key: cord-0693094-ujvvf7j0 authors: Hoffmann, Eva; Specht, Kirsten; Elkjær, Mette; Kjær, Maria; Primdahl, Jette title: Relatives’ experiences of the hospitalisation of older people with COVID‐19: A qualitative interview study date: 2022-02-14 journal: Int J Older People Nurs DOI: 10.1111/opn.12451 sha: 9868bf7eadc8744221edca32a76d679adb761e3b doc_id: 693094 cord_uid: ujvvf7j0 BACKGROUND: During the COVID‐19 pandemic, visitors were restricted from hospitals, separating them from hospitalised friends and family to reduce the infection risk. OBJECTIVES: The objective was to explore how relatives of older people acutely admitted to hospital with COVID‐19 experienced being a relative, and how they felt about their contact with health care professionals (HCPs) when visitor restrictions prevented their physical presence in the ward. METHOD: This study employed a qualitative design. We used individual qualitative semi‐structured interviews and the participants were relatives of acutely admitted older people from three COVID‐19 wards in Denmark. A total of 18 relatives participated, 14 female and 4 male, aged between 45 and 83 years. The analysis was guided by Graneheim and Lundman’s qualitative content analysis. RESULTS: The analysis derived the following three themes: (1) the importance of trust in a period of uncertainty; (2) the meaning of contact with HCPs, and (3) active but at a distance—a balancing act. The participants' feelings of uncertainty were prominent. The unknown nature of the disease and the unusual situation challenged relatives' trust in HCPs and the health care system. CONCLUSIONS AND RELEVANCE TO PRACTICE: The findings highlight relatives' stress when the possibilities for visiting are restricted and the importance of trust in, and the relationship with HCPs. This study can strengthen HCPs' understanding of relatives' situation when older people are hospitalised during and after the COVID‐19 pandemic. On March 11, 2020, the World Health Organization declared the coronavirus disease 2019 (COVID-19) a pandemic (Liu et al., 2020) . The virus was first identified in Wuhan, China, and quickly spread worldwide (Liu et al., 2020) . The first Danish case was identified on February 27, 2020 (Danish Health Authority, 2020 . The virus is highly contagious in the human population and can be life-threatening, and may also cause long-term health effects and functional decline related to daily activities (Liu et al., 2020) . Older people are at greater risk than younger people of severe illness and death from COVID-19 (Miller, 2020; Mueller et al., 2020) . From March 2020, the Danish authorities implemented several public restrictions to slow and control the infection rate and the number of hospital admissions to reduce pressure on the Danish healthcare system (Staten's Serum Institut, 2020). Visitors were restricted from hospitals, separating them from hospitalised friends and family to reduce the infection risk. Only one relative was allowed to visit if the patient was critically ill or dying (Sundheds-& AEldreministeriet, 2020) , and physicians had the responsibility to assess whether the patient was in such a health state. The COVID-19 pandemic created an unfamiliar situation for all involved in the hospital system: patients, relatives and healthcare professionals (HCPs). A recently published qualitative study from Denmark reported that older people admitted to hospital during the COVID-19 pandemic experienced fear, anxiety and suffered from the lack of contact with their relatives (Nielsen et al., 2021) . Studies published before the COVID-19 pandemic have demonstrated that relatives to older acutely admitted patients play a vital role in the patient's treatment and care (Bragstad et al., 2014; Dyrstad, Laugaland, et al., 2015; Nyborg et al., 2017; Sagoo & Grytnes, 2020; Stein-Parbury et al., 2015; Storm et al., 2014) . Relatives can act as advocates, requesting information from HCPs and helping to ensure that essential services and care are based on the older patient's needs and wishes (Dyrstad, Testad, et al., 2015; Moyle et al., 2016; Stein-Parbury et al., 2015; Storm et al., 2014) . Increased international focus on family nursing and relative involvement means that HCPs, including nurses, must pay attention to and involve significant others (relatives) in the planning and completing patient care (Østergaard & Konradsen, 2016) . Family nursing is a science based on Wright and Leahey (2013) . The conditions for family-centred care and family nursing dramatically changed because of and the concomitant visitor restrictions (Luttik et al., 2020) . A Canadian study reported that during the severe acute respiratory syndrome (SARS) outbreak in 2003, relatives became stressed, anxious and frustrated when access to hospitalised loved ones was restricted (Rogers, 2004) . SARS and COVID-19 are similar in many ways because they are both airborne and life-threatening new diseases. However, the two viruses are also different in several important ways. The SARS epidemic affected relatively few people and did not disrupt daily life outside several cities and regions in Asia and Canada. In contrast, COVID-19 has spread to every nation on earth and is a concern for the general population the world over. Only a few published studies have reported on the experiences of relatives of patients with COVID-19 during the pandemic, and these studies focus on relatives of older people living in long-term facilities in the Netherlands (Wammes et al., 2020) and Taiwan (Yeh et al., 2020) How could the findings be used to influence policy, practice, research or education? • On all organisational levels in the health care system, the hospitalisation of older people with COVID-19 should be considered a family affair • Health care professionals should be trained to communicate with older people's relatives in an empathic, caring, and professional manner-this is also important when communicating on the telephone • Health care professionals should be trained to be technically competent to support older people's use of digital solutions when communicating with their relatives. in long-term care facilities are less affected by COVID-19 than older persons who needed acute hospital admission due to COVID-19. Given the important role that relatives can play in the care of hospitalised family members, particularly for older people, it is relevant to explore the experience of visitor restrictions imposed by the COVID-19 pandemic from the perspective of relatives of older people acutely admitted to the hospital with COVID-19. Thus, given the importance of this aspect of health care and the lack of research in the area, the present study aims to explore the experiences of relatives of older people with COVID-19 acutely admitted to hospital, also considering relatives' experience of contact with HCPs when visitor restrictions prevented their physical presence in the ward. The study employed a hermeneutic approach and a qualitative, explorative and inductive design (Gadamer, 2007; Green & Thorogood, 2018) . The hermeneutic approach meant that the interviewer aimed to show a high sensitivity to the participants' statements. Furthermore, the analysis included an interpretation of the latent meaning (Graneheim & Lundman, 2004 ). In Denmark, wards for COVID-19 inpatients were established as part of the local emergency departments (EDs) June-October 2020. Thus, the setting for this research was the EDs of three different regional hospitals in Denmark, where patients with COVID-19 were acutely admitted. Nurses at the three EDs identified and invited relatives to participate in the study. If relatives expressed interest, the interviewer contacted them and offered additional information about the study. If they were willing to participate, written information about the study and a consent declaration were sent by mail and a time for a telephone interview was agreed upon. Relatives of older people (65 years of age and older) acutely admitted to the hospitals with COVID-19 were invited to participate. Relatives were defined as adult family members or self-identified significant others of the older person. Purposeful sampling ensured that the participants suited the study's aim (Patton, 2015) . We aimed to include male and female relatives of different ages, and with different relationships to the older person to achieve a broad sample of participants. Relatives who were not able to understand and speak Danish were excluded. We aimed to include approximately 15 relatives to achieve the richness of our data. The concept of 'information power' guided the number of participants needed to reach the study's objective (Malterud et al., 2016) . The concept of information power was considered when conceiving the study's objective, sample specificity, quality of the dialogue and the analytic strategy (Malterud et al., 2016 ). Data were collected through telephone interviews, which was considered appropriate due to the risk of spreading COVID-19 (Irvine, 2011; Nicol et al., 2020) . The first author, who did not know any of the relatives in advance, conducted all interviews between June and November 2020. A semi-structured inter- view guide with open-ended questions was developed, inspired by previous research about the interaction between relatives of older hospital-admitted patients and HCPs (Bragstad et al., 2014; Dyrstad, Laugaland, et al., 2015; Lindhardt et al., 2006; Mackie et al., 2019; Nyborg et al., 2017; Stein-Parbury et al., 2015) . The focus during the interview was relatives' experiences of the admission, including experiences of their contact with the HCPs (e.g., communication and information received). The interviews were recorded and transcribed verbatim. Table 1. In total, 24 relatives were invited to participate in the study. Initially, all accepted, but six withdrew because of personal reasons before they were interviewed. Thus, 18 relatives participated: 14 females and 4 males, mean age 63 years (45-83). Relatives were husband (1), wife (6), son (3), daughter (7) and girlfriend (not living together) (1). The interviews lasted from 10 to 57 min (mean 31 min). The interviews were transcribed in the software program NVivo version 12 (Alphasoft). The analysis was inspired by the qualitative How did you experience being a relative to a person acutely admitted because of COVID-19? How did you experience contact with the staff during the admission? How did you experience the information from the staff during the admission? How did you experience the communication with the staff during the admission? How were you involved in decisions regarding X´s care and treatment during the admission? How do you think this hospital admission differs from previous situations where you were a relative to an older, hospitalised person? The focus for answering these questions is as follows: What did you do? How did you do it? If possible, tell us why you did it. content analysis described by Graneheim and Lundman (2004) . The initial step in the analysis was to read all interview transcripts several times to capture a sense of the whole material. Next, meaningful units of importance for the study aim were identified. Then, the identified meaning units were condensed and coded according to the manifest content. The codes were compared based on similarities and differences and sorted into categories describing the transcribed material's manifest content. Based on our interpretation, the categories were condensed into themes (the latent content) (Graneheim & Lundman, 2004; Lindgren et al., 2020) . The steps in the inductive content analysis are presented in Table 2 . This Table also informs the reader about which authors were involved in the different steps of the analysis process. An example of the analysis process is presented in Table 3 showing how the analysis was structured regarding categories built up by codes and how the themes were built up by categories. to withdraw from the study at any time and that they could request deletion of interview data up until the stage where the data were analysed. Rules of confidentiality were observed, and no names or other sensitive personal information are reported in the study. All names used in the following descriptions are pseudonyms. The analysis derived the following three themes: (1) the importance of trust in a period of uncertainty; (2) the meaning of contact with the HCPs; and (3) active but at a distance-a balancing act. The themes are described in Findings and are illustrated with selected quotes from the interviews. The participants experienced the older person's admission to the hospital as a period marked by uncertainty, worries and frustrations. Codes were compared based on similarities and differences and were sorted into categories describing the manifest content across the transcribed material (EH) 5 Based on an interpretation of the categories, they were condensed into themes. (all authors) These themes express the underlying meaning of the material on an interpretative level, and, thus, the themes represent the latent content of the material. Steps in the inductive content analysis worst experience I have ever had because you are isolated from each other' (Eric, 46 years old). The participants were concerned about the older persons' psychological well-being. They worried that the isolation and separation from relatives might negatively affect the older person's happiness and contentment. Further, the participants felt powerless because they were separated and unable to be close to the older person. They missed seeing the older person, holding hands or giving a hug. It was crucial for the participants to obtain information about the older person's medical condition and psychological well-being. Participants often asked about the hospitalised person's own experience of the situation when they talked to the older person on the telephone. They expressed interest in the hospitalised person's answers to questions such as whether they were scared, in good spirits and whether the HCPs were caring. The participants reported that often, they did not ask the older person directly but tried to extract a sense of the situation when the older person described their condition and situation. A daughter of a hospitalised mother and father stated: (Catherine, 60 years old) The positive experiences often focused on feelings of hospitality and being welcome when contacting the ward. If the HCPs took time to provide information and gave signals that they treated the hospitalised older person with empathy and an individualised approach, it positively influenced the participants' impressions and sense of satisfaction and security. It was interesting to note that when referring to the HCPs, the participants did not use the names of the nurses and HCPs and referred to them as using terms such as 'they', 'them', 'the ward' or 'the hospital'. All participants needed to adapt to the new situation-an unknown virus and highly restrictive visitor rules. The situation was unique, and none of the participants had experienced anything similar. This extraordinary context affected their role as a relative. The participants described how they actively commented, criticised or reprimanded the HCPs when they felt distrust, dissatisfaction and uncertainty. Other participants were concerned that criticism could negatively affect their relationship with the HCPs or even harm the older person by making the HCPs less inclined to offer proper care, resulting in the participants adopting a deferential and careful approach when communicating with the HCPs. A daughter of a hospitalised mother and father stated: Yes, well, what if they became tired of mum because of me or something else. It was more that if I took up too much room or asked too many questions. So it was a bit of a balancing act. (Diana, 45 years old) Some participants described how they acted accepting and humble if the HCPs signalled that they were busy. A husband noted the following: 'I certainly didn't want to take up their time because I know they are very busy up there' (Peter, 71 years old). Other participants reflected that their role would usually be more active and participatory (e.g., questioning the HCPs during ward rounds) than it was in the current situation where they were not physically present. The visitor restrictions appeared to weaken some participants feeling of power, authority and role of being an active relative. In some situations, participants assigned other relatives to communicate with the HCPs if they considered they had more authority and legitimacy than themselves. A wife of a hospitalised male patient stated: It was because we don't usually make use of the fact that one of our relatives is a physician. But because I was not heard or listened to in any form, it was a trump card [to let her daughter who is a physician talk to the HCPs]. (Alexa, 72 years old) Relatives' need to act and be proactive and persuasive seemed to occur when participants experienced dissatisfaction with the care of the older person. We found that relatives to older people acutely admitted to the hos- Further, these researchers stress that a crisis such as the COVID-19 pandemic can function as 'a magic mirror' by sharpening people's senses and awareness towards other people's actions (Yeh et al., 2020) . When looking into the magic mirror, relatives' overall perceptions become more clear, thereby separating their experiences of what was 'good' and 'bad' behaviour (Yeh et al., 2020) . Physical separation between hospitalised older people or older people in longterm care facilities and their relatives is not unique to the COVID-19 pandemic as it also occurs when, for example relatives live far away from the hospital. This means that adult relatives living far away from their older parents may experience similar worries and uncertainty as has been experienced during the COVID-19 pandemic. In the current study, relatives described their contact with the HCPs as brief but significant. The relatives' experience of their contact with the HCPs seemed to influence the relatives' feelings of trust. It is well known from studies conducted before the COVID-19 pandemic that relatives' level of collaboration with HCPs is significant for their experience of satisfaction (Lindhardt et al., 2008) . According to Luhmann (1999) , trust is a necessity in modern society and is a way to reduce complexity. Luhmann (1999) describes differences between personal trust (e.g., a relative) and system trust (e.g., the healthcare system). In the United States (US), a recent Gallup poll found that the proportion of US residents who stated they had 'quite a lot' or 'a great deal' of confidence in the US medical system increased from 36% before the pandemic to 51% during the pandemic in July 2020 (Baker, 2020) . A newly published survey reveals that system trust in the healthcare system is very high in Denmark compared with other Scandinavian countries. Two out of three Danes (62%) consider the Danish healthcare system to be one of the best in Europe (Ritzau, 2021) . In 2017, this was 50% (Ritzau, 2021 The study findings also demonstrate that COVID-19 seems to affect not only the person who is hospitalised with COVID-19 but also the persons' family. In a guest editorial, members of the family health in Europe Research in Nursing group stated that the COVID-19 pandemic is a family affair and that family nursing has never been more relevant or necessary than it is now (Luttik et al., 2020) . The findings of the current study confirm the argument that COVID-19 is a family affair. A strength of this study is the transparent way the analysis process is outlined to ensure the reader can visualise the steps in the analysis process and understand our conclusions. By providing full transcriptions of the empirical material and providing methodical transparency, this study has reliability. We have discussed the analysis to ensure validity, including the interpretations made in step 5 (from manifest categories to latent themes) (Green & Thorogood, 2018) . Another strength of this study is the enthusiasm most participants displayed and their willingness to share their experiences and thoughts during an emotionally stressful period in their lives. This willingness provided rich empirical data. However, if participants did not have contact with the HCPs during the admission, their interview was often very short. In addition, some relatives were not able to verbalise their thoughts and feelings or the interviews were disrupted because the participants had to care for the older person while being interviewed. However, based on this fact, we decided to increase the number of interviews from the planned 15 to 18 in total. We did that to achieve information power (Malterud et al., 2016) . Another strength was conducting interviews over the telephone, which allowed interaction between participants and the interviewer to occur in a safe environment for the participant (Irvine, 2011) . It also allowed the inclusion of participants who were infected with COVID-19 and were thus in quarantine (Nicol et al., 2020) Another limitation is that the interviews were conducted when the COVID-19 pandemic was under control in Denmark, and thus, the HCPs were not working under the same degree of pressure as they were when the number of hospital-admitted patients increased. This may have affected the participants' experiences of treatment and care in a positive direction. Relatives of older people admitted with COVID-19 experience many worries and frustrations, and uncertainty and trust seem to be the common denominators. Most relatives experienced a need for regular contact with the HCPs and verbalised their need to be kept up-to-date with the older person's condition. Relatives' quality and quantity of contact with the HCPs influenced their impressions, satisfaction and feeling of trust and security. The unknown nature of the situation as well as the physical separation and lack of information challenged relatives' trust in the HCPs (personal trust) and the healthcare system (system trust). geting relatives who cannot be physically present in the hospital during older peoples' admission can benefit patients, relatives and HCPs. Knowledge from this study can be used to guide decisions regarding We would like to thank the relatives for sharing their experiences and stories in a stressful and challenging period. Further, we would like to thank the staff at the three COVID-19 wards for their indispensable help and support in establishing contact with relatives. We also thank OPEN, the Open Patient data Explorative Network, Region of Southern Denmark, for the safe storage of the data. Further, we thank research assistant Caroline Moos from the Hospital Sønderjylland, University Hospital of Southern Denmark and Elite Editing, Australia, for help with the language editing. The authors certify that they have participated in the design, analysis of data, drafting and approval of the submitted article. According to the current Danish legislation, this study did not require formal ethics approval from the Regional Committees on Health Research Ethics for Southern Denmark. Storage and management of data were registered by the Danish Data Protection Agency. The authors take responsibility that the Helsinki Declaration and the Ethical Guidelines for Nursing Research in the Nordic Countries were followed in the study. 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