Introduction
Relatives in intensive care units (ICU) are important partners in the decision-making underlying the treatment of critically ill patients. They can be a significant resource by providing information, and in the care and rehabilitation of patients [
1,
2], but the critical illness of a close relative negatively affects them too [
3]. Many ICU patients have few or no memories of their ICU stay, but their relatives often experience sleep problems, anxiety and feelings of helplessness. In a recent study, relatives suggested that ‘more information’ [
4] would be helpful to improve their poor sleep quality.
Currently, there often is a substantial information asymmetry between health professionals and relatives/patients. The health literacy of the relatives is undoubtedly an important co-factor in the communication process [
5,
6], as 50% of relatives fail to understand healthcare staff communication [
7]. This could have an impact on relatives as well as on the rehabilitation of the patients [
8] and may lead to symptoms of anxiety, stress, depression, and sleep problems [
4,
9‐
12]. Relatives often develop family intensive care unit syndrome (FICUS) [
13], defined as maladaptive reasoning, high-intensity emotions, sleep deprivation, personal and family conflicts, cognitive bias and anticipatory grief [
13]. Most family members report some levels of anxiety, depression and stress [
11,
14]. Importantly, an association between a perceived lack of information and symptoms of post-traumatic stress disorder (PTSD) has been reported [
4,
15]. It is therefore important to provide appropriate and sufficient information to families of ICU patients [
16].
A recent Italian study demonstrated that structured information (verbally, in writing and through online media) could reduce stress and post-traumatic stress [
17]. Al-Mutair et al. concluded in a literature review that family members ranked the need for information as the most important need second only to insurance [
18]; however, detailed information on the subjective importance of different topics is largely absent in the literature, especially in German speaking countries. It was hypothesized that variations in subjective importance regarding different topics exist. Furthermore, differences between relatives and medical professionals were expected in their respective evaluation of the importance of topics. This survey aimed to clarify which topics are subjectively most important to relatives of critically ill patients and to compare the subjective perceptions of relatives with those of ICU professionals.
Materials and methods
The study was approved by the Medical University of Graz ethics committee (EK 27-317 ex 14/15).
The survey
The survey was based on the survey by Peigne et al. 2011 [
19], conducted in 14 ICUs across France, which aimed to identify important questions asked by family members of critically ill patients. In this survey. 9 topics and 42 subtopics were included. The survey in this study included 42 questions on specific topics and assessed sociodemographic baseline information. A short explanation was included alongside each question for better understanding. For instance, the topic ‘my participation’ was explained as ‘what can I do to help my relative,’ while the topic ‘crisis’ was described as ‘deterioration of vital signs or psychological symptoms’. We used a 5-point scale from 1 not important, to 5 very important and with the option of ‘not relevant’. After a review process with medical professionals, the survey was pretested with 10 individuals without any medical background. A detailed description of the survey is presented in Table
1, and the original version of the survey can be found in the electronic supplementary material. The survey was distributed in summer 2015 over a period of 3 months and the aim was to include as many respondents as possible in this time frame.
Table 1
Detailed description of the survey categories
1 | Sociodemographic data | The questions referred to the sex, age, relationship to the critically ill patient, previous experience with the ICU, living together in the household, educationa |
2 | Diagnosis | Neurological status, fever, diseases, appearance, vital signs, examinationsb |
3 | Treatment and Therapy | Operations, treatment and therapy, weaning off the respirator, respirator, medicationb |
4 | Prognosis | Duration of illness, death and grief, probabilities and assumptions, rights to information and information, crisesb |
5 | Comfort | Decrease mental stress, well-being, physical pain, nutrition, sleepb |
6 | Interaction | Speaking, responding, touching, listening, my participationb |
7 | Communication | Dates in the intensive care unit, information received, news, team, telephoneb |
8 | Family/relatives | Visiting times, contamination, family conference, stress and worry, religionb |
9 | Post-ICU | Length of stay, relapse, sequelae, relocation, remindersb |
10 | End of life | Futility, death and griefb |
12 | Internet use | Use of the internet to learn about health issuesa |
13 | Open space for extra questions | Free space for open/new questions, topic forgotten, a messagec |
The population
In total, four groups answered the survey: relatives of ICU patients, medical professionals including ICU physicians, ICU nurses at the Medical University Graz, Austria and a Facebook© group with a focus on intensive care professionals.
Relatives
In this study three ICUs at the University Hospital of Graz (a large tertiary care facility in Styria, the south-eastern region of Austria) participated. The study included a general ICU with 11 beds, a cardiac ICU with 9 beds and a neurology ICU with 8 beds. To be included, relatives of critically ill patients had to be aged between 18 and 80 years and living in Styria. Only the relatives of patients who were predicted by the attending physician to stay in the ICU for at least 72 h were included. Exclusion criteria were a lack of proficient German and a do not resuscitate order on the patient. The paper-based survey was handed out to the relatives by the treating consultant at their second or third meeting. A neutral envelope was given to the relatives to allow them to return the survey anonymously after completion.
Medical professionals
The three medical professional groups completed the survey online using the free version of the platform “SurveyMonkey” (
www.surveymonkey.de). The ICU physicians received an email invitation with a link and a request to send the email to other ICU physicians. All ICU nurses from the Medical University of Graz received an email invitation with a link. The third group of medical professionals were members of two ICU-related Facebook© groups called
Intensivpflege und Anästhesiepflege—Community & Forum 05/2012 and,
Intensivpflege—24/7. Both groups are closed membership, i. e. require an approved membership request to join. The invitation to complete the survey alongside with the link was posted into these two groups.
Statistical analysis
Survey data were analyzed using descriptive statistics for the total cohort and for each of the four groups. Descriptive data analysis was performed with Microsoft Excel 2013 (Microsoft Corporation, Redmond, WA, USA). A Mann-Whitney U‑test was performed with SPSS (IBM SPSS Statistics 24© IBM Corp. 1989, 2016, Armonk, NY, USA). An alpha level adjustment for multiple comparisons according to C.E. Bonferroni was done. For significant differences the p value must be <0.016.
Results
In total, 336 persons participated. The survey was answered by 26 relatives (response rate 50%), 28 physicians (response rate not calculable) 202 nurses (response rate 52%) and 80 ICU professionals at the Facebook© group (response rate not calculable). For each question 80% (minimum) participation was reached. A detailed description of participating relatives is presented in Table
2. The participating medical professionals are described in Table
3.
Table 2
Baseline characteristics of the relatives of ICU patients
Gender | Female | 61.5 |
Male | 38.5 |
Country of origin | Austria | 100 |
Age (years) | 18–40 | 23.0 |
41–60 | 50.0 |
61–80 | 19.0 |
Unknown | 8.0a |
Relationship to the patienta | Wife/husband | 38.5 |
Sister/brother | 4.0 |
Parents | 19.0 |
Son/daughter | 15.0 |
Other | 19.5 |
Unknown | 4.0a |
ICU experience | Yes | 54.0 |
No | 35.0 |
Unknown | 8.0a |
Living in the same household | Yes | 50.0 |
No | 42.0 |
Unknown | 8.0a |
Level of education | Primary school/compulsory school | 11.5 |
Graduated secondary school/apprenticeship | 61.5 |
Apprenticeship with management qualification/college/university | 19.0 |
Unknown | 8.0a |
Internet use for information about current ICU stay of a relative | Yes | 38.0 |
No | 54.0 |
Unknown | 8.0a |
Table 3
Baseline characteristics of the ICU medical professionals
Gender (in %)
|
Female | 78.7 | 36.0 | 72.5 |
Male | 21.3 | 64.0 | 27.5 |
Age in years
|
Mean | 34.8 | 41.2 | 35.6 |
Work experience in years
|
Mean | 12.7 | 13.8 | 11.8 |
Country of origin in percentage terms (in %)
|
Austria | 100 | 96.4 | 10.0 |
Germany | 0 | 3.6 | 88.7 |
Switzerland | 0 | 0 | 1.3 |
For relatives, the five most important topics (ranked by mean) were ‘recent events (crisis)’ (e. g. acute deterioration of physical indicators, such as fever or blood pressure), ‘my participation’ (e. g. what can I do to help), ‘contamination in the hospital’ (e. g. what is important for me to know about hand hygiene or isolation), ‘physical pain’ (e. g. does the patient have pain and what will be done to prevent/treat pain) and ‘what happens next’ (e. g. discharge from ICU).
The topics with the lowest ranking were ‘religion’ (e. g. religious support), ‘memory’ (e. g. diary keeping at ICU) and ‘ICU news’ (e. g. news about the specific ICU). A detailed description of the relatives’ ratings is presented in Table
4.
Table 4
Results of ratings given by relatives to each of the 42 questions
1 | Crisis | 4.90 | 22 | Disease | 4.43 |
2 | My participation | 4.84 | 23 | Futility | 4.42 |
3 | Contamination | 4.71 | 24 | Talking | 4.40 |
4 | Physical pain | 4.70 | 25 | What treatment? | 4.39 |
5 | Probability | 4.67 | 26 | Weaning | 4.38 |
6 | Appointments | 4.65 | 27 | Length of stay | 4.38 |
7 | Relapse | 4.65 | 28 | Investigations | 4.35 |
8 | Touching | 4.64 | 29 | Fever | 4.32 |
9 | Answering | 4.62 | 30 | Food | 4.25 |
10 | Telephone | 4.62 | 31 | Supplying comfort items | 4.19 |
11 | Transfer | 4.62 | 32 | Death | 4.15 |
12 | Hearing | 4.60 | 33 | Appearance | 4.14 |
13 | Medication | 4.59 | 34 | Tubes and machines | 4.09 |
14 | Recovery | 4.57 | 35 | Decision-making | 4.05 |
15 | Visits | 4.55 | 36 | Information and rights to information | 4.00 |
16 | Vital signs | 4.50 | 37 | Sleep | 4.00 |
17 | Staff members | 4.50 | 38 | Relatives’ distress | 3.80 |
18 | Sequelae | 4.50 | 39 | Being informed | 3.76 |
19 | Neurologic status | 4.48 | 40 | News | 3.67 |
20 | Psychological distress | 4.48 | 41 | Memory | 3.37 |
21 | Surgery | 4.47 | 42 | Religion | 3.15 |
The ICU physicians considered the five most important topics for relatives to be ‘telephone’ (e. g. where and when can I call), ‘neurological status’ (e. g. consciousness, visual capacity), ‘hearing’ (e. g. can my relative hear me), ‘futility’ (e. g. death and grief) and ‘visiting’ (e. g. who can visit at which times). The ICU nurses rated ‘visiting’, ‘telephone’, ‘hearing/neurological status’ (equal rates), ‘touching’ (can I touch my relative)/‘physical pain’ (equal rates) as the five most important topics. For the professionals of the Facebook© group, the top 5 were ‘touching’, ‘hearing’, ‘neurological status’, ‘futility’ and ‘visiting’.
The overlap of topics between ICU professionals and relatives was limited. None of the top 5 topics of the relatives featured in the top 5 of medical professionals. The topic ‘recent events (crisis)’ is considered the most important topic by relatives, for instance, with a mean value of 4.90; however, it did not feature among medical professionals as an important topic, with mean rankings of 3.85 (physicians), 3.95 (nurses), and 4.14 (Facebook© group). This corresponds to respective positions in rankings of 25, 22, and 23 out of 42. A detailed description of the results is presented in Table
5 and
6.
Table 5
Top 5 ratings given by relatives compare with physicians, nurses and Facebook group
Prognosis | Recent events (crisis) | 4.90 | 1 | 25 | <0.001a | 22 | <0.001a | 23 | <0.001a |
Prognosis | My participation | 4.83 | 2 | 11 | 0.074 | 16 | <0.001a | 11 | 0.020 |
Family | Contamination | 4.70 | 3 | 18 | 0.003a | 21 | 0.001a | 8 | 0.019 |
Comfort | Physical pain | 4.68 | 4 | 11 | 0.326 | 6 | 0.305 | 6 | 0.246 |
Prognosis | Probability | 4.65 | 5 | 15 | 0.093 | 19 | 0.001a | 20 | 0.027 |
Table 6
All results: ratings by relatives, physicians, nurses and Facebook©group
Neurologic status | 4.48 | 0.99 | 4.71 | 0.46 | 0.725 | 4.60 | 0.74 | 0.737 | 4.68 | 0.60 | 0.555 |
Fever | 4.32 | 1.17 | 2.82 | 0.90 | <0.001* | 3.43 | 0.94 | <0.001* | 3.15 | 0.96 | <0.001* |
Disease | 4.43 | 1.12 | 4.18 | 0.77 | 0.052 | 4.13 | 0.83 | 0.017 | 4.26 | 0.86 | 0.107 |
Appearance | 4.14 | 1.15 | 3.61 | 0.96 | 0.043 | 3.79 | 0.92 | 0.047 | 3.80 | 0.89 | 0.054 |
Vital signs | 4.50 | 1.14 | 3.93 | 0.86 | 0.003* | 4.14 | 0.95 | 0.015* | 4.04 | 0.79 | 0.002* |
Investigations | 4.35 | 1.03 | 3.79 | 0.83 | 0.011* | 3.51 | 1.02 | <.001* | 3.43 | 0.93 | <.001* |
Surgery | 4.47 | 1.07 | 4.44 | 0.70 | 0.324 | 4.32 | 0.83 | 0.111 | 4.51 | 0.65 | 0.436 |
What treatment? | 4.39 | 1.03 | 3.89 | 0.97 | 0.032 | 3.66 | 1.07 | 0.001* | 3.88 | 0.93 | 0.007* |
Weaning | 4.38 | 1.07 | 4.19 | 0.74 | 0.111 | 4.01 | 0.98 | 0.037 | 4.42 | 0.71 | 0.567 |
Tubes and machines | 4.09 | 1.34 | 3.07 | 1.07 | 0.003* | 3.35 | 1.17 | 0.002* | 3.45 | 1.14 | 0.012* |
Medication | 4.59 | 1.01 | 3.22 | 1.01 | <0.001* | 3.09 | 1.00 | <0.001* | 3.38 | 1.00 | <0.001* |
Recovery | 4.57 | 0.66 | 4.52 | 0.58 | 0.717 | 4.41 | 0.75 | 0.308 | 4.37 | 0.78 | 0.295 |
Death | 4.15 | 1.31 | 4.59 | 0.69 | 0.538 | 4.39 | 0.87 | 0.876 | 4.49 | 0.87 | 0.519 |
Probability | 4.67 | 0.58 | 4.33 | 0.73 | 0.093 | 4.02 | 0.89 | 0.001* | 4.26 | 0.80 | 0.027 |
Information and rights to information | 4.00 | 1.18 | 3.37 | 0.97 | 0.036 | 3.87 | 1.13 | 0.537 | 3.82 | 1.16 | 0.373 |
Recent events | 4.90 | 0.30 | 3.85 | 0.91 | <0.001* | 3.95 | 0.93 | <0.001* | 4.14 | 0.86 | <0.001* |
Psychological distress | 4.48 | 0.81 | 4.11 | 0.89 | 0.161 | 4.14 | 0.76 | 0.035 | 4.41 | 0.60 | 0.376 |
Supplying comfort items | 4.19 | 1.21 | 3.96 | 1.02 | 0.366 | 4.03 | 0.89 | 0.155 | 4.31 | 0.80 | 0.778 |
Physical pain | 4.70 | 0.66 | 4.52 | 0.85 | 0.326 | 4.59 | 0.65 | 0.305 | 4.57 | 0.63 | 0.246 |
Food | 4.25 | 0.91 | 3.37 | 0.97 | 0.004* | 3.60 | 0.97 | 0.007* | 3.79 | 0.87 | 0.049 |
Sleep | 4.00 | 1.26 | 3.62 | 0.90 | 0.089 | 4.08 | 0.87 | 0.725 | 4.28 | 0.79 | 0.653 |
Talking | 4.40 | 1.06 | 4.50 | 0.51 | 0.470 | 4.24 | 0.83 | 0.198 | 4.39 | 0.70 | 0.447 |
Answering | 4.62 | 0.86 | 4.50 | 0.59 | 0.082 | 4.33 | 0.79 | 0.030 | 4.42 | 0.77 | 0.088 |
Touching | 4.64 | 0.85 | 4.63 | 0.74 | 0.815 | 4.59 | 0.71 | 0.386 | 4.83 | 0.41 | 0.590 |
Hearing | 4.60 | 0.88 | 4.69 | 0.55 | 0.738 | 4.60 | 0.65 | 0.476 | 4.76 | 0.47 | 0.966 |
My participation | 4.84 | 0.50 | 4.48 | 0.80 | 0.074 | 4.10 | 0.94 | <0.001* | 4.47 | 0.73 | 0.020 |
Appointment | 4.65 | 0.70 | 3.73 | 0.83 | <0.001* | 3.71 | 1.05 | <0.001* | 3.90 | 0.98 | 0.003* |
Being informed | 3.76 | 1.26 | 3.48 | 0.80 | 0.386 | 3.57 | 1.14 | 0.391 | 3.45 | 0.99 | 0.181 |
News | 3.67 | 1.39 | 2.32 | 0.90 | 0.001* | 2.58 | 1.17 | <0.001* | 2.46 | 0.93 | <0.001* |
Staff members | 4.50 | 0.80 | 3.59 | 0.97 | 0.002* | 3.09 | 1.11 | <0.001* | 3.21 | 1.00 | <0.001* |
Telephone | 4.62 | 0.74 | 4.78 | 0.51 | 0.408 | 4.65 | 0.67 | 0.949 | 4.56 | 0.64 | 0.399 |
Visits | 4.55 | 0.74 | 4.65 | 0.56 | 0.940 | 4.67 | 0.58 | 0.544 | 4.62 | 0.68 | 0.734 |
Contamination | 4.71 | 0.72 | 4.11 | 0.80 | 0.003* | 3.98 | 1.11 | 0.001* | 4.52 | 0.66 | 0.119 |
Decision-making | 4.05 | 1.08 | 4.41 | 0.69 | 0.316 | 3.84 | 1.09 | 0.357 | 4.30 | 0.75 | 0.612 |
Relatives’ distress | 3.80 | 1.20 | 4.19 | 0.74 | 0.302 | 3.88 | 0.99 | 0.922 | 4.28 | 0.76 | 0.149 |
Religion | 3.15 | 1.35 | 3.15 | 0.92 | 0.836 | 3.32 | 1.04 | 0.677 | 3.47 | 0.98 | 0.408 |
Length of stay | 4.38 | 0.86 | 4.07 | 1.00 | 0.256 | 3.89 | 0.89 | 0.015* | 3.66 | 0.96 | 0.002* |
Relapse | 4.65 | 0.67 | 3.48 | 1.00 | <0.001* | 3.66 | 1.10 | <0.001* | 3.91 | 0.89 | <0.001* |
Sequelae | 4.50 | 0.83 | 4.07 | 0.68 | 0.033 | 3.49 | 1.01 | <0.001* | 3.91 | 0.90 | 0.006* |
Transfer | 4.62 | 0.67 | 3.85 | 0.83 | 0.001* | 3.59 | 1.07 | <0.001* | 4.00 | 0.87 | 0.003* |
Memory | 3.37 | 1.64 | 2.81 | 0.96 | 0.200 | 2.64 | 1.13 | 0.034 | 3.21 | 0.99 | 0.432 |
Futility | 4.42 | 0.96 | 4.67 | 0.68 | 0.172 | 4.54 | 0.70 | 0.396 | 4.67 | 0.62 | 0.185 |
Across all questions, the relatives generally assigned a higher importance to the topics than the medical professionals, with an average (mean) grade of 4.35 on the importance scale, compared to physicians (3.94), nurses (3.90), and the Facebook© group (4.05). Highly significant differences (all P < 0.016) were detected between relatives and physicians, e. g. in the domains fever, medication, recent events (crisis), appointment and relapse. Significant differences were also detected between relatives and nurses in the domains fever, investigations, medication, recent events, my participation, appointment, news, staff members, relapse, sequelae and transfer. The highest significant differences between relatives and the Facebook© group were fever, investigations, medication, recent events, news, staff members, relapse.