Barriers to and facilitators of rehabilitation according to socio-economic status, after acute respiratory distress syndrome due to COVID-19: A qualitative study in the RECOVIDS cohort

The SARS-CoV-2 virus can cause severe hypoxic pneumonia and acute respiratory distress syndrome (ARDS), and many of these patients will require admission to the intensive care unit (ICU). COVID-19 related ARDS was life-threatening in the early stages of the epidemic, although the prognosis progressively improved over the course of successive waves of COVID [1,2]. The clinical consequences of a stay in the ICU due to COVID do not appear to differ substantially from those of ICU stays due to ARDS of other etiologies [3–5]. Conversely, physical symptoms (notably muscle weakness) [6], psychological symptoms (anxiety, depression, post-traumatic stress disorder) [7], and cognitive impairment (memory loss, loss of verbal fluency, attention disorders, impaired executive function) [8], collectively known as post-intensive care syndrome (PICS) [9], all seem to be more severe and of longer duration after COVID-19 [10,11].

In parallel, the COVID-19 pandemic took a particularly heavy toll on socially disadvantaged populations [12–14]. This likely compounded existing social disparities in terms of healthcare access [15], with deleterious effects on the functional prognosis of patients after a stay in the ICU [16]. Indeed, at the individual level, the economic consequences of a stay in the ICU arising from loss of earnings, delayed return to work, or even job loss, can ultimately lead to situations of social isolation [17]. Similarly, even outside the pandemic context, there may be inequalities in access to specialized rehabilitation linked to the patients’ socio-economic status, and this may also affect medium and long-term prognosis [16]. It has been shown that intensive rehabilitation, initiated early (i.e. while the patient is still in the ICU), is beneficial after ARDS [18–24]. Surprisingly, this benefit has not been observed in terms of long-term mortality after rehabilitation implemented at discharge from the ICU [25].

In a study performed during the pandemic, Declercq et al reported in the RECOVIDS study that despite comparable pulmonary sequelae and similar access to rehabilitation, patients considered to be socio-economically “vulnerable” had lower quality of life at 6 months after an ICU stay [26,27]. This suggests that beyond purely medical and factual considerations, there are other, socially determined factors that explain why socially disadvantaged individuals fare less well at 6 months after ICU admission for COVID-related ARDS. We therefore sought to complement the quantitative findings of the RECOVIDS with a qualitative enquiry. The aim was to describe the barriers to, and facilitators of participation in rehabilitation, among patients from the RECOVIDS study, regardless of their socio-economic situation.

This qualitative study was performed as part of the larger RECOVIDS study, whose methods and results have previously been reported elsewhere [26,27].

The RECOVIDS study was approved by the ethics committee “Comité de Protection des Personnes Sud Méditerranée II” on 10/07/2020 under the number 2020-A02014-35. In line with French legislation, participants provided consent to be contacted for a semi-structured, qualitative interview to explore their responses in greater detail. During the interviews for the present study, participants were informed about the study, and all provided written informed consent to participation, and to the use of illustrative quotes for the purposes of publication (after anonymization and translation).

The inclusion criteria for the main RECOVIDS study [26] were: adult patients admitted to ICU for PCR-proven SARS-CoV-2 infection, in any of the 30 participating centres. To be included, patients had to have undergone chest computed tomography (CT) scan at the initial phase of management; have ARDS diagnosed according to the Berlin 2012 definition [28] or have received high flow nasal oxygen with a flow of at least 50L/minute with FiO₂ > 50% and a PaO₂/FiO₂ ratio ≤ 200. The main exclusion criteria included a walking perimeter < 50 m or WHO performance status 3 or 4; chronic respiratory insufficiency; patients not affiliated to the national health insurance system; and patients under legal protection.

For the present qualitative study, additional inclusion criteria were as follows: Patients had to have been living at home for the month prior to the interview; they had to be proficient enough in French to perform the interview, and be free of any limitations on understanding or expression that would render the interview impossible. Eligible patients were randomly selected to be invited to participate; with the same number of participants selected from among socially deprived and non-socially-deprived patients, as assessed by the EPICES score [29–31]. The EPICES score is a measure of social and material deprivation. It assesses a total of 11 items covering social conditions, leisure activities and family/social support. Individuals with an EPICES score ≥ 30.17 (the lower boundary of the fourth quintile in the validation study) were considered to be socially deprived. To ensure maximum variation in the study sample, participants were randomly selected according to their level of social deprivation, as determined by the EPICES score. We also balanced the number of participants selected from the first and second pandemic waves (from January 2020 to July 2020 and from November 2020 to May 2021 respectively). The study procedures are summarized in Fig 1.

Next, the randomly sampled patients were contacted by 3 researchers from the RECOVIDS Qualitative team (MK, ML, NMB) to organize an individual, semi-structured interview at a time convenient for the interviewee. Interviews took place on average 20 months after discharge from the ICU.

The members of our multidisciplinary research group (bringing together specialists in public health, intensive care, respiratory medicine and sociology) held two meetings before the start of the study to review the current state of knowledge in the literature regarding rehabilitation after COVID-19 infection. Based on our review of the literature and expert knowledge, we developed the interview guide, which was reviewed and approved by the whole team. The interview guide focused on 4 main topics: (1) Barriers to rehabilitation and to recovering a quality of life that is perceived as satisfactory; (2) Facilitators of rehabilitation that is deemed to be efficacious by the patients; (3) availing of the resources offered by the national healthcare system; (4) the patient’s perception of their own physical and/or mental health. As the pandemic was still ongoing during the study period, all interviews were performed by telephone. Interviews were performed until data saturation was reached (i.e., the point beyond which further interviews yielded no new information). Interviews were recorded and fully transcribed (in French) for later analysis. Data were encoded to guarantee the anonymity of the participants.

Once all interviews had been completed and data saturation was reached, the research team held two more meetings to review the interview transcripts, triangulate coding and themes, and reach a consensus on the final thematic analysis. The transcripts of all interviews were analyzed using thematic analysis, as previously described [32–34]. In thematic analysis, the verbatim are first coded, then codes are regrouped into major and minor themes. Major themes are significant points that are mentioned spontaneously and well developed by all participants in a cross-sectional manner. Minor themes are secondary points that are less well developed, and spontaneously mentioned by some, but not all participants. The first level of analysis was first performed independently by each researcher (MK, ML, NMB) on their own interviews, then meetings were held to harmonize the categories and reach consensus on the themes to be retained. Results were discussed until consensus on interpretation was reached. Translation was performed after the results were finalized.

A total of 42 patients were contacted, of whom 31 (73.8%) agreed to participate in the interview (20 men, 11 women). Those who did not participate either refused to be interviewed, or failed to answer the call after scheduling an interview. Thus, a total of 31 interviews were performed between October 2021 and January 2022; 16 with socially deprived, and 15 with non-deprived participants. At that point, saturation was reached in the data, and thus, no further interviews were performed. Eighteen patients had been hospitalized during the first COVID-19 wave, and 13 in the second wave. The sex ratio was 4 women to 5 men for patients from the first wave, and 2:3 for the second wave. Median age was 58 years (interquartile range 17.5). The average duration of the interviews was 50.3 ± 7.1 minutes. The characteristics of the study participants are detailed in Table 1.

Four themes emerged from the analysis of the interviews, namely: (1) the impact of the patient’s professional and socio-economic situation; (2) the feeling that age and socio-economic situation influence access to rehabilitation; (3) a perception that the healthcare system was saturated, and that inequalities exist in access to rehabilitation resources; (4) perception of previous own health and expectations regarding post-resuscitation health status.

Illustrative quotes for each theme are given in Table 2, and the main themes are summarized in Fig 2.

In this qualitative substudy based on the multicentre RECOVIDS project [26], we performed semi-structured interviews with patients who had been admitted to ICU for ARDS due to COVID-19. Analysis of the discourse of these patients reveals that there are numerous barriers to the implementation of rehabilitation after a stay in the ICU, and these are predominantly related to the patient’s professional status, age and socio-economic situation. Conversely, geographic proximity to a rehabilitation centre, early ambulatory management, a supportive entourage or a stable professional situation were all facilitators of initiation and pursuit of rehabilitation. Regardless of their socio-economic situation, all the patients interviewed were acutely aware of the saturated state of the healthcare system during the pandemic, which sometimes precluded timely (or any) access to rehabilitation centres or specialist consultations. Consequently, some patients perceived a shortfall between the offer of care, and their persisting sequelae (e.g., neuro-muscular disorders), or experienced a long delay between discharge from ICU and access to rehabilitation.

Social deprivation can result from the cumulated breakdown of social, professional and/or emotional support. In socio-economic terms, it implies the absence of security in one or several domains, notably employment. This in turn precludes the individual from fulfilling their professional, family and/or social obligations, and from enjoying their basic rights to the full, notably the right to health. Healthcare inequalities are the reflection of the link between health and social determinants, and differ widely from one country to another, in terms of access to care and health insurance coverage [35]. In addition to socio-economic situation, numerous social determinants and individual behaviours combine to make healthcare inequalities largely avoidable. In health terms, healthcare inequalities are truly a loss-of-opportunity for the most socially disadvantaged populations, as was previously observed during the COVID pandemic [12–14]. It is noteworthy that healthcare inequalities generally reveal the weaknesses of a healthcare system and a social gradient linked to social disadvantage, and they have an impact both upstream and downstream of a stay in the ICU [16]. Accordingly, low income and a low level of education have been identified as socio-economic factors that aggravate the severity of COVID-19, compounding socio-economic vulnerability, which in turn may be responsible for co-infection (e.g. tuberculosis), malnutrition or risk-taking behaviours (alcohol/tobacco consumption, addiction) [36]. It has also been reported that ICU admission may have negative financial consequences for 33% of patients at 6 months, and 28% at 12 months [37], and this can create additional socio-economic difficulties for patients. In France, available data regarding health inequalities come from ICU populations [38,39]. In the IVOIRE study [39], social deprivation, evaluated by the EPICES score, was observed in 48.5% of patients and was shown to influence the risk of nursing home entry within 3 to 6 months after a stay in the ICU. In the FROG-ICU study [38], the authors observed a significant decline in physical capacity, evaluated by the Medical Outcomes Study 36-item Short Form at 1 year among patients with a high level of social disadvantage, as assessed by the French deprivation index.

A previous review of the literature that included studies of the consequences of ICU admission also found socio-economic issues to be foremost for most patients [40]. The issues were manifest in a variety of ways, including changes in relations to others (family, friends, colleagues) with a tendency to become socially isolated [41]; the feeling of being a burden for the family [42]; the feeling of being limited in daily life by restrictions laid down by others, or even a feeling of uselessness [43]. Conversely, for patients in psychological distress, the presence of the family is of utmost importance [44], as is the presence of a supportive and assisting social environment [33], in the process of recovery. The utility of psychological follow-up, and the desire to return to the life they had before the illness, were both highlighted in our study, especially by the socially deprived group. Indeed, the capacity to fulfil family roles and participate in social activities has a strong influence on perceived quality of life [40]. By the same token, an inability to return to previous activities and/or resume their prior professional status is considered as a form of handicap that can cause considerable psychological distress [45].

Other authors [46,47] have suggested that there is a strong link between precarity and outcome among patients admitted to ICU, notably due to greater difficulty accessing care in geographically distant patients, a tendency to wait longer before seeking care [48], and a higher level of social deprivation according to race or ethnic origin [49]. The outcome of patients after ICU discharge is to a large extent influenced by the degree of disability they suffer, and how impaired they are for the activities of daily living [50]. In this regard, Ferrante et al reported that, compared to life prior to ICU admission, there was a marked increase in severe disability, which went from 26% before, to 51% after ICU, with significant functional decline at one year [51].

In our study, the social environment (family commitments, housework, job), financial situation and available family support were all important determinants of the patient’s commitment to rehabilitation after their ICU stay. Indeed, our interviews revealed that logistic and geographical barriers are less important than the more preponderant social aspect. Indeed, socially disadvantaged patients were out of touch with the healthcare system once they left the hospital or rehabilitation. In our study, this phenomenon was due to various factors including financial precariousness and the need to return to work to maintain their income, but also a lack of awareness of the care on offer within the healthcare system, such as outpatient care. Finally, some patients also had a fatalistic attitude regarding their health, that paralleled their social situation. Cohen and Wills previously underlined the negative impact that social disadvantage may have on an individual’s capacity to cope with a stressful event and mobilize available resources [52]. Job precarity can make some individuals more likely to lose their job or income when a major health event befalls them [53], and exposure to job precarity is associated with negative health outcomes that may compound health inequalities at population level [54]. A key challenge after a stay in the ICU, particularly at the time of the patient’s return to home, is to detect the components of PICS, which can be done using specific instruments [55,56] or during a dedicated post-ICU consultation. This can help to guide rehabilitation accordingly [20,22] and help the patient to recover an acceptable quality of life [57]. Implementation of multidisciplinary programmes for outpatient rehabilitation after ICU discharge have been shown to improve quality of life at one year, and enable an earlier return to work [58]. Similarly, the input of social workers can be particularly helpful for both patients and their caregivers [59,60]. In France, social workers have a key role in organizing the return home after hospitalization, and their scope of intervention is specifically focused on supporting precarious social situations, such as individuals exposed to job or accommodation precarity, loss of income or complex family situations.

Providing rehabilitation in the home can be an attractive option for those who require rehabilitation but who may experience difficulties in accessing rehabilitation services in a hospital-based or specialized environment. In a recent review of the literature, Velez et al describe the factors that influence the provision of home-based rehabilitation services [61]. The authors found that patients find home-based services to be more convenient and less disruptive of their everyday lives, while at the same time empowering them for self-management. However, home-based provision of rehabilitation poses challenges for privacy and confidentiality across the different stakeholders (patients, family, care providers….). Other factors were highlighted in the quest to expand home-based rehabilitation, including support from providers and family members, the need for good communication with healthcare providers, the requirements made of patients and their surroundings, whether the patient lives alone or not, and the availability of both providers and equipment [61,62]. Many of these same issues were highlighted by the respondents in our study. A final factor concerns the transition from hospital-based to home-based services, which may be difficult for some patients [61]. Indeed, as reported in our study, some patients may have the impression that they are less well cared for when services are provided in the home, because of a lack of human and material resources, giving patients the impression that they have been abandoned once they are discharged from hospital. All these points need to be taken into careful consideration when evaluating the feasibility of home-based rehabilitation services.

A precarious socio-economic situation has a substantial impact on access to rehabilitation after ICU admission for ARDS caused by COVID-19. It represents a barrier to rehabilitation through the combined action of various social determinants that deserve to be detected early, in order to take appropriate action to ensure that the most socially vulnerable individuals can benefit from access to rehabilitation. We suggest that early detection of social vulnerability, e.g., at admission of patients, should be performed, using validated tools, which will necessarily need to be different, and validated, for each individual country. The evaluation of social vulnerability should take account of existing solutions for support (financial and other) within each country’s healthcare and social welfare system. This would maximise the support for each patient according to their needs, and optimise the conditions of their discharge, enabling them to return home with appropriate support, or to transition to affordable rehabilitation and convalescence centres. This could contribute to reducing health inequalities in the population, which are already known to be associated with social disadvantage.

All relevant data are within the paper and its tables.

The author(s) received no specific funding for this work.