematic transcription of interviews, inclusion of negative or extreme cases, and selection of quotes to illustrate results. Reliability strategies were used, including a thorough description of each phase of the study, including the context, final participant sample, sampling strategy, recruitment, data generation, and data analysis. To ensure internal and external transferability, the study provided a detailed description of participant characteristics and study context. Broad inclusion criteria were used to obtain a diverse participant sample, data were analyzed until saturation was reached, and a solid conceptual framework was designed based on normative concepts. Triangulation of researchers was utilized to reveal different dimensions of the study phenomenon and ensure robust data analysis. Additionally, reflexivity was practiced by the researchers throughout the entire process [31].
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Ethical considerations
The study protocol received approval from both the Research Ethics Committee of the Hospital and the Research Ethics Committee of the Balearic Islands (Ethical code: IB 4684/21 PI). It was also conducted in accordance with the principles outlined in the Declaration of Helsinki.
Participants were provided with both verbal and written information regarding the study and signed an informed consent form prior to the commencement of the interview process. Data collected from all participants were anonymized, and both personal and interview information were securely stored and treated as confidential. Access was limited to the research team members.
Participants were informed of their right to withdraw from the study at any time without the need to provide a reason. They were also assured that withdrawal from the interview would not impact the current or future care they received from hospital professionals. Given the sensitive nature of recalling their experiences, interviews were conducted at a pace that respected the individual needs and timing of each participant. Additionally, mental health professionals remained informed and available throughout the interview process to offer their support as needed.
Throughout the study, data safety and confidentiality were prioritized. All personal information collected was securely stored in password-protected files, accessible only to authorized members of the research team. To ensure participant anonymity, all identifying information was removed from the dataset, and pseudonyms were used instead of real names. Furthermore, data were anonymized prior to analysis to eliminate any risk of identification.
Results
The sample of patients included 20% of women and 80% of men, with an average age of 65 years (ranging from 31 to 84). Among the family caregivers, 60% were women and 40% were men, with an average age of 53 years (range from 43 to 64 years) Table 2. The Manacor Hospital held an average of 9.4, 8.4 and 6.7 days per hospital admission in 2020, 2021 and 2022, respectively.
Table 2
Characteristics of patients and family caregivers
Participant | Age | Sex | Relationship | Dependent disease | Unit |
|---|---|---|---|---|---|
1 | 84 | F | Mother | COVID-19 | GU |
2 | 56 | M | Husband | COVID-19 | GU |
3 | 53 | M | Husband | COVID-19 | ICU |
4 | 76 | M | Father | COVID-19 | GU |
5 | 66 | M | Husband | COVID-19 | ICU |
6 | 64 | M | Husband | COVID-19 | ICU |
7 | 84 | F | Mother | NON COVID-19 | GU |
8 | 76 | M | Father | NON COVID-19 | GU |
9 | 64 | M | Father | NON COVID-19 | GU |
10 | 31 | M | Son | NON COVID-19 | GU |
11 | 64 | F | Wife | COVID-19 | ICU |
12 | 51 | M | Son | COVID-19 | GU |
13 | 49 | F | Daughter | COVID-19 | GU |
14 | 53 | F | Wife | COVID-19 | ICU |
15 | 44 | M | Son | COVID-19 | GU |
16 | 45 | F | Friend | COVID-19 | GU |
17 | 57 | F | Wife | COVID-19 | ICU |
18 | 60 | M | Son | COVID-19 | GU |
19 | 61 | F | Wife | COVID-19 | ICU |
20 | 58 | M | Brother | NON COVID-19 | GU |
21 | 51 | M | Son | NON COVID-19 | GU |
22 | 49 | F | Daughter | NON COVID-19 | GU |
23 | 53 | M | Son | NON COVID-19 | GU |
24 | 44 | M | Son | NON COVID-19 | GU |
25 | 43 | F | Daughter | NON COVID-19 | GU |
26 | 45 | F | Friend | NON COVID-19 | GU |
27 | 60 | M | Son | NON COVID-19 | GU |
The three central themes identified from the accounts of patients and family caregivers are: “personal and family impacts”, “impacts of professional and organizational practices”, and “improvement proposals”. Due to the article’s limited length, we selected a sample of quotation excerpts to illustrate the results. We have conducted a review of the quotations and selected those that most effectively illustrate the results. Table 3 shows the identified themes and sub-themes.
Table 3
Themes and sub-themes identified on patients and family caregivers’ perceptions during the pandemic
Themes | Subthemes |
|---|---|
1. Personal and family impacts | Importance of Family in Patient Well-being and Care |
Loneliness and Boredom | |
Suffering and emotional discomfort | |
Distance, lack of Touch and contact | |
Traumatic mourning and post-traumatic Stress | |
Acceptance and values. | |
2. Impacts of Professional and Organizational practices | Lack of information and inconsistency |
Complacent satisfaction, acceptance, understanding | |
“COVID-19 Centrism” | |
Providing Attention and Emotional Support | |
3. Improvement proposals | Humanization of care |
Address special situations: end-of-life, loneliness, dependency and fragility | |
Continuous Information to Families and Unifying Criteria |
Personal and family impacts
Importance of family in patient well-being and care
Family caregivers played a crucial role in implementing restriction protocols during the pandemic. They were responsible for ensuring the welfare and personalized, uninterrupted care of patients. Family support was linked to improved and expedited recovery, both in terms of physical and emotional health.
“He consistently emphasizes you provided significant assistance, you imparted considerable strength” FCCV_8.“Psychologically, the presence of a loved one significantly aids, providing a sense of familiarity akin to being at home despite the physical setting.” PCV_3”.
Loneliness and boredom
Patients reported experiencing emotions of loneliness and boredom as a result of visitation restrictions. They conveyed feelings of abandonment, insecurity, and melancholy when left alone, with the sense that time had halted. Their only interactions were with the nursing or cleaning staff, either when requesting something or on rare occasions throughout the day.
“If you asked for something, they came, but if not, you only saw three nurses a day, the cleaning lady, and that’s it.” PCV_6.“Time passed here like an hourglass.” PCV_2.
Suffering and emotional discomfort
Participants conveyed distress and emotional unease stemming from the loss of their autonomy. Several of them had come to the hospital on foot, only to experience a rapid and severe decline in their health that left them dependent on others. They also expressed apprehension regarding the world outside and the wellbeing of their family members, particularly the elderly who were living alone. At the same time, they feared transmitting the infection to their loved ones and potentially spreading it to others.
“The body didn’t respond. I couldn’t move on my own, physiotherapists had to come and help me… maybe if I had someone with me all the time, but you had to force them to stay locked up 24 hours a day.” PCV_6.“He went a day and a half without seeing anyone… he felt abandoned. He suffered for his elderly parents at home alone.” FCCV_7.
Distance, lack of touch and contact
Patients experienced forced separation from their families, limited contact with their loved ones, and the use of personal protective equipment. As a result, they felt vulnerable, fragile, and uncertain, with a persistent fear of contagion.
“It was brutal. It coincided that we were all locked up, you couldn’t visit anyone. [Crying] No one could come to see you… I also had COVID-19 when he was admitted. I couldn’t even be with my children…” FCCV_1.“We couldn’t see faces; due to the PPEs the contact was with NO ONE.” CCV_3.
Traumatic mourning and post-traumatic stress
The recollections of relatives about the hospital admissions of their loved ones continue to evoke painful memories, post-traumatic stress, and traumatic grief. The visits made by family members, particularly those at the end of life, played a crucial role in ensuring proper care and facilitating functional grief.
“I would tell him: I have to go, I can’t stay longer, and he would respond: am I going to be alone again?” FCCV_3.“After much insistence, my brother was able to enter… I never saw him alive again.” FCCV_3.
Acceptance and values
Participants emphasized the significance of setting a daily purpose to rationalize their struggle against hardship, exhibiting resilience and retaining optimism.
“If you don’t have something to look forward to… something to fight for… I clung to the desire to go out on the boat to fish.” PCV_5.“Since COVID-19, I value life differently.” PCV_6.
Impacts of professional and organizational practices
Lack of information and inconsistency
Patients and family caregivers expressed that the information provided during the pandemic was highly inconsistent. While they acknowledge that some level of epidemiological uncertainty is to be expected, they assert that the degree of variability and lack of information were excessive. Patients and their family caregivers observed that the provision of information and care for patients could vary depending on the clinical unit and the healthcare professionals involved. They identified a lack of standardization in the spread of information and implementation of practices by medical practitioners. Specifically, they received insufficient guidance regarding visiting protocols, inadequate flexibility in special situations such as end-of-life care, and significant variation in the actual visiting hours.
“Depending on who was in charge, you could stay for 20 minutes or half an hour or more.” FCCV_10.“So, my mother and I were both in the room. And… yes, every time a nurse came in, they would ask us: ‘What are both of you doing here?’ ‘We were told we could both be here…’ ‘Oh, sorry,’ the nurse would reply.” FCNCV_4.
Complacent satisfaction, acceptance, understanding
The discourse of the population serviced at the Manacor Regional Hospital hints at a community culture in which patients and family caregivers express gratitude towards health professionals and at a sense of belonging to the hospital as a defining element of the region’s identity. This gratitude is conveyed through a respectful, accommodating, and appreciative attitude towards professionals, and a willingness to comply with the measures implemented during the pandemic.
“I can’t complain about anything because they always treated me like a queen” PCV_1.“From my perspective, what I experienced here were very logical, normal, and easy restrictions. This is the truth.” PNCV_3.
COVID-19 centrism
Participants acknowledge the significance and primacy of the media and the health professionals in the containment and proliferation of COVID-19. They observe that the attention was primarily directed towards the physical sphere, while the psychological and communal aspects of individuals were neglected.
“I agree that it is very contagious, and we need to protect ourselves, but… we are people” PCV_6.“They told me not to touch anything… I believe that with gloves and PPE, it would have been fine to touch the bed… I think there was no risk” FCCV_10.
Providing attention and emotional support
Despite the challenges and deficiencies, the respondents emphasize the indispensable emotional support provided by healthcare professionals, particularly in arduous and end-of-life scenarios.
“In the last moments, the care provided by all the professionals was very good” FCCV_9.“Both doctors and nurses treated us very well” PNCV_3.
Improvement proposals
Humanization of care
Patients and their family caregivers identified significant deficiencies in the attention and care of basic needs, such as poor communication, anxiety, emotional stress, loneliness. They propose a person-centered care approach and, therefore, more humanized practices, in which health professionals do not delegate to family caregivers.
Participants thought that the visiting and accompanying protocols were imperative, but suggested that in addition to safety, more attention should have been paid to the people. That is, besides guaranteeing quality care, the individual and contextual needs of patients and families should be considered.
“I think there are moments that do not justify certain actions, I think more attention could have been given, at least, to make the situation better. I mean… the images I saw… I never imagined seeing them in a hospital.” FCCV_9.“My wife made the bed for me three or four times, she didn’t want to do it because they told her, don’t move, don’t touch anything, but I told her, please make the bed for me, I can’t.’ It’s not that I didn’t want to make the bed; I simply couldn’t, I just didn’t have the strength. I eventually managed to do it, but it was very hard for me” PCV_6.
Address special situations: end-of-life, loneliness, dependency, fragility
Care for those in vulnerable situations must be improved by ensuring that, in safe conditions, people can die in the company of their loved ones. The loneliness of older, dependent and fragile people should also be avoided by being flexible and adaptable to each context.
“When he was informed that he had little time left to live, he asked for his friends to come to say goodbye… in the end, they were able to come, he wanted to bid farewell to everyone.” FCNCV_7.“…giving the medication for agitation in advance and not waiting for the patient to be agitated, jumping out of bed, removing IV lines… these are images I will never forget… my father tied to the bed. When they gave him the pill, it allowed my mother and me to rest and he was calm” FCNCV_4.
Continuous information to families and unifying criteria
It is essential to find effective communication channels and coordinated protocols with the aim of minimizing contradictory information. Furthermore, it is important to keep families informed of the evolution of the patient’s health status.
Participants request that, in future health crises, patients’ health status should be monitored after being discharged from the hospital. Participants felt abandoned by professionals in the primary care system who did not adequately monitor the physical and psychological consequences of COVID-19.
“We gave our phone numbers to all the professionals, some said you have to give it to the nurse, others to the doctor, and in the end, no one called” FCCV_3.“I am very disappointed because my doctor doesn’t know if I’m alive or dead, after discharge you are the first healthcare person to contact me” PCV_2.
Discussion
This study is significant as it reveals the unique challenges and emotional burdens faced by patients and their family caregivers during an unprecedented global health crisis. The findings elucidate the profound personal, family, professional, and organizational impacts, as well as the areas requiring improvement to better address the needs of hospitalized individuals and their families.
The study underscores the critical role of family support in patient well-being and recovery. The narratives show that the presence and involvement of family members not only enhances emotional stability, but also contributes significantly to physical recovery. This aligns with existing literature that harbors the importance of social support in health outcomes [32‐37]. However, the pandemic-induced restrictions severely limited this support, leading to feelings of loneliness, boredom, and emotional distress among patients [38]. The enforced separation from loved ones, compounded by the use of personal protective equipment (PPE), fostered a sense of vulnerability and isolation. These findings resonate with prior studies that documented similar emotional challenges faced by hospitalized patients during the pandemic [39‐42].
The emotional toll on both patients and family caregivers was acute, with many experiencing traumatic mourning and post-traumatic stress. This aspect is critical as it foregrounds the long-term psychological impact of the pandemic on individuals, requiring comprehensive mental health support services [43]. The study also highlights the resilience and adaptive strategies employed by patients, such as finding personal meaning and purpose, which underscores the importance of healthcare professionals fostering psychological resilience in healthcare settings. Patients could benefit from the integration of team coordination specialists who can allocate time and resources to promote coping strategies during periods of stress [44].
The inconsistency and variability in the information provided to patients and family caregivers emerged as a significant concern. The lack of standardized communication protocols and the perceived inadequacies in the dissemination of information exacerbated the stress and confusion experienced by participants [45]. This finding points at the need for clear, consistent, and empathetic communication strategies in healthcare, especially during crises.
Effective communication serves as the foundation of the nurse-patient relationship, boosting trust and ensuring the delivery of safe and high-quality nursing care [46‐48]. Despite the challenges of the pandemic, the study participants expressed a sense of gratitude and respect towards healthcare professionals, recognizing their efforts amidst difficult circumstances. This community culture of appreciation and compliance is noteworthy, as it reflects a cooperative patient-provider relationship that can be pivotal in managing healthcare crises. However, the emphasis on COVID-19 centrism, where physical health was prioritized over psychological and communal well-being, indicates a need for a more holistic approach to patient care.
The participants’ suggestions for more humanized care practices are particularly relevant. They advocate for a person-centered approach that addresses not only the clinical, but also the emotional and psychological needs of patients and family caregivers. This aligns with a broader movement towards person-centered care, which nurtures empathy, compassion, and responsiveness to individual patient needs [49, 50].
Furthermore, the study highlights the necessity of improving care for vulnerable populations, such as those at the end of life, to ensure that they can be accompanied by their loved ones. This is crucial for providing dignified and compassionate care, especially in end-of-life scenarios [47]. The call for continuous information and consistent communication protocols also underscores the need for effective coordination within healthcare teams to avoid the spread of contradictory information and ensure that families are adequately briefed about their loved ones’ health status [45].
The participants’ feelings of post-discharge abandonment reveal significant gaps in the continuity of care, particularly in the monitoring of long-term effects of COVID-19. This finding underlines the importance of post-discharge support and follow-up care, which are essential for addressing the ongoing health needs of patients recovering from severe illnesses [51].
The results signal the critical need to reassess and adapt action protocols in response to health crises, with an emphasis on addressing the specific needs of patients and their families. By doing so, the negative outcomes identified in this study could be mitigated [52, 53].
The implications of this study extend beyond the immediate context of the COVID-19 pandemic, offering critical insights for the improvement of patient and family caregiver support across healthcare settings more broadly. The findings reveal the urgent need to enhance interprofessional communication pathways and timelines, as well as communication between healthcare providers, patients, and their families. Furthermore, developing a critical and reflective perspective on clinical practice is essential to ensure that healthcare professionals continue to prioritize a humanized, person-centered approach that offers comprehensive support. This involves addressing the physical, psychological, social, and emotional needs of both patients and their families, paying equal attention to each of these variables.
It is imperative for healthcare organizations and professionals to focus not only on improving patient and family care but also on strengthening their own resilience and preparedness for future health crises. Furthermore, the establishment of comprehensive post-discharge follow-up systems is essential for monitoring long-term health outcomes and providing necessary ongoing support to facilitate recovery.
Regarding the limitations of this study, it is noteworthy to acknowledge that, as in any qualitative research, the findings cannot be generalized as universal principles. Instead, they may be transferable to professional, social, and political contexts with similar characteristics. While the study was conducted in a single hospital, it provides valuable contextual data that can be transferred to similar hospital settings. The study primarily focused on the perceptions of patients and family caregivers, whose voices have been less explored in the context of the pandemic. However, future research should also consider the experiences of clinical professionals, managers or policymakers involved in public health strategies. Research examining experiences and memories that may be traumatic or distressing faces challenges due to participants’ reluctance or the complexities of managing interviews, given the intensity of the experiences involved. Nonetheless, the majority of participants to this study consented to participate, and those who did expressed appreciation for the opportunity to share their experiences.
Conclusions
The findings highlight the emotional toll restricted visitation policies took on patients and family caregivers during the pandemic. Limited family support led to loneliness and distress, increasing vulnerability. Participants stressed the importance of family presence for emotional stability and physical recovery, emphasizing psychological resilience in healthcare. Our study also revealed communication inconsistencies, increasing stress and confusion. Clear and empathetic communication was deemed essential for patient satisfaction. Participants expressed gratitude to healthcare professionals and advocated for a person-centered approach that addresses both clinical and emotional needs. The study underscores the need to improve care for vulnerable populations, such as those at the end of life, ensuring dignified care. It also sheds light on the importance of post-discharge support and follow-up care for recovering patients.
Acknowledgements
We extend our gratitude to all individuals who have expressed interest in participating in this study, including patients, family members, caregivers, and key informants who have facilitated contact with potential participants. A special remembrance for those who passed away during the pandemic and their families.Our pre-print has been published on https://www.researchsquare.com/article/rs-3100032/v1.
Declarations
Ethics approval and consent to participate
The study protocol received approval from both the Research Ethics Committee of the Hospital and the Research Ethics Committee of the Balearic Islands (Ethical code: IB 4684/21 PI) and was conducted in accordance with the principles outlined in the Declaration of Helsinki. Written informed consent was obtained from all participants voluntarily.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
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