Physical, social, mental and spiritual functioning of COVID-19 intensive care unit-survivors and their family members one year after intensive care unit-discharge: A prospective cohort study

Abstract

Objective

To describe the long-term functioning of patients who survived a COVID-19-related admission to the intensive care unit and their family members, in the physical, social, mental and spiritual domain.

Design

A single-centre, prospective cohort study with a mixed-methods design.

Setting

The intensive care unit of the University Medical Center Groningen in the Netherlands.

Main outcome measures

To study functioning 12 months after intensive care discharge several measurements were used, including a standardised list of physical problems, the Clinical Frailty Scale, the Medical Outcomes Study Short-Form General Health Survey, the McMaster Family Assessment Device, the Hospital Anxiety and Depression Scale, and the Spiritual Needs Questionnaire, as well as open questions and interviews with survivors and their family members.

Results

A total of 56 survivors (77%) returned the 12-month questionnaire, whose median age was 62 (inter-quartile range [IQR]: 55.0–68.0). Moreover, 67 family members (66%) returned the 12-month questionnaire, whose median age was 58 (IQR: 43–66). At least one physical problem was reported by 93% of the survivors, with 22% reporting changes in their work-status. Both survivors (84%) and their family members (85%) reported at least one spiritual need. The need to feel connected with family was the strongest. The main theme was ‘returning to normal’ in the interviews with survivors and ‘if the patient is well, I am well’ in the interviews with family members.

Conclusions

One year after discharge, both COVID-19 intensive care survivors and their family members positively evaluate their health-status. Survivors experience physical impairments, and their family members’ well-being is strongly impacted by the health of the survivor.

Implications for clinical practice.

• •Despite regaining functioning after one year, COVID-19 intensive care unit-survivors and their family members express the need for sufficient and appropriate follow-up care.
• •Within the social domain, returning to work is an important issue to intensive care unit-survivors and is perceived as a sign of recovery and return to normality. This issue should be included in follow up care by healthcare professionals.
• •The different experiences of intensive care unit-survivors and their family members in relation to COVID-19-related intensive care unit-admission can lead to different coping processes and may require different methods of follow-up care for them.
• •Within the spiritual domain, nurses, doctors, and other healthcare professionals should be aware that the term ‘spirituality’ is often conflated with religion and that it may be helpful to use other words to identify spiritual needs.

Introduction

Since the outbreak of COVID-19, over 450 million people have been affected by the SARS-Cov-2 virus worldwide (WHOb, 2020), leading to a large number of patients requiring Intensive Care Unit (ICU) admission (Our World in Data, 2021). An ICU-admission has potentially long-lasting consequences for ICU-survivors and their family members. ICU-survivors may develop physical, psychological, and/or cognitive problems, also called Post-Intensive Care Syndrome (PICS) (Harvey and Davidson, 2016, Needham et al., 2012). Approximately 70 % of ICU-survivors develop one or more PICS symptoms one year after ICU-discharge (Geense et al., 2021). Furthermore, family members are prone to develop symptoms of anxiety, depression and Post Traumatic Stress Disorder (PTSD) (van Beusekom et al., 2016), also known as Post-Intensive Care Syndrome-Family (PICS-F) (Davidson et al., 2012).

For both ICU-survivors and their family members, symptoms can have a negative influence on aspects of their social domain of daily living, such as return to work, roles and responsibilities within the family system and Quality of Life (QoL) (Kang and Jeong, 2018, Petrinec and Martin, 2018, van Beusekom et al., 2016). Spiritual questions, such as meaning and purpose in life or identity related questions, may arise as a result of the confrontation with the possibility of death (Ho et al., 2018). In addition, the ICU experience of patients is different from the experience of their family members, which may subsequently affect their personal and dyadic coping processes (Fumis et al., 2015). Spirituality can be defined as ‘… the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred’ (Puchalski et al., 2009). It implies that spirituality can be experienced both within and outside religious traditions.

Given the large number of COVID-19-related ICU-admissions, the incidence of PICS and PICS-F is expected to increase (Berger and Braude, 2021). In addition, besides the known risk factors of PICS and PICS-F (Jolley et al., 2016, Mikkelsen et al., 2020 ), COVID-19 has also created other factors that may increase psychological and spiritual problems, such as visiting restrictions, the lack of visibility of healthcare providers due to wearing protective clothing and social distancing from relatives and friends (Berger and Braude, 2021).

Despite increasing knowledge about COVID-19, little is still known about the one-year consequences for ICU-survivors, and even less for their family members. A recently published study described the clinical outcomes of patients one year after COVID-19-related ICU-admission (Heesakkers et al., 2022a). Another study described the psychological consequences faced by the family members of COVID-19 ICU-survivors (Heesakkers et al., 2022b). We herein present the COVID-19 Follow-up Intensive Care Study (COFICS) to describe the long-term functioning of COVID-19 ICU-survivors and their family members in the physical, social, mental and spiritual domain. Previously we reported the three- and six-months results (van Veenendaal et al., 2021). In this paper, we report on their 12-month outcomes.

Methods

Study design

The COFICS is a single-centre, prospective cohort study with a mixed-methods design, performed at the ICU of the University Medical Center Groningen (UMCG) in the Netherlands. The ICU is a mixed ICU and consists of 35 beds with over 3000 admissions per year. Of these, 19 % are cardio-thoracic admissions, 45 % are medical admissions and 36 % are other admissions. Before the COVID-19 pandemic the overall median ICU Length of Stay (LOS) was 2.5 days (Stichting NICE, 2019).

This study was conducted in accordance with the convergent design, where qualitative and quantitative data are being collected simultaneously and only after that, merged and compared (Creswell and Plano Clark, 2017). The STROBE checklist for cohort studies was used to guide the quantitative part of this study.

Participants

Recruitment took place between March 19th and September 30th 2020. All COVID-19 patients who survived the ICU and their family members were eligible to participate. COVID-19 was diagnosed according to World Health Organization (WHO) definition and was confirmed by RNA detection of the SARS-CoV-2 using the polymerase chain reaction (PCR)-based technique. Family members could be partners, children, other family members, or friends who were identified by the patient as important.

Data collection

An experienced research nurse invited eligible ICU-survivors by telephone to participate in the study, three months after ICU-discharge. In addition, the ICU-survivors were asked permission to contact family members for participation. One or more family member(s) per ICU-survivor could participate. For the first part of the study, questionnaires were sent by mail three and six months after ICU-discharge (van Veenendaal et al., 2021). For the current part of the study, questionnaires were sent by mail 12 months after ICU-discharge. All participants received validated questionnaires, combined with open questions. Additionally, participants received an invitation to an interview with a healthcare chaplain under training.

Measures

Fig. 1 shows the measurements used to study the physical, social, mental and spiritual well-being of ICU-survivors and their family members.

Fig. 1.

The bundle of measurements used in the COFICS at 12 months post ICU-discharge. NB. Questions in de physical domain were only offered to ICU-survivors.

Questionnaires

The Dutch version of the 9-point Clinical Frailty Scale (CFS) (Dieperink et al., 2017) was used to express the overall level of frailty. The CFS is found to be highly correlated with the Frailty Index (Pearson coefficient 0.80, p < 0.01) showing good construct validity and reliability (intraclass correlation coefficient 0.97, p < 0.001). (Rockwood et al., 2005, Rockwood et al., 2015). Physical symptoms were collected using a standardised list based on our own results at six months (van Veenendaal et al., 2021), as well as two other cohort studies among non-COVID-19 and COVID-19 ICU-survivors (Geense et al., 2021, Huang et al., 2021) (Table 3). To study physical and social functioning, the Medical Outcome Study (MOS) Short-Form General Health Survey (SF-20) was used (Kempen, 1992), containing six QoL domains: physical functioning, role functioning, social functioning, mental health, general health perception and pain. The SF-20 is validated in the general Dutch population (Kempen, 1992) and each subscale showed sufficient correlation coefficient scores ranging from 0.030 to 0.73 (p < 0.001) and high test–retest reliability ranging from 0.58 to 0.85 (p < 0.001) (Kempen, 1992, van Rompaey et al., 2009). Overall family functioning was measured using the general functioning scale of the McMaster Family Assessment Device (FAD-GF6 + ) (Boterhoven de Haan et al., 2015, Hamilton and Carr, 2016). The assessment shows satisfying validity scores (a correlation of 0.909, 95 % CI: 0.90 – 0.92) (Hamilton and Carr, 2016). Psychological well-being was measured with the Hospital Anxiety and Depression Scale (HADS) (Zigmond and Snaith, 1983). The validity of the HADS is sufficient with correlation coefficients ranged between 0.67 and 77 whereas the Cronbach’s alpha scores varied for HADS-A from 0.68 to 9.3 and for HADS-D from 0.67 to 0.90 showing satisfying reliability (Bjelland et al., 2002) and is validated in the Dutch population (Spinhoven et al., 1997). To study spiritual needs, the Spiritual Needs Questionnaire (SpNQ) was used, containing four subscales of spiritual needs: religious needs, existential needs, inner peace needs and needs for positive confirmation (Büssing et al., 2010, Büssing et al., 2018, Nolan). The SpNQ has shown to be reliable with Cronhach’s alpha’s ranging from 0.71 to 0.87 (Nolan, 2022). Several versions of the questionnaire are available. In the current samples all subscales except ‘existential needs’ showed good reliability. For an overview of the version used in the COFICS, refer to supplement 1.

Table 3.

The physical, social, mental, and spiritual outcome in COVID-19 ICU survivors 12-months post-ICU-discharge.

Domain	Variable	12 months (n=56)
Physical	Frailty, n (%)
	Not frail (1-3)	46 (82)
	Mildly frail (4-5)	9 (16)
	Frail (6-8)	1 (2)
	Self-reported symptoms5, n (%)
	Any one of the following symptoms	52 (93)
	Fatigue	35 (63)
	Weakened condition	37 (66)
	Pain in one or more parts of the body	30 (54)
	Joint pain	15 (27)
	Chest pain	8 (14)
	Muscle pain (myalgia)	15 (27)
	Nerve pain	10 (18)
	Wound pain	1 (2)
	Abdominal pain	5 (9)
	Cognitive problems	27 (48)
	Dyspnoea	21 (38)
	Polyneuropathy	20 (36)
	Impaired hand functioning	20 (36)
	Muscle weakness/stiffness	19 (34)
	Tingling or numb sensation in arms or legs	19 (34)
	Reduced lung function	18 (32)
	Voice problems	14 (25)
	Difficulty walking	13 (23)
	Difficulty sleeping	12 (21)
	Dizziness	10 (18)
	Hair loss	8 (14)
	Sexual problems	6 (11)
	Skin problems	5 (9)
	Loss of smell	3 (5)
	Swallowing difficulties	3 (5)
	Loss of hearing	3 (5)
	Loss of taste	3 (5)
	Physical functioning1 (range 0-100)	66.7 (50.0-83.3)
	Experienced health1 (range 0-100)	60.0 (35.0-75.0)
	Pain2 (range 0-100)	50.0 (0.0-75.0)
Social	Role activities1 (range 0-100)	100 (0.0-100.0)
	Social functioning1 (range 0-100)	80.0 (60.0-100.0)
	Family functioning1 (range 1-4)	4.0 (3.2-4.0)
	Return to work, n (%)3
	No change	7 (24)
	Reduced work percentage	5 (17)
	Occupation change (often in combination with
	reduced work percentage)	12 (41)
	Re-integration	5 (17)
	Too ill to work	3 (10)
	Early retirement	2 (6)
	Other	2 (6)
	Work percentage (100%=full-time), mean (SD)	38.9 (36.5)
Mental	Anxiety (range 0-21)	2.0 (.0.0-5.0)
	Depression (range 0-21)	2.0 (0.0-3.3)
Spiritual	‘Yes’ to 1 or more spiritual need(s), n (%)	47 (84)
	Religious needs, n (%) - strength, mean (SD)	12 (21) - 0.12 (0.28)
	Existential needs, n (%) - strength, mean (SD)	25 (45) - 0.38 (0.54)
	Inner peace needs, n (%) - strength, mean (SD)	37 (66) - 0.74 (0.79)
	Needs for positive confirmation, n (%) - strength, mean (SD)	45 (80) - 0.80 (0.67)
	Need to feel connected with family, n (%) - strength, mean (SD)	38 (68) - 1.44 (1.13)
	Spirituality played a role in coping with Covid-19
	Yes	9 (16)
	No	46 (82)
	No answer	1 (2)
Other	Health care consumption, n (%)
	Yes	48 (86)
	Physiotherapist	39 (70)
	General practitioner	31 (55)
	Pulmonologist	22 (39)
	Psychologist	7 (13)
	Home care	5 (9)
	Chaplain	1 (2)
	Pastor/Imam	1 (2)
	Other4	17 (30)

All numbers given are the median and interquartile range (IQR), unless otherwise stated.

Abbreviation: ICU = Intensive Care Unit.

1A higher score reflects a better functioning 2A higher score represents pain in a greater extent 3ICU survivors employed before COVID-19 infection n = 29 4Other health care consumption were mentioned for example; social work, cardiologist, (vascular) surgeon, neurologist or otorhinolaryngologists.

Interviews

Open interviews were conducted by two health care chaplains under training (student researchers), in the context of their master theses. The student researchers interviewed ICU-survivors and family members separately and independent from each other. Previously the student researchers received interview training as part of their education. The interviews started with the question ‘How have you experienced the past year, since your (loved one’s) ICU-admission?’ Subsequently participants were asked about three topics, i.e. spiritual experiences, needs regarding peace, religion, connectedness and vulnerability, and resources that helped to fulfil these needs. In addition, the role of spirituality during and after the ICU stay was explored.

All interviews were conducted remotely, either via Microsoft Teams or by telephone, and audio-recorded. Each interview lasted 55 min on average, ranging from 35 to 105 min.

Demographics

Demographic characteristics of the ICU-survivors, including age, gender and clinical data, such as length of hospital- and ICU-stay, comorbidities and delirium, were retrieved from the electronic patient files. Other demographic data, such as educational level and marital status, as well as healthcare consumption and family characteristics, were addressed in the questionnaire.

Data analysis

Quantitative data are reported as a median with inter-quartile range (IQR), mean with associated standard deviation, or number with percentage. Descriptive analyses were performed using IBM SPSS Statistics version 23.0 for Windows.

Interviews were transcribed verbatim by two student researchers using F4 and Microsoft Word. Both researchers also performed the basis of the analysis in accordance with the steps of reflexive thematic analysis (Braun and Clarke, 2006) to allow insight into overarching themes describing the patterns of experience within and between interviews. Therefore, the interview fragments were first deductively categorised based on the three main topics (i.e. experiences, needs and resources). Then, the categorised fragments were read and re-read while the initial ideas were noted. In the coding phase, initial codes that identified specific experiences, needs and resources, and roles of spirituality were written in the margin of the documents and reflected upon in memos. Subsequently, the two student researchers examined how experiences, needs and resources interacted, to understand the initial themes. These were reviewed by a senior researcher (AV), who listened to the interview recordings and also formulated main themes based on this. In the defining and naming phase the initial themes were merged into one main theme for the ICU-survivors, one main theme for the family members and several subthemes for both groups. This outcome was verified by an independent researcher (IvdM) who listened to two interview recordings as well.

Ethical approval

The COFICS is a sub-study of a larger cohort study called the Follow-up Intensive Care Studies (FICS). The local medical ethical committee approved the protocol for the FICS (METc 2018/627) and waived the need for formal evaluation in accordance with the Dutch Medical Research Involving Human Subjects Act (Sorgdrager, 1998). All participants provided written consent by returning the completed follow-up questionnaire. Additional consent for the interviews was obtained via written informed consent and a telephone call. All participants were allowed to withdraw from the study at any time without providing a reason. This study was performed in accordance with the principles of the Declaration of Helsinki (WMA, 2013).

Results

Study population: patients

At 12-months follow-up, 56 (77 %) out of 73 eligible COVID-19 ICU-survivors responded (Fig. 2 ) of whom 38 (68 %) were male with a median age of 62 (IQR: 55.0–68.0). The median length of ICU stay was 18.9 days (IQR: 12.3–32.7). A total of 27 (48 %) ICU-survivors experienced delirium during their ICU stay. After hospital discharge, 23 ICU-survivors (41 %) went home, and an equal number were discharged to a nursing home or rehabilitation centre. Ten ICU-survivors (18 %) were relocated to another hospital. Before their ICU-admission, 36 survivors (64 %) were employed. The characteristics of the ICU-survivors are shown in Table 1A .

Fig. 2.

Participant recruitment in the COFICS.

Table 1A.

Characteristics of enrolled COVID-19 ICU-survivors.

Variable	ICU-survivors (n=56)
Age, years, median (IQR)	62.0 (55.0-68.0)
Sex, n (%)
Male	38 (68)
Female	18 (32)
Marital status, n (%)
Married/living together	49 (88)
Single	7 (12)
Educational level1,2, n (%)
Low	18 (32)
Middle	21 (38)
High	16 (29)
Employment status2, n (%)
Employed	36 (64)
Unemployed	20 (36)
BMI, kg/m2, at ICU-admission, median (IQR)	29.6 (27.0 -32.4)
BMI, at ICU-admission, n (%)
Normal (18.5-25)	3 (5)
Overweight (25-30)	27 (48)
Obese (30-35)	20 (36)
Extremely obese (>35)	6 (11)
APACHE IV2, total score, median (IQR)	55.0 (45.0-66.0)
Comorbidities, n (%)
Hypertension	18 (32)
Diabetes mellitus	13 (23)
Cardiovascular disease	11 (20)
Cerebrovascular disease	1 (2)
COPD / asthma	6 (11)
Chronic kidney disease	3 (5)
Malignancy	3 (5)
ECMO, n (%)
Yes	3 (5)
No	53 (95)
Length of ECMO, days, mean (SD)	21.7 (2.5))
Mechanical ventilation, days, median (IQR)	16.3 (10.6-27.5)
Delirium during ICU-stay, n (%)
Yes	27 (48)
No	29 (52)
Length of ICU stay, days, median (IQR)	18.9 (12.3-32.7)
Length of hospital stay, days, median (IQR)	29.9 (21.9-44.7)
Discharge location2, n (%)
Home	23 (41)
Other hospital	10 (18)
Nursing home	4 (7)
Rehabilitation center	19 (34)

Abbreviations:

IQR = interquartile range; SD = standard deviation; BMI = Body Mass Index; APACHE IV = Acute Physiology And Chronic Health Evaluation; ECMO = ExtraCorporeal Membrane Oxygenation; ICU = Intensive Care Unit.

¹According to the ISCED2011 classification ²Incomplete data; educational level n = 1 missing; APACHE IV n = 5 missing.

Furthermore, 40 ICU-survivors were invited to participate in an interview, of whom ten were initially willing to participate. Since we expected this number to be sufficient, no more invitations were sent. However, two of them withdrew, and two interviews were cancelled for logistical reasons. Of the six ICU-survivors interviewed, four were male with a mean age of 65 years (range: 61–69). The characteristics of the interviewed ICU-survivors are shown in Table 2.

Table 2.

Characteristics of interviewed participants.

Variable	Family members (n=67)
Relation to patient, n (%)
Partner	44 (66)
Son/daughter	17 (25)
Parent	4 (6)
Sibling	2 (3)
Age1, years, median (IQR)	57.5 (42.5-65.8)
Sex1, n (%)
Male	19 (28)
Female	47 (70)
Marital status, n (%)
Married/living together	58 (87)
Single	9 (13)
Educational level2, n (%)
Low	15 (22)
Middle	34 (51)
High	18 (27)
Employment status, n (%)
Employed	37 (55)
Unemployed	30 (45)

*Dyads were interviewed seperately by different researchers.

Study population: family members

A total of 102 family members of COVID-19 ICU-survivors were invited to participate, of whom 67 (66 %) returned the 12-month questionnaire (Fig. 2). The participants had a median age of 58 (IQR: 43–66), were mostly females (70 %) and were mainly partners of ICU-survivors (66 %). A total of 37 family members (55 %) were employed before the ICU-admission of their relative. The characteristics of participating family members are shown in Table 1B .

Table 1B.

Characteristics of enrolled family members of COVID-19 ICU-survivors.

Variable	Family members (n=67)
Relation to patient, n (%)
Partner	44 (66)
Son/daughter	17 (25)
Parent	4 (6)
Sibling	2 (3)
Age1, years, median (IQR)	58 (43–66)
Sex1, n (%)
Male	19 (28)
Female	47 (70)
Marital status, n (%)
Married/living together	58 (87)
Single	9 (13)
Educational level2, n (%)
Low	15 (22)
Middle	34 (51)
High	18 (27)
Employment status, n (%)
Employed	37 (55)
Unemployed	30 (45)

Abbreviations: IQR = interquartile range.

¹Incomplete data (sex n = 3 missing; age n = 1 missing) ²According to the ISCED2011 classification.

Furthermore, 50 family members were invited to participate in an interview, of whom nine agreed to participate. Three interviews were cancelled for logistical reasons. Of the six interviewed family members, five were female with a mean age of 54 years (range: 42–72). Three of the respondents were spouses of ICU-survivors, two were children of ICU-survivors and one was a sibling. Three of the respondents had been infected with COVID-19 as well. The characteristics of the interviewed family members are shown in Table 2 .

Quantitative results

Physical domain

Overall, 12 months after ICU-discharge, 82 % of the ICU-survivors rated their condition as ‘not frail’ (Table 3 ). However, 93 % of them reported at least one physical symptom, mainly fatigue (63 %), weakened condition (66 %) and pain (54 %). The mean pain score on the SF-20 was found to be 50 (range: 0–100), and both physical functioning and experienced health were found to be moderate, with scores of 66.7 and 60.0, respectively (range: 0–100).

Social domain

ICU-survivors rated role activities (MOS-12) as maximum, with a score of 100 (range: 0–100), similar to family functioning (FAD6 + ), with a score of 4 (range: 1–4). Social functioning (MOS-12) was rated with a score of 80 (range: 0–100). Seven ICU-survivors (24 %) reported no occupational changes, whereas 22 (61 %) reported being in a process of re-integration to work or change to their occupation, sometimes in combination with a reduced work percentage. Three ICU-survivors (10 %) indicated that they were still unable to work as a result of their COVID-19 infection.

Family members rated family functioning with a score of 3.8 (range: 1–4), and 29 family members (78 %) reported no occupational change compared to their previous situation. Moreover, four family members (11 %) reported a reduced work percentage, and two (6 %) indicated being in a process of re-integration to work.

Spiritual domain

Of the ICU-survivors, 84 % reported at least one spiritual need on the SpNQ (Table 3). The need for positive confirmation and attention was the most often reported (80 %), with a mean score of 0.80 (SD: 0.67). Two-thirds of the ICU-survivors (68 %) reported the need to feel connected with family and needs for inner peace (66 %), with mean scores of 1.44 (SD: 1.33) and 0.74 (SD: 0.79), respectively. In addition, 46 ICU-survivors (82 %) answered with ‘No’ to the question of whether spirituality played a role in coping with COVID-19.

Among the family members, 85 % reported at least one spiritual need on the SpNQ (Table 4 ). Most of the family members reported needs for inner peace (80 %) and needs for positive confirmation and attention (76 %), with mean scores of 1.03 (SD: 0.82) and 0.87 (SD: 0.73), respectively. Furthermore, over half of the family members (60 %) reported the need to feel connected with family, with a mean score of 1.25 (SD: 1.14). Moreover, 53 family members (79 %) answered with ‘No’ to the question of whether spirituality played a role during the disease process of their relative.

Table 4.

The physical, social, mental, and spiritual outcome in family members of COVID-19 ICU-survivors 12-months post-ICU-discharge.

Domain	Variable	12 months (n=67)
Social	Family functioning1 (range 1-4)	3.8 (3.0-4.0)
	Return to work2, n (%)
	No change	29 (85)
	Reduced work percentage	4 (12)
	Occupation change	0
	Re-integration	2 (6)
	Not returned to work	0
	Job loss	1 (3)
	Unknown	1 (3)
	Work percentage (100% = full-time), mean (sd)	74.8 (30.7)
Mental	Anxiety (range 0-21)	4.0 (1.0-6.0)
	Depression (range 0-21)	2.0 (0.0-5.0)
Spiritual	‘Yes’ to 1 or more spiritual need(s), n (%)	57 (85)
	Religious needs, n (%) - strength, mean (SD)	12 (18) - 0.18 (0.53)
	Existential needs, n (%) - strength, mean (SD)	31 (46) - 0.36 (0.45)
	Inner peace needs, n (%) - strength, mean (SD)	54 (80) - 1.03 (0.82)
	Needs for positive confirmation, n (%) - strength, mean (SD)	51 (76) - 0.87 (0.73)
	Need to feel connected with family, n (%) - strength, mean (SD)	40 (60) - 1.25 (1.14)
	Spirituality played a role in coping with Covid-19, n (%)
	Yes	14 (21)
	No	53 (79)
	No answer
Other	Health care consumption, n (%)
	Yes	28 (42)
	General practitioner	15 (22)
	Psychologist	6 (9)
	Social work	5 (8)
	Physiotherapist	2 (3)
	Chaplain	1 (2)
	Pastor / Imam	0
	Other3	5 (5)

All numbers given are the median and interquartile range (IQR), unless otherwise stated.

¹A higher score reflects a better functioning ²Employed family members at 12 months n = 34 ³ Other health care consumption were mentioned for example; home care, osteopath or acupuncturist.

Healthcare consumption

In the six months prior to completing the questionnaire, the majority of ICU-survivors visited one or more healthcare professionals, mainly physiotherapists (70 %) and general practitioners (55 %).

Of the family members, 42 % had visited one or more healthcare professionals, usually their general practitioner (22 %).

Qualitative findings

Themes and subthemes found in the interviews with ICU-survivors and their family members are shown in Table 5 . Several subthemes characterized the interviews, with one overarching theme in the interviews with ICU-survivors and one overarching theme in the interviews with family members.

Table 5.

Qualitative findings of ICU-survivors and family members 12-months post-ICU-discharge.

ICU survivors	Family members
MAIN THEME Returning to normal	MAIN THEME If the patient is well, I am well
SUBTHEMES
Crisis / confrontation with mortality	Fear of no goodbye
Memories	Hope
Reconstruct experience	Own live revolved around relative
Physical recovery first	Reassurance
Returning to previous life (work)	Sharing information
Family and friends	Family and friends
Gratitude	Peace and solitude
Religious faith and being prayed for	Outdoors
Difficulties finding sufficient support	Diary
Independent person	Hospital staff
Positive attitude

ICU-survivors

The overarching theme covering the interviews with the ICU-survivors was ‘returning to normal’. ICU-survivors reported about the changes they experienced, which needs surfaced, and what (spiritual) resources they used to try to return to normal or to cope with the realization that return to normal was not possible. The interaction between the different experiences, needs and resources is described below, based on the subthemes we found (Table 5), which are enclosed in quotation marks.

One of the subthemes was ‘crisis’, because overall, ICU-survivors described their experience as such. Sudden, unexpected and disrupting their life goals and worldview, although not all experiences were negative. For example, one ICU-survivor described a near-death experience, which allowed her to find closure for the death of her husband several years earlier.

Another subtheme was ‘memories’, because amnesia or distorted memories due to delirium, often caused unsettling and insecure feelings. To help them process these feelings in their current life, a few ICU-survivors expressed the desire to go back to the hospital to try and ‘reconstruct their experience’.

Residual physical and cognitive limitations were perceived as distressing, challenging the sense of the self and hindering ‘returning to normal’. After returning home, ICU-survivors mostly focused on ‘physical recovery’, as they felt the desire to ‘return to their previous life’. They considered returning to work as a sign that they had achieved ‘returning to normal’:

‘Yes, I’m trying to go back to work … I started working again as soon as I could. I really enjoy it. Each time I go to work, I make a step towards getting my old life back.’ (ICU-survivor 37).

Nevertheless, they expressed how their goals in life shifted and how things other than work had become more important, such as being with ‘family and friends’. Several ICU-survivors indicated that they had not yet fully processed how the experience affected their present and future lives:

‘After about 6 months, I had a relapse, because then came the psychological part. What has happened to me? When my wife told me she had received several telephone calls from the hospital saying that I might not survive, I really began to realise that I had been out of it, literally and figuratively speaking. It took a lot of effort for me to process this, and I’ve had a lot of support…. At this point I’m still struggling with my future perspective, because I can no longer cognitively do what I used to. So, what am I going to do when I retire?’ (ICU survivor 8).

Another subtheme was ‘gratitude’, because it was addressed in multiple ways. Several ICU-survivors felt the strong need to express their gratitude to the hospital staff. Furthermore, returning home and recovering felt like a second chance for which ICU-survivors felt grateful.

Resources tapped to cope with the experience included instrumental and social support of ‘family and friends’ and ‘religious faith’. Considering the last subtheme, knowing that you are being prayed for, appeared to be an important source of comfort. Some ICU-survivors reported ‘difficulties finding sufficient support’ after hospital discharge:

‘I remember a social worker who came to my hospital bed, only three days after I woke up. Everything was strange and confused and I couldn’t engage with that. I really wanted to go home, so they discharged me rather quickly. But in those early days of the pandemic it was difficult to find aftercare. Finding psychological care was most difficult. When things don’t go well, you need someone outside your family and colleagues to discuss your concerns.’ (ICU-survivor 6).

Some ICU-survivors indicated that it could be helpful to have an ‘independent person’ to discuss the experience with, in addition to conversations with ‘family and friends’. Only one ICU survivor actively sought spiritual support from healthcare chaplains during and after hospitalisation to better understand and process the experience.

Maintaining a ‘positive attitude’ and focussing on good things in life were other coping resources in the process of ‘returning to normal’.

Family members

The main theme in the interviews with family members was ‘if the patient is well, I am well’. Family members indicated in the interviews how they experienced the patients’ critical illness, which needs surfaced and what (spiritual) resources were helpful. The interaction between these is described below, based on the subthemes we found (Table 5), which are enclosed in quotation marks.

One of the subthemes was ‘fear of no goodbye’, because family members highlighted that the worst part of the ICU-admission of their relative was the fear that he or she may die without being able to say goodbye:

‘What if it had gone wrong? We wouldn’t have been able to say goodbye … That would have been terrible.’ (Family member 26).

The subtheme ‘hope’ was connected to this, because during this period, family members struggled to maintain hope for recovery, as they regularly received information from ICU staff that the situation was critical and that there was a real possibility that their relative would not survive.

Another subtheme was ‘own live revolved around relative’. Once the ICU-survivor started to recover, their family members felt less anxious. When the ICU-survivors recovered well, their family members felt closure and returned to their own lives. However, the lives of the family members of ICU-survivors with many residual symptoms still strongly revolved around their relatives’ well-being.

During the hospitalisation period of the ICU-survivors, family members had a strong need for ‘reassurance’ regarding the situation and maintained regular contact with the hospital staff. The received ‘information was shared’ with ‘family and friends’ through email or WhatsApp, as family and friends were the main sources of support:

‘After I’d spoken with the ICU, I would send the children an app about what was discussed. I had contact with the ICU four times a day. That was excellent, really supportive.’ (Family member 38).

At the same time many of the family members felt overwhelmed during this time and expressed the need for ‘peace and solitude’. Most of the family members tended to go hiking or cycling ‘outdoors’ every day during this period to clear their mind and enjoy the beauty of nature:

‘We go hiking a lot. To stay in shape, but also for what is more important, what I call ‘defocussing’. Hiking gives you a feeling of space around you and that provides a lot of peace.’ (Family member 8).

Most family members kept a ‘diary’, in the form of written text, photos or videos, to share with their relatives once they had recovered enough. However, at the time of the interviews, most of the diaries had been looked at only once.

All family members highlighted that they felt strongly reassured by and grateful to the ‘hospital staff’, who have actively kept them informed, asked about their well-being, treated the patient as a person and were always available for them:

‘They saw my father as a person, not as a number … They asked for pictures and information about the family relationship and what father thought was important in life. So even when he was sedated, they could tell him “your daughter called”’. (Family member 23).

Some family members prayed and lit candles for their relatives to find strength and peace. However, most of the coping resources they used, cannot be classified as spiritual.

Discussion

With the COFICS, we aimed to report on the long-term outcomes of COVID-19 ICU survivors and their family members in the physical, social, mental and spiritual domain. The results obtained in this study show that the majority of COVID-19 ICU-survivors experience at least one physical impairment one year after ICU-discharge. In addition, most of the previously employed ICU-survivors have not fully returned to work, whereas most of their family members have. Furthermore, the majority of ICU-survivors as well as their family members reported at least one spiritual need. Moreover, several healthcare professionals were visited by ICU-survivors and their family members.

Although we found that the physical functioning of ICU-survivors increased over time, most of them reported at least one physical impairment 12 months after ICU-discharge, comparable to the results that we found after three and six months (van Veenendaal et al., 2021). Symptoms such as fatigue, weakened condition and pain were the most prominent. A study that reported on the 12-month outcomes of patients after a COVID-19 related hospital admission (Betschart et al., 2021) showed, among other findings, a decrease in health-related QoL after 12 months. They also found slight-to-moderate physical limitations in 29 % of the participants, scored using the novel Post-COVID-19 Functional Status (PCFS) scale (Klok et al., 2020, Machado et al., 2021). In another study (Tessitore et al., 2021), participants reported fatigue (27 %) to be most prominent 12 months after hospital discharge, similar to the participants in our study. ICU-survivors in our study also reported pain to be an important impairment, with the most prominent types of pain being joint pain, muscle pain and nerve pain. Overall, the novel PCFS scale (Klok et al., 2020, Machado et al., 2021) includes pain, depression and anxiety and translates these to a grade of functioning, which may be useful in assessing the impact of pain, depression and anxiety on the daily lives of COVID-19 ICU-survivors. Future research should consider using this instrument to help compare the results.

In our study, both ICU-survivors and their family members described their family functioning as good and reported no or hardly any symptoms of depression or anxiety. These results are different from those obtained with other COVID-19 cohorts (Betschart et al., 2021, Heesakkers et al., 2022a, Heesakkers et al., 2022b, Tessitore et al., 2021). Although our previous findings (van Veenendaal et al., 2021) showed that 63 % of family members were psychologically affected by the physical distancing required during the first COVID-19 wave, it is likely that the exceptional circumstances during the first wave influenced the commitment of healthcare professionals and affected the experience of family members (Liang et al., 2021).

Overall, two-thirds of the ICU-survivors in our study reported a change of occupation, often in combination with a reduced work percentage. In a systematic review evaluating return to work in previously employed ICU-survivors (Kamdar et al., 2020), delayed return to work and unemployment were found to be common and persistent issues. Several studies in this review found that unemployment is associated with depression, anxiety and poor QoL. Improved mental health and QoL were found after returning to work. We found similar results in the interviews conducted with ICU-survivors. They particularly experienced returning to work as a sign of recovery. Such coherence between work and living a meaningful life has been described in several studies (Duffy and Sedlacek, 2010, Judge and Watanabe, 1993, Ward and King, 2017). However, ICU-survivors in our study also indicated that work is no longer their main priority in life and that their relationships with friends and family have become more important. Although research focussing on returning to work in family members of ICU-survivors is rare, this topic has been mentioned in some studies on PICS-F (van Beusekom et al., 2016). In the interviews we conducted, several family members mentioned that their return to work or other activities was conditional upon the health and well-being of the patient. Notably, most of the family members had returned to such activities at the time of the interview. Barriers obstructing returning to work were studied in patients after elective coronary bypass surgery (Blokzijl et al., 2021) and identified as personal related, healthcare related, work related and law and regulation related. If patients undergoing elective surgery experience barriers in this domain, it is likely that patients with acute conditions and their family members meet even more difficulties. Hence, healthcare professionals throughout the care chain should add the notion of returning to work to their follow-up care. Further research is also required to gain more insights into the origins of problems and the necessities to support and facilitate returning to work.

In our study, only a few ICU-survivors and their family members indicated that spirituality has played a role in coping with COVID-19. However, most of them reported at least one spiritual need on the SpNQ. The participants may have associated the term ‘spirituality’ with religious faith and religious activities, such as prayer and lighting candles, but not with experiences of inner peace, connection to others and receiving confirmation from others. This implies that using the word ‘spirituality’ with patients and family members may not be sufficient to meet the needs they might have in this dimension. This finding has also been highlighted in other studies (Garssen et al., 2015, Uwland-Sikkema et al., 2018). Overall, this knowledge can influence daily patient care and how existing spiritual needs are identified (NANDA, 2021). In the Dutch context, the term ‘spirituality’ may not be unambiguous enough, and it may be useful to refer to more specific items, such as feelings, thoughts, behaviours and forms of support, instead of using the term ‘spirituality’ in general. Future research on this topic should also use this knowledge.

Although the ICU-survivors and their family members visited healthcare professionals in the six months prior to completing the questionnaire, they also reported that it was difficult to find sufficient support. In addition, although most of the needs seem to have been met in the year following ICU-discharge, many of the interviewed patients indicated that they had not fully processed the experience. They highlighted that discussing their experience with an independent person would be of additional value. Whereas in another study reading the diary with experiences of the ICU admission was perceived as positive and reread by the ICU-survivor (Jones et al., 2010) our findings show the diary was read only once. Perhaps this is because the diaries were written by their family members instead of the healthcare staff and were therefor seen as less important. Family members described how different the ICU experience and the process of recovery have been for them compared to their relative. For the patient, the coping process started once they began to recover, whereas the coping process of the family members ended at that point. Furthermore, since the ICU-survivors had been sedated for a long time, while their family members could remember the entire period, the coping processes of the ICU-survivors and their family members did not harmonise. Similar findings are described in other studies (Fumis et al., 2015). Currently, both ICU-survivors and their family members seem to have found ways to receive support, though not always satisfactory.

The results obtained herein show the importance of follow-up care focussing on more than just the physical domain. Facilitating an open conversation between families about the experience (Broekema et al., 2021, Naef et al., 2020), providing guidance and support in the process of returning to work or a similar meaningful occupation (Duffy and Sedlacek, 2010, Judge and Watanabe, 1993, Ward and King, 2017) and identifying other (spiritual) needs may be just as important.

Strengths and limitations

One of the strengths of this study is that we used a mixed-methods design to assess spiritual outcomes, which allowed us to obtain more in-depth results on this rarely researched topic for ICU-survivors and their family members. Another strength of this study is that we used an inter-disciplinary approach, which helped provide a more holistic view. Moreover, nurses, doctors, healthcare chaplains and students worked together on this project. In addition, the SpNQ was translated thoroughly and precisely, which facilitates its use in other Dutch studies. Finally, this study involved long-term follow-up with a satisfactory response rate.

One of the limitations of this study is its single-centre design with a relatively small sample size. Another limitation is the fact that the interviews were conducted remotely. Although remote interviews using digital tools have become increasingly common, this method may cause feelings of insecurity for the interviewed participant. Finally, it is important to highlight that our study focuses on ICU-survivors and their family members during the first COVID-19 wave. Hence, it is likely that no suitable standardised care was available.

Conclusion

The results obtained in this study show that COVID-19 ICU-survivors and their family members evaluate their health status positively-one year after being discharged from the ICU. In addition, ICU survivors experience minor physical impairments and express the need for follow-up care in aspects such as the social and spiritual domain. Finally, the well-being of the family members of ICU-survivors is strongly influenced by the health status of the patient, and most of them experience feelings of closure after one year.

Ethical statement

The COFICS is a sub-study of a larger cohort study called the Follow-up Intensive Care Studies (FICS). The local medical ethical committee approved the protocol for the FICS (METc 2018/627) and waived the need for formal evaluation in accordance with the Dutch Medical Research Involving Human Subjects Act. All participants provided written consent by returning the completed follow-up questionnaire. Additional consent for the interviews was obtained via written informed consent and a telephone call. All participants were allowed to withdraw from the study at any time without providing a reason. This study was performed in accordance with the principles of the Declaration of Helsinki.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Supplementary data

The following are the Supplementary data to this article: