key: cord-1051594-r1h08toe authors: Shaban, Ramon Z.; Nahidi, Shizar; Sotomayor-Castillo, Cristina; Li, Cecilia; Gilroy, Nicole; O'Sullivan, Matthew V.N.; Sorrell, Tania C.; White, Elizabeth; Hackett, Kate; Bag, Shopna title: SARS-CoV-2 infection and COVID-19: The lived experience and perceptions of patients in isolation and care in an Australian healthcare setting date: 2020-09-02 journal: Am J Infect Control DOI: 10.1016/j.ajic.2020.08.032 sha: 39043713e8b5aaa69d1781a53ce2b0e51238de9f doc_id: 1051594 cord_uid: r1h08toe BACKGROUND: Isolation and quarantine are key measures in outbreak management and disease control. They are, however, associated with negative patient experiences and outcomes, including an adverse impact on mental health and lower quality of care due to limited interaction with healthcare workers. In this study, we explore the lived experience and perceptions of patients in isolation with COVID-19 in an Australian healthcare setting. METHODS: Using a phenomenological approach from a Heideggerian hermeneutical perspective, we conducted individual semi-structured interviews with the first eleven COVID-19 patients admitted to a designated COVID-19 facility in Australia. Interviews were audio-recorded, transcribed verbatim and imported into NVivo 12 for coding and analysis. RESULTS: Participants’ lived experience and perceptions of COVID-19 were represented by five themes: ‘Knowing about COVID-19’, ‘Planning for, and responding to, COVID-19’, ‘Being infected’, ‘Life in isolation and the room’, and ‘Post-discharge life’. Within these, participants conveyed both positive and negative lived experiences of infection, isolation and illness. The contextual aspects of their social and physical environment together with their individual resources contributed to the framing of their planning for, and response to, the outbreak, and were important mediators in their experience. CONCLUSION: Findings from this study provide a valuable insight into the lived experiences of patients with COVID-19, which reflect those of patients with other infectious diseases who require isolation. On 11 th March 2020, the World Health Organization declared COVID-19 a global pandemic 1 . The pace of the outbreak driven by the high infectivity of the SARS-CoV-2 virus 2 coupled with the absence of a specific treatment or vaccine 3 and widespread human-to-human transmission 4,5 has necessitated stringent quarantine and infection prevention and control measures to contain it and mitigate its effects on a global scale not seen in more than a century. Many countries have implemented strict measures including national lockdowns, closures of airports and borders, cessation of regional, national and international travel, mandatory self-quarantine for returning overseas travelers, closure of businesses and offices with individuals working from home, and social/physical distancing of residents and communities. There are clear and intended public health benefits to implementing source isolation and quarantine measures for outbreak management and disease control. However, managing individual patients in isolation under stringent infection control precautions has both positive and negative outcomes [6] [7] [8] [9] [10] [11] . Some patients view having privacy via a single room as a positive experience 6, 11 . Others report negative health and social outcomes including stress, anxiety, depression, loneliness, avoidance behaviours, anger, and risks to physical health 6, 7, 10, [12] [13] [14] . In previous studies of the experience of source isolation for infection with multidrug resistant (MDR) organisms such as MDR-tuberculosis and vancomycin resistant enterococcus (VRE) patients commonly reported feelings of anger, anxiety, uncertainty, depression, and stigma 8, 10, 15, 16 . Patients under contact precautions for healthcare-associated infections have also reported poor staff coordination and lack of respect for their needs, resulting in unsatisfactory patient care 17 . Patients with suspected or confirmed COVID-19 infection are managed using a combination of standard and transmission-based (contact, droplet and airborne) precautions 18 An interpretive phenomenological approach using the core elements of Heideggerian hermeneutical perspective was employed to help explore for meanings of the phenomenon (i.e., being in isolation) with the purpose of understanding the patients experience. This offered an holistic method to understand how participants' experiences and perceptions are contextually formed, influenced, and sustained through both having COVID-19 and living in an isolation room 21, 22 . This approach enabled us to understand the totality of participants' lived experience through a blend of meanings and understandings articulated between them and the investigators. Study participants consisted of the first 11 patients with confirmed COVID-19 who were admitted to a designated isolation facility in New South Wales, Australia. They were all managed under both standard and transmission-based (contact, droplet and airborne) precautions. During this phase of the outbreak, all individuals diagnosed with COVID-19 were admitted to hospital for isolation regardless of symptom severity and until meeting clearance criteria. Those who presented with mild clinical symptoms were cared for in a repurposed ward with 11 single patient rooms. Patients presenting more severe illness were managed in a single quarantine (Q) class negative pressure isolation room with intensive care capability and a separate anteroom and exit room, but no natural light or windows. All patients were provided with, and asked to wear, a surgical face mask while in their rooms. The analysis was based on Diekelmann, Allen, and Tanner's 23 seven-step method. To gain an overall understanding of the data, transcripts were read, and audio files of interviews were listened to. Summaries of each transcript were drafted, and early potential themes were identified. Preliminary findings were compared, discussed and agreed to identify early themes in the dataset. All transcripts were then re-read and reviewed. Identified themes and patterns in data were verified through discussion, and transcripts were re-read to link relationships and overlaps between themes. Findings were integrated, synthesised and reported using consolidated criteria for reporting qualitative research (COREQ). Lincoln and Guba's 24 criteria were used to ensure qualitative trustworthiness. Credibility was achieved as the investigators are experienced researchers and clinicians in infectious diseases and are extensively familiar with the care setting and context of the participants. Co-constitution technique was used by the interviewer to verify participant meaning during the interview 25 There is lots of information and you got to be really, be picky in where you get the info from. So I started reading the World Health Organization incident reports as well. Because we were travelling, so obviously I wanted to make sure that the risk was factored into our travel (Participant 10) For other participants their experiences of COVID-19 were defined by a mistrust in official sources of information, and a clear preference for non-official forms of media that were not sanctioned by governments and authorities: Interestingly, the experience of many participants was defined by their criticism of social media platforms that sensationalised COVID-19 more so than through official news and media channels: For the participants the trustworthiness of the information they sourced about COVID-19 was fundamental to their experience for planning for COVID-19. In response to their diagnosis of COVID-19, participants indicated they had planned across four different levels: individual, family, community, and society. Individual-level planning encompassed thee adoption of precautionary measures to minimise the risk of spreading the infection. Self-isolation and home-quarantining were practiced by some participants before admission to hospital as they considered them to be effective measures to ensure the health and safety of their close contacts (e.g., family members). As one participant remarked: Family-related responses and planning were reported by almost all participants. Several participants elucidated that their family proactively provided support to them over the course of their diagnosis and hospitalisation. Family members also undertook active precaution measures and engaged in home-isolation, as the following participant's remark illustrates: In terms of planning their responses to COVID-19 at a societal level, participants' experiences strongly reflected the role and impact of media. For some participants their experience featured appreciation for the media in increasing public awareness about COVID-19: For these participants, the increased public awareness of COVID-19 via news outlets in their community positively defined their experience. However, for others their experiences of COVID-19 were defined by societal features that were negative and destructive, particularly with respect to stories in the news and other media of individuals and groups attributing the disease to specific racial and ethnic groups, as explained by one participant: The media really spun it as like something to be really fearful of. There was a lot of hysteria. I work in the city and you start seeing people wearing masks on the train. All of the sudden you are conscious of people around you, people are coughing around you and you are like "does he have the virus" you know, like, move seats and you know, step away, and back then it was all to do with China, so it was unfortunately a lot of people racially, they racially profiled the disease to limit it to Chinese people (Participant 10) This negative and destructive societal feature was particularly relevant to them coming to terms with their diagnosis of COVID-19 and 'being infected'. All participants expressed feelings of shock when they learned of their diagnosis. The feeling of being diagnosed with laboratory-confirmed COVID-19 resulted in anxiety, shock and doubt, and was described by participant as being 'surreal': contracted the virus… that I tested positive. And it"s like for the last few weeks we have been seeing Coronavirus in the news non-stop. Every day you check the news, the headlines are In all cases, participants did not initially consider themselves at risk of contracting COVID-19 for a variety of reasons. Firstly, all 11 participants indicated that they, for the most part, had mild and nonspecific symptoms, such as cough, low-grade fever and body pain. This led their first treating doctors to consider other conditions such as the common cold, flu and Dengue Fever. The following quote illustrates this: Thirdly, it was hard for participants to believe that they had contracted the infection because they reported taking a range of precautionary measures when they first heard about COVID-19, such as additional hygiene practices, as one participant described: For many of the participants the lived experience of 'being infected' with COVID-19 brought negative emotions and feelings. The dominant concern from participants was that they may have, or were likely to, spread infection to others, in particular family members and friends. There was also concern about perceived stigma from public and others within their inner circle. As illustrated in the excerpts below, some participants experienced feelings of guilt for consuming hospital resources (e.g., beds and personal protective equipment) and for potentially exposing the healthcare workers to the infection: Some participants noted that the physical layout of the hospital rooms restricted their ability to move around or do physical activities. One participant explained that, in the context of having no definite cure for COVID-19, being isolated in hospital had deprived him from accessing other sources of therapy that they would otherwise seek: Given there is no cure or no medicine, we should try and focus on the natural remedies, like the old mother"s mentality: you should be having lots of warm drinks or herbal tea… I don"t have the facility to actually do that, but if I was at home, I would. And I actually believe in that stuff. Cos" that"s the stuff that helps you get through a cold when the antibiotics can"t help you… Eating lots of onions, eating lots of fresh fruits with vitamin C. Things like that. I feel I am missing out and I feel that"s the stuff that would naturally help my body to heal. For many of the participants, the experience of care under transmission-based precautions made interactions and communications with healthcare staff difficult. While they reported experiencing trust and confidence in their doctors and nurses, they expressed a desire for more information about their illness, treatment and prognosis from their treating doctors. Some participants perceived that their chance to communicate with healthcare workers could have been undermined due to staff workload, time-pressure in the ward, and healthcare workers' possible fear of contracting the virus through longer interactions with patients: I actually have requested a couple of times and they said "we/the doctor will come back". Doctors are afraid to come into the room I think, and they spend very very little time, which I guess is understandable as well (Participant 8) In this setting, some participants with limited proficiency in English struggled with the language barrier. As one participant described, she was unable to convey all her needs to the healthcare workers because she was "not able to communicate with them". (Participant 4). Psychological consequences of being under source isolation became more significant as the duration of hospitalisation increased, as one participant described: To minimise the negative psychological effects of isolation, some used adaptive coping practices. All participants had smartphones or similar devices which they used to contact family and friends, connect to the world outside, and track days and time. One participant outlined her system of belief and described how she used the opportunity of being alone to reflect and gain a better understanding of others struggling with medical conditions: Participants similarly foreshadowed using adaptive coping mechanisms after discharge from hospital. All participants anticipated making a full recovery from COVID-19 and expressed this experience as life post-discharge. Many explained that their experience had led to adopting new behaviours including better hygiene practices. Their experience resulted in them wanting to make changes to their lifestyles to boost overall health and improve the immune system. Many expressed a concern about remaining infective or re-infection in relation to post-discharge life: Source isolation and quarantine measures are instruments for outbreak management and disease control, and existing research reports both positive and negative outcomes following their use [6] [7] [8] 11 . The findings of this study of the experience and perceptions of COVID-19, the first of its kind, are consistent with existing literature on experiences during isolation for an infectious disease 6, [8] [9] [10] 12, 15, 16, 26 . Source isolation helps to contain the infection and offers a satisfying level of care and privacy for patients 27, 28 . Notwithstanding this there are negative and unintended psychological consequences of isolation such as anxiety, depression and aggression which are well documented in the existing literature. Having to deal with the negative feelings generated by contracting a highly infectious novel virus and the psychological effects of isolation can have detrimental impacts on patients' coping capacity and self-esteem 6, 29 . Previous research indicates that patients' perceptions and experiences in isolation are gravely influenced by the physical characteristics of their environment 6, 26, 28 . Some of the practical ways to minimise the negative and unintended consequences of isolation include provision of sufficient physical space to walk around, allowing more activities, and having large windows to enable the participants to connect to spaces outside their room. The Qclass rooms where some of the participants were domiciled had no windows and no natural light. Our findings also illustrate the importance of measures that can provide effective sensory stimuli to patients who are physically isolated. The Heideggerian hermeneutical perspective employed in this study led to a holistic understanding of the COVID-19 patients in the context of isolation, as we were able to capture the nuances and key elements in the totality of their experiences and perceptions. Interestingly, the insight into how the participants planned for, and responded to, COVID-19 along the trajectory of their experience suggests several tiers (individual, family, community and society) in the scope of their resources and capabilities. Taking into consideration the contextual aspects of participants social and physical environment together with their individual resources can nurture a holistic model for patients planning and response, which will be useful for wider public health programs. Further research can employ social-ecological perspective to gain a better understanding of the dynamic complexity and the contextual reality that surrounds the patients 30,31 . Developing and implementing models of care for COVID-19 and other high-consequence infectious diseases requires that the negative and unintended consequences of isolation be minimised. Changes to the physical environment and strategies to address communications barriers between staff and patient can further enhance the moral elements in the ethics of care, 17,32 resulting in better outcomes for patients [6] [7] [8] . Providing specialised mental health, social support and interpreter services should also be considered in addressing special needs of patients in isolation. Further studies are needed to explore the advantages and disadvantages of other modes of isolation (e.g., home isolation) and benchmark their effectiveness in preparation for future large-scale infectious diseases outbreaks. Having a multidisciplinary team of investigators to interpret the data produced a rich description of the lived experiences and perceptions of COVID-19 patients during a global pandemic. However, the study does have limitations. Interviews were conducted with participants during their hospitalisation, and it was not possible to follow-up with them post discharge to conduct member-checking 24 . Instead, we used the re-constitution technique to ensure credibility 25 . We also acknowledge that participants' cultural background and their socio-cultural context influences their experiences, and further sociocultural research should examine this. World Health Organization. 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The Case of HIV/AIDS An ethic of care This study was an investigator-initiated research and did not receive financial support from funding agencies in the public, commercial or not-for-profit sectors. All authors report no conflicts of interest relevant to this article. The authors would like to thank the participants in the study and extend their appreciation to the healthcare workers for their cooperation and support during data collection.