key: cord-0715107-bv3sm15g
authors: Simeone, Silvio; Vellone, Ercole; Virgolesi, Michele; Sterling, Madeline R.; Alvaro, Rosaria; Pucciarelli, Gianluca
title: “I found myself alone” – A phenomenological study of the home care workers' experience during the COVID‐19 pandemic
date: 2022-03-15
journal: Nurs Health Sci
DOI: 10.1111/nhs.12935
sha: 7437f56c39416b98a88aec54f96026a7364ba441
doc_id: 715107
cord_uid: bv3sm15g

Home care workers (HCWs) are a highly heterogeneous population in Italy in terms of their professional qualifications. HCWs play an important role in helping patients affected by chronic diseases and their families. Although many investigators have studied the lived experiences of family caregivers, few have been conducted “to give a voice” to HCWs and even fewer have examined the experiences of HCWs during the present COVID‐19 pandemic. We investigated the lived experiences of HCWs during the first wave of the pandemic in Italy. Cohen's phenomenological research approach was used to conduct this study. In our study, we enrolled and interviewed 19 HCWs who were female, and most were married, with an average age of 52 years. The participants were enrolled from September 2020 to November 2020, after the first COVID‐19 wave in Italy. Four main themes emerged from the analysis of the data: (1) “I found myself alone”; (2) from invisibility to visibility; (3) a fear of getting sick and infecting others; and (4) “Health or work? That is the question.” Understanding HCWs' lived experiences, especially those related to the COVID‐19 pandemic, is a first step in giving a voice to this important but vulnerable population in the healthcare workforce.

In December 2019, an unknown coronavirus, severe acute respiratory syndrome coronavirus 2, deemed to be the cause of coronavirus disease 2019 , was identified in China Wang et al., 2020) . The virus quickly spread around the world, causing a global pandemic (The Lancet Infectious Disease, 2020) . A specific estimate of the number of victims is difficult as the data change quickly (World Health Organization, 2020) . Among the European countries, Italy was one of the hardest hit (Bordi et al., 2020) probably because, compared with the other European countries, Italy has a greater older adult population affected by several chronic diseases (Tur-Sinai et al., 2020) .

Many families required a homecare worker (HCW)'s services also before the COVID-19 pandemic. Indeed, as described by a report (VITA, 2019) , it is estimated that in Italy there are approximately 865,000 HCWs, prevalently female and located in the north and center. Not being a service offered by the state, hiring an HCW has a big impact on families. Indeed, on average a year, the total overall expenditure is estimated at around 7 billion.

Because of the fear of getting infected (de Leo & Trabucchi, 2020), many home-dwelling older people who needed care hired HCWs, a type of informal caregiver paid for their services by the patient. HCWs provide personal caregiving services, including assisting their clients in activities of daily living, carrying out medically oriented tasks such as helping their older clients take their medications, and in some cases providing companionship to their clients (Grasmo et al., 2021) . In Italy, where this study was conducted, HCWs are generally Eastern European women who do not have the qualifications for or formal training to be HCWs.

Studies conducted in the United States have shown that HCWs played a crucial role during the first wave of the COVID-19 pandemic because of their proximity to clients and their provision of caregiving services (Sterling et al., 2018) . Although these people spend a significant amount of time helping their clients manage their chronic diseases, navigating the healthcare system (Ashley et al., 2010; Franzosa et al., 2018) and providing long-term assistance and post-hospitalization care for them (Jones et al., 2015 (Jones et al., , 2017 Madigan, 2008) , they are still an invisible and vulnerable workforce and are seldom the focus of research (Sterling et al., 2018) .

Indeed, although there have been many studies on the lived experiences of family caregivers (Simeone et al., 2016; Young et al., 2019) , most of these studies focused on unpaid caregivers such as family members, friends, and significant others. As for the few studies that have been conducted to give HCWs a voice by analyzing their lived experiences, almost all of them were conducted before the COVID-19 pandemic (Ayalon et al., 2015; Ohta et al., 2018 Ohta et al., , 2020 Sterling et al., 2018 Sterling et al., , 2020 . Indeed, to the best of our knowledge, only one study before ours has examined the experiences of HCWs during the present COVID-19 pandemic (Sterling et al., 2020) . This represents a research gap because it is well known that COVID-19 has had a big impact on people's lives, engendering feelings of isolation and fear in many and affecting their psychological state. The HCWs in Italy may have experienced these more intensely because most of them are migrants and because they have always been considered a high-risk subpopulation due to their poor health and social conditions and the absence of government regulations to promote their welfare. A full understanding of their lived experiences so far during the present pandemic will help clinicians and researchers develop tailored interventions to protect them and to better understand their relationships with their clients. This lack of attention represents a research gap because it is well known that COVID-19 has had a big impact on the healthcare workforce.

A full understanding of HCWs' lived experiences during the present COVID-19 pandemic might help clinicians and researchers develop tailored interventions to protect this population and to help them work better with their clients.

In light of the foregoing, the aim of the study was to analyze the lived experiences of HCWs during the first wave of the pandemic in Italy.

This study used Cohen et al.'s phenomenological research approach (Cohen et al., 2000) , which combines descriptive (Husserlian) and interpretative (Gadamerian) phenomenology, because it could enable a deeper understanding of the lived experiences of the participants and of the meanings attributed to such experiences. Cohen's phenomenology combines Heidegger's thought, which can be considered purely descriptive, with that of Gadamer, who contended that hermeneutics is the study of texts. He used that term broadly to mean language. He included not only what people write down but also, more important, what they say and the symbolic activities in which they engage. He stated that to have a world is to have a language: "Our experience of the world is bound to language." The approach is rooted in a motivation to gain access to the nature of consciousness itself, and the resulting position is based on the meaning of the individual's experience. The same approach has been successfully used by authors in previous studies designed to describe the lived experiences of caregivers and their clients (Simeone et al., 2016 (Simeone et al., , 2018 . In addition, phenomenology is particularly useful for examining topics that are complex, ambiguous, and emotionally laden (Smith & Osborn, 2015) .

Convenience snowball sampling was used for participant recruitment.

We started recruiting HCWs at employment agencies. Once we contacted the first HCWs, we asked them if they knew any other HCWs.

Through this network, we met other HCWs who were asked to be willing to participate in the study. This made it possible to get in touch with a HCW network and facilitate sampling. Participants were enrolled in this study from October to November 2020, after the first wave of COVID-19 in Italy. The participants' informed consent to participate in this study was obtained before collecting the data.

For inclusion in the study, the participants were required to (1) have been an HCW for at least 6 months before the study; (2) currently be providing care to an older person with or without a chronic disease; (3) understand spoken and written Italian; and (4) consent to participate in the study.

Following the chosen research approach, all the researchers involved in this study performed "bracketing" (i.e., putting aside or enclosing in parentheses their preconceptions of the phenomenon that was the object of the study). In the said research approach, it is important for researchers to identify and write down their hypotheses and beliefs about the phenomenon in question (a fundamental technique of "critical reflection") so that data analysis will not be influenced by the researchers' preconceptions.

By carrying out this reflective technique before data collection and analysis, the researchers can deliberately avoid introducing their own biases into the analysis process (Cohen et al., 2000) .

After the researcher/interviewer explained the nature and purpose of the study to all participants, the latter chose the date and time of their interviews. In full compliance with the restrictive measures issued to protect Italian citizens' health, this study used video call interviews, which, as described in the literature (Janghorban et al., 2014) , can fully substitute for the classic face-to-face interviews because they allow for the perceptions of nonverbal language. Video call interviews were conducted using the platform suggested by participants (i.e., Skype, teams or zoom). Each participants had access to a computer, and we did not meet any technical problems with the digital internet connection during the interview.

The interviews were conducted by the first, third, and last authors

using a single open-ended question to guarantee the participants' maximum freedom of expression. In this way, the "world" of each participant became the focus of the research (Polit & Beck, 2018) . The participants had previously had no contact with the researcher who conducted the interviews. To ensure that the participants would be able to freely relate and describe their lived experiences, the interviews were held at the venues and times chosen by the participants (where it was assumed they were most comfortable and without the presence of other people), and the interviewer maintained a welcoming attitude during the interview, showing utmost cordiality and impartiality. During the interviews, the researcher wrote field notes (i.e., personal reflections and notes relating to the context and nonverbal language used by the interviewees). Each interview was concluded when the participants expressed that they no longer had anything more to add. Data saturation was considered to have been reached when no more new themes were identified from the participants' interviews (Polit & Beck, 2018) . As required by Cohen's methodology (2000) , the interview data and the fieldnotes should be converted into digital form as soon as possible after they are gathered. Audiotapes of each interview need to be transcribed verbatim, and the accuracy of the transcription should be thoroughly checked.

This procedure allows you to identify possible themes immediately. The interviews are converted as soon as they are acquired, and this allows to identify the themes early and consequently observe if the themes become redundant or saturated.

All the interviews were only audio recorded and lasted 30-50 min. This decision was made because in a classic phenomenological interview, the methodology suggests to audio-record only the interviews in order to analyze them and identify any common themes. By video recording the interview, we could no longer guarantee confidentiality and anonymize/de-identify their data. Information about participants and their clients are reported in Table 1 .

Every interview was transcribed verbatim, and the field notes made during the interview were integrated with the interview transcripts.

Each interview transcript and the associated field notes were first read in their entirety to obtain an overview of the participant's experiences. Consistent with the method described by Cohen et al. (2000) , each researcher then reread each transcript line by line and assigned broad themes to the various passages of the text. Indeed, Cohen et al. (2000) defined three phases in the data analysis. The first phase is called "immersing oneself in the data," which aim is the establishment of an initial interpretation of data that will drive later coding of the data in subsequent phases of analysis. In this first phase, researchers identify the essential characteristics in the data from each interview. Consequently, researchers proceeded with second phase, called data transformation or data reduction. This process is like editing, where researchers deleted digressions that could be clearly off topic. In the third phase of the data analysis, data were subjected to the line-by-line coding, necessary for thematic analysis. Thereafter, the researchers compared their extracted themes. No discrepancies among the researchers' findings were found at this stage. The participants were informed of the identified themes in a second meeting (via video call) to confirm the extracted themes. They confirmed all the themes and did not add any further to the experience they had told. This process, called also member checking, results being fundamental in Cohen's phenomenology (Cohen et al., 2000) . Indeed, as described by Cohen et al. (2000) and Lincoln & Guba (1985) , themes should be verified with participants to ensure that the themes appropriately capture the meaning that participants sought to convey. Disagreements in interpretation should send the researcher back to the field text for clarifications.

We also adopted Lincoln and Guba's criteria (Lincoln & Guba, 1985) for qualitative research to further guarantee the scientific rigor of this study. Continuing sampling with data collection until the same is saturated has ensured credibility. In qualitative research, credibility corresponds to internal validity and is a criterion for ensuring that the study examines what it is intended to (Lincoln & Guba, 1985; Shenton, 2004) . In our study, we used a technique called triangulation.

Triangulation method involves the participation of two or more researchers in the same analysis to provide multiple observations and conclusions (Lincoln & Guba, 1985) . (Shenton, 2004) . Such descriptions also contribute to the credibility of the results and readers' determination of transfer to their and other contexts.

The institutional review board of University of Rome Tor Vergata approved the study. The study conforms to the principles outlined in the Declaration of Helsinki. Before signing the informed consent form, the HCWs were informed of the study's aim and nature and advised that their interviews would have been used with confidentiality, ensuring that no single participants could not be traced in the reporting study. Confidentiality was addressed during the research planning and at three points during the research process: data collection, data cleaning and dissemination of research. At the data collection, researchers make assurances of confidentiality, typically via consent form statements. During the data cleaning, researchers removed identifiers to create a clean data set, which did not contain information such as a name or address. In the dissemination of research, participants were coded. The participants were also told that they could withdraw from the study at any time. They did not receive any type of payment for contributing to the study.

From the analysis of the data, four principal themes emerged: (1) "I found myself alone"; (2) from invisibility to visibility; (3) a fear of getting sick and infecting others; and (4) "Health or work? That is the question."

4.1 | Theme 1: "I found myself alone"

All the study participants said that they remembered their feeling of sudden isolation during the first wave of the pandemic, particularly because of the government measures of total restriction to arrest the spread of COVID-19. Their relationships with their compatriots and/or with the other members of their clients' families were suddenly cut. As they continued to work during the pandemic, the people who were normally around them before the pandemic disappeared. The network of friendships that had been established by the participants also suffered due to the pandemic and the restrictions that were imposed by the government to limit the spread of the virus. Therefore, what they thought they had gotten a foothold on proved to be unstable after all, which increased their sense of isolation. 

Despite their sense of total isolation, the study participants found a new social consideration of their role. They felt appreciated and noticed a new or increased interest in them and their work. They understood that their clients were often more vulnerable than others, and they saw how their work was being viewed in a different light not only by the members of their clients' families but also by healthcare professionals.

Suddenly, they perceived people's recognition of the strategic importance of their role, which people had seen in a different light up to that moment. The new attention to their work was well received. All the participants declared that they no longer felt "invisible" in the community because they noted that many people started to understand the importance of their role, especially during this pandemic. 

The study participants described their fear of acquiring COVID-19

and of making people around them (e.g., their family and friends) sick.

They described how their fear of being infected and of infecting others, especially their clients and/or their families, was always constantly present in their minds. They also felt that they could not always comply with the recommendations given by the government to protect themselves from being infected, and that this would not always be because they were negligent.

Before, I was much more afraid not only for myself but also for those who were close to me. Every day I took public transport to go to work …. It was therefore impossible to be careful …. I always wore a mask, but keeping a wide dis- 4.4 | Theme 4: "Health or work? That is the question"

The study participants described how many of the choices they had made during the first wave of the present pandemic were a compromise between safeguarding their and others' health and the need to work. It was as if there was a tug of war between their fear of contracting the virus and of conveying it to their clients and loved ones on the one hand and knowing they needed to work on the other.

However, as HCWs often do not have a regular contract with their clients with the specific protections provided by law, the economic aspect prevails over their personal feelings.

I was really afraid, and I still am, but we have to work; 

In this study, we explored the lived experiences of HCWs in Italy who cared for patients during the first wave of the COVID-19 pandemic.

To the best of our knowledge, this study is only the second to focus on the HCWs' lived experiences during the present COVID-19 pandemic (Sterling et al., 2020) and the first to be conducted in a European country. We discovered important issues that should be considered by investigators, clinicians, administrators, and the public.

Despite the present and future importance of HCWs, little is known about their lived and work experiences, especially the crucial role that they have played so far in this pandemic.

The first theme that we identified was "I found myself alone."

The study participants described the feeling of isolation that they had experienced during the first wave of the pandemic because of the restrictive measures taken by the government to arrest the spread of the virus. In many cases, the participants found themselves isolated in their client's home, without any support. In Italy, it is very common for HCWs to live 24 h a day with their clients (Bilotta & Vergani, 2008) .

The measures issued by the Italian government to contain the spread of the COVID-19 pandemic led to a drastic reduction in visits to friends and family. As described by some of the HCWs interviewed in this study, it seemed as if everything depended on them. This feeling of being abandoned by everyone, not having support, and having the overwhelming responsibility ("everything weighs on me") of having to take care of their client without ever letting go may have increased the burden and loneliness of HCWs (Del-Pino-Casado et al., 2018; Dich et al., 2019; Simard & Volicer, 2020) . The feelings of being overburdened and loneliness can have many deleterious consequences; it has been shown that higher burden levels can decrease HCWs' quality of life (Lo et al., 2019; Perpina-Galvan et al., 2019) .

The feeling of no longer being invisible was the second theme that was identified in the study participants' interviews. HCWs constitute an invisible and vulnerable group in society, especially when they are migrant workers. In many countries, they are considered "guest workers" and will not be given the benefit of citizenship at any time in the future. HCWs are usually "invisible" in society (Ahonen et al., 2010) , and many family employers are also unaware that domestic labor and caregiving may have negative impacts on one's health. Intimacy with one's employers and a variety of psychosocial, physical, biological, and chemical conditions have been shown to be important risk factors for the health and safety of HCWs (Muramatsu et al., 2019; Orrenius & Zavodny, 2009) . A live-in regimen could mean more working hours, lack of privacy, social isolation, and little rest (Hewko et al., 2015) .

However, for many, this pandemic represented an opportunity for change ("no longer invisible,") as the study participants found a new social consideration of their role. They felt appreciated and perceived a new or increased interest in them and their work from the members of their clients' families and from health professionals. Contrary to what was found in this study, however, Sterling et al. (2020) observed that the HCWs in their study still felt invisible to the healthcare community and society during the present pandemic despite their efforts to keep their clients healthy and safe.

The fear of getting sick or infecting others, especially their clients and their families, was a constant feeling among our sample of HCWs.

Fear is an adaptive response in the presence of danger. With the spread of COVID-19, national polls have indicated a sharp increase in fear and worries relating to the virus (Arora et al., 2020) . In previous studies on healthcare professionals (Apisarnthanarak et al., 2020; Taylor et al., 2020) , fear was found in almost all the participants. Researchers (Taylor et al., 2020) (Shin & Liberzon, 2010 ), or at the societal level, such as panic shopping or xenophobia (Sim et al., 2020) . Once again, it is evident how strong the impact of this pandemic has been on the study participants, making them increasingly vulnerable. These findings suggest the need to provide psychological support not only for healthcare professionals but also for HCWs.

Not knowing whether to give more importance to their health or to their work was the final theme as identified in the interviews with the study participants. One participant described this theme in a somewhat Shakespearean form: "Health or work? That is the question," which represents a real problem. Having to decide whether to prioritize health or work puts one at an even greater risk. However, it is not news that HCWs typically have precarious contracts (Hill et al., 2019) , as in Italy,

HCWs are often underpaid and living in difficult conditions (Bilotta & Vergani, 2008) . For migrants, such work often represents the only form of sustenance available. Our findings in this study showed that despite the risks involved for fear of losing their jobs and not being able to support their families, many HCWs worked and thus set aside their health aside for work. In addition, the living conditions and multigenerational households of migrant HCWs may increase their risk of being infected with COVID-19.As described in the literature (Burstrom & Tao, 2020) , work-related exposure is heightened for people in occupations that cannot work from home and that entail physical proximity to or direct contact with other people. Precarious employment and a lack of social insurance are also more common among low-income earners, which can limit their financial ability to stay home during sickness. (Cacioppo et al., 2015; Yanguas et al., 2018) .

Some studies found that loneliness is also a risk factor for cognitive decline, recurrent stroke, obesity, elevated blood pressure and mortality (Hawkley et al., 2010; Lara et al., 2019) . Future studies should therefore longitudinally analyze the impact of the current COVID-19 pandemic on HCWs' physical and mental health.

The HCWs' mental health influences their performance and therefore the health of the assisted subjects and has repercussions on the family unit. Nurses and physicians also have a responsibility toward the preparation of HCWs. Understanding how they dealt with the COVID-19 pandemic will allow nurses to understand how to relate to the HCWs, increasingly of reference for older patients and their families. Greater attention should be paid to HCWs and to their role toward patients and the family unit. Finally, this study used video call interviews, which, as described in the literature, could substitute for the classic face-to-face interviews.

In reality, however, the video call interviews in this study might have failed to capture nonverbal information, which could have been easier to capture in face-to-face interviews. Many of the authors are experts in qualitative interviewing and analysis and have instructed less experienced colleagues. Two pilot interviews were conducted to ensure correct familiarity with data collection and data analysis.

The authors are grateful for the contribution of HCWs who generously shared their experiences of working during the COVID-19

pandemic.

Graecia di Catanzaro within the CRUI-CARE Agreement.

The authors declare that they have no conflicts of interests. Rosaria Alvaro, Gianluca Pucciarelli.

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Simeone https://orcid.org/0000-0001-9266-0185

Gianluca Pucciarelli https://orcid.org/0000-0001-6915-6802

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