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Family ENgagement in Intensive Care Environments (FENICE): A quasi-experimental study protocol

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Abstract

Even if health care professionals should take into account the active involvement of families in Intensive Care Units (ICUs), little research that investigates family member’s contributions to care and includes its outcomes on both the family itself and the patient care, is available. The aim of this research project is to assess the effects of a family engagement program on family members’ satisfaction and on patients’ well-being and quality of life. A quasiexperimental study with two non-randomized groups (94 per each group) will be performed in two general ICUs of an Academic Italian Hospital. The intervention will be carried out in a single ICU and it consists of family members’ involvement in the care of their loved ones by means of bed physical exercises and simple care tasks. Participants will be evaluated through manifold outcomes: family satisfaction, assessed with the FS-ICU tool within 48 hours after ICU discharge; patients’ sense of well-being, measured with a visual analogue scale within 30 minutes after the time period of a visit; and the quality of life, investigated with the SF- 12 questionnaire within the first 48 hours after admission to ICU, at three and six months after ICU discharge by telephone. From July 2020, 188 subjects are going to be enrolled throughout the year. The latest data will be collected in December 2021 to allow the completion of the follow-ups of all participants. First, this study constitutes a significant step in a research agenda aimed at deepening the nursing sensitive outcomes in ICUs and the quality of hospital care. Secondly, the results of this study might have the potential to provide a better understanding of how families may modify patients’ outcomes and whether family members would benefit from an involvement program.
[page 122] [Emergency Care Journal 2020; 16:8972]
Emergency Care Journal 2020; volume 16:8972
Abstract
Even if health care professionals should take into account the
active involvement of families in Intensive Care Units (ICUs), lit-
tle research that investigates family member’s contributions to care
and includes its outcomes on both the family itself and the patient
care, is available. The aim of this research project is to assess the
effects of a family engagement program on family members’ satis-
faction and on patients’ well-being and quality of life. A quasi-
experimental study with two non-randomized groups (94 per each
group) will be performed in two general ICUs of an Academic
Italian Hospital. The intervention will be carried out in a single
ICU and it consists of family members’ involvement in the care of
their loved ones by means of bed physical exercises and simple
care tasks. Participants will be evaluated through manifold out-
comes: family satisfaction, assessed with the FS-ICU tool within
48 hours after ICU discharge; patients’ sense of well-being, meas-
ured with a visual analogue scale within 30 minutes after the time
period of a visit; and the quality of life, investigated with the SF-
12 questionnaire within the first 48 hours after admission to ICU,
at three and six months after ICU discharge by telephone. From
July 2020, 188 subjects are going to be enrolled throughout the
year. The latest data will be collected in December 2021 to allow
the completion of the follow-ups of all participants. First, this
study constitutes a significant step in a research agenda aimed at
deepening the nursing sensitive outcomes in ICUs and the quality
of hospital care. Secondly, the results of this study might have the
potential to provide a better understanding of how families may
modify patients’ outcomes and whether family members would
benefit from an involvement program.
Introduction
The well-being of patients and their relatives is considered fun-
damental in the care of critically ill adult patients and one of the
top five research priorities among intensive care nurses.1The con-
cept of “family engagement” in Intensive Care Unit (ICU) has
expanded to the point where Health Care Professionals (HCPs)
should now consider the role of the family as no longer of passive
consultation, but rather of active involvement.2
A recent scoping review has investigated the extent of litera-
ture on patient and family involvement in ICUs between 2003 and
2014.3The authors identified five components of family participa-
tion, that focused on involvement as: i) being present; ii) receiving
care and meeting needs; iii) communicating and receiving infor-
mation; iv) participating in the decision-making process; and v)
contributing to care.3A more recent clinical review in 2018 has
summarized the concept of “engagement” by defining it as a mech-
anism to take action with people and to share with them informa-
tion and decisions, and a way to achieve patient- and family-cen-
tered care.4In addition, authors designated as “family” each family
member, close relative, and caregiver with whom the patient spent
most of the time.4
Where “family involvement” has been documented, the contri-
butions have primarily considered family’s attendance in ICU
rounds,5-7 followed by the participation in fundamental care, such
as bathing and massaging,8in psychological patients’ care,9in ven-
tilator weaning programs,10 and in research experiences.11
Regarding the outcomes, the family members’ involvement in
the ICU patient care seems to improve patients’ psychological
recovery, well-being, and satisfaction levels,12 while their post-
traumatic disorders and depression were found to be reduced.13
Recently, family engagement in professional care has been recog-
nized as a Nursing Sensitive Outcome (NSO),14,15 that is a patient
or caregiver ’s state, behavior, or perception associated to nursing
interventions.16 Accordingly, assessing family members’ satisfac-
tion should be considered a way to improve the quality of critical
care provided to families of patients in ICU environments.17
To date, little research investigating family members’ contribu-
tions to care in ICUs, including its outcomes on family itself and on
Correspondence: Matteo Danielis, Department of Clinical Sciences and
Community Health, University of Milan, Via Vanzetti, 5 - 20133, Milan,
Italy.
E-mail: matteo.danielis@unimi.it
Key Words: family engagement; intensive care unit; critical care;
patient and family outcomes; experimental study.
Ethical Committee: This protocol was approved by the Regional Ethics
Committee of the Friuli Venezia Giulia, Italy (CEUR-2020-Sper-012).
Trial registration: ClinicalTrials.gov, Identifier: NCT04311190.
Registered on March 17, 2020. Available from: https://clinicaltrials.gov/
ct2/show/NCT04311190?term=fenice&draw=2&rank=1.
Conflict of interest: No one. This work was not supported by any grant.
Ethics approval and consent to participate: The manuscript does not
contain any individual person's data in any form.
Received for publication: 19 March 2020.
Accepted for publication: 27 May 2020.
This work is licensed under a Creative Commons Attribution 4.0
License (by-nc 4.0).
©Copyright: the Author(s), 2020
Licensee PAGEPress, Italy
Emergency Care Journal 2020; 16:8972
doi:10.4081/ecj.2020.8972
Family ENgagement in Intensive Care Environments (FENICE):
A quasi-experimental study protocol
Matteo Danielis,1,2 Alvisa Palese,2Stefano Terzoni,3Anne Destrebecq4
1Department of Clinical Sciences and Community Health, University of Milan, Milan; 2Department of
Medical Sciences, University of Udine, Udine; 3School of Nursing, San Paolo Hospital, Milan; 4Department
of Biomedical Sciences for Health, University of Milan, Milan, Italy
Non commercial use only
patient care, is available.3We hypothesized that engaging families in
the care of critically ill patients could improve outcome both at fam-
ily and at patient levels. Thus, the aim of this project is to assess the
effects of a family engagement program on family members satis-
faction and on patients’ well-being and Quality of Life (QoL).
Materials and Methods
Research hypothesis and expected outcomes
i) At family level: Families of critically ill patients in the family
engagement group will show a higher general satisfaction as
compared to those families in the control group.
ii) At patient level: The family-involved patients’ group will show
a) an increased sense of well-being after the daily visiting peri-
od, and b) a better QoL after ICU discharge (three and six
months) as compared than the control group.
Study Design
A quasi-experimental study with two non-randomized groups
will be performed by following the CONSORT (CONsolidated
Standards Of Reporting Trials) guidelines.18 Figure 1 shows the
CONSORT flow diagram corresponding to the present study.
Setting
This study will be conducted in two general ICUs of an
Academic Hospital in the Northeast of Italy equipped with 900
beds. ICU A and B (beds = eight/each) provide care for both ven-
tilated and non-ventilated patients and mixed medical, surgical,
and trauma patients admitted directly through the Emergency
Department (ED) or other hospital wards. Each ICU environment
is a traditional open space, in which beds are separated by curtains.
Staff is composed of Registered Nurses (RNs), with a nurse-to-
patient ratio of 1:2, Medical Doctors (MD) and Nursing Assistants
(NAs). Generally, the average ICU Length Of Stay (LOS) is 5.0
days and the average ICU occupancy rate is 80.2%.
Sampling and sample
This study will involve two groups of family members of
patients who will be admitted to two ICUs. Specifically, in the
intervention group, family members will be actively involved in
the care of their relative; in the control group, patients will receive
the usual care provided only by the nurses. Given the setting of the
ICUs, with one open space shared by patients and visitors, partici-
pant randomization is not feasible. Moreover, to reduce the risk of
inter-group contamination, ICU-A will be assigned to the interven-
tion group and ICU-B to the control group.
A consecutive sampling method will be adopted to recruit the
expected family members of adult patients (≥18 years) in both the
intervention and the control groups in the same period, from July
2020 to June 2021. Inclusion and exclusion criteria for the study
population are shown in detail in Table 1. Patients’ withdrawal cri-
teria will be as follows: discharge from ICU, transfer to another
hospital, or death. The withdrawal criterion for family members
will be the unexpected suspension of daily visiting.
Article
Figure 1. Flow chart of the study protocol.
[Emergency Care Journal 2020; 16:8972] [page 123]
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[page 124] [Emergency Care Journal 2020; 16:8972]
Sample size calculation
The sample size calculation is based on the target population of
the study, which is composed of family members. Yet, no studies
have evaluated the specific effect of the implementation of a fam-
ily involvement program in ICUs on family’s’ perceived satisfac-
tion. However, previous studies estimated the effect of structured
communication and support programs on the satisfaction of family
members of critically ill patients with the FS-ICU tool,19,20 in
which the mean of FS-ICU total score before intervention was 55.3
(± 10.3) and after intervention was 61.4 (± 17.7). Based on this, a
sample of 188 patients (94 per each group) is the adequate require-
ment for the present study. This will result in a mid-scale effect
size of 0.41, at a 5% significance level with a power of 80% and
an allocation rate of 1:1. The sample size of this study was calcu-
lated with the software G*Power (version 3.1.9.4).21 Thus, each
family member will be included together with his/her loved one
who is being taken care for in ICU (94 per each group).
Despite light sedation being considered a routine therapy in the
ICU settings of this study, a variety of reasons, including neurolog-
ical, physiological, and communicative disabilities, can prevent
patients’ accurate estimation of their well-being by means of self-
reported measures. This group of patients may include uncon-
scious, deeply sedated and intubated patients, as well as those with
a cognitive impairment or a head and maxillofacial trauma. For
this reason, the researchers could not extend the sample size eval-
uation to the patient’ well-being outcome.
Intervention and control group
The intervention will be carried out in a single ICU (ICU-A) and
will engage family members in the care of their loved one with bed
physical exercises and simple care tasks, as reported in Table 2.
Trained nurses will provide families with written and verbal informa-
tion about their involvement in the above-mentioned care activities
(day 1: patient’s admission to ICU) and will strictly supervise their
engagement during the daily visiting hours (from day 2 to the trans-
ferring into another unit/ward). No intervention will be implemented
without the approval of nurses and physicians who daily evaluate
patients’ conditions. Each session of family involvement will last for
at least one hour per patient/day. In the case of signs of respiratory,
hemodynamic or neurovegetative distress, the session will be imme-
diately suspended by any HCP and the reasons of such decision will
be appropriately communicated to the family member. The interven-
Article
Table 1. Inclusion and exclusion criteria for patients and family members
Include Exclude
Adult (18 years of age and older) Pediatric population (< 18 years old)
If patient meets any of the following criteria:
Expected to stay in ICU at least three days to ensure adequate - Unsafe airways
exposure to ICU environment Airways - Hypoventilation/hyperventilation
Suffering from either high or low acuity conditions - PaO2/FiO2< 200mmHg
Breathing - pH < 7.30
- SpO2< 92%
- Respiratory rate > 35/min
- Heart rate < 50/min
- Heart rate > 130/min
Circulation - Mean arterial pressure between 60 to 80 mmHg
- Having mechanical heart/blood pressure support
(e.g. intra-aortic pump balloon)
- Intense diaphoresis
- Prone position
- Intracranial pressure monitoring
Disability - Hypersensitivity to touch (e.g. epileptic status)
- Psychomotor agitation or anxiety status (e.g. RASS
scores +1 to +5)
- Suppurating/infective/inflammatory/burned skin conditions
Exposure - Unstable fractures
- Peripheral intravenous line on the hands
- Terminally ill conditions
Adult (18 years of age and older) Pediatric population (< 18 years old)
Being the patient’s spouse, or in a blood relation, or next of kin, Lack of propensity or interest in participating in the study
and/or a person with whom the patient spends most of the time
Willing to visit the patient daily
Willing to participate in the study
RASS = Richmond Agitation Sedation Scale.
PatientFamily member
Non commercial use only
tion group will be formed of maximum eight patients, corresponding
to the ICU-A bed availability. In the ICU-B, patients will receive the
usual care consisting of a once-daily visit of at least one hour by fam-
ily members without their formal involvement in simple care.
Family members’ recruitment and involvement
Table 3 illustrates the recruitment and the involvement
processes for family members.
Data collection and measurements
All data will be collected daily by two researchers (MD, AP),
together with the nursing and medical staff of the Department of
Anaesthesia and Intensive Care, and professionally trained med-
ical and nursing students. Data collection will include both clinical
information and paper-based questionnaires. The anonymized
paper data will be stored by the researchers (see authors) of the
present study.
Sociodemographic and clinical data
At the time of admission to ICU, within the routinely admis-
sion assessment, patients’ demographics (age, gender), clinical
characteristics (diagnosis, comorbidities, Glasgow Coma Scale
[GCS] and Richmond Agitation-Sedation Scale [RASS] scores),
anthropometric measures (weight and height, both required to cal-
culate the Body Mass Index [BMI]), and previous habits (e.g., cig-
arette smoking) will be assessed. Simultaneously, the family mem-
ber’s information, including age, gender, education, relation to
patient and profession, will be collected with an ad hoc form.
Intervention
Every day, each activity performed by the family member in
the intervention group will be recorded in a pre-established form.
The grid will report data, time, type of activities, and their duration
(in minutes). In case of clinical deterioration during the interven-
tion, this will be immediately stopped by the nurse and/or physi-
cian in charge of the patient’s care. The intervention group will be
formed of maximum eight patients, corresponding to the ICU-A
bed availability.
Outcomes
At family level: Family satisfaction, assessed with the FS-ICU
tool,22,23 will be self-reported by family members within 48 hours
after a patient’s discharge from ICU.
At patient level: i) A patient’s sense of well-being will be
measured with a visual analogue scale (VAS) within 30 minutes
after the family involvement for the intervention group and in the
same span of time after the ICU visiting hours for the control
group;24 ii) The QoL will be investigated with the SF-1225 ques-
tionnaire within the first 48 hours after admission to assess pre-
admission QoL,26 at three and six months after ICU discharge by
telephone (patient or family members).
FS-ICU
The FS-ICU questionnaire includes 24 items; 14 inquire about
families’ satisfaction with care and 10 explore their satisfaction
with decision-making.22 All items are scored on a five-point Likert
scale (from 1=very dissatisfied to 5=very satisfied) except one
item which is dichotomous (yes/no). All questions included the
Article
Table 2. Family involvement: care activities
High acuity patients Low acuity patients
(when a patient is mechanically ventilated and under analgosedation) (when a patient is awake and collaborative)
Open and close the fingers Massages
Open and close the toes Arms and legs position changes
Physical presence with touch at least 60 minutes/day Washing face
Hair brushing Assisting with rehabilitation exercises
Reading texts of interest to the patient (e.g., newspapers) Encouraging/assisting with eating and drinking under nurses’ strict
supervision
Table 3. Details of the intervention protocol
Step 1 – Day one (patient’s admission to ICU)
The researcheraverifies if the patient meets the inclusion criteria.
If yes, the researcheraproceeds with step 2.
Step 2 – Day one (family members’ first visit to the ICU)
The researcheraverifies if the family member meets the inclusion criteria.
If yes, the researchera provides information about the intervention (including how to talk to the patient, advice on where to sit or stand at the bedside and on
how to open and close the interaction, as well as on the activities in which family members can be involved). The education session will last at least half an
hour. Moreover, the researchera discusses the study details with the family, identifies with them a family member as a reference, and ascertains decisions
regarding consent.
If the written consent is provided, data collection starts with step 3.
Step 3 – Day two to transfer to ward (during the ICU-stay)
The researcheraactively seeks opportunities to promote the family access to the patient, maximizing the time available for the family to be with s/he and
encouraging them to interact by talking and holding the patient’s hand. In addition, the researcherapromotes the implementation of the activities described in
Table 2 by recording them in the ad hoc grid.
On daily basis, the researcheraevaluates both the availability of the family member to participate, and the patient’s clinical conditions before engaging the
family member. Furthermore, the researcherasupervises all activities performed by the family member and provides feedback of encouragement.
ICU = Intensive Care Unit. a the authors and/or a member of the research team.
[Emergency Care Journal 2020; 16:8972] [page 125]
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[page 126] [Emergency Care Journal 2020; 16:8972]
“not applicable” optional response. Data will be collected from all
participants via self-administered questionnaires (written).
SF-12
Originally developed from the Medical Outcomes Study
(MOS) 36-item Short-Form Health Survey (SF-36), the SF-12 tool
consists of 12 questions and measures eight domains: physical
functioning, role-physical, bodily pain, general health, vitality,
social functioning, role-emotional, and mental health.25,27 A score
ranging from 0 (indicating the worse health status) to 100 (the best
health status) is assigned to each domain. Domain scores can be
summarized into a Physical Component Score (PCS) and Mental
Component Score (MCS). Data will be collected on all participants
via a combination of self-administered questionnaires (written)
during the ICU-stay and telephone interviews post-discharge.
Data analysis
Collected data will be entered into a Microsoft Excel® work-
sheet. All statistical analysis will be performed using the SPSS
software version 25 (SPSS Institute Inc., USA) and the statistical
significance set at p<0.05. Continuous variables (e.g. age, LOS)
will be displayed as mean and Standard Deviation (SD) if normally
distributed or median and quartiles otherwise. Normality will be
assessed by using the Kolmogorov-Smirnov test. Nominal vari-
ables (e.g. gender, reason of admission) will be calculated as
absolute numbers and percentage. Student’s unpaired t-test will be
used to analyze comparisons between means; Blom’s transforma-
tion will be used if normality test fails. Categorical variables will
be analyzed using the chi-squared test for independence. A conti-
nuity-corrected chi-squared statistic or Fisher’s exact test to evalu-
ate the null hypothesis of this study in case of expected frequencies
<5 in contingency tables will be applied. Moreover, the scores of
FS-ICU and SF-12 obtained from the two groups will be examine
using the analysis of covariance (ANCOVA).
Once half of the sample is reached (47 per each group), an ad
interim analysis will be performed to assess i) whether the inter-
vention is feasible in terms of family members acceptability and
willingness to participate in the study, and ii) whether a statistically
significant difference regarding family satisfaction between groups
is already noticeable (p-value set to 0.05). According to the results
(e.g., study dropout rates and consent refusal, treatment difference
larger or smaller than expected), the intervention and/or sample
size calculation will be changed, and a new research protocol will
be developed. However, this study has not stopping rules.
Ethical considerations
The current study will be conducted according to the criteria
set by the declaration of Helsinki; each patient legally authorizes a
representative and/or a family member will provide written
informed consent for all study procedures. Family members will be
informed about withdrawing from the study at any time without
affecting the care provided. The participants’ privacy and personal
information will be protected, and data will be anonymously ana-
lyzed. In addition, both ICUs are equipped to ensure patients’ pri-
vacy during the visiting and intervention time (e.g. large spaces,
beds separated by curtains). Lastly, this protocol was approved by
the Regional Ethics Committee of the Friuli Venezia Giulia
(CEUR-2020-Sper-012).
Results
Beginning from July 2020, 188 subjects are going to be
enrolled throughout the year. The latest data will be collected in
December 2021 to allow the completion of the follow-ups of all
participants.
Discussion
To our best knowledge, very few works19,20 have studied the
relationship between engaging families’ interventions and NSOs in
ICUs. This protocol constitutes a significant step in a research
agenda aimed at deepening the NSOs’ reliability across the ICUs
and useful to proxy monitoring the quality of hospital care. The
results of this study might have the potential to provide additional
evidence for family participation in bedside care in ICUs, and a
better understanding of how family members and critically ill
patients may benefit from the involvement itself.
Regarding dissemination, the results of the present study will
be firstly presented and discussed at professional meetings by con-
ducting a stakeholders’ consultation. Then, research findings will
be disseminated in scientific journals and at national and interna-
tional conferences.
Conclusions
Despite international bodies prioritizing the well-being of fam-
ilies and patients in ICU, current literature lacks practical under-
pinnings and examples to promote the involvement of family in the
care of the critically ill patients. This study protocol aimed at
examining the effect of a family engagement program on NSOs at
both family- and patient-level. The results may provide valuable
insight into the quality of care delivered. ICU nurses and physi-
cians need to become convinced that families can be routinely
involved in care activities; family engagement can optimize
patients’ outcomes including well-being and quality of life, and
increase family satisfaction with care in ICU.
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Aim: The aim of this study was to explore family members’ satisfaction with care and decision-making during the intensive care units stay and their follow-up needs after the patient’s discharge or death. Design: A cross-sectional survey study was conducted. Methods: Family members of patients recently treated in an ICU were participating. The questionnaire contented of background variables, the instrument Family Satisfaction in ICU (FS-ICU 24) and questions about follow-up needs. Descriptive and non-parametric statistics and a multiple linear regression were used in the analysis. Results: A total of 123 (47%) relatives returned the questionnaire. Satisfaction with care was higher scored than satisfaction with decision-making. Follow- up needs after the ICU stay was reported by 19 (17%) of the participants. Gender and length of the ICU stay were shown as factors identified to predict follow-up needs
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Background: Family-centered rounds involve purposeful interactions between patients' families and care providers to refocus the delivery of care on patients' needs. Objectives: To examine perspectives of patients' family members and health care providers on family participation in rounds in the surgical intensive care unit (ICU) and the potential use of telemedicine to facilitate this process. Methods: Patients' family members and surgical ICU care providers were recruited for semistructured interviews exploring stakeholders' perspectives on family participation in ICU rounds and the potential role of telemedicine. Thirty-two interviews were conducted, audio recorded, and transcribed verbatim. Common coding methods were facilitated by using NVivo 10. A mean coding agreement of 97.3% was calculated for 22% of transcripts. Results: Both patients' family members and health care providers described inconsistent practices surrounding family participation in ICU rounds as well as barriers to and facilitators of family participation. Family members identified 3 primary logistical challenges to participation in ICU rounds: distance to hospitals, work/family obligations, and the rounding schedule. Both family members and providers reported receptivity to virtual participation as a potential solution to these challenges. Conclusions: Understanding the barriers to and facilitators of family participation in ICU rounds is key to encouraging adoption of family-centered rounds. For families that live far away or have competing demands, telemedical options may facilitate participation.
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Background: To test the effect of information booklets on family members' satisfaction with decision-making around the care of critically ill patients in an intensive care unit. Design: Quasi-experiment with non-randomized study groups, using a pre and post-test design was used to test the effectiveness of the information booklet. Setting: The study was conducted in a medical center in Malaysia. Subjects: 84 family members of critically-ill patients were conveniently assigned to an intervention group and a control group. Intervention: On admission day after consented, completed pre test questionnaires. The intervention group received information booklet and will be explain between 20-30 minutes; control group, received routine information if any. Day-2: reinforcement on information about 10-20 minutes for intervention group only. Day-3: completion of the post-test questionnaire by both groups. Main outcome measures: The Family Satisfaction-Intensive Care Unit (FS-ICU) and Quality of Communication (QOC) instrument were used to measure families' satisfaction level. Results: There are significant differences in Family Satisfaction between the intervention and control groups. There was an increase in satisfaction across the pre-and post-test mean values, 54.05 (SD=10. 23) and 71.1 (SD=19.10), respectively; a significant increase in family satisfaction for the intervention group who received the information booklets. Conclusion: The study findings confirm that the information booklets results in a substantial increase in family satisfaction regarding decision-making for patients' care.
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Rehabilitation of people who are critically ill has received increased attention in recent years, although this has not extended to specifically facilitating family involvement. Engaging families in the rehabilitation arc has the potential to optimize outcomes. Likely benefits include redirecting family psychological distress into an active participatory role, humanizing the patient illness and recovery experience, and supporting staff and the health care system beyond the constraints of therapy time. This viewpoint explores why families should be engaged in critical care rehabilitation, gives an overview of the evidence for family participation in bedside care, and provides practical implementation strategies and signpost areas for future research.
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Objectives: Guidelines recommend offering family members of critically ill patients the option to attend interdisciplinary team rounds as a way to improve communication and satisfaction. Uncertainty remains around the benefits and risks. Design: We conducted an observational study to describe family participation in ICU rounds and its association with rounding processes. Setting: Rounds conducted under the leadership of 33 attending physicians in seven hospitals across three Canadian cities. Patients: Three hundred two individual rounds on 210 unique patients were observed. Interventions: Quantitative and qualitative data were collected using standardized observational tools. Measurements and main results: Among the 302 rounds observed, family attended in 68 rounds (23%), were present in ICU but did not attend in 59 rounds (20%), and were absent from the ICU in 175 rounds (58%). The median duration of rounds respectively for these three groups of patients was 20 minutes (interquartile range, 14-26 min), 16 minutes (interquartile range, 13-22 min), and 16 minutes (interquartile range, 10-23 min) (p = 0.01). There were no significant differences in prognostic discussions (35% vs 36% vs 36%; p = 0.99) or bedside teaching (35% vs 37% vs 34%; p = 0.88). The quality of rounds was not significantly associated with family attendance in rounds or presence in the ICU (quality score [1 (low) to 10 (high)] median 8 [interquartile range, 7-8] vs 7 [interquartile range, 6-9] vs 7 [interquartile range, 6-9]; p = 0.11). Qualitative analyses suggested that family attendance may influence relationship building, information gathering, patient and family education, team dynamics, future family meetings, workflow, and shared clinical decision-making. Conclusions: Our results suggest family attendance in ICU rounds is associated with longer duration of rounds, but not the frequency of trainee teaching, discussions of prognosis, or quality of rounds. Family attendance in rounds may enhance communication and complement family conferences.
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The call for meaningful patient and family engagement in healthcare and research is gaining impetus. Healthcare institutions and research funding agencies increasingly encourage clinicians and researchers to work actively with patients and their families to advance clinical care and research. Engagement is increasingly mandated by healthcare organizations and is becoming a prerequisite for research funding. In this article, we review the rationale and the current state of patient and family engagement in patient care and research in the intensive care unit (ICU). We identify opportunities to strengthen engagement in patient care by promoting greater patient and family involvement in care delivery and supporting their participation in shared decision-making. We also identify challenges related to patient willingness to engage, barriers to participation, participant risks, and participant expectations. To advance engagement, clinicians and researchers can develop the science behind engagement in the ICU context and demonstrate its impact on patient and process-related outcomes. Additionally, we provide practical guidance on how to engage, highlight features of successful engagement strategies, and identify areas for future research. At present, enormous opportunities remain to enhance engagement across the continuum of ICU care and research.
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Aim: To explore patients', families', and health professionals' experiences of a long-stay patient in an intensive care unit. Background: The fast-paced technologically driven intensive care unit environment, designed for a short patient stay, supports the provision of complex physiologically-focused care for those with life-threatening illnesses. Long stay patients with pronounced fundamental care needs fall outside predicted patient pathways, and nurses can find caring for these patients challenging. Design and methods: A longitudinal, qualitative, multi-case study of six cases from four New Zealand units. Case participants were patients, family members, nurses and other health professionals. Data collection methods included observation, conversations, interviews, and document review. Data were analysed using thematic analysis, vignette development, and trajectory mapping. Results: Challenges and successes of providing fundamental care for long-stay ICU patients are attributed to two interlinked factors. Firstly, the biomedical model influences ICU nursing practices, resulting in prioritising tasks and technology for patient survival while simultaneously devaluing relational and comfort work. Fundamental psychosocial needs such as family presence, comfort, relationships and communication may be unmet. Secondly, the unit environment and culture have a significant impact on long-stay patients' ICU experiences and form physical and psychological barriers to families being present and involved. Some nurses negotiated these challenges to provide fundamental, patient and family centred care by adopting an approach of knowing the patient and these nurses reported satisfaction when seeing patients' positive responses. Conclusion: The care environment and culture provide challenges to the provision of patient and family centred care for long-stay patients, however when nurses prioritise knowing their patient these challenges can be overcome and patient and family distress reduced with the potential to improve patient outcomes. Relevance to clinical practice: Recognition that patients have fundamental care needs irrespective of the setting where they receive care. Intensive care environments and cultures create challenges for nurses when there is such a heavy burden of physiological needs to be met and technological tasks to be undertaken, with a focus on acuity, however, improving provision fundamental care can result in positive patient outcomes. This article is protected by copyright. All rights reserved.
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The call for meaningful patient and family engagement in research has recently gained considerable momentum. In this article, we define patient and family engagement broadly and specifically in clinical research. Using a multicenter, North American weaning trial as an exemplar, we describe our early experiences as clinical researchers with patient and family engagement. We illustrate the role of our Patient and Family Advisory Committee in trial design and implementation. Through our experiences, we share our insights regarding the perceived opportunities and also highlight some challenges associated with engaging patients and family engagement in critical care research. Although ‘engagement science’ is in its infancy, engaging patients and families in research holds promise as a novel research paradigm that will not only provide new insights into the questions, methods, and outcomes used in ICU research, but will also make investments in research more accountable, and ensure a strong ‘patient and family centered focus’ of our research.
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Context: Family members of critically ill patients who participate in research focused on palliative care issues have been found to be systematically different from those who do not. These differences threaten the validity of research and raise ethical questions about worsening disparities in care by failing to represent diverse perspectives. Objectives: This study's aims were to explore: 1) barriers and facilitators influencing family members' decisions to participate in palliative care research; and 2) potential methods to enhance research participation. Methods: Family members who were asked to participate in a randomized trial testing the efficacy of a facilitator to improve clinician-family communication in the ICU (FCS). Family members who participated (n=17) and those who declined participation (n=7) in FCS were interviewed about their recruitment experiences. We also included family members of currently critically ill patients to assess current experiences (n=4). Interviews were audio-recorded and transcribed. Investigators used thematic analysis to identify factors influencing family members' decisions. Transcripts were co-reviewed to synthesize codes and themes. Results: Three factors influencing participants' decisions were identified: Altruism, Research Experience, and Enhanced Resources. Altruism and Research Experience described intrinsic characteristics that are less amenable to strategies for improving participation rates. Enhanced Resources reflects families' desires for increased access to information and logistical and emotional support. Conclusions: Family members found their recruitment experiences to be positive when staff were knowledgeable about the ICU, sensitive to the stressful circumstances, and conveyed a caring attitude. By training research staff to be supportive of families' emotional needs and need for logistical knowledge about the ICU, recruitment of a potentially more diverse sample of families may be enhanced.
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Aims: To describe the nursing diagnoses, outcomes and interventions for patients admitted to intensive care units and to assess their possible relation with classical outcomes like length of stay and mortality. Background: The analysis of nursing diagnosis frequencies may help to estimate the patients' complexity and the need for nursing interventions and can predict hospital outcomes. Nonetheless, few studies were conducted on critical patients. Design: Prospective cohort observational study. Methods: Between 15 July-31 October 2013 we collected the above-described nursing parameters of 100 subjects throughout their stay in intensive care. We classified the parameters according to established taxonomies. The independent association between the number of nursing diagnoses and length of stay/mortality was investigated with multiple regressions. Results: We found an average of 19 diagnoses, 24 outcomes and 60 interventions per patient. Most frequently, the plans of care involved support for self-care deficits or interrupted family processes. They also included strategies to prevent infection, disuse syndrome and impairment of skin integrity. Nineteen nursing diagnoses were significantly related with mortality or length of stay in bivariate analyses. In regression models, the number of such diagnoses explained 29·7% of the variance in length of stay and was an independent predictor of mortality. Conclusion: In critically ill patients, the analysis of nursing diagnoses, outcomes and interventions confirmed an intense activity in response to a broad spectrum of patient needs. The number of nursing diagnoses allowed to predict patient outcomes.