Literature Review

RESEARCH ARTICLE

State anxiety, uncertainty in illness, and needs

of family members of critically ill patients and

their experiences with family-centered

multidisciplinary rounds: A mixed model

study

Jiyeon KangID 1 , Young-Jae Cho

2 , Seunghye ChoiID

3*

1 Department of Anthropology, University of Virginia, Charlottesville, VA, United States of America,

2 Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Seoul National

University Bundang Hospital, Bundang-gu, Seongnam, Korea, 3 College of Nursing, Gachon University,

Yeonsu-gu, Incheon, Korea

* [email protected]

Abstract

This study aimed to determine whether family-centered multidisciplinary rounds could allevi-

ate anxiety and uncertainty in illness and meet needs for critically ill patients’ families. A fam-

ily-centered multidisciplinary rounds protocol was developed identifying needs of critically ill

patients’ families, and family experiences were reviewed through in-depth interviews. A

sequential mixed-methods study was utilized, combining survey data and semi-structured

interviews in a tertiary medical intensive care unit in South Korea. A structured questionnaire

assessed needs, anxiety, and uncertainty in illness for 50 participants. Interview data of 10

participants were analyzed using grounded theory. Assurance was the highest family need,

followed by information need. Family needs differed according to gender, relationship to the

patient, and length of intensive care unit stay. Participants reported family-centered multidis-

ciplinary rounds provided a sense of relief, a chance to listen to medical staff, and a chance

to provide medical staff with comprehensive information about patient care. Proximity needs

were found to have a positive correlation with state anxiety, while comfort needs had a nega-

tive correlation with uncertainty in illness. Families reported family-centered multidisciplinary

rounds were positive, useful experiences. Thus, standardization of family-centered multidis-

ciplinary rounds is needed to meet families’ various needs.

Introduction

Intensive care unit (ICU) admissions are increasing at a fast pace, as indications for more

available life support systems continue to expand, due to the aging population and recent

advances in medical technology. South Korea had a total of 10,127 ICU beds in 2016, and

more than 300,000 patients are admitted annually to ICUs for intensive treatment [1].

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OPEN ACCESS

Citation: Kang J, Cho Y-J, Choi S (2020) State

anxiety, uncertainty in illness, and needs of family

members of critically ill patients and their

experiences with family-centered multidisciplinary

rounds: A mixed model study. PLoS ONE 15(6):

e0234296. https://doi.org/10.1371/journal.

pone.0234296

Editor: Andrew Carl Miller, Nazareth Hospital,

UNITED STATES

Received: January 26, 2020

Accepted: May 24, 2020

Published: June 9, 2020

Copyright: © 2020 Kang et al. This is an open access article distributed under the terms of the

Creative Commons Attribution License, which

permits unrestricted use, distribution, and

reproduction in any medium, provided the original

author and source are credited.

Data Availability Statement: All relevant data are

within the paper and its Supporting Information

files.

Funding: This study was funded by the National

Research Foundation of Korea (Project #: NRF-

2017R1C1B5076726) to SH Choi. http://www.nrf.

re.kr The funder had no role in study design, data

collection and analysis, decision to publish, or

preparation of the manuscript.

Although a growing number of patients seek active involvement in making decisions about

their own healthcare [2], critically ill patients in ICUs are likely to be incapable of proactively

participating in discussions regarding treatment plan and decision-making due to various

medical conditions. Consequently, family members of patients in ICUs play a crucial part in

substitute decision-making, psychological support, and follow-up care [3, 4]. Despite their sig-

nificant role, families of critically ill patients also experience structural, emotional, and finan-

cial crises when their relatives are admitted to the ICU [5]. Particularly, as critically ill patients

are prone to a wide variety of acute and life-threatening complications, their families feel anxi-

ety caused by uncertainty of disease progression [6]. Thus, it is necessary to pay attention to

family members of critically ill patients to ensure effective implementation of family-centered

care [7].

Families of critically ill patients have a broad range of needs. It has been reported that family

members showed enhanced decision-making capacity and less post-traumatic stress disorder

symptoms when their needs were satisfied [8]. Also, it has been reported that family members

of critical care patients placed great importance on needs for assurance, proximity, and infor-

mation [9].

Facilitating communication between families of critically ill patients and medical staff can

help meet the family’s needs, while also serving as an important factor in medical decision-

making for critically ill patients. In the last decade, family-centered multidisciplinary rounds

have been developed as new measures to stimulate the families’ engagement in conversations

with the medical practitioners and to improve the quality of communication, patient satisfac-

tion, post-discharge planning, and patient safety [10, 11, 12]. However, in Korea, only very few

studies have explored this approach [13], and a protocol for family-centered multidisciplinary

rounds has not yet been established.

Therefore, this study aimed to: (1) develop a family-centered rounds protocol that engages

families members of critically ill patients in multidisciplinary rounds; (2) conduct a survey to

identify their needs, state anxiety, uncertainty in illness of patients; and (3) and conduct semi-

structured interviews with family members to better understand their experiences. The ulti-

mate goal of this study was to determine if family-centered multidisciplinary rounds could

contribute to alleviating state anxiety and uncertainty in families of critically ill patients, while

also satisfying their needs.

Methods

Research design

This study conducted a mixed-model analysis by combining survey data and semi-structured

interviews to identify variables related to critical care family needs, anxiety, and uncertainty in

illness. All participants responded to questionnaires regarding critical care family needs, anxi-

ety, and uncertainty in illness, and some of them were interviewed after they attended family-

centered multidisciplinary rounds.

Participants and data collection

A total of 50 family members of critically ill patients participated in this study between Octo-

ber, 2018 and May, 2019. The research site was a medical intensive care unit (MICU) in a ter-

tiary hospital in South Korea. Inclusion criteria for family members were as follows: (1) those

whose relative was in the ICU for � 48 hours, (2) aged � 18 years, and (3) those who visited

the patient � once per week. Of the 87 family members who agreed to participate, 50 were

included in the final analysis. Those whose relative died during the research period (n = 12)

and those who submitted incomplete questionnaires (n = 25) were excluded. 10 family

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Competing interests: The authors have declared

that no competing interests exist.

members also agreed to participate in family-centered multidisciplinary rounds and semi-

structured interviews.

A recruitment flyer was posted on a bulletin board at the ICU entrance during the study

period. Additionally, nurses and residents directly contacted potential participants to ask if

they would be willing to take part in the study. Those who voluntarily expressed their willing-

ness to participate were recruited. Participants were asked to complete questionnaires. The 10

participants who agreed to attend family-centered multidisciplinary rounds were interviewed

by a member of this research team after rounds ended. Interviews began with an open-ended

question: “Can you tell me about the day the patient was admitted to the ICU?” The interviews

included questions on the following: (1) psychological, physical, and financial distress faced by

family members during ICU admission; (2) ways of supporting and providing care to patients;

(3) evaluation of ICU staff and quality of care; and (4) evaluation of family-centered multidis-

ciplinary rounds.

Instruments

Information was collected regarding participants’ and patients’ genders and ages, family mem-

bers’ relationship to the patient, cohabitation with the patient, length of stay (LOS), cause of

admission, and Acute Physiology, Age, Chronic Health Evaluation II (APACHE II) scores

[14]. In the case of interview participants, information regarding educational level and religion

was also collected.

Family needs were assessed using the Korean version of the Critical Care Family Needs

Inventory (K-CCFNI), originally developed by Molter [15] and Leske [16]. The K-CCFNI con-

sists of 45 items: assurance (7), information (9), proximity (9), comfort (6), and support (14).

In a previous study, goodness-of-fit indices for each subscale all exceeded their recommended

acceptance levels [9]. In this study, mean scores for each subscale and mean total scores were

calculated and compared.

State anxiety was assessed using the State Anxiety Inventory-X-1 as a standardized instru-

ment for measuring anxiety. This inventory was originally developed by Spielberger [17], and

then later translated into Korean [18]. All items are rated on a 4-point Likert scale, and the

item scores are summed to produce a total score ranging from 20 to 80. A 20~51 score indi-

cates a state without anxiety, and a score of above 51 means that with state anxiety. To assess

uncertainty in illness, we used the Mishel Uncertainty in Illness Scale (MUIS), which was origi-

nally developed by Mishel [19], and modified for use in a Korean population by Park [20] and

Kim [21]. In terms of family needs, state anxiety, and uncertainty of illness, Cronbach’s alphas

of the three scales were calculated.

Family-centered multidisciplinary rounds protocol

The multidisciplinary team consisted of two physicians (attending physician, resident physi-

cian), two nurses (attending nurse, nurse practitioner), a pharmacist, and a social worker.

Family members participated in rounds with the team. Based on previous studies, the family-

centered multidisciplinary protocol was designed as follows: 1) obtaining a signed consent

form prior to family-centered multidisciplinary rounds; 2) a social worker’s consultation with

family members regarding their financial status and any available support programs to which

they could apply; 3) introducing team members to family members at the commencement of

rounds; 4) reporting by an attending nurse, a resident, a pharmacist, and a social worker in

sequence, the patient’s current clinical condition, future plans for treatment, rationale for clini-

cal judgment of treatment effects, goals of nursing care, and family preferences [22, 23]; and 5)

providing family members with a question and answer session at the end of rounds [24].

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Data analysis

Survey data were analyzed using IBMⓇ SPSS version 23.0 (IBM Corp, Armonk, NY, USA). Key variables such as total score and subscale scores of needs, state anxiety, and uncertainty

were tested for normality using Kolmogorov-Smirnov Z values. General characteristics and

needs of critically ill patients and their families, state anxiety, and uncertainty in illness were

presented in terms of real numbers, percentages, means, and standard deviations.

Needs of families of critically ill patients, state anxiety, and uncertainty in illness according

to the families’ general characteristics were compared using Mann-Whitney U tests and t-tests.

Correlations between ICU LOS, APACHE II scores and critical care family needs, state anxi-

ety, and uncertainty in illness were obtained using Pearson’s correlation coefficients.

Semi-structured interview data were analyzed based on grounded theory [25]. Two investi-

gators independently read and re-read the transcripts and field notes and generated codes and

themes, which were combined into similar codes after interviews were completed. Each code

was accompanied by a memo on the background and details of the code. Once the process of

coding was complete, the two investigators examined each other’s coding results and modified

code and theme structures through on-going discussions. After data collection was complete,

all investigators re-examined the results from the first round of coding. Finally, the final codes

and themes were created.

This study referred to the interview research checklist proposed by Tong, Sainsbury, and

Craig [26], to ensure the reliability and validity of the qualitative research. To capture partici-

pants’ responses as much as possible, non-verbal communication, such as hesitation in

responding and gestures exhibited during interviews, were recorded and transcribed. The

investigator in charge of conducting interviews attended the family-centered multidisciplinary

rounds so as to better understand the broader context in which participants were positioned.

This research team consisted of researchers from a wide range of professions—an ICU attend-

ing physician, professor of nursing with critical care experience, and doctoral candidate in

medical anthropology—and the diversity of the team contributed to maintaining balance in

analysis and interpretation of data throughout the project.

Ethical approval

This study was conducted with the approval of the Seoul National University Bundang Hospi-

tal Institutional Review Board (IRB; survey: IRB No. B-1808-484-308, semi-structured inter-

view: IRB No. B-1809-492-303). All participants were given explanations regarding research

ethics and signed informed consent after full knowledge on the aim of the study, benefit of par-

ticipation, and withdrawal of participation. Identifiable personal information was deliberately

deleted during the transcription process, and all participants were recorded on questionnaires

and interview transcripts only as ID numbers.

Survey results

General characteristics, needs, state anxiety, and uncertainty in illness

The mean age of family members was 51.32 years, and the mean age of patients was 68.68.

Mean ICU LOS was 12.96 days, and mean APACHE II score at the time of ICU admission was

21.96 (Table 1).

The mean score for critical care family needs was 3.26 on a four-point scale. Among sub-

scales, assurance was ranked at the top, followed by information, proximity, comfort, and sup-

port needs. The mean state anxiety score for family members was 52.84, and mean of

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uncertainty in illness score was 39.82. Further, 43.1% of participants showed symptoms of

state anxiety (n = 22; Table 2).

Critical care family needs, state anxiety, and uncertainty in illness

according to general characteristics

Kolmogorov-Smirnov Z tests revealed that all variables of 0.611 (p = .849), 0.932 (p = .350), 1.221 (p = .101), 0.973 (p = .301), 0.679 (p = .745), 0.858 (p = .453), and 0.696 (p = .718), except assurance needs of 1.940 (p = .001), satisfied normality assumptions, and the Mann-Whitney U test, a nonparametric test, was conducted on assurance needs accordingly.

Results showed that there were no significant differences in assurance needs, with regard to

general characteristics. For information needs, higher p-values were obtained when the family

member was female (p = .040) or a spouse (p = .024). For proximity needs and comfort needs, higher p-values were obtained for females (p = .002, p = .029, respectively). For support needs, higher p-values were derived when the family member was female (p = .010) or a spouse (p = .019). For state anxiety and uncertainty in illness, no significant differences were found in gen-

eral characteristics (Table 3).

Table 1. General characteristics of family members and patients (N = 50).

Mean±SD or N (%) Family’s characteristics

Age (years) 51.32±11.28 < 65 44 (88.0)

� 65 6 (12.0)

Sex Female 27 (52.9)

Male 23 (45.1)

Relationship Spouse 12 (23.5)

Other 38 (74.5)

Parents 4 (7.8)

Sibling 3 (5.9)

Offspring 30 (58.8)

Relative 1 (2.0)

Living with Yes 26 (51.0)

No 24 (47.1)

Patients’ characteristics

Age 68.68±16.86 Sex Female 13 (25.5)

Male 37 (72.5)

LOS 12.96±13.40 Cause of admission Sepsis/Septic shock 5 (10.0%)

Respiratory Failure 38 (76.0%)

Heart failure 1 (2.0%)

Renal failure 3 (6.0%)

Malignancy 1 (2.0%)

Others 2 (4.0%)

Route of ICU admission ER 14 (28%)

Ward stay before ICU admission 36 (72%)

APACHE II score 21.96±7.39

SD = standard deviation; LOS = length of stay; ER = emergency room; ICU = intensive care unit; APACHE II = Acute physiology, age, chronic health evaluation II

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Correlations with state anxiety, uncertainty in illness, ICU LOS, APACHE

II scores, and needs

A positive correlation between proximity needs and state anxiety (p = .027) was observed, whereas a significant negative correlation between comfort needs and uncertainty was found

(p = .033). For state anxiety, significant positive correlations with uncertainty in illness and with LOS (p = .001 and p = .002, respectively) were observed. Similarly, uncertainty had a sig- nificant positive correlation with ICU LOS (p = .008; Table 4).

Interview findings

General characteristics of participants. The mean age of family members was 56.1 years,

and the mean age of patients was 66.7. Mean ICU LOS was 11.3 days, and mean APACHE II

score at the time of ICU admission was 24.3. Among 10 participants, 9 participants had reli-

gions; 4 participants were spouses, 4 participants were adult children; Whereas 7 patients were

Table 2. Family needs, state anxiety, and uncertainty of family members (N = 50).

Mean±SD or N(%) Range Family needs Total 3.26±0.40 2.27–3.98

Assurance need 3.86±0.20 3.14–4.00 Information need 3.38±0.37 2.33–4.00 Proximity need 3.28±0.49 2.00–4.00 Comfort need 2.96±0.63 1.50–4.00 Support need 2.96±0.55 1.50–4.00

State anxiety 52.84±14.60 22.00–78.00 � 51 22 (43.1)

� 52 22 (43.1)

Uncertainty in illness 39.82±10.53 20.00–61.00

SD = standard deviation

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Table 3. Family needs, state anxiety, and uncertainty according to general characteristics (N = 50).

Age Sex Relationship Living with

< 65 � 65 T or U(p) F M T or U(p) Spouse Other T or U(p) Yes No T or U(p) Mean±SD Mean±SD Mean±SD Mean±SD Mean±SD Mean±SD Mean±SD Mean±SD

Assurance 3.87±0.19 3.83±0.29 118.50 (.820)

3.92±0.14 3.80±0.25 207.50 (.076)

3.94±0.10 3.84±0.22 162.50 (.164)

3.90±0.17 3.83±0.23 233.50 (.224)

Information 3.37±0.39 3.44±0.28 -0.478 (.635)

3.48±0.31 3.26±0.41 2.114 (.040)

3.58±0.24 3.30±0.39 2.337 (.024)

3.43±0.36 3.32±0.39 0.994 (.325)

Proximity 3.28±0.50 3.31±0.46 -0.164 (.870)

3.49±0.26 3.05±0.58 3.327 (.002)

3.43±0.27 3.24±0.54 1.617 (.115)

3.32±0.46 3.25±0.53 0.470 (.641)

Comfort 2.95±0.63 3.03±0.72 -0.266 (.791)

3.15±0.51 2.75±0.70 2.257 (.029)

3.18±0.58 2.89±0.64 1.382 (.174)

2.98±0.69 2.94±0.59 0.211 (.834)

Support 2.95±0.57 3.11±0.38 -0.643 (.523)

3.16±0.47 2.75±0.70 2.704 (.010)

3.32±0.45 2.87±0.54 .449 (.019) 3.05±0.52 2.88±0.59 1.064 (.293)

State anxiety 52.63

±14.16 54.17

±18.61 -0.237

(.814)

55.36

±13.28 49.53

±15.92 1.324

(.193)

59.25

±11.86 50.44

±14.96 1.832

(.074)

55.50

±15.32 49.65

±13.36 1.336

(.189)

Uncertainty in

illness

39.72

±9.74 40.50

±16.33 -0.168

(.867)

42.50

±9.04 36.78

±11.43 1.952

(.057)

43.18

±12.28 38.84

±9.93 1.210

(.232)

40.44

±12.16 39.17

±8.72 0.420

(.677)

SD = standard deviation

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male, 7 participants were female. In terms of education level, 4 participants had bachelor’s or

above degrees, and 6 participants had high school diploma (Table 5).

Response to ICU admission, anxiety, and uncertainty in illness. During in-depth inter-

views, state anxiety of family members of critically ill patients first presented as psychological

shock about an ICU admission, viewing it as an unrealistic and unexpected event to happen in

one’s own family. Interviewees associated ICU admission with the possibility of the patient’s

death, and their anxiety intensified, especially when they were directly informed by medical

staff of a negative prognosis or when they anticipated unfavorable outcomes of treatment

based on their own observations. Further, concerns about the patient’s deteriorated quality of

life after discharge (e.g., dialysis or severe disability) led to anxiety (No. 6, No. 7).

However, the ICU admission itself did not necessarily cause anxiety. Most interviewees

expressed expectations and hopes for favorable outcomes, as they perceived the ICU as a place

where patients could benefit from “machines” and “where the patient can receive dedicated

intensive care” (i.e., a place in which medical knowledge and technology, as well as human

resources, were concentrated) (No. 1, No. 3, No. 4, No. 7).

Table 4. Correlations with state anxiety, uncertainty, length of stay in ICU, APACH II scores, and family needs (N = 50).

State anxiety Uncertainty in illness LOS APACH II score

r (p) r (p) r (p) r (p) Family needs Total .185 (.274) .004 (.978) .223 (.155) .125 (.429)

Assurance .125 (.430) .083 (.580) .180 (.226) .229 (.117)

Information .095 (.551) -.074 (.623) .222 (.138) .192 (.197)

Proximity .346 (.027) .077 (.607) .288 (.050) .171 (.252)

Comfort -.088 (.574) -.308 (.033) -.026 (.858) .049 (.737)

Support .123 (.438) .014 (.925) .207 (.158) .145 (.324)

State anxiety 1 .496 (.001) .466 (.002) .170 (.270)

Uncertainty in illness .496 (.001) 1 .374 (.008) .281 (.051)

LOS in ICU .466 (.002) .374 (.008) 1 -.001 (.992)

APACH II score .170 (.270) .281 (.051) -.001 (.992) 1

LOS = length of stay; APACHE II = Acute physiology, age, chronic health evaluation II

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Table 5. Characteristics of study participants (Families) and critically Ill patients for depth semi-structured interviews (N = 10).

ID Families Patients

Gender Age Relationship Education level Religion Gender Age Reason for admission ICU ICU LOS (days) Initial APACHE II Score

01 F 63 Spouse High school diploma Yes M 63 Respiratory failure 33 16

02 F 44 Offspring � Bachelor’s Degree Yes F 78 Renal failure 25 42

03 M 48 Offspring � Bachelor’s degree Yes M 80 Respiratory failure 11 21

04 F 60 Sibling High school diploma Yes F 62 Other 4 17

05 F 74 Spouse High school diploma Yes M 76 Respiratory failure 2 26

06 F 51 Mother High school diploma Yes M 20 Respiratory failure 3 31

07 F 67 Spouse � Bachelor’s degree No M 71 Respiratory failure 6 19

08 M 41 Offspring High school diploma Yes M 68 Respiratory failure 9 17

09 M 53 Offspring � Bachelor’s degree Yes F 88 Respiratory failure 16 33

10 F 60 Spouse High school diploma Yes M 61 Sepsis/Renal failure 4 21

ICU = intensive care unit; LOS = length of stay; APACHE = Acute physiology, age, chronic health evaluation

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Information needs. All interviewees reported they communicated primarily with nurses

and resident physicians in the ICU, mainly about the patient’s condition and future treatment

plans. Regarding the understandability of terminology used by medical professionals, interview-

ees assessed that “it was not too hard to understand.” Specifically, one interviewee expressed sat-

isfaction with supplementary images the attending nurse showed to help family members better

understand how the treatment worked (No. 3). However, elderly interviewees reported they

could not fully understand some explanations made by medical staff (No. 9, No. 10).

Interviewees expressed satisfaction with information that helped them comprehend the

overall course and mechanisms of treatment, rather than fragmented information. They

wanted to receive information that could meet their assurance needs or contribute to their feel-

ings of control over uncertainties about the future as much as possible.

Not all interviewees wanted to receive all possible information. Some did not want to hear

about unfavorable treatment outcomes (No. 1, No. 10), especially in front of the patients,

because they thought an unfavorable prognosis might discourage patients and affect their

recovery. Most interviewees reported they were able to ask medical staff any questions; how-

ever, some hoped the staff would explain them before the family members asked, because they

did not want to interrupt the medical staff’s work (No. 1, No. 6). Most interviewees had a high

need for direct communication with attending physicians, and some felt anxious about

whether medical staff from diverse departments could collaborate and communicate with each

other smoothly.

It should be noted that participants were not always sure whether the person with whom

they had frequent communication was a nurse, resident, or attending physician. Information

needs also emerged regarding joint decision-making with other family members. When dis-

cussing treatment plans and patient prognosis with family members, interviewees served as

mediators who delivered information from the medical staff to other family members. Despite

their efforts to “remember properly and convey accurately” what they heard from physicians

and nurses, participants stated this task was not easy.

Support needs. Interviewees reported they received emotional support from other rela-

tives and friends. Two interviewees were under extreme stress, due to their unmet needs for

emotional support. One interviewee (son, No. 8) stated he had been the primary caregiver for

a patient (mother) over the past 17 years, without having other family members to share the

burden of care and decision-making. He was suffering from panic disorder. Another inter-

viewee (wife, No. 2) was supposed to make decisions regarding her husband’s treatment with

his seven siblings, under circumstances in which she financially relied on them. However, the

patient’s siblings frequently reversed her decisions, coaxed her to relinquish her control over

her husband’s medical treatment, and discouraged her by saying “he [patient] will die

anyway.”

Regarding interactions with medical staff, one interviewee was stressed because she felt

medical staff “forced” her to sign a consent form about withholding life-sustaining treatment

(No. 1). Some interviewees responded that some programs offered by the hospital, such as can-

cer care counseling (No. 9) and social welfare programs (No. 2, No. 8), supported them.

Notably, financial support needs—which had not been included in the survey—emerged as

an important theme in the interviews. With the exception of three interviewees, most partici-

pants complained of financial burdens caused by medical expenses and work loss, and exhib-

ited high levels of satisfaction with the financial assistance program provided by the social

welfare team.

Comfort needs. All interviewees (except No. 9) expressed dissatisfaction regarding com-

fort needs. Interviewees presupposed that they were willing to endure any inconveniences, if

only patients could recover, and that they were grateful for a space arranged for the patient’s

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family. Nevertheless, several complaints were reported in relation to comfort needs, such as

poor lounge conditions and inflexible ICU visiting hours that forced them to reorganize their

personal schedule and travel long distances twice a day. It should be noted that comfort needs

were ranked as a low priority compared to other needs on the survey, but were addressed in

the interview with detailed comments.

Proximity needs. Some interviewees expressed feelings of guilt and helplessness, as there

was nothing they could do for patients in severe pain (No. 4, No. 10). One interviewee (son,

No. 8), who believed himself to be familiar with details of the patient (mother)’s history

through long-time caregiving, wanted the medical staff to allow him to stay with the patient

when her delirium worsened.

Assurance needs. Interviews made few direct statements regarding assurance needs,

regardless of their strong wishes for the patients’ recovery. Rather than seeking assurance from

the medical staff, interviewees managed to assure themselves by combining their own observa-

tion on the patient’s progress and information from the medical staff (No. 4).

Contribution of family-centered multidisciplinary rounds: Extending beyond informa-

tion provision to encompass emotional support. Family-centered multidisciplinary rounds

received positive evaluations from most participants, who exhibited high degrees of satisfac-

tion, especially in terms of information needs. Particularly, the presence of multiple profes-

sionals was cited as strength of rounds, as this opportunity allowed them “to be informed of

and ask questions about all relevant issues at once.” Interviewees reported family-centered

multidisciplinary rounds provided an opportunity to communicate with the attending physi-

cian, which had been addressed as an unmet information need. Participants reported that fam-

ily-centered multidisciplinary rounds alleviated their anxiety about whether medical staff from

multiple departments could communicate smoothly with one another.

Family-centered multidisciplinary rounds were assessed as helpful for the family in making

plans for future patient treatment and prognosis, as the multidisciplinary rounds were

designed to bring together the ICU attending physician, resident, nurse, pharmacist, and social

worker to discuss the patient’s clinical condition, current treatment status, and care plan. Par-

ticipants also remarked that they could comprehend what the medical staff were discussing,

because few medical and technical terms were used during rounds.

In addition to primary information that could be obtained from medical staff during fam-

ily-centered multidisciplinary rounds, participants also highly appreciated meta-linguistic data

obtained through the multidisciplinary format. The interviewees expected the rounds would

be of great help not only to the patients and their families but also to attending physicians, in

that the rounds would allow them to integrate more detailed and comprehensive information.

Properties of multidisciplinary rounds contributed to meeting information needs, and fur-

ther providing emotional support. Some interviewees reported that had feelings of “trust” and

“hope” when they witnessed medical staff from multiple professions discussing a patient.

Discussion

This study was conducted to develop a Korean nursing model of family-centered critical care

that satisfies needs of critical care family members. Previous studies conducted in South Korea

have shown inconsistent results. There are some cases in which assurance needs are highest

[27, 28], and other cases where proximity needs are highest [5]. Additionally, most studies

regarding family members of critically ill patients in Korea have dealt with the correlation

between stress and anxiety [29], or between strain and stress [5]; however, few have investi-

gated the correlation between needs of family caregivers, anxiety, and uncertainty in illness.

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This study identified variables related to critical care family needs, state anxiety, and uncer-

tainty in illness, in the context of family experience, via quantitative and qualitative methods.

Results showed that the mean of critical care family needs was lower than that of previous

studies conducted in South Korea (3.26 vs. 3.4~3.5) [27, 28]. The means of uncertainty in ill-

ness and state anxiety were slightly lower than in previous studies [20, 30]. However, given

that the state anxiety inventory, in practice, considers scores of 40 or above as clinical anxiety

[30], the participants in this study could be regarded psychologically anxious. The semi-struc-

tured interview also indicated that family members of critically ill patients perceived ICU

admission itself as a traumatic event and associated it with the possibility of death, which is

consistent with findings of previous studies [31, 32]. The results of the present study showed

that both anxiety and uncertainty in illness have positive correlations with ICU LOS, which

suggested the need for psychological counseling for the families of long-stay patients.

Regarding subscale scores, assurance needs were ranked highest, followed sequentially by

information needs, proximity needs, and comfort needs; this finding was consistent with pre-

vious studies [27]. Assurance needs obtained the highest scores regardless of general character-

istics of patients or their families. Information needs were the second highest, as was suggested

in a previous study [33] which found the need for information was universal and generic, inde-

pendent of a family’s educational level or cultural background.

With regard to information needs, data from semi-structured interviews addressed some

details of the contents and the ways of information delivery: first, participants exhibited satis-

faction with information provided through supplementary materials. Second, participants did

not seek merely fragmented information but more integrated information that covered both

progress and prognoses of patients, so they could anticipate what would happen. Third, some

participants were not satisfied with the discussion with medical staff regarding bad prognosis.

Fourth, families of critically ill patients had some difficulties asking the working medical staff

to provide information. These results underscore that, on the one hand, medical practitioners’

effort to engage family caregivers in clinical conversation is required, the quality of informa-

tion and the way of conveying information impact the families’ information needs, on the

other hand. As noted, communication strategy in delivering bad news and discussing advance

care planning should be tailored according to the patient and the family members’ socio-cul-

tural backgrounds [6; 34, 35]. Our study also highlights the necessity of sensitive approach to

the relatives especially in consideration of age and expectation of a patient’s recovery.

Semi-structured interviews revealed that joint decision-making could incur additional bur-

dens to the primary caregiver: (1) mediation between family members and (2) information

conveyance from the medical staff to other family members. We suggest the use of ICU diaries

as a resolution of the information conveyance issue. The difficulty of mediation was addressed

particularly in cases where the primary caregiver was not financial stable. A preliminary inter-

view with the social worker who participated in the family-centered multidisciplinary rounds

offered an opportunity to identify the family conflict and economic hardships. Medical staff

may consider empowering the primary caregiver during multidisciplinary rounds by elaborat-

ing caring atmosphere and discussing attitude and behavior [36], if he or she seems highly

dependent on other joint-decision makers.

In this study, there were differences in need of family according to gender. Female family

members of critically ill patients had higher information, proximity, comfort, and support

needs, compared to male family members. These results consistent with previous study [37]

that reported female caregivers may feel more obligated and expected to fulfill a wide variety of

caregiving roles.

In terms of the effect of visiting hours, previous studies have found incongruent results:

some studies have reported that extended patient visiting hours lowered levels of depression

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and anxiety [38], while others have reported that the same measure did not contribute meeting

critical care families’ proximity needs [39]. These conflicting findings indicated that proximity

needs do not simply mean a desire to be physically close to a patient. As revealed in interviews,

participants wanted to contribute to patients’ care, even if the action was very trivial. Thus, it is

necessary to consider a wide variety of visiting methods as well as more flexible visiting hours,

beyond passive visits and extension of ICU visiting hours. Given that various key factors affect

the involvement of critical care family members in nursing care, including family characteris-

tics, workload of nurses, severity of the patient’s illness, safety for patients and their families,

and legal issues and that nurses tend to be unaware of how to engage family members in criti-

cal care nursing [40], this research data emphasize the necessity of a paradigm shift to study

the scope and types of proximity needs, the efficacy of families’ active involvement in alleviat-

ing their helplessness, and standard protocols. In Korea, meeting with family caregivers are

mainly conducted by doctors and nurses, but it is also needed for various medical staffs such

as physiotherapists to participate in the meeting with family caregivers and educate them

about the procedures that caregivers could do.

In this study, comfort needs showed a negative correlation with uncertainty in illness. It

should be noted that comfort needs were ranked as a low priority compared to other needs in

the survey, but were addressed in the interviews with specific comments on visiting hours and

poor family lounge conditions. This indicates that comfort needs, if not a high priority, are

real issues for critical care families. As some studies have reported that comfort needs were

linked to ICU settings, and satisfying the comfort needs consequentially led to family satisfac-

tion [41], the lounge area for critical care families may also deserve attention.

All participants (except No. 1) exhibited positive responses to family-centered multidisciplin-

ary rounds, which was consistent with findings from previous studies [42–44]. Family-centered

multidisciplinary rounds enabled them to obtain high-quality information directly from multi-

ple professionals that contained both what treatment the patient had received and would receive,

and this comprehensive information helped participants to predict the future events despite

uncertainty in illness. Furthermore, participants were not merely passive recipients of informa-

tion, but evaluated meta-information in a way that such a format of rounds would facilitate the

medical staff, especially attending physicians, to establish and implement patient-tailored care

plans. Therefore, future family-centered multidisciplinary rounds should focus on sharing treat-

ment plans with, and offering question and answer opportunities to, family caregivers.

Many participants had trouble telling with whom they had communicated, which implied a

lack of proper introductions in Korean ICU settings. In comparison, they had a clear idea of

who participated in family-centered multidisciplinary rounds, because the medical staff intro-

duced themselves by position at the beginning. Thus, we expect that family-centered rounds

can contribute to enhancing the quality of communication between medical staff and families.

However, it is also of note that the communicative factors adopted by family-centered rounds,

especially discussing the bad prognosis in front of the patient, may be not familiar to some

family members. This reluctance to discuss unfavorable prognoses with patients is dominant

not only in Korea but also in many countries [45]. In order to save the advantage from the

family-centered rounds, it is necessary to fully explain, in advance, the benefits of involving

both patients and their families in treatment plan discussions and to obtain consent accord-

ingly. Also, the social work counseling services included in the multidisciplinary rounds proto-

col provided not only financial assistance but also emotional support for critical care families,

which could be particularly essential to family members of critically ill patients who lack a sup-

port system.

Some limitations of the present study should also be noted. A major limitation of this study

is that it included only family members of critically ill patients admitted to the medical ICU. It

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may be that family members in other ICU settings have different experiences and needs. More-

over, since the family-centered multidisciplinary rounds took place in the morning, this study

could not recruit family members who had to go to work during the day.

Conclusion

In the present study, female family members of critically ill patients had higher information,

proximity, comfort, and support needs, compared to male family members, and spouses had

higher information and support needs, compared to other family members. Proximity needs

were positively correlated with state anxiety, and comfort needs were negatively correlated

with uncertainty in illness. The families of critically ill patients who participated in family-cen-

tered multidisciplinary rounds stated positively that this allowed them to understand overall

treatment plans and facilitated communication with medical staff. Based on these findings, a

family-centered multidisciplinary rounds protocol can be established and implemented and,

as the next step, further intervention studies are recommended to conduct a forward-looking

assessment regarding the effects of family-centered multidisciplinary rounds on critical care

family needs.

Supporting information

S1 Data.

(XLSX)

S1 File.

(DOCX)

S1 Questionnaire.

(DOCX)

Acknowledgments

The authors wish to thank the participating family members and medical staff for participation

in this study.

Author Contributions

Conceptualization: Young-Jae Cho, Seunghye Choi.

Data curation: Jiyeon Kang, Seunghye Choi.

Formal analysis: Jiyeon Kang.

Funding acquisition: Seunghye Choi.

Investigation: Jiyeon Kang, Seunghye Choi.

Methodology: Seunghye Choi.

Software: Seunghye Choi.

Supervision: Young-Jae Cho.

Validation: Young-Jae Cho.

Writing – original draft: Jiyeon Kang, Seunghye Choi.

Writing – review & editing: Jiyeon Kang, Young-Jae Cho, Seunghye Choi.

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