Relationship between critical illness recovery and social determinants of health: a multiperspective qualitative study in British Columbia, Canada ================================================================================================================================================== * A Fuchsia Howard * Kelsey Lynch * Sally Thorne * Sybil Hoiss * Omar Ahmad * Rakesh C Arora * Leanne M Currie * Robert C McDermid * Martha Cloutier * Sarah Crowe * Cameron Rankin * Alice Erchov * Brianna Hou * Hong Li * Gregory Haljan ## Abstract **Objectives** There are health disparities and inequities in the outcomes of critical illness survivors related to the influence of social determinants of health on recovery. The purpose of this study was to describe the relationship between critical illness recovery and the intermediary social determinants of health in the Canadian context. Because Canadian healthcare is provided within a universal publicly funded system, this analysis sheds light on the role of social determinants of health in the context of universal health services and a relatively robust social safety net. **Design** In this qualitative interpretive description study, data from semi-structured interviews with intensive care unit survivors, family caregivers and healthcare providers were analysed using thematic and constant comparative methods. **Setting** Western Canadian Hospital serving a population of 900 000 people. **Participants** The 74 study participants included 30 patients (mean age 58 years, 18 men and 12 women) and 25 family caregivers (mean age 55 years, 8 men and 17 women), representing 37 cases, as well as 19 healthcare providers. **Results** Challenges with employment and finances, home set-up, transportation, food and nutrition, medications and social support complicated and hindered critical illness recovery. Critical illness sequelae also altered these social determinants of health, suggesting a reciprocal relationship. Furthermore, individuals experiencing socioeconomic disadvantage before critical illness described being at a greater disadvantage following their critical illness, which interfered with their recovery and suggests an accumulation of risk for some. **Conclusions** Our findings underscore the significant influence of social determinants of health on critical illness recovery, highlighting the importance of creating and evaluating comprehensive approaches to health and well-being that address health inequities. * adult intensive & critical care * intensive & critical care * health equity ### STRENGTHS AND LIMITATIONS OF THIS STUDY * Study strengths stem from patient partner involvement as research team members, which allowed us to confirm that the study findings resonated with patient partner experiences and described aspects of recovery that were important to patients. * The inclusion of patient, caregiver and healthcare provider study participants enabled the triangulation of data for more robust findings. * Recruitment and data collection occurred amid the COVID-19 pandemic and it is conceivable that the socioeconomic demands experienced by study participants during the pandemic exacerbated postintensive care unit challenges. * Although a high number of participants reported their cultural background as one that could be categorised as racialised, we likely did not capture the experiences of those who were new immigrants and racialised, which is important given the intersection of ethnicity, immigration status and language with other social determinants of health. ## Background Recovery from critical illness treated in an intensive care unit (ICU) is a complex, demanding process. Half of ICU survivors experience postintensive care syndrome (PICS), encompassing prolonged, new or worsening physical, psychiatric and cognitive sequelae.1–5 Marked physical dysfunction (eg, ICU-acquired weakness, pain, impaired respiratory functioning),6 psychiatric illness (eg, anxiety, depression, post-traumatic stress disorder)7–9 and cognitive impairment (eg, decreased memory, difficulty in concentration, sensory disturbances),10 can manifest as poor functional and quality of life outcomes. A 2017 review noted that 69% of ICU survivors exhibited new or worsening difficulties in instrumental activities of daily living that endured for months to even years.11 Frequently, family members assume roles as informal caregivers, and notably, they also experience physical and mental health challenges, known as PICS-Family.12–14 Given the impact of PICS, it is unsurprising that survivors can be high healthcare users. Pooled data indicate that 53% (95% CI 44% to 62%) of survivors are readmitted to the hospital within a year.15 Evidence suggests health disparities and inequities in the outcomes of critical illness survivors. Those who experience socioeconomic disadvantage have been found to have poorer physical function,16 cognitive outcomes17–19 and long-term quality of life.20 Lower socioeconomic position has also been associated with more obstacles to a successful ICU discharge,21 as well as higher in-hospital mortality and increased mortality both 30 days postdischarge and in the long term.20 It also appears that socioeconomic disadvantage can be exacerbated or acquired during critical illness.22 23 For example, employment loss24 25 and financial stress are common among critical illness survivors.18 26 Descriptions of the mechanisms by which social determinants of health influence and alter the nature and trajectory of critical illness recovery have begun to emerge. For example, a 2022 qualitative study of patients and caregivers from the USA, the UK and Australia identified several domains of social determinants of health—such as money and work, skills and education, housing, transportation and neighbourhoods and family, friends and social connections—that were affected by critical illness and influenced recovery. According to the WHO, the pursuit of health equity requires attending to socioeconomic and political context, structural determinants of health inequities and intermediary determinants of health.27 The structural determinants of health inequities include the social and political mechanisms that produce social class divisions and individual socioeconomic positions. These structural determinants cause and operate through intermediary determinants of health to shape health outcomes. Intermediary determinants of health, defined as factors most proximal to individuals that determine differences in their exposure to health-compromising conditions, include (1) material circumstances such as housing and neighbourhood quality, consumption potential (eg, the financial means to buy food, clothing, etc) and the physical work environment; (2) psychosocial circumstances such as stressful living circumstances and relationships, and social support and coping styles and (3) behavioural and biological factors such as nutrition, physical activity and substance use.27 Understanding the interplay between critical illness recovery and intermediary determinants of health is crucial for tackling health inequities and disparities. To do so, contextually grounded evidence is essential, given the influence of social and healthcare systems, such as the type of healthcare and medical insurance, and the availability of social programmes and services, on illness and recovery. Furthermore, experiential evidence from individuals embedded in specific health and social systems is necessary to inform the development of effective, patient-centred services. The purpose of this analysis was to describe the relationship between critical illness recovery and the intermediary social determinants of health, as perceived by patients, family caregivers and healthcare providers (HCPs) in the Canadian context. Because Canadian healthcare is provided within a universal publicly funded system, this analysis sheds light on the role of intermediary social determinants of health in the unique context of universal health services and a relatively robust social safety net. ## Methods ### Patient and public involvement Team members were engaged throughout the research according to principles of patient-oriented research28 and integrated knowledge translation.29 Patient partners (individuals who were a patient or a caregiver with lived experience) were actively involved in all stages of this research, collaborating as equal partners. Their input was sought and integrated into the generation of research questions, study design, protocol development, data collection and analysis. Throughout the research, they participated in team meetings, provided feedback on draft materials and results and contributed to manuscript revisions. This collaboration was aimed at ensuring the study findings resonated with patients’ experiences, enhancing their relevance to patient perspectives. ### Design This analysis was part of a larger Canadian qualitative study aimed at identifying drivers for unplanned hospital readmission among critical illness survivors. The research team was an interdisciplinary group of researchers, clinicians, clinician scientists, stakeholders/decision-makers, patient partners and trainees. As a team, we collectively held expertise in qualitative research, including the specific methodological approach used. Additionally, we brought clinical and research proficiency in critical care, post-ICU recovery, illness survivorship, chronic illness and health service delivery and evaluation to the table. We selected a qualitative interpretive description approach for the overarching study and the present analysis for its pragmatic approach to producing experiential evidence pertinent to clinical application within the practice disciplines.30 Consistent with this methodology, we did not rely on an existing theoretical framework. Rather, our research and interpretations were informed by the principles of our applied health disciplines. These disciplines prioritise the identification of pertinent patterns and themes that could offer value to knowledge users in clinical settings. ### Setting and participants Eligible patients included those who received invasive or non-invasive mechanical ventilation for ≥48 hours during their index ICU admission, were ≥19 years of age, spoke English and could give informed consent at the time of data collection. Individuals receiving palliative care at home or who underwent cardiac surgery were excluded on the assumption that they were receiving related follow-up services that were available through regional programmes. Eligible family caregivers included a relative (an adult child, sibling, spouse, son-in-law or daughter-in-law), unmarried partner, neighbour or close friend. Critical illness survivors and family caregivers were recruited from a closed/mandatory transfer (patients are admitted and cared for by intensivists), 46-bed ICU of a large urban hospital in British Columbia, Canada, serving approximately 900 000 people. The recruitment procedure encompassed point-of-care ICU providers directly approaching eligible patients or their authorised substitute decision-makers. With the agreement of the patient or substitute decision-maker, the provider shared their contact information with the research team, who then followed up with these potential participants by telephone or email within a month of the patient’s discharge. Informed consent was obtained from participants who agreed, and an interview was scheduled for a time and date selected by the participant. Eligible HCPs included direct care providers who care for ICU survivors at any point in the survivor trajectory from hospital discharge to home and back to the hospital. HCPs were identified through our team’s professional networks and invited to participate via email. We also recruited HCPs via study advertising in online newsletters and social media pages of provincial professional organisations, as well as emailing the study invitation to listservs of health professionals employed by the Health Authority. Snowball sampling was also used where we asked HCPs who agreed to participate to share the email of invitation to other HCPs whose practice included ICU survivorship care. ### Data collection In-depth semi-structured interviews were conducted with patients, family caregivers and HCPs from December 2021 to September 2023. Following extensive training by team members with qualitative research expertise, six trainees conducted the interviews. Patients and family members were interviewed approximately 1 month after hospital discharge, either following an initial ICU stay or a hospital readmission after a prior ICU admission. Follow-up interviews were conducted with a subgroup of participants within a year of their initial interview. Interviews were primarily conducted virtually (via phone or Zoom), although in-person hospital interviews were conducted with six patients who had been readmitted to the hospital, and one patient emailed his written responses to the interview questions. The interviews were conducted either independently or with the patient and family member together as a dyad interview, depending on their preferences. Patient and family caregiver interview guides included questions about their health-related priorities, the individual and family impact of illness, the challenges and stressors experienced during recovery, strategies used to manage, healthcare services or resources sought and, for those readmitted to the hospital, the challenges that contributed to their rehospitalisation. HCPs were asked for their perspectives on the above (See Supplemental Information for Initial Interview Guides). Following qualitative semi-structured interviewing techniques, interview guides were flexibly used to facilitate conversation and encourage participants to share their experiences. Interviewers guided discussions by prompting elaboration on illness and recovery topics raised by participants, and additional questions emerged as discussions progressed. We iteratively adjusted the interview guides based on preliminary insights gained during ongoing analyses. Interviews averaged 43 min (range 17–104 min), were audio-recorded, transcribed verbatim, de-identified and cleaned for accuracy. Interviewers took field notes following each interview, capturing their overall impressions and emphasising or noting unique aspects of participants’ experiences. Medical data were extracted from patient charts. Patient, family caregiver and HCP sociodemographic data were collected during the interview or via a Research Electric Data Capture survey link. The final sample size was based on gathering data high in information power31 rather than data saturation. Information power suggests that the greater the information available within the sample, the fewer participants are required for the study. We considered the sample and data to have high information power due to the inclusion of patients, family caregiver and HCPs, a diverse range of participant characteristics (ie, patient admitting diagnosis and participant sociodemographics), the variety of experiences described, the richness of participant accounts and the high quality of interview dialogue. ### Data analysis Data analysis involved using data management software NVivo V.12, diagramming via online whiteboard and visual collaboration using Miro, and research team input. A coding frame, which included several codes related to various social determinants of health, was developed inductively for the overarching study and applied to all interview data. The coding process involved four team members who frequently convened with the research team to deliberate on the implementation of the coding framework, propose revisions and share newly gained insights. When examining the coded data in greater detail, it became apparent that there was a relationship between critical illness recovery and the social determinants of health. An in-depth analysis of all coded data related to social determinants of health was then conducted. Of note, although the healthcare system itself is a social determinant of health, the relationship between healthcare services and critical illness recovery in the larger study will be published separately, owing to the extent of these findings. The in-depth analysis of coded data involved identifying transcript segments that reflected emergent patterns, diversities and examples in the data and comparing data across participants and across the patient, family caregiver and HCP datasets. The process of coding the data was characterised by inductive, active and iterative steps rather than one centred on intercoder reliability. As the analysis progressed, the research team actively participated in open dialogue and discussions, which facilitated an interpretive analysis enriched by the varied viewpoints of our patient partners and clinical stakeholders. The insights derived from patient, family caregiver and HCP data exhibited convergence. As a result, the findings present the perspectives of these diverse participant groups together. Sociodemographic, medical and questionnaire data were analysed descriptively. ## Findings Of the 74 participants, 30 were patients, 25 were family caregivers and 19 were HCPs. The patients and family caregivers represented a total of 37 unique patient cases (figure 1). Fifteen of the 37 cases were patient-only interviews, meaning that only 15 of the 30 patients interviewed did not have a caregiver who participated. Four patients who were interviewed individually had a caregiver who participated and were interviewed separately. The rest were interviewed with their caregiver(s) for at least one interview. There were also seven cases where the caregiver was interviewed but the patient was not. See table 1 for participant demographic and questionnaire data, table 2 for patient medical data and table 3 for HCP demographic data. View this table: [Table 1](http://bmjopen.bmj.com/content/14/11/e089086/T1) Table 1 Patient and family caregiver characteristics View this table: [Table 2](http://bmjopen.bmj.com/content/14/11/e089086/T2) Table 2 Patient medical characteristics View this table: [Table 3](http://bmjopen.bmj.com/content/14/11/e089086/T3) Table 3 HCP characteristics ![Figure 1](http://bmjopen.bmj.com/https://bmjopen.bmj.com/content/bmjopen/14/11/e089086/F1.medium.gif) [Figure 1](http://bmjopen.bmj.com/content/14/11/e089086/F1) Figure 1 Participant cases with patients and caregivers. The convergence of persistent health issues and disability alongside challenges with employment and finances, home set-up, transportation, food and nutrition, medications and social support appeared to interfere with recovery. Data from patients, family caregivers and HCPs suggested that critical illness sequelae altered these intermediary social determinants of health. However, it was also evident that these social determinants of health exerted an impact on patient recovery, implying a reciprocal and interdependent relationship figure 2). ![Figure 2](http://bmjopen.bmj.com/https://bmjopen.bmj.com/content/bmjopen/14/11/e089086/F2.medium.gif) [Figure 2](http://bmjopen.bmj.com/content/14/11/e089086/F2) Figure 2 Reciprocal relationship between social determinants of health and health and disability challenges. ADL, activities of daily living. ### Employment and financial challenges Before critical illness, 32/55 (58.2%) participants were employed (14/30 (46.7%) patients and 18/25 (72.0%) family caregivers) and 23/55 (41.8%) indicated it was somewhat difficult or difficult living on their household income (14/30 (46.7%) patients and 9/25 (36.0%) family caregivers). After critical illness, 18/55 (32.7%) participants were employed (4/30 (13.3%) patients and 14/25 (56.0%) family caregivers), and 33/55 (60.0%) indicated it was somewhat difficult or difficult living on their household income (19/30 (63.3%) patients and 14/25 (56.0%) family caregivers). See table 1 for patient and family caregiver participant demographic and questionnaire data. Patients largely attributed their loss of employment to their ongoing illness issues related to their index ICU admission as well as disabilities secondary to their critical illness that made it impossible to perform their employment-related activities. Several patients who were unable to return to their employment recounted experiencing predictable yet distressing financial difficulties. The loss of employment and income made it difficult to cover basic necessities, like housing and food, as well as ongoing financial commitments, such as mortgage payments and utility bills. For example, a man aged 42 years commented that *“the hardest part is not working and trying to keep up with my bills”.* Impairment and disability also interfered with the training or education that younger patients had hoped to return to and that they envisioned would provide future financial stability. Educational disruptions and having to *“put off my schooling”* led to patients feeling *“worried about getting back to where I was before”.* Those patients who were financially secure prior to critical illness, nearing retirement or had employment-related disability benefits expressed ‘*feeling lucky*’ that they could afford not to work during their recovery. However, when envisioning their future, many of those who conveyed some financial security during their initial recovery worried about their employment prospects. > I’ve been in the same trade for five years. So eventually, it’s going to be hard even to go back on steel-toe boots for 12-hour shifts. They [have] got a lot of chemicals in there too. [I’m] not even close [to going back to work], unfortunately. I’m doing nothing. I paid short-term and long-term [disability insurance] right off my paychecks. So long-term kicked in. So, I get paid. It’s not like I’m starving or anything. But I have not been back to work at all… Whether they want to retrain me to do something different at work, I don’t know. I highly doubt they would. (Man aged 48 years, admitted to ICU) In some situations, when the patient was unable to return to their employment, there was a shift in household financial responsibility to other family members who may have already assumed additional responsibilities, such as housework, childcare or caregiving for the patient. Patients expressed concerns about their loved ones’ well-being and guilt and shame for relying on their support. Furthermore, the uncertainty associated with the unknown recovery and return to employment timelines was anxiety-provoking for both patients and family caregivers, as evident in the example given by one HCP. > I had this young gentleman who was a building manager, [his] wife did not work. They have young children. So, [his] wife was a full-time mom and all of a sudden, he is not able to work and there was no income per se…. He’s not in the state to work with lingering disability, he actually had paralysis of the hands. He may not be able to even help with household chores. It just all fell on [his] wife, and [she was] very stressed taking care of children, trying to meet the financial need, and uncertainty about him being able to go back to work. (Physiotherapist) During the patient’s hospitalisation, employed family caregivers described taking unpaid leaves, using sick time or vacation time or adjusting their work schedules. Consequently, when patients finally returned home, numerous caregivers had limited sick time or vacation time remaining, while some worried about their performance and losing their job or being passed over for a promotion. Already on tenuous ground with their employers, many caregivers revealed they did not “*have the option to stay home because I need money. I can’t afford life right now”,* but continued to take time off work to care for their loved one even though, *“I’m risking my job”.* Trying to balance full-time caregiving with their employment and financial stability proved to be a source of stress, physical exhaustion and mental strain. Several caregivers described their difficult decision not to return to their employment, primarily when the patient required almost 24/7 care and the family feared the consequences of not being there full-time. This decision was accompanied by financial setbacks, worry and distress. For example, a young woman’s father indicated he was ‘*reluctant’* to return to employment, knowing that “*my daughter needs full-time attention”.* As such, his wife and the mother of the patient took a second job, citing their financial pressures: > We have a mortgage, we have a car loan, everything’s rising with inflation and probably recession. I mean, we have to work. It was so hard during that first month. We lacked sleep. Sometimes we just eat whatever. We don’t have enough nutrition during that time. We lost sleep and the psychological effect, it’s so depressing. And then you have panic attack, anxiety, everything, all negative because you don’t know what will happen. (Mother aged 64 years, daughter admitted to ICU) ### Inadequate home set-up Participants frequently highlighted the unanticipated difficulties they encountered on returning home, which had not been modified to accommodate their newly acquired physical impairments. While many recognised the modifications or safety and mobility equipment that could have enhanced the accessibility of their homes (ie, handrails, access ramps, special mattresses, stair lifts, toilet chairs and chair lifts), only a few were aware in advance of the necessity for such modifications, and even fewer had the available time and financial means to undertake home adaptations. Tasks such as navigating stairs, using bathroom facilities, finding suitable seating, and dealing with the layout and design of the home presented significant hurdles in carrying out daily activities crucial for recovery. One HCP described fall risks in patients’ homes they commonly encountered. > We’ve gone into homes where there’s so many boxes and, and just stuff that the mobility of that client is very hazardous because they can’t even walk from their bathroom to their bedroom because there’s just so much clutter. Or, there’s rugs that are loose in around, or you go into the bathroom, and there’s no handrails anywhere… They have an old bathtub that they actually have to climb into instead of a shower that they can walk into with hand bars. (Home care manager) The inaccessibility and inadequacy of patients’ homes appeared to contribute to immobility, falls and accidents, additional symptoms such as pain, discomfort and breathlessness when trying to function, and associated fear, worry and distress. Patients who lived alone or did not have a family caregiver to modify their home, ensure it was safe, or help them with daily living were especially vulnerable, as evident in one patient’s recounting of his initial return home. > She [emergency contact] met the transport driver here at the building and came in with me and basically told me at my front door that my toilet didn’t work. Then I spent a night here and I didn’t feel like I was ready to leave [the hospital] when I did. And, next morning, I woke up, got out of bed and fell down. I crawled to the bathroom and then I laid there and yelled until somebody outside heard me and called 911. (Man aged 65 years, admitted to ICU) This vulnerability was exacerbated in situations where patients were in desperate need of assistance at home but were unable to afford to pay for equipment or care. While some patients were grateful that they received home nursing care, there were far more whose anticipated home care did not materialise or did not provide the extent of assistance required. Participants with financial means eventually paid for private home support and home modifications, some at great cost, or even moved once they realised that the home was not conducive to recovery, with the patient ‘*like a prisoner in the house’.* There were also patients who lost their housing while they were critically ill, including those whose housing had been part of their employment, and with employment loss came housing loss. For example, one young woman indicated that her only option was to move back in with her parents, losing her independence and resulting in feeling that *“I have nothing now”.* The HCP participants also described how the consequences of employment loss could be especially far-reaching for patients who were already in a precarious financial or underemployed situation before their critical illness. > You have a patient who is poor, lower on the income scale and may have lost housing due to being in the hospital. They end up having to go to a shelter. You can’t get a job for them. You can’t get them re-employed… But then they have to find housing. It’s hard, sometimes you have to go to the shelter in the interim and have outreach workers help them look for housing. And to find housing, affordable housing on income assistance by yourself is impossible because you can’t afford it. (Social worker) ### Transportation barriers Despite most patients and caregivers residing in a medium or large city (52/55, 94.5%), difficulties with transportation were commonly reported across interviews. Feeling physically unable or too exhausted to drive, coupled with the fear of leaving the house, created what felt like an insurmountable barrier to recovery at times, especially for patients who did not have a family caregiver able or available to drive. Those reliant on public transportation encountered multiple challenges, even when using services specifically for those with a disability, as highlighted by an elderly family caregiver. > They [transportation service] pick you up in time to get to your appointment and then you have to give them a time when you think you’re finished your appointment. And that’s not always easy to do, so you give them a time and if you’re not there within five min, they leave. So, you’re on your own. (Mother aged 77 years, son admitted to ICU) When a caregiver was able and available to drive, this was often one of the tasks they became responsible for, as described by a physician participant. > I think after long hospitalizations, a whole host of new deficits can come up and driving can be commonly something that’s no longer an option for the patient. So, I think caregivers often try to take that over, making physician appointments and follow-up appointments. I think often caregivers take that over and really want to be involved in those appointments so they know what’s going on and they know what to look out for. (Physician) Challenges with transportation contributed to patient discomfort and exhaustion when trying to get from one place to another, going without food or other supplies, missing or rescheduling medical appointments and social isolation. Navigating difficulties with transportation was distressing for patients who expressed guilt related to being dependent on others, as well as caregivers who were juggling employment and competing family responsibilities. ### Food insecurity and poor nutrition Those who were struggling financially, lived alone or had limited assistance from a family caregiver, and had marked physical impairment encountered significant food and nutrition challenges that interfered with recovery and contributed to a decline in their already fragile health. Patients frequently described their loss of appetite, feeling too exhausted to eat and mentally and physically unable to prepare meals. > Honestly, I was so drained. I said to [daughter] I have no energy. I don’t know why. Absolutely no energy even to eat. My, it was so difficult to even eat. I know it sounds silly, but it was so hard. Then at night, I would get all upset and worried. (Woman aged 76 years, admitted to ICU) Several patients recalled being unable to walk to the kitchen, stand for any length of time or even position themselves appropriately to eat, especially when they first came home. Many indicated they skipped meals and subsided on toast, crackers, cereal, soup or milkshakes. Although they recognised this was insufficient nutrition, some did not have the financial resources or assistance at home to eat differently. With limited options, some indicated they attempted to prepare meals but experienced pain or discomfort or had a fall or accident when doing so. Buying groceries was especially difficult for those struggling with finances because of the high cost of food and difficulties getting to and from the grocery store. In situations where there was no one to drive or carry groceries, those with financial means indicated they paid for a taxi or meal delivery service. However, there were patients who could not afford a cell phone to call a taxi, let alone pay for transportation or a meal service. These individuals indicated they had no choice but to *“walk with my little white cane”,* to the store even though they *“do not feel comfortable at all. It’s a very, very scary feeling… I basically bring a bag at a time”.* The struggle to get groceries seemed to weigh heavy on those in already precarious financial positions and now faced with significant health challenges that made getting food feel impossible and perhaps also compromised their health. > The nurses are saying stay off your feet and don’t walk and everybody else is saying, go here, go there, do this, do that. But I’m conflicted between trying to keep off my feet and getting bills paid and groceries bought… I’m a skinny guy. I’m 6 foot 2 and about 180 pounds normally and I’m about 152 [pounds] now. It’s hard to gain back weight when you can’t get the food in the fridge… I have been struggling to get groceries and you have to get a credit card to get groceries delivered… I can hobble around my house and not complain, but everything is a struggle with my eyes and my feet and my hand and my heart and everything else on top. (Man aged 65 years, admitted to ICU) ### Medication cost and management challenges A large number of patients (27/37, 73%) were discharged home with more than five medications prescribed. While many indicated their medications and medical supplies were paid for through their medical insurance, there were several participants who had lost their medication or medical equipment coverage because of retirement or loss of employment, or they had exceeded the amount covered through their insurance plans. > Medications are expensive because I don’t have coverage. It’s gone. When I retired, they gave me a pick of two plans… I was under the impression it was forever, but it wasn’t… It’s expensive, all the medications… I [have] got a diabetes medicine that I’m on that cost $170 dollars for one month. The other thing is, about every second or third month I get a bill from them for five or $600. And that’s with deductions from the government. (Man aged 77 years, wife admitted to ICU) Unable to afford medications or medical supplies, a couple of participants described cutting back or not purchasing or taking their medications as prescribed. > Many times when I come to the pharmacy, I’ve had to ask them, which is the most important one to get? Because I couldn’t get them all in one month. (Woman aged 76 years, admitted to ICU) Patients frequently commented on challenges with ‘*all the medications they were on’,* including ‘*keeping them straight’* and ‘*remembering to take them’.* Those with family caregivers expressed gratitude and the importance of having someone keep track of and administer their medications, especially when they were ‘*mentally exhausted’* or struggling with cognitive impairment. Like difficulties obtaining groceries, several participants described challenges getting to the pharmacy when there was no family caregiver to drive. Additionally, two patients were required to make daily visits to the pharmacy and/or to have bloodwork related to their medications conveyed that this task ‘*was like a full-time job’,* demanding considerable time and energy. ### Social support challenges Although 21/30 (70.0%) patients lived with a support person, there were nine (30.0%) who lived alone or had another type of living arrangement. The patients who conveyed less social support from family caregivers described significant challenges trying to recover from their critical illness once they were home. Unlike those who had family to help, patients who lived alone or had caregivers who were limited in the assistance they could provide were faced with navigating their everyday lives and recovery with more limited financial resources, housing and home arrangements, transportation, food and nutrition and medications, as highlighted previously. HCP participants commonly highlighted the intersection of employment and finances, social support network and the support to help patients recover from a critical illness. As a social worker described, > Families that are at the lower end of the economic spectrum really struggle with being able to maintain the support the patient may need. Community resources are sparse at best. And for the families that are working poor, they certainly want to be able to keep an eye on the patient, but they have to work and then with no support around, I think that it certainly is a concern for them… I think of people who are fairly new immigrants or not really fully integrated into society and living alone, and not having the support. (Social worker) In contrast, situations where patients lived with their family caregiver, especially in multigenerational households, or social support that was readily available, were conveyed as highly advantageous because caregiving could then be shared, and family members could support each other along with the patient. Nevertheless, even individuals who had family caregivers mentioned that these caregivers could not always provide the exact type or level of support that the patients required, as described by one patient. > I don’t get a lot of emotional support. He’s [husband] a great guy. We’ve been together for over 40 years now but, emotionally, he’s just not really there for me at all…. He does not get emotionally invested in a lot of this. So, it was like, okay, I was sick, and I got better, and so let’s just carry on. (Woman aged 60 years, admitted to ICU) Participants’ narratives also highlighted how critical illness modified patient and caregiver social support. Alterations in the roles and responsibilities of the patient and family members could strain relationships, create conflict and add to feelings of frustration and distress, exacerbating mental health challenges. > Coming out of ICU, you’re not the same person that you were before you went into ICU. And so, there may be a power dynamic shift. The caregiver may not know how to care, and have to learn and struggle through that. And, if the patient is unable to communicate verbally anymore, it’s learning that whole communication piece. So many patients coming out of ICU have post delirium, depression, post-ICU depression, and working through that relationship and having personality changes. I mean, just everything changes. So, the relationship’s taxed. It’d be great if everyone had relationship counselling. (Nurse practitioner) Furthermore, patients and family caregivers described their critical illness as contributing to the loss of friendships and social connections, a sense that their social circle had shrunk and disconnect from their community. Feeling unwell and having no energy to engage socially or join in activities as they used to and feeling self-conscious of their changed appearance and functioning meant friendships drifted apart. This was particularly concerning for the young adult participants. > My friends, they want to visit me, but I didn’t want to show them my current state. They’ve been contacting me all the time. But, it’s gone awkward… it’s a bit hard to see them in person…. It’s really different now. Cause I can’t even clean. I can’t even eat the things that I want. And also, even my current appearance has been changed. (Man aged 29 years, admitted to ICU) Adding to physical separation was the sense of emotional disconnect where the patients and caregivers felt their friends could not relate to what they had endured and that ‘*nobody particularly cares to listen or talk about it. Like nobody’s interested’*. Feeling different from their friends led many to rely on their caregivers or close family members. Social isolation and loneliness were commonly conveyed by the patients, compounding mental health struggles that arose from their critical illness and physical impairment, which further interfered with their motivation and ability to engage in their recovery. ## Discussion This comprehensive multiperspective qualitative study described how intermediate social determinants of health, namely challenges with employment and finances, home set-up, transportation, food insecurity and nutritional challenges, medications and social support, complicated and hindered critical illness recovery. There was evidence that critical illness sequelae also altered these social determinants of health, suggesting a reciprocal and interdependent relationship. Furthermore, individuals experiencing socioeconomic disadvantage before critical illness (eg, precarious employment, living alone) appeared at risk for acquiring even greater disadvantage following critical illness that markedly interfered with their recovery. This suggests an accumulation of risk for some and a widening of health inequities following critical illness. The knock-on effects of experiencing socioeconomic challenges on physical health, mental well-being and cognitive status following critical illness, as observed in our study, contribute to the growing body of evidence examining the relationship with various PICS elements. For example, consequences of financial toxicity identified among survivors of acute respiratory distress syndrome in a large qualitative study included harm to patients’ mental and physical health, increased reliance on others and specific material hardships.28 A 2022 nationally representative study of Medicare beneficiaries with ICU hospitalisations in the USA found that socioeconomic disadvantage was associated with a decline in function and cognition.19 Like others, we also found that PICS sequelae interfered with survivors’ and caregivers’ ability to be employed, function in their daily lives and engage with social supports, adding to the recognition that critical illness can precipitate adverse changes in the recovery environment.23 As seen in patients recovering from a wide range of illnesses,32 the acquisition of illness and disability undoubtedly contributes to a decline in social determinants of health.33 Thus, we firmly believe that socioeconomic position, particularly disadvantage, should be incorporated as a key domain of PICS, alongside physical impairment, mental health issues and cognitive impairment.22 Doing so might draw attention to, and spur further research on the social and economic challenges that are important to patients. It would also shift perspectives on socioeconomic position from being seen as immutable and inherent in individuals to being viewed as a target for interventions. Furthermore, it would signal to clinicians and healthcare service decision-makers that these factors fall within their purview.22 Our findings highlighted the fragile connection between healthcare and social services, as well as the challenges faced by acute care in prioritising assessments and addressing patient’s home environments before discharging them from the hospital. While hospital discharge planning optimally includes an assessment of what patients will need when they return home, this appeared severely lacking for many of our study participants, who were already at very high risk for poor health outcomes. This raises questions about whether HCPs in acute care have a deep enough sense of what patients require on discharge, whether the supports required are readily accessible in the fashion necessary to meet individuals’ needs, whether one-time assessments prior to hospital discharge are enough and whether patients and family caregivers can anticipate what they will need before even getting home. Additional factors may contribute to inadequate discharge preparation. The sheer number of patients can lead to pressure to discharge them swiftly, potentially rushing discharge planning. Transitions of care between acute care and the community may be insufficient, leaving patients with either excessive responsibility to seek support or unclear follow-up instructions. The healthcare system’s emphasis on acute stabilisation over prevention can lead to vulnerable patients being readmitted for similar issues, rather than preventing recurrence. Furthermore, it seemed that individuals in greatest need of health and social services, including those with significant disabilities, living alone or already experiencing financial hardship, were most at risk for encountering challenges to recovery at home. It is evident that even in our Canadian context with universal insurance, there are insufficient and inadequate health and social supports.34 35 HCPs, in particular, expressed the inadequacy of both acute and community services through which they might attend to the health and social needs experienced by those in the most precarious socioeconomic positions. Although Canada’s publicly funded healthcare system and extensive social programmes might be expected to alleviate the financial burden on patients for their healthcare needs, significant economic challenges can still arise, as seen in our study. This mirrors Canadian research among survivors of conditions such as cancer, acute myocardial infarction, cardiac arrest and stroke, where patients and caregivers experience reduced employment, an inability to work and economic losses.36–38 Simultaneously, survivors incur health-related costs because not all care components receive full funding, including expenses such as outpatient medications, medical equipment and restrictions on home care or allied healthcare services.11 According to a 2017 survey, on average, 20% of Canadians failed to fill their drug prescriptions because they could not afford it, 7% experienced serious problems paying medical bills and >50% relied on private health insurance to help cover costs.39 Difficulties affording medications, medical equipment and insufficient health insurance were evident among the critical illness survivors in our study. Despite the presence of policies and programmes in most Canadian provinces aimed at mitigating the medical expenses that fall outside the scope of public funding, such as income replacement, tax incentives and employer-provided health insurance, our research findings specific to critical illness recovery emphasise the ineffectiveness and/or limited accessibility of these programmes and policies. Addressing the intermediate social determinants of health highlighted in our study is crucial for improving the overall quality of care and support provided. Including and measuring variables reflecting the social determinants of health directly in post-ICU research will likely yield more robust evidence for these highly influential factors and will enhance our understanding of the intricate relationship between these variables and health outcomes. Jones *et al* 20 recommended routine and consistent reporting of multiple indicators of socioeconomic position in critical illness survivorship research, including occupation, education and income. Based on our findings, additional housing, food security and nutrition, medications and transportation indicators also deserve consideration and investigation. Considering the wide-reaching influence of the social determinants of health, longitudinal research is warranted to examine the influence on health outcomes beyond PICS, such as the development of new acute and chronic illnesses. Research is necessary to develop and implement effective strategies that work towards health equity in critical illness survivorship. Clinically relevant strategies to assess and identify individuals at risk for poor outcomes exacerbated by existing or acquired socioeconomic disadvantage could begin in the ICU, continue throughout the patient’s hospitalisation and be prioritised during hospital discharge planning. Although critical care clinicians may see this as out of their scope, they are well positioned to begin assessments that identify socioeconomic vulnerability and facilitate referrals that initiate multidisciplinary involvement in preparation for discharge planning and follow-up care. Clinicians need tools and support to be able to do this type of work. Gains made in establishing ICU recovery and follow-up clinics including home visits could be enhanced by efforts targeting social determinants of health. Innovative approaches show promise. For example, the integration of a social welfare consultation and the delivery of socioeconomic support into a rehabilitation programme (Intensive Care Syndrome: Promoting Independence and Return to Employment) delivered through five hospital sites in Scotland, UK, was found to be feasible.40 Moreover, an analysis of this programme suggested it might improve ICU survivor outcomes across the socioeconomic gradient, with potentially greater benefits for those from communities experiencing socioeconomic disadvantage.41 Given our findings, interventions to bolster social support and reduce social isolation and loneliness among ICU survivors and their caregivers are clearly indicated. Evaluation of in-person and virtual peer and professionally led support programmes suggests benefits to patients and family caregivers.42 Scaling up and adapting such programmes to local contexts requires additional research. ### Strengths and limitations The strengths of this research stem from the involvement of a large multidisciplinary team, including patient partners who contributed throughout the research process. This engagement enabled us to confirm that the study findings resonated with patient partners’ experiences and highlighted aspects of recovery that were important to them. A further strength was the inclusion of patient, caregiver and HCP study participants and our ability to triangulate the data for more robust findings. Study findings ought to be viewed within the context of where and how the research was conducted. This study took place in a single geographic health authority in Canada, and thus, findings represent the population and the nature of health services in this health authority. However, qualitative research is not meant to be generalisable but rather offers insights that might be relevant to other contexts. Recruitment and data collection also occurred amid the COVID-19 pandemic, greatly constraining our team’s ability to enrol participants and significantly prolonging recruitment timelines. It is also conceivable that the socioeconomic demands experienced by study participants during the pandemic, such as the employment and financial strains and decreased social interactions, exacerbated post-ICU challenges. Additionally, the COVID-19 pandemic’s strain on acute care services may have resulted in expedited hospital discharge, with limited focus on intricate social issues. The COVID-19 context may have also interfered with thorough assessments of the patient’s home environment, their ability to function at home and the organisation of necessary services to address socioeconomic vulnerability once the patient was home. However, we observed consistency in the accounts provided by participants interviewed throughout the study period, even after the healthcare system’s burden from the pandemic had eased. A limitation of this research was the inclusion of only English-speaking participants, which is not inclusive of the diverse population of the health authority. Although a high number of participants reported their cultural background as one that could be categorised as racialised, eight of which were Indigenous, we likely did not capture the experiences of those who were new immigrants and racialised, which is important given the intersection of ethnicity, immigration status and language with other social determinants of health. Since most of the study interviews were conducted virtually, we did not capture the perspectives of structurally vulnerable individuals with limited regular access to virtual communication tools (such as phones or Zoom). Furthermore, while we collected basic sociodemographic data, we did not collect more granular data relevant to the social determinants of health, such as the nature of patient and caregiver work before and after critical illness. ### Conclusion This Canadian study revealed how intermediate social determinants of health shaped recovery from critical illness, and conversely, how the sequelae of critical illness influenced these determinants. Moreover, individuals facing pre-existing socioeconomic challenges were at heightened risk of exacerbated disadvantage during recovery, widening health inequities. Addressing health inequities post-ICU will require concerted efforts that transcend fragmented healthcare services, incorporate comprehensive social assessments and actively coordinate comprehensive health and social services to ensure holistic support for patients and family caregivers. Clearly, research is warranted to determine effective strategies and how these can be tailored and implemented in different countries with varying health and social contexts. ### Supplementary data [[bmjopen-2024-089086supp001.pdf]](pending:yes) ## Data availability statement No data are available. The data that support the findings of this study are not available on request from the corresponding author nor are they publicly available because they contain information that could compromise the privacy of research participants. ## Ethics statements ### Patient consent for publication Not applicable. ### Ethics approval The study was approved by The University of British Columbia Behavioural Research and Fraser Health Research Ethics Boards (H21-01378 approved on 19 September 2021). The study was conducted according to the guidelines of the Declaration of Helsinki. Participants gave informed consent to participate in the study before taking part. ## Acknowledgments We would like to thank Bernard Lynch, Anita David, Miki Tsui and our other patient and caregiver partners on the Critical Illness Survival Patient Advisory Board, as well as Hiroki Sato and the other members of our multidisciplinary research team. We are also grateful to all of our participants for their support throughout this project. This publication is dedicated to our late patient partner, Myles Lynch. ## Footnotes * X @FuchsiaHoward, @therakesharora * Contributors Conceptualisation: AFH, GH; methodology: ST and AFH; formal analysis: AFH, KL, ST, LMC, RCA, RCMcD, OA, SC, SH, AE, BH and GH; writing—original draft preparation: AFH; writing—review and editing: AFH, GH, ST, KL, RCA, SH, SC, LMC, AE and BH; project administration: KL; funding acquisition: AFH and GH. All authors have read and agreed to the published version of the manuscript. AFH is the guarantor. * Funding This work was supported by the Canadian Institutes of Health Research (AWD-016294). AFH holds a Scholar Award and SC holds a Trainee Award from Michael Smith Health Research British Columbia. * Competing interests RCA has received honoraria from Edwards Lifesciences and HLS Therapeutics. RCA is on the Advisory Board for Renibus Therapeutics. All honoraria and board membership are for work unrelated to this manuscript. SC has received honoraria from Baxter Healthcare for work unrelated to this manuscript. No other authors have any potential competing interests to disclose. * Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Methods' section for further details. * Provenance and peer review Not commissioned; externally peer reviewed. * Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise. [http://creativecommons.org/licenses/by-nc/4.0/](http://creativecommons.org/licenses/by-nc/4.0/) This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: [http://creativecommons.org/licenses/by-nc/4.0/](http://creativecommons.org/licenses/by-nc/4.0/). ## References 1. 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