The intensive care unit (ICU) is distinguished from other hospital units by its complex technological arsenal, essential in caring for critically ill patients (Edeer et al, 2020). Admission to the ICU generally occurs abruptly, with insufficient time for family reorganisation, which contributes to a feeling of helplessness and the emergence of different types of needs (Machado and Brusamarello, 2020).
Understanding that the family is a critical element in this context is fundamental. The family should not be dissociated from the patient but rather seen as unique in care strategies, because support offered to family members positively affects the patient. Treatment provided to patients in the ICU commonly overlooks family members who are experiencing stress related to the uncertainty of the disease, injury and trauma, the fear of loss, and restrictions imposed on visits, all of which were nearly wholly interrupted during the COVID-19 pandemic (Souza et al, 2022a; Tabah et al, 2022; Gurbuz et al, 2023).
Although justified by COVID-19 and the excess of work related to the pandemic, restrictions on the physical presence of family members of hospitalised patients contributed to the dehumanisation of clinical care and became a source of worry, anxiety, and sadness, along with the emergence of previously non-existent needs (Hugelius et al, 2021). Studies have shown that the experience of having a loved one in the ICU can trigger a set of psychological problems with repercussions for the physical and mental wellbeing of the family, with a greater likelihood of developing symptoms of anxiety, depression, and even post-traumatic stress, due to family members having to cope with the severity of the patient's condition as well as the abrupt changes to their routines (Fonseca et al, 2019; Białek and Sadowski, 2021).
These symptoms, which are linked to the intrinsic aspects of the individual, the ICU environment, and family dynamics, are proportional to the length of stay of the loved one and tend to be accentuated if the loved one dies. A study conducted by Cattelan et al (2021) identified that reference persons designated to represent the hospitalised patient showed a high prevalence of anxiety and depression symptoms within 72 hours following admission.
Despite the relevance of this issue, currently published studies have under-investigated family members' needs, stressors, and depressive symptoms. Most investigations address ICU visits (Eugênio et al, 2022; Hugelius et al, 2021), family members' satisfaction (Midega et al, 2019), communication with the family during the pandemic (Tabah et al, 2022; De Cezar et al, 2023), the reception of patients and family members in the ICU (Maestri et al, 2012), and level of comfort (Machado et al, 2020; Meneguin et al, 2020). A literature search found no pertinent studies on this issue in relation to the COVID-19 pandemic.
The literature review analysed studies on symptoms of anxiety and depression in the family in the context of the ICU (Maruiti et al, 2008; Fumis and Deheinzelin, 2009), family needs (Pardavila Belio and Vivar, 2012), as well as depression, anxiety, and quality of life in family members (Norup et al, 2012). However, no studies were found that analysed the association between needs/stressors and symptoms of anxiety/depression. The fact that previous studies have only addressed these issues separately constitutes a knowledge gap.
Therefore, the present study aimed to investigate needs/stressors among family members of patients in the ICU and their associations with symptoms of anxiety/depression during the COVID-19 pandemic.
Methods
Study design
A descriptive, exploratory, cross-sectional study was conducted with a quantitative approach.
Study setting
This study was developed with family members of patients in the general ICU of a medium-sized public hospital in São Paulo state from January 2020 to August 2022.
Study population
The eligibility criteria were family members of patients who had been in the ICU for between 48 hours and 7 days after admission, of both sexes, aged 18 years or older, with availability and self-declared sufficient emotional capacity to answer the data collection instruments and provide informed consent to participate in the study. Family members who still needed to finish the interviews at the 7-day cutoff were excluded. Only interviews that fully completed the questionnaire sets without interruption were counted.
In this study, ‘family member’ was defined as a person with a close relationship with the patient with or without a blood relationship. Up to two family members per patient could participate. The choice of the period for interview between 48 hours and 7 days after admission was based on the relevance of identifying family needs in the first week and after the first days of hospitalisation in the ICU.
To determine the population's representativeness, the Freeman formula (Katz, 2011) was used for multivariate analyses: n=10 x (k+1), where k is the number of variables in the family characterisation instrument. Here, k=13, therefore, at least 140 family members needed to answer.
Data collection
Sociodemographic data of the family members were collected individually in person in a private area of the hospital. Data were collected in an interview format, administrating the Critical Care Family Needs Inventory (CCFNI) and Hospital Anxiety and Depression Scale (HADS).
The Portuguese version of the CCFNI has 43 items distributed across five dimensions: support, Comfort, Information, Proximity, and Assurance. The items are scored on a four-point Likert scale, ranging from ‘not important/unsatisfied’ to ‘very important/fully satisfied’ (Morgon and Guirardello, 2004).
HADS was used to screen for symptoms of anxiety and depression. Zigmond developed this scale (Zigmond and Snaith, 1983), its Portuguese-language version having been validated by Botega et al (1995). HADS has 14 multiple-choice questions divided equally between two subscales: anxiety and depression. The total score for each subscale ranges from 0 to 21, with a score of 0 to 7 indicating the improbable presence of anxious or depressive symptoms, a score of 8 to 11 indicating the possible presence of anxious or depressive symptoms, and a score of 12 to 21 indicating the probable presence of anxious or depressive symptoms (Botega et al, 1995).
Sociodemographic and clinical data on the patients were collected from the patient records. Information from the records was used to classify the severity of the patient's condition as stable, stable severe, unstable severe and critical. All eligible and invited family members agreed to participate in the study.
Statistical analysis
All variables were first analysed descriptively. The Shapiro-Wilk test was used to determine the normality of the data. The CCFNI and HADS scores were tested for associations with the sociodemographic data of the family members and the severity of the patient's condition using a generalised linear model (Hout et al, 2013). The authors chose to use the Generalized Linear Model (GLM) and Spearman's correlation coefficient, as the data analysed did not meet the assumptions of normality (Schober et al, 2018). This regression model relates independent variables to a dependent variable and offers flexibility to deal with various relationships between variables (Turkman and Silva, 2000).
The reliability of the questionnaires was assessed using Cronbach's alpha, with coefficients higher than 0.70 considered acceptable (Taber, 2018). Spearman's correlation coefficients (Spearman's rho) were calculated between the scores of the two instruments (CCFNI – Importance/Satisfaction and HADS – Anxiety/Depression) and interpreted as follows: 0.40=weak correlation; 0.40 to 0.60=moderate correlation; and >0.60=strong correlation (Souza et al, 2017). All analyses were performed using IBM SPSS v22, with the significance level at 5% (P<0.05).
To ensure the study's quality, the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE statement) (Malta et al, 2010) checklist was followed.
Ethical considerations
The Human Research Ethics Committee of the Botucatu School of Medicine, State University of São Paolo, approved this study (protocol number 3.744.832). All patients were informed of the benefits and risks related to the study and provided their written informed consent for the research and the publication of results.
Results
A total of 368 individuals met the eligibility criteria, 28 of whom were excluded because they did not finish completing the assessment instruments. Thus, the final sample comprised 340 family members of 224 patients. Mean patient age was 61.3 years (SD±16.3 years) and men accounted for 58.5% of the sample (n=131). Respiratory diseases constituted the primary medical diagnosis (n=156; 69.6%), and the most prevalent clinical condition was ‘stable severe’ (n=169; 75.4%).
Among family members, mean age was 47 (SD=13.7) years. The majority were women (n=237; 69.7%), they had a spouse/partner (n=257, 75.6%), a high school level education (n=149; 43.8%), and they were Catholics (n=187; 55%) (Table 1). Most were employed (n=193; 56.8%), with a monthly income equal to or up to three times the minimum wage (n=189; 55.6%). The majority of family members were directly related to the patient (n=176; 51.8%), but they did not reside with them (n=206; 60.6%), and had a history of having a family member in the ICU (n=209; 61.5%).
| Variables | n (%) |
|---|---|
| Age (years) | |
| Mean (±SD) | 47.0 (±13.7) |
| Minimum–maximum range | 18–88 |
| Sex | |
| Female | 237 (69.7) |
| Male | 103 (30.3) |
| Marital status | |
| With spouse/partner | 257 (75.6) |
| Without spouse/partner | 83 (24.4) |
| Schooling | |
| Primary school | 95 (28.0) |
| High school | 149 (43.8) |
| Higher education | 79 (23.2) |
| Postgraduate degree | 17 (5.0) |
| Religion | |
| Catholic | 187 (55.0) |
| Non-Catholic | 153 (45.0) |
| Employment status | |
| Retired | 48 (14.0) |
| Unemployed | 91 (26.8) |
| Employed | 193 (56.8) |
| Student | 8 (2.4) |
| Degree of relatedness | |
| Direct | 176 (51.8) |
| Indirect | 164 (48.2) |
| Resides with patient | |
| Yes | 134 (39.4) |
| No | 206 (60.6) |
| Past history of loved one in ICU | |
| Yes | 209 (61.5) |
| No | 131 (38.5) |
| Income (R$)* | |
| Mean | 3823.51 |
| Minimum–maximum range | 500.00–15000.00 |
| Up to monthly minimum wage | 30 (8.8) |
| 1–3 times monthly minimum wage | 189 (55.6) |
| 3–5 times monthly minimum wage | 63 (18.5) |
| More than 5 times monthly minimum wage | 46 (13.5) |
| Not declared | 12 (3.6) |
ICU=Intensive care unit
Table 2 displays the CCFNI scores; the family members attributed high importance to needs (median=172). However, not all needs were satisfied (median=116). In the data related to HADS (Table 3), probable symptoms of anxiety (n=230; 67.7%) and depression (n=248; 72.9%) predominated.
| Dimensions of CCFNI | Importance | Satisfaction | ||||
|---|---|---|---|---|---|---|
| Median | p25–p75 | IQR | Median | p25–p75 | IQR | |
| Assurance | 28 | 28–28 | 0 | 21 | 18–21 | 3 |
| Proximity | 36 | 36–36 | 0 | 22 | 21–25 | 4 |
| Information | 32 | 32–32 | 0 | 22 | 20–24 | 4 |
| Comfort | 24 | 24–24 | 0 | 17 | 16–19 | 3 |
| Support | 52 | 52–52 | 0 | 34 | 32–38 | 6 |
| Total | 172 | 172–172 | 0 | 116 | 107–127 | 20 |
p25–p75=1st quartile to 3rd quartile
CCFNI=Critical Care Family Needs Inventory, ICU=intensive care unit, IQR=interquartile range
| HADS domain | Improbable | Possible | Probable | Median | p25–p75 | IQR | |||
|---|---|---|---|---|---|---|---|---|---|
| n | % | n | % | n | % | ||||
| Anxiety | 48 | 14.1 | 62 | 18.2 | 230 | 67.7 | 14 | 10–16 | 6 |
| Depression | 43 | 12.7 | 49 | 14.4 | 248 | 72.9 | 15 | 11–17 | 6 |
HADS scoring: (0–7) improbable, (8–11) possible, (12–21) probable
p25–p75=1st quartile to 3rd quartile
CCFNI=Critical Care Family Needs Inventory, HADS=Hospital Anxiety and Depression Scale, ICU=intensive care unit, IQR=interquartile range
In the analysis of the reliability of the instruments, Cronbach's alpha was 0.95 for CCFNI, 0.97 for CCFNI Importance, 0.96 for CCFNI Satisfaction, 0.95 for HADS, and 0.91 for both HADS Anxiety and HADS Depression.
Table 4 displays the correlations between the dependent variables of CCFNI (Importance/Satisfaction) and HADS (Anxiety/Depression). A strong correlation was found between HADS anxiety and depression (rho>0.60), and moderate inversely proportional correlations were found between CCFNI satisfaction scores and both HADS anxiety and depression scores (rho=0.40-0.60).
| Correlation matrix | CCFNI: rho (P value) | HADS: rho (P value) | ||
|---|---|---|---|---|
| Importance | Satisfaction | Anxiety | Depression | |
| CCFNI Importance | - | |||
| CCFNI Satisfaction | -0.112 (0.039) | - | ||
| HADS Anxiety | 0.160 (0.003) | -0.479 (<0.001) | - | |
| HADS Depression | 0.226 (<0.001) | -0.540 (<0.001) | 0.858 (<0.001) | - |
CCFNI=Critical Care Family Needs Inventory, HADS=Hospital Anxiety and Depression Scale
Rho=Spearman's correlation. Correlation scale: Rho <0.40=weak; 0.40–0.60=moderate; >0.60=strong
Table 5 displays the results of the generalised linear model of the sociodemographic variables and CCFNI and HADS scores. A positive association was found between CCFNI Importance/Satisfaction and age (P<0.001), marital status (P<0.001), education level (P<0.001), Catholic religion (Importance P=0.014; Satisfaction P=0.008), and a monthly income of more than two times the monthly minimum wage (P<0.001). Higher importance and satisfaction scores were also associated with a history of previously having had a loved one in the ICU (Importance P=0.018; Satisfaction P=0.04). There was a negative association between importance and employment status (P=0.009). On the other hand, HADS Anxiety/Depression was positively associated with age (Anxiety P=0.005; Depression P<0.001), the Catholic religion (P=0.037), residing with the patient (Anxiety P=0.001; Depression P=0.004), and the CCFNI Importance score (P<0.001). Negative associations were found between HADS scores, being female (Anxiety P=0.026; Depression P=0.038) and having a direct relation to the patient (Anxiety P=0.004; Depression P=0.013).
| Variables | CCFNI | HADS | ||||||
|---|---|---|---|---|---|---|---|---|
| Importance | Satisfaction | Anxiety | Depression | |||||
| ß coef | P | ß coef | P | ß coef | P | ß coef | P | |
| Sex (ref. female) | 0.016 | 0.157 | -0.005 | 0.745 | -0.043 | 0.026 | -0.033 | 0.038 |
| Age | 0.258 | <0.001 | 0.398 | <0.001 | 0.169 | 0.005 | 0.199 | <0.001 |
| Relatedness (ref. direct) | 0.011 | 0.420 | 0.006 | 0.742 | -0.066 | 0.004 | -0.048 | 0.013 |
| Marital status (ref. w/partner) | 0.038 | <0.001 | 0.055 | <0.001 | 0.013 | 0.475 | 0.013 | 0.402 |
| Schooling (ref. higher education) | 0.077 | <0.001 | 0.093 | <0.001 | -0.065 | 0.041 | -0.013 | 0.637 |
| Religion (ref. Catholic) | 0.030 | 0.014 | 0.044 | 0.008 | 0.043 | 0.037 | 0.036 | 0.037 |
| Employment status (ref. employed) | -0.036 | 0.009 | -0.036 | 0.052 | 0.026 | 0.261 | 0.030 | 0.131 |
| Resides with patient (ref. no) | 0.000 | 0.976 | 0.007 | 0.691 | 0.066 | 0.001 | 0.049 | 0.004 |
| Past history of loved one in ICU (ref. no) | 0.050 | 0.018 | 0.059 | 0.040 | 0.018 | 0.622 | 0.026 | 0.389 |
| Income > 2 X MMW (ref. up to MMW) | 0.367 | <0.001 | 0.488 | <0.001 | 0.035 | 0.539 | 0.038 | 0.429 |
| Severity (ref. stable severe) | 0.010 | 0.362 | 0.010 | 0.486 | 0.007 | 0.713 | -0.003 | 0.839 |
| HADS Anxiety | 0.107 | 0.065 | 0.199 | 0.012 | - | - | - | - |
| HADS Depression | 0.137 | 0.026 | -0.258 | 0.002 | - | - | - | - |
| CCFNI Importance | - | - | - | - | 1.915 | <0.001 | 2.004 | <0.001 |
| CCFNI Satisfaction | - | - | - | - | -1.164 | <0.001 | -1.317 | <0.001 |
ß coef=beta coefficient, CCFNI=Critical Care Family Needs Inventory, HADS=Hospital Anxiety and Depression Scale, ICU=intensive care unit, MMW=monthly minimum wage, Ref:-Reference framework
P values in bold meet the level of significance (P<0.05)
Discussion
The family is an essential social system and a source of social and psychological support for its members. One of the changes that can negatively affect the family and cause disorder in the family structure is the admission of one of its members to the ICU (Souza et al, 2022b).
In the present study, the Comfort and Assurance dimensions of the CCFNI received the lowest satisfaction scores, especially regarding prospects of improvement and infrastructure. The study period coincided with the COVID-19 pandemic, which may have influenced the results due to the tension and uncertainty that the world was experiencing.
The present results agree with data from a previous cross-sectional study conducted with 100 family members of patients. In this study, the Comfort dimension received the lowest satisfaction score, especially regarding the physical environment and feeling accepted by hospital staff (Coelho et al, 2022). Other authors found a negative association between the need for comfort, visiting hours and infrastructure (Kang et al, 2020). A study carried out in a public hospital in Malaysia showed that family members expressed the need for a more comfortable environment (Leong et al, 2023). Another study developed in Pakistan showed that participants needed more support and comfort (Khalil and Gul, 2021).
A welcoming environment, a private room to receive information, and individualised attention could diminish the dissatisfaction of family members. A qualitative study conducted with 92 family members in southern Brazil had similar findings, with dissatisfaction related to the inadequate infrastructure of the ICU, with no place for communication with family members (De Cezar et al, 2023).
The present study revealed a predominance of ‘probable’ symptoms of anxiety and depression among the family members. This result is in agreement with data described in previous studies that reported a higher incidence of depression (Souza et al, 2017, Coelho et al, 2022; De Cezar et al, 2023). Only one study found more symptoms of anxiety than depression (Fonseca et al, 2019). Family members of patients in the ICU tend to develop symptoms of anxiety, which are aggravated by any deterioration in the patient's condition, especially when their needs are not being taken into account (Freitas et al, 2007). A study conducted in 2022 showed that the hospitalisation of a relative in the ICU increased the psychological burden of family members (Souza et al, 2022b). However, the percentage of family members who reported having previous experiences with the hospitalisation of a loved one in the ICU was high, probably because this hospital is a referral centre and the only one in this region of the state of SP; data collection during the COVID-19 pandemic will undoubtedly have influenced the results, because this was a period of great uncertainty and high mortality.
Analysis of the dependent variables (CCFNI and HADS) revealed a robust and significant correlation between Anxiety and Depression and moderate inversely proportional correlations between CCFNI Satisfaction and both Anxiety and Depression, which is compatible with data described in previous studies (Eugênio et al, 2022; Kang et al, 2020). However, the few studies involving the concomitant use of these two instruments did not perform correlation analyses (Midega et al, 2019).
To address the second specific objective of the present study, a generalised linear model was used, to consider the sociodemographic variables and the CCFNI and HADS scores. CCFNI Importance/Satisfaction was positively associated with age, marital status, schooling, religion, and a monthly income of more than two times the monthly minimum wage, which agrees with data described by Coelho et al (2022). The scores were also associated with a history of having a loved one in the ICU, similar to data described in previous studies (Bolosi et al, 2018; Meneguin et al, 2020; Eugênio et al, 2022).
In this study, family members with a higher education level attributed greater importance to their needs and also had higher levels of satisfaction. Family members with a higher level of schooling can better seek information on the condition, diagnosis and management of patients in the ICU. They are also better able to understand such information, which may contribute to diminishing anxiety levels among family members and improve satisfaction levels (Souza et al, 2022b).
The negative association between importance and employment status may be attributed to family members who continued working during the pandemic. These family members may have had other priorities beyond the hospitalisation of the loved one in the ICU and possibly less time to spend with the patient.
Positive associations were found between HADS (Anxiety/Depression) and age, being a Catholic, residing with the patient, and the CCFNI Importance score. Previous studies have reported that the prevalence of depression is lower among family members who do not reside with the patient (Fonseca et al, 2019; Souza et al, 2022b), which differ from the results of the present investigation, in which not living with the patient contributed to higher Anxiety/Depression scores.
Negative associations were found between HADS Anxiety/Depression and the female sex and being directly related to the patient. In a study conducted with 980 family members, depression was more prevalent in women, individuals younger than 40 years of age, and the presence of psychological problems before the hospitalisation (Souza et al, 2022b).
The negative association between the HADS anxiety score and higher education is in agreement with data described in the study conducted by Bolosi et al (2018), in which anxiety was lower in the first week of hospitalisation among those family members who had a higher level of schooling. Moreover, the negative association between CCFNI Satisfaction score and HADS Anxiety/Depression scores underlines the importance of including family members in the care process in the ICU, by giving them greater attention and support, and making them feel more accepted by staff.
Limitations and strengths
The limitations of this study concern the period in which it was conducted (during the COVID-19 pandemic) and the fact that it was developed at a single centre with local particularities. Another limitation was the impossibility of administering the data collection instruments at other times to better portray the experiences and difficulties of the family members during this period.
Considering the scarcity of studies addressing the needs of family members and anxiety/depression, the authors consider that these results can assist in guiding nursing interventions directed at family members based on the associations found between different variables that influenced these results, so that families can be involved in the care process with staff giving them more attention and support, and making them feel more accepted.
Conclusions
Regarding the total CCFNI score, family members considered their needs to be very important, but not all were fully satisfied. The most critical need was for support from staff. In addition, whether family members felt their needs were met increased with age, and this was higher among those with a higher education level, those with a spouse or partner, Catholics, individuals with a history of having a loved one in the ICU, and those with a higher income.
The results of the present study indicate that participants experienced probable symptoms of anxiety and depression. These symptoms were lower in women, individuals with a direct relationship to the patient, and in those who reported that their needs had been met. A significant correlation was found between CCFNI and HADS.
Given the scarcity of studies addressing the needs of family members regarding anxiety and depression, the authors think these results can guide nursing proposals aimed at family members. This guidance is based on the associations found between different variables that influenced the results of this work, facilitating greater involvement of families in the care process, with staff giving them more attention and support, and making them feel more accepted by staff.