Getting Back on Track: Meanings of Recovery After Critical Illness Caused by COVID-19

Design

In our study, we adopted a qualitative design and, to collect data, we conducted individual interviews following a narrative approach, as the aim was to understand the meanings emerging during the interviews (Mishler, 1986). To reach a deeper understanding of the phenomena, that is, meanings of recovery, we analyzed the data according to phenomenological hermeneutical interpretation (Lindseth & Norberg, 2004).

Participants and Inclusion Criteria

All prospective participants (n = 17), recruited via purposive sampling, based on the inclusion criteria that they had been critically ill with COVID-19 during the first surge of the pandemic, and had been admitted to a COVID-19-specific ICU in the northern-most part of Sweden. Once contacted by the head of the ICU and informed about the study and its aim, 13 provided their written consent to participate in the study.

Participant Characteristics

Thirteen participants who had been critically ill with COVID-19 during the first surge of the pandemic and had been admitted to a COVID-19-specific ICU, participated in the study. They were 32 to 78 years old (M = 60.15, SD = 12.24), five were women, and eight were men. Nine worked full-time, three were full-time pensioners and one was part-time retired. They had received respiratory treatment due to COVID-19 for 9 to 56 days (Mdn = 20) and either been intubated or received tracheostomy. During their hospitalization, they had also been transferred from other hospitals in the region. On average, the distance between the COVID-19-specific ICU and their homes was 167 km (range: 55–389 km).

Ethical Considerations

All prospective participants received written and oral information about the study from the head of the COVID-19 ICU from which they were recruited. They were also informed that their participation was voluntary and that they could withdraw from the study at any time for any or no reason. All willing participants provided their written consent to participate in the study and were guaranteed confidentiality and anonymity in the presentation of the findings. The study was approved by the Swedish Ethical Review Authority (DNR: 2020-02805).

Data Collection

Data were collected via individual interviews following a narrative approach, which in accordance with Mishler (1986) can create a condition of understanding the meanings that emerge during the interview. The interviews began with an open question “Can you please talk about your experiences of recovering from COVID-19,” in which the participants were given the possibility to freely narrate their experiences. Probing questions such as “Can you give an example?” and “How did you feel then?” were asked to encourage participants to elaborate on their answers. Asking such questions is important for understanding the meaning of a phenomenon, including recovery, from the perspective of the people experiencing it and for researchers to not take for granted what they mean. In accordance with the participants’ wishes, 10 interviews were conducted over the phone, whereas three were conducted face-to-face. The interviews lasted 35 to 80 min (Mdn = 55) and were audio-recorded and transcribed verbatim. One author (ÅE) conducted all interviews from July 2020 to March 2021, about 3 to 6 months after the participants had been discharged from the hospital.

Data Analysis

As our study's aim was to elucidate meanings of recovery for people once critically ill with COVID-19, we analyzed the interview transcripts according to phenomenological hermeneutic interpretation, a method inspired by Paul Ricœur (1976) and further developed by Lindseth and Norberg (2004). Following that method, we sought a deeper understanding of the phenomenon under study through interpretation, which, according to Ricœur, lays bare the private meanings that are otherwise hidden in a text and makes them public.

Phenomenological hermeneutic interpretation consists of three phases: developing a naïve understanding, performing structural analysis, and developing a comprehensive understanding. The approach is not linear but involves moving between the whole text and its parts, from understanding to explanation and, in turn, from explanation to comprehension.

To develop a naïve understanding, all authors read the text several times to grasp its “meaning as a whole.” First author wrote the naïve understanding, in dialogue with the last author. This phase guided the structural analysis, in which the authors (first and last) divided the text into meaning units identified in light of our study's aim. The meaning units were subsequently condensed and, according to their similarities and differences, sorted into subthemes and, in turn, themes. To validate the identified subthemes and themes, we assessed them in light of our naïve understanding. All authors read and gave their input in this phase of the analysis process, in which we restrained our preunderstanding as specialist nurses and nursing researchers, to not make definite what is indefinite (Dahlberg et al., 2008). Last, we developed a comprehensive understanding from, and with the support of, our naïve understanding, structural analysis, and preunderstanding, as well as the literature. In that phase, the aim is to recontextualize the text and focus more on the future than the past, which, per Ricœur (1976) and Lindseth and Norberg (2004), means focusing on what the text talks about more than what it says. In that way, the comprehensive understanding can be revised, widened, and deepened. In that process, critical reflections among all authors were important for self-awareness about our preunderstanding, in order to keep us openminded while deepening it to support the most probable interpretation of the findings (Lindseth & Norberg, 2021).

Naïve Understanding

A strong willpower to recover from COVID-19 was salient among the participants. They struggled to get back on track by finding balance in their everyday lives. Although they expressed gratitude for having survived, contradictory feelings such as hopelessness and uncertainty continued to affect their sense of vitality. Bodily limitations forced them to gradually resume physical activities, creating feelings of frustration. Even so, their mental endurance had been strengthened by spending time in nature. They viewed returning to work as a way to normalize their lives and had longed for their colleagues. At the same time, they realized that not everyone understood how critically ill they had been. They reported that healthcare professionals had not asked them about how they felt upon returning home, which had led to feelings of abandonment and a perceived lack of support. To enable their recovery, they had wanted someone to talk to about their experiences and how they might deal with their feelings and lack of strength.

Structural Analysis

The structural analysis resulted in one overarching theme—striving for balance in everyday life consisting of four subthemes: feeling willpower and gratitude; striving to regain strength; struggling for normalcy, and longing for support. The following subsections present the results of our structural analysis, accompanied with quotations from the interviews that we attribute to participants using pseudonyms.

Striving for Balance in Everyday Life

Comprehensive Understanding

We found that individuals who had been critically ill with COVID-19 strove for balance in their everyday lives and had the willpower to get back on track. In related research, Alexandersen et al. (2021) found that, for once critically ill patients, the motivation to return to ordinary life was health-promoting. Having been in a life-threatening situation increased their willpower, which, along with their inner strength, helped them despite limitations. Along those lines, Lundman et al. (2010) have defined inner strength as having the courage to continue striving to make life meaningful, endure, and deal with difficulties. Schaap et al. (2022) additionally found that an optimistic view on recovery was essential for individuals suffering from the post-illness effects of COVID-19. For those individuals, reassessing the importance of their own health and balance in life was one strategy used during the recovery process. In our study, participants described how they had reevaluated their outlook on life and had stop putting forth as much effort on keeping pace with their lives as before. They also expressed gratitude for having survived and being at peace with what had happened to them as a result of contracting COVID-19. This can be understood from Todres and Galvin (2010) writings, with reference to Martin Heidegger's philosophy, of dwelling-mobility, in which dwelling is a way of settling into the present and accepting things as they are, while mobility emphasizes the call of the future and a feeling of possibility. Here, the illness, that is, COVID-19 made the participants vulnerable as it caused an interruption in their everyday familiar life, which in accordance with Todres and Galvin can be seen as existential homelessness. By “letting-be” what has been, united with the energized flow of movement forward on future, offers a possibility for existential homecoming and further a feeling of wellbeing. Recovery is however a complex process, in which the concept itself according to Friedman (2021) can be misleading, as there is a distinguish between the bio-medical, first-person, and social perspectives. By that, the person can have recovered from the disease, as in this study, COVID-19 from a bio-medical perspective but experience illness, vulnerability, and suffering from the first-person perspective. Our interpretation is that participants on this study, despite of being discharged from hospital and considered as healthy, still suffered from unpredictability regarding their strength and understanding of what had happened when they became so ill. Navigating changes in one's life, requires understanding the situation and why one was stricken with adversity such as illness. Frank (2004) states that the patient should not be excluded from being a part of their treatment and healing. Instead, they should in accordance with Gadamer (2004) writings have the possibility to be offered a dialogue, in which they together with the healthcare could find a way to homecoming into their lifeworld. Todres et al. (2014) highlights the importance of caring for the patients “insiderness.” Healthcare professionals can be the one the patient can trust, the one who shows recognition to the patients’ needs and by that take the patient's vulnerability seriously. Such a lifeworld-led approach focuses on what the person can or can’t do in their everyday lives, aiming to help the person to do something that foresee their needs. In that light, even if patients have the willpower to recover, support from healthcare is important to promoting feelings of gratitude, wellbeing, and, in turn, the manageability of everyday life (Büssing et al., 2021). Following hospitalization, primary care is generally responsible for the aftercare of patients. However, as Schmidt et al. (2021) have shown in their narrative review, healthcare providers in primary care might need training in managing ICU survivors, especially survivors of COVID-19, in ways that afford them relevant support based on their needs. This is further stressed by Guo et al. (2022) where survivors of COVID-19 experienced great concerns about their prognosis and the exaggerated information from social media due to COVID-19 being novel and clear guidelines were lacking for treatment and care.

Our findings show that participants who had been critically ill with COVID-19 were eager to get back on track, mentally as well as physically, and tried to be as active as before illness. They felt frustrated by their lack of strength, which related to sometimes extreme weight loss and challenges with breathing. The attention that the body demands during illness can be understood in the light of Toombs’s (1993) ideas that such a body stands in opposition to the self and that a malfunctioning body needs to be considered in all aspects of life. As embodied subjects, we access the world by means of our body, meaning that we do not only have a body, but are our bodies. When healthy, daily activities are done without reflection regarding our bodily functions, meaning our embodied consciousness, is an action for what we can do. According to Merleau-Ponty (1996), all changes that occur in the body imply changes in the experience of being in the world. Illness represents a disability to be engaged in the world in a habitual way. As we are our bodies, illness does not only lead to a disintegration of our body, but also our self and the world. For recovery or healing as Friedman (2021) choose to call recovery from the first-person perspective, healthcare should not solely pay attention on the dysfunction of the biological body, but also take into consideration the disruption of the patients lived body (Toombs, 1993).

Participants in our study found that being in nature increased their willpower as well as relieved stressful thoughts. We refer this to the attention restoration theory in which Kaplan and Kaplan state that nature facilitates the persons’ spontaneous attention, meaning that one does not need to be concentrated on tasks or obligations from surrounding world. Instead, the person can when in spontaneous attention distance themselves from stressful thoughts, while providing a possibility for reflection about one's life (Kaplan, 1995). Nature can be a calming refuge (Johansson et al., 2023) and from Dahlberg (2007) writings we understand that one can feel companionship with nature, meaning that one can feel rest and stillness as well as joy and creativity despite of being lonely. In such loneliness which Dahlberg call a “good” loneliness, by us interpreted as solitude, one can feel at home. Engström and Alerby (2021) have shown that contact with nature, even when hospitalized, can heighten the sense of one's connectedness with nature, which can inform strategies for self-care upon being discharged from the hospital. Such self-care can be encouraged by nurses and other health care professionals for patients during their recovery processes.

In their struggle for normalcy, participants in our study were eager to resume their daily activities and return to work. This can be understood from Brough (2001) referring to Husserl's writing about temporality as our intentional awareness of time. Here, not by means of clock time, rather temporal modes of appearance as now, past and future. We live in our “now” from which we direct our attention to past and future. In illness, this can be distorted, and one can be stranded in the present, while the past is seen in a new sense, and the future which one has longed and planned for can be suspended. In accordance with Toombs (1993) such change in temporal significance can be experienced as a chaotic disturbance. One's sense of self is altered, but the self has a continuity even if the time is temporal, meaning that the continuous self can serve as a ground to restore one's changed life. From Brough (2001) writings it can be understood that the temporal horizon of future also can relieve hope as for example related to the participants in our study, who hoped for recovery in due time, meaning that their bodily temporality as weak and fatigued, will not go on endlessly. They further, longed for their colleagues, which can be related to Dahlberg (2007) who show the value of feeling belonging, to have a context to be a part of, which is possible in companionship with others for example at work, that is, colleagues who are available for companionship. All humans need to be connected, confirmed, and valued to value themselves. Such a context can contribute to recovery, health, and a feeling of wellbeing.

Our findings show that the lack of aftercare led to feelings of abandonment. Participants recovering from COVID-19 felt that health care professionals were not interested in them and lacked knowledge about the consequences of their illness. To achieve a balance between the effects of the illness and feeling well, individuals experiencing illness, or its effects need to be met with compassion and genuine interest (Thorne et al., 2004). To alleviate the patients suffering, Toombs (1993) state that attention should be paid not only to their sensory experience but also to their apprehension of the illness. Suffering increases with sole focus on physical anomalies. Attention should instead be on the patient's meaning of the illness. Healthcare professionals can never fully understand the meaning of the suffered illness of the patient, but need to seek to understand how the patient understands his/her illness, while also communicate their explanation model for the patient. By that, a shared understanding can be achieved (Toombs, 1993) and the patient can feel comfort (Thorne et al., 2004). Related to Buber (1997) writings the patient can also feel validated, which can facilitate internal growth that consequently supports the recovery process. In our study, participants developed their own strategies to manage their daily lives but feared falling ill again and had a wish to talk to someone about their experiences. To ignore patients’ needs is demoralizing (Frank, 2004) and leaves patients with a sense of being alone. In accordance with the tenets of person-centered care, patients should have the right to tell their stories and be supported (Ekman et al., 2011).

Strengths and Limitations

To reveal possible meanings of recovery from critical illness with COVID-19, we chose to interpret the participants’ narrations by using phenomenological hermeneutic interpretation. The participants were willing to freely narrate their experiences during interviews, and probing questions were asked to minimize the risk of misunderstanding based on the interviewer's preunderstanding. Ten of the interviews were conducted by telephone. Even if face-to-face interviews should be the gold standard for data collection in qualitative research, Novick (2008) states that telephone interviews can allow participants to relax and more easily disclose sensitive information, which was the case on our study. Throughout the process of, we remained aware of our preunderstanding by engaging in critical peer discussions about how we understood the phenomenon under study (Ricœur, 1976). The interpretation presented herein is the one that we found to be most probable after considering and comparing other possible interpretations (Lindseth & Norberg, 2004). The narratives were rich and had depth in the variations of participants’ experiences, which is why we argue that they are the most significant experiences of recovery. The findings from this study cannot be generalized but can be transferred to other, similar situations, participants, and contexts (Lindseth & Norberg, 2004).