Patient and family engagement in the ICU: Report from the task force of the World Federation of Societies of Intensive and Critical Care Medicine

doi:10.1016/j.jcrc.2018.09.006

Journal of Critical Care

Volume 48, December 2018, Pages 251-256

https://doi.org/10.1016/j.jcrc.2018.09.006 Get rights and content

Highlights

•
Many patient/family engagement initiatives are being implemented worldwide, however variation exists in how they are integrated in the ICU.
•
Barriers to patient/family engagement in the ICU include but are not limited to: unit culture, staff resistance, and uncertainty about the benefits.
•
Strategies for family engagement include daily communication, regular family meetings, and flexible family presence including on rounds.
•
Further research and shared successes in translating research into practice remain necessary to standardize practice for family engagement in the ICU.

Abstract

Purpose

Patient and family engagement plays an important role in the intensive care unit (ICU), however the degree to which practices are being implemented globally is not known.

Materials

To provide insights, a task force of the World Federation of Societies of Intensive and Critical Care Medicine conducted a cross-sectional survey.

Results

A total of 345 responses were received from 40 countries. Varying practices with respect to patient and family engagement were reported. Majority of those responding to individual survey questions (n=109, 61.2%) provided written materials on the ICU to family members. Just over half (n=184, 53.8%) of respondents identified that structured patient and family care conferences were held to review goals of care. Practices such as open visitation were reported by 39.6% (n=136), and family presence during resuscitation were reported to be fully (12%, n=41) or somewhat adopted (33%, n=113) by less than half of respondents. ICU diaries, music or pet therapy, or the use of a patient and family advisory group were reported by less than half of respondents.

Conclusions

We document and hence provide successful implementation techniques, tactics, and strategies that could help clinicians to address barriers to implementing patient and family engagement in the ICU.

Section snippets

Background

A growing body of literature internationally highlights the benefits of patient and family engagement in the Intensive Care Unit (ICU). Several studies have addressed patient centered care and strategies to engage family members to promote best outcomes for critically ill patients [1,2]. Providing high quality family-centered care has been identified as a basic skill for ICU clinicians [3]. Internationally, the focus on meaningful patient and family engagement in the ICU has gained the

Objective

The purpose of this international cross-sectional survey was to collect information on patient and family engagement initiatives in the ICU, as well as barriers and strategies to implementation.

Methods

An online survey was used to collect information from WFSICCM country members. Institutional review board approval for the study was received from Rush University Medical Center, Chicago, Illinois, USA. A 21 item survey assessed information on patient and family centered care practices; ICU demographic information including type of ICU, bed size, typical ICU length of stay; and the city, region, and country location of the ICU. The survey consisted of an overview informing participants that the

Results

A total of 345 responses were received from 40 countries (Fig. 1; Table 1). A response rate could not be calculated as it was not known how many persons received the email survey request. The ICUs settings represented university and academic facilities (52.9%, n = 181), public hospitals (25.1%, n = 86), military/government (4.7%. n = 16) and others such as community, private and rural critical access hospitals (17.3%, n = 59). ICU specialty types included mixed medical surgical ICUs (73.5%,

Discussion

The results of the study indicate that while a number of patient and family engagement initiatives are being implemented in the ICU worldwide, there is variation in the degree to which best practices are integrated in clinical practice. Additionally, as reported in this study, barriers to implementing patient and family engagement in the ICU exist universally, even in countries that have adopted practices such as open flexible family presence. Among the types of patient and family engagement

Summary and conclusions

While it is evident that ICUs globally are adopting practices to create an environment that promotes patient and family involvement, continued efforts are needed to optimize meaningful patient and family engagement. Additional research on the benefits of family engagement in the ICU would help to provide an evidence base to advocate for its consideration in all ICU settings. Additionally, sharing successful implementation techniques, tactics, and strategies can help clinicians to address

Acknowledgement

This manuscript reports on the work of a World Federation of Societies of Intensive and Critical Care Medicine workgroup.

Conflict of interest

The authors disclose they have no conflicts of interest.

References (30)

J. Myburgh et al.
End-of-life care in the intensive care unit: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2016)
L. Blanch et al.
Triage decisions for ICU admission: Report from the task force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2016)
P. Amin et al.
The intensive care unit specialist: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2016)
T. Baker et al.
Critical care of tropical disease in low income countries: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2017)
J. Hidalgo et al.
Viral hemorrhagic fever in the tropics: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2017)
G.S. Silva et al.
Encephalitis and myelitis in tropical countries: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(2017)
G.S. Silva et al.
Zika virus: Report from the Task Force of World Federation of Societies of Intensive and Critical Care Medicine
J Crit Care
(Aug 2018)
H.T. Stelfox et al.
A scoping review of patient discharge from intensive care opportunities and tools to improve care
Chest
(2015)
A.P. Marshall et al.
A multi-faceted, family-centred nutrition intervention to optimize intake of critically ill patients: The OPTICS feasibility study
Aust Crit Care
(2016)
J.H. Goldfarb et al.
Outcomes of patient- and family-centered care interventions in the ICU: A systematic review and meta-analysis
Crit Care Med
(2017)

M. Garrouste-Orgeas et al.

The ICU-Diary study: Prospective, multicenter comparative study of the impact of an ICU diary on the wellbeing of patients and families in French ICUs

Trials

(2017)

R.I. Gerritsen et al.

New developments in the provision of family-centered care in the intensive care unit

Intensive Care Med

(2017)

K.E. Burns et al.

Am J Respir Crit Care Med

(2018)

J.E. Davidson et al.

For the guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. International guidelines for family-centered care in neonatal, pediatric and adult ICU

Crit Care Med

(2017)

J.C. Marshall et al.

What is an intensive care unit? A report of the task force of the World Federation of Societies of Intensive and Critical Care Medicine

J Crit Care

(2016)

Cited by (70)

Healthcare professionals perspective of the facilitators and barriers to family engagement during patient-and-family-centered-care interdisciplinary rounds in intensive care unit: A qualitative exploratory study
2024, Intensive and Critical Care Nursing
Family engagement in care for critically ill patients remains an inconsistent practice and an understudied area of nursing science. Rounds for this study is an interdisciplinary activity conducted at the bedside in partnership with patients, their families, and the health care professionals involved in providing the care. We sought to explore and describe the facilitators and barriers to family engagement during patient and family-centered interdisciplinary rounds in the intensive care unit.
This qualitative exploratory study is part of a multisite experimental study (#Pro2020001614; NCT05449990). We analyzed the narrative data from the qualitative questions added in the survey from 52 healthcare professionals involved in a multisite experimental study using Braun and Clarke’s (2006) constructionist, contextualist approach to thematic analysis.
The study was conducted in the intensive care unit of two medical centers.
The findings presented are themes illuminated from thematic analysis namely communication gaps, family’s lack of resources, familial and healthcare providers’ characteristics, lack of leadership, interprofessional support, policy, and guidelines.
Family engagement in critical care during interdisciplinary rounds occurred within the intersectionality among families, healthcare professionals’ practice, and organizational factors. The facilitators for family engagement include supported, championed, and advocated-for family adaptation, teams, and professional practice, and organizational receptivity, and support. Communication and leadership are the precursors to family engagement.
The findings added new knowledge for exploring the nature and scope of family engagement in critical care. Family engagement must be incorporated into the organizational vision and mission, and healthcare delivery systems.
There is a need to further investigate the resources, organizational support mechanisms, and systems that affect patients, families, and healthcare professionals, and the establishment of policies that will aid in reducing barriers to family engagement in the intensive care unit.
Family presence during resuscitation: Perceptions and confidence of intensive care nurses in an Australian metropolitan hospital
2024, Australian Critical Care
While literature supporting family presence during resuscitation (FPDR) was first published over three decades ago, the practice remains controversial. Benefits have been confirmed, and barriers to practice identified through international research. The extent that FPDR is practised in Australian intensive care units (ICUs) is currently unknown.
To examine ICU nurses’ previous exposure and experiences with FPDR To establish their perceptions of the risks and benefits of the practice, as well as their confidence participating.
A descriptive, cross-sectional study design, using validated FPDR risk–benefits and confidence scales, was distributed electronically to registered nurses working within a single adult ICU in Australia.
Fifty-six percent (n = 45) of respondents had never witnessed FPDR. Respondents were divided on whether families had the right to be present or should be given the option. ICU nurses perceived benefits for families but not for the patients involved or for the nurses participating. Nurses indicated they felt conflicted between the needs of the family, preserving the quality of the care delivered to a deteriorating patient, and protecting the safety of all stakeholders. Support for FPDR was often dependent on the availability of resources such as a family-support person.
This research establishes that ICU nurses lacked exposure to FPDR but were confident in their ability to perform, be observed, and support families during a resuscitation event. Therefore, confidence is likely not a factor in a decision to reject the practice. Further education is indicated as there remained a reluctance to adopt FPDR practice, despite many of the barriers reported having already been largely disproven by the available literature. Institutions have a role in policy development, ensuring adequate resources, and education.
The EyeControl-Med device, an alternative tool for communication in ventilated critically ill patients: A pilot study examining communication capabilities and delirium
2023, Journal of Critical Care
Communication with ventilated patients in the Intensive care unit (ICU) is challenging. This may lead to anxiety and frustration, potentially contributing to the development of delirium. Various technologies, such as eye-tracking devices, have been employed to facilitate communication with varying grades of success. The EyeControl-Med device is a novel technology that delivers audio content and allows patients to interact by eye movements and could potentially allow for better communication in this setting. The aim of this exploratory concept study was to assess communication capabilities and delirium incidence using the EyeControl-Med device in critically ill patients unable to generate speech.
A single-arm pilot study of patients in a mixed ICU. Patients were approached for consent if they were invasively ventilated and/or tracheotomized, hence unable to generate speech, but had no severe cognitive or sensory impairment that could prevent proper usage. Patients underwent at least 3 sessions with the EyeControl-Med device administered by a speech-language pathologist. Communication and consciousness were assessed using the Loewenstein Communication Scale (LCS) tool during the first and last sessions. Delirium was assessed using a computerized CAM-ICU questionnaire.
15 patients were included, 40% of whom were diagnosed with COVID-19. All patients completed three to seven usage sessions. The mean LCS score improved by 19.3 points (p < 0.0001), with each of its five components showing significant improvements as well. The mean number of errors on the CAM-ICU questionnaire decreased from 6.5 to 2.5 (p = 0.0006), indicating a lower incidence of delirium. No adverse effects were observed.
The EyeControl-Med device may facilitate communication and reduce the manifestations and duration of delirium in ventilated critically ill patients. Controlled studies are required to establish this effect.
Family Participation in Cardiovascular Intensive Care Unit Rounds: A Pilot Randomized Controlled Trial
2023, CJC Open
Observational studies have shown an association between family participation in intensive care unit (ICU) rounds and better family-centred outcomes. However, evidence from randomized studies on the impact of family participation in ICU rounds is lacking. The objective of this pilot study was to evaluate the feasibility of a randomized trial for family participation in ICU rounds and obtain preliminary estimates of effect to inform a future effectiveness trial.
Family members of patients in the cardiovascular ICU at an academic tertiary-care hospital were randomized to the intervention (participation in rounds) or usual-care group. Following ICU discharge, family member participants completed the family satisfaction (Family Satisfaction in the Intensive Care Unit Survey [FS-ICU]). Feasibility metrics were recruitment (≥ 10 participants per month), uptake (≥ 80%), and follow-up (≥ 80%). Effectiveness was measured by between-group differences in survey score at follow-up.
A total of 27 participants were recruited over 8 weeks. A total of 44% of family members (27 of 61) who were approached agreed to participate. Nonparticipation was due most commonly to lack of interest (N = 20; 64%). All family members randomized to the intervention (N = 16) were present for rounds (100% uptake). Follow-up data were available for 23 participants (85%). Family members who participated in rounds had a higher level of satisfaction with care, compared to the usual-care group (87.3 vs 74.7, P = 0.03, respectively).
Family participation in cardiovascular ICU rounds is feasible and effective at improving family satisfaction. Our findings will inform the design of a planned, larger, multicentre study to evaluate the effectiveness of family participation in ICU rounds to improve family-centred outcomes. Trial registration number: NCT05528185.
Des études d’observation ont montré qu’il y avait un lien entre une participation des familles aux tournées à l’unité des soins intensifs (USI) et de meilleurs résultats centrés sur la famille. Toutefois, il existe peu de données issues d’études à répartition aléatoire sur l’effet d’une participation des familles aux tournées à l’USI. L’objectif de cette étude pilote était d’évaluer la faisabilité d’un essai à répartition aléatoire sur la participation des familles aux tournées à l’USI et d’obtenir des estimations préliminaires de l’effet pour orienter un futur essai sur l’efficacité.
Des membres de la famille de patients admis à l’USI cardiovasculaires d’un hôpital universitaire de soins tertiaires ont été affectés de façon aléatoire à l’intervention (participation aux tournées) ou au groupe de soins habituels. Après la sortie de l’USI, les participants ont rempli le questionnaire sur la satisfaction des familles à l’égard de l’unité des soins intensifs (FS-ICU, pour Family Satisfaction in the Intensive Care Unit). Les paramètres de faisabilité étaient le recrutement (≥ 10 participants par mois), l’adhésion (≥ 80 %) et le suivi (≥ 80 %). L’efficacité a été mesurée par les différences des scores au questionnaire entre les groupes lors du suivi.
Au total, 27 participants ont été recrutés sur une période de 8 semaines. Chez les membres des familles qui ont été invités à participer, 44 % (27/61) ont accepté. Le refus était le plus souvent attribuable à un manque d’intérêt (n = 20; 64 %). Tous les membres des familles affectés à l’intervention (n = 16) ont été présents pour les tournées (adhésion de 100 %). Des données de suivi ont été obtenues pour 23 participants (85 %). Le taux de satisfaction à l’égard des soins a été plus élevé chez les membres des familles ayant participé aux tournées que dans le groupe de soins habituels (87,3 % contre 74,7 %; p = 0,03; respectivement).
La participation des familles aux tournées dans les USI cardiovasculaires est faisable et est efficace pour améliorer la satisfaction des familles. Nos résultats guideront la conception d’une plus grande étude multicentrique planifiée visant à évaluer l’efficacité de la participation des familles aux tournées dans l’USI pour améliorer les résultats centrés sur la famille. Trial registration number: NCT05528185.
Evolution of Visiting the Intensive Care Unit
2023, Critical Care Clinics
Interventions using digital technology to promote family engagement in the adult intensive care unit: An integrative review
2023, Heart and Lung
Family engagement is a key component of safe and effective care in the intensive care unit (ICU). As the COVID-19 pandemic has accelerated the adoption of digital technologies in healthcare settings, it is important to review the current science of family engagement interventions in the ICU using digital technology.
This integrative review aimed to identify and evaluate studies that used digital technology to promote family engagement in adult ICUs and synthesize study findings.
Following the methodology of Whittemore and Knafl, PubMed, CINAHL, Web of Science, and Scopus were searched. We included studies conducted in the adult ICU setting; involved family engagement during ICU stay; and used digital technology to engage family members. We excluded studies that were not peer-reviewed or in English. Study findings were assessed using the model of family engagement in the ICU
Of 2702 articles, 15 articles were analyzed. Various technologies (e.g., web-, tablet-, or SMS-based tools, video-conferencing, etc.) were used to provide information; augment the decision-making process; provide virtual access to family conferences or interdisciplinary rounds. While varying among interventions, “Information sharing” and “activation and participation” were most commonly addressed within the family engagement model. In studies that addressed the components of family engagement more comprehensively, interventions enabled tailoring of information with two-way communication and active family involvement in decision-making processes.
Future research should use more robust methods and develop interventions with close inputs from families. We recommend using conceptual components of family engagement to ensure comprehensiveness of the intervention.

View all citing articles on Scopus

View full text

EthicsPatient and family engagement in the ICU: Report from the task force of the World Federation of Societies of Intensive and Critical Care Medicine

Highlights

Abstract

Purpose

Materials

Results

Conclusions

Section snippets

Background

Objective

Methods

Results

Discussion

Summary and conclusions

Acknowledgement

Conflict of interest

J Crit Care

J Crit Care

J Crit Care

J Crit Care

J Crit Care

J Crit Care

J Crit Care

Chest

Aust Crit Care

Outcomes of patient- and family-centered care interventions in the ICU: A systematic review and meta-analysis

Crit Care Med

The ICU-Diary study: Prospective, multicenter comparative study of the impact of an ICU diary on the wellbeing of patients and families in French ICUs

Trials

New developments in the provision of family-centered care in the intensive care unit

Intensive Care Med

Am J Respir Crit Care Med

For the guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU. International guidelines for family-centered care in neonatal, pediatric and adult ICU

Crit Care Med

What is an intensive care unit? A report of the task force of the World Federation of Societies of Intensive and Critical Care Medicine

J Crit Care

Ethics
Patient and family engagement in the ICU: Report from the task force of the World Federation of Societies of Intensive and Critical Care Medicine