key: cord-0884494-nkkeowfh authors: Hodkinson, B; Gina, P; Schneider, M title: New life after near death: Surviving critical COVID-19 infection date: 2021-12-31 journal: Afr J Thorac Crit Care Med DOI: 10.7196/ajtccm.2021.v27i4.184 sha: b92f3765d30bcf1e2ff30ea5f5f60c8f33ecb1dc doc_id: 884494 cord_uid: nkkeowfh BACKGROUND: Few studies have explored the illness perceptions, experiences or attitudes towards the future of survivors of critical coronavirus disease 2019 (COVID-19). Through in-depth qualitative interviews, we aimed to enrich our understanding of participants’ perspectives, with the hope of offering more holistic and appropriate care to future patients. METHODS: Participants who had survived critical COVID-19 illness (defined as a laboratory or clinical diagnosis of COVID-19, with hypoxia requiring high-flow nasal oxygen (HFNO) or mechanical ventilation) were invited to participate. After informed consent procedures, clinic-demographic details were documented and individual interviews conducted using a topic guide, and were audio-recorded, translated, transcribed and coded into NVivo software where themes were extracted. RESULTS: Of 21 participants (13 female, 8 male), the mean age was 51.8 years (range 34 - 68), and mean duration of COVID symptoms was 21.7 days (range 17 - 37). Eighteen participants had been on HFNO, and 5 required mechanical ventilation. The major themes were: distressing experience; faith-based beliefs sustaining them; gratitude to healthcare workers (HCWs); better understanding of COVID and how dangerous it is; optimism for the future; and a resolve to implement lifestyle changes. CONCLUSION: Qualitative interviews revealed our participants’ experience of severe COVID-19 as a difficult and terrifying ordeal, mitigated by faith-based beliefs, and the presence and care of HCWs. These experiences were reported by the participants as life changing, and all were inspired to focus on future self-care, and invest in fulfilling relationships. These insights call for future interventions to improve patient-centred care, including follow-up debriefing sessions, and support for lifestyle changes. hypoxia requiring HFNO or mechanical ventilation. Between July and September 2020, patients surviving this high-care episode who had been transferred to general COVID wards at GSH were invited to participate. Confused or agitated participants were excluded. In-depth semi-structured individual interviews were conducted by one of the authors, a clinician working in the COVID wards. Interviews took place in the ward when participants had minimal or no oxygen requirements and felt comfortable to talk, on their day of discharge from hospital. All participants signed informed consent to the interview, including audio-recording. Demographic information, details of hospital admission and critical illness course, and comorbidities were documented. A topic guide was used to explore experiences of the disease, particularly highlighting perceptions of COVID-19 before becoming ill, experiences while on HFNO or ICU including near-death phenomena, coping mechanisms, feelings about disclosing the coronavirus illness to family and community, and ideas of what the future might look like. This interview guide was tested in a pilot study of four participants and found to be satisfactory. Interviews took between 10 and 20 minutes in English or Afrikaans, and were audio-recorded, translated and transcribed into English. Interviews were stopped when saturation was reached after 21 interviews were completed. After each interview, audio data were transcribed and coded into NVivo software (QSR International, Australia) for sorting and extraction of themes. Participants are quoted in their own words, noting that many are not first-language English speakers. Of 23 patients invited to participate, 21 agreed to the interview, with two declining because of discomfort or difficulty in talking. The mean (range) age of the 21 participants was 51.8 (34 -68) years ( Table 1) . The mean (range) duration of COVID-19 symptoms was 21.7 (17 -37) days. Five participants had no comorbidities, and three of these were under 40 years old. Eighteen participants survived HFNO, and all had a relatively short duration of HFNO (median 5.8 days of HFNO; range 1 -23 days), and five required mechanical ventilation for a median of 17 days of ventilation (range 5 -27 days). The major themes identified were: distressing experience; faithbased beliefs sustaining them; gratitude to healthcare workers (HCWs); better understanding of COVID and how dangerous it is; optimism for the future; and resolve to implement lifestyle changes. Distressing nature of severe COVID illness All participants described their time in hospital as a harrowing and very difficult experience, and one that they would not like to experience again or wish on others. For most, the feeling of shortness of breath was the most distressing symptom, frequently described with graphic imagery. ' The majority (20/21) believed that they had been near to death. When asked directly, 10 participants described classic near-death and out-ofbody experiences including meeting a deceased relative or a spiritual figure, or seeing a brilliant light or tunnel. Many participants described the loneliness of their COVID illness. Separation from family and disallowance of hospital visits was one of the worst burdens carried by participants. In addition, many felt that they had no control over their circumstances or the outcomes of their illness. Others had no breath or no energy to interact. Two participants explained that they did not want to talk to their families because they felt the family would be unable to understand the situation and it was difficult to explain to them. The majority of participants described an active decision to fight the illness, and many felt this was a source of strength that helped them to survive. The impetus for this study was a desire to develop a better understanding of the lived experience of severe COVID-19 illness in an urban South African community -thus providing greater insight into unmet needs and areas for improvement. The major factors reported by the participants were the distressing nature of their experience characterised by shortness of breath, loneliness and helplessness, and faith-based beliefs seeing them through, with tremendous gratitude to HCWs. Most participants reported a better understanding of COVID and how dangerous it was and expressed optimism towards the future, with resolve to implement lifestyle changes. Our participants' descriptions of critical COVID-19 demonstrate the anxiety, debilitating dyspnoea, loneliness and confusion experienced during a critical illness with an uncertain outcome. Many shared powerful imageries of their ordeals. Many participants described their lack of control as a major issue, similar to insights shared by critical COVID-19 survivors elsewhere. [6, 11, 12] Countering this, faith-based beliefs were an important source of comfort to many participants, together with confidence in the medical teams. Silent hypoxia, or lack of discomfort at very low blood-oxygen concentrations, is well described in COVID-19. [13] However, for many patients in our study, dyspnoea was a major cause of discomfort and distress. In COVID-19, dyspnoea may be multifactorial. Anxiety contributes to an unpleasant feeling of air hunger, and tends to occur early in the disease as the first symptoms emerge. [15] Acute respiratory distress syndrome (ARDS) or pulmonary thrombosis causes hypoxaemia, which may cause dyspnoea and typically occurs several days after the onset of the first COVID symptoms. [14] Our study, and others, suggests that psychotherapy might be a useful adjunct to medical treatment. [16] All participants expressed gratitude and satisfaction at the level of care received at the hospital. This is a testimony to the commitment of all staff working under very difficult and stressful circumstances, and underscores our HCWs' skill, sincere care and kindness. Our participants' testimonies remind us that good, clear communication with critically ill participants needs to remain a priority, despite the challenges including dealing with anxiety-stricken participants with a low capacity for absorbing information, and overwhelming participant numbers. As writer Maya Angelou said: 'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. ' [17] Adults of any age can develop severe COVID-19 disease, but older age (≥64 years) is a major risk factor for progression to ARDS. Other comorbidities including obesity, poorly controlled diabetes mellitus, hypertension and pre-existing chronic cardiac, renal and pulmonary conditions, together with malignancies and untreated human immunodeficiency virus (HIV) infection, infer an increased risk of severe disease and death. [18] Of great concern is that the vast majority of participants in the present study were unaware of these risk factors and, although 18 of the 21 participants themselves had one or more risk factors, most expressed surprise that they had been very ill. This is an area for better public health education, because improved understanding of the virus and one's vulnerabilities may improve adherence with recommendations to avoid infection. Elsewhere, compliance with restrictions imposed to reduce the spread of COVID-19 infections has been shown to be complex, with a need for presentation of evidence on the effectiveness and reasons behind measures. [19] Gratifyingly, upon discharge from hospital, the vast majority of participants understood their vulnerability to severe COVID disease, and many felt motivated to discuss their experiences with the family and community. In addition, many participants felt inspired to address unhealthy lifestyle factors and improve control of their chronic illnesses, suggesting psychological growth. The motivation to focus on selfcare and invest in fulfilling relationships is a positive outcome from a difficult and terrifying ordeal. Similar positive cues to action regarding improved health knowledge, lifestyle and care-seeking behaviour owing to the COVID pandemic are reported by others. [5, 6, 20] Some limitations of the study include the cross-sectional nature of the study done in a tertiary care setting, and the exclusion of participants who were not able to converse in English or Afrikaans. Further, interviews took place in the general COVID wards, with the interviewer wearing full personal protective equipment, and this may have hindered communication. A private, quiet space would have been a preferable setting but was logistically impossible owing to infection control measures and ongoing oxygen requirements of recovering participants. In addition, many participants were short of breath and fatigued from their illness, which may have blunted their responses. At the time of the study in mid-2020, COVID-19 vaccines were not yet available, and therefore discussions about vaccination were not included in the interviews. The use of qualitative methods to understand participants' reactions to severe COVID-19 illness adds a dimension to our understanding of how experiencing a severe illness affects the person not just physically, but also psychologically. These experiences were reported by the participants as life changing. These findings contribute to understanding ways of improving services to ensure that the trauma experienced by such participants is minimised. Future interventions might include offering a follow-up debriefing session on discharge from high care wards or ICU, and support for lifestyle changes that patients expressed the desire to implement. Declaration. None. 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