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Promoting Family Engagement in the ICU: Experience From a National Collaborative of 63 ICUs*

Kleinpell, Ruth PhD, RN, ACNP, FCCM1,2; Zimmerman, Jerry MD, PhD, FCCM3; Vermoch, Kathleen L. MPH, MT(ASCP)SM4; Harmon, Lori A. RRT, MBA, CPHQ4; Vondracek, Hugh MSc, ϕBK2; Hamilton, Rebekah PhD, RN2; Hanson, Bruce BS, MDiv, PAC5; Hwang, David Y. MD, FAAN, FCCM, FNCS6,7

doi: 10.1097/CCM.0000000000004009
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Objectives: As part of an improvement program targeting ICU, a national collaborative was launched to help hospitals implement patient- and family-centered care engagement initiatives.

Design: Ten-month quality improvement collaborative.

Setting: Guided by a national patient and family advisory group, participating teams implemented an individual project including open visitation; integrating families on rounds; establishing a patient and family advisory committee; using patient and family diaries, among others.

Subjects: Sixty-three adult and PICU teams from both academic and community hospitals in 34 states participated.

Interventions: Monthly team calls, quarterly webinars, newsletters, an online eCommunity, and team reporting assignments were used to facilitate project implementation.

Measurements and Main Results: The Family Satisfaction with Care in the ICU 24 was used to assess family satisfaction. Clinician perceptions were assessed with the Institute for Patient- and Family-Centered Care Self-Assessment Inventory. Thematic analysis was used to explore narrative data captured from team reports of project barriers, facilitators, and the experience of participating in the collaborative. A total of 2,530 family member and 3,999 clinician surveys were completed. Postimplementation, family members reported statistically significant increases in overall family satisfaction, satisfaction with decision-making, and satisfaction with quality of care (Family Satisfaction with Care in the ICU mean score change range 0.83–1.24; p ≤ 0.027). Clinicians reported that opportunities for families to participate as members of the care team increased. Major barriers included lack of buy-in and ability to promote change in the clinical setting, managing the workload of implementation, and funding to support initiatives.

Conclusions: A national collaborative format was useful to assist ICU teams to implement patient- and family-engagement initiatives. Enlisting stakeholder support, engaging unit-based champions, and highlighting benefits of family engagement can help ICU teams to promote family member involvement and engagement.

1Vanderbilt University School of Nursing, Nashville, TN.

2Rush University College of Nursing, Chicago, IL.

3Seattle Children’s Hospital, Harborview Medical Center, University of Washington School of Medicine, Seattle, WA.

4Society of Critical Care Medicine, Chicago, IL.

5Patient-Centered Outcomes Research Institute, Washington, DC.

6Division of Neurocritical Care and Emergency Neurology, Department of Neurology, Yale School of Medicine, New Haven, CT.

7Center for Neuroepidemiology and Clinical Neurological Research, Yale School of Medicine, New Haven, CT.

*See also p. 1800.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s website (http://journals.lww.com/ccmjournal).

Dr. Kleinpell disclosed that this article reports on the work of a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (6262-SCCM), and disclosed that she served as Society of Critical Care Medicine (SCCM) President-Elect and President during the time of the project. Drs. Kleinpell and Ms. Harmon received support for article research from PCORI. Dr. Zimmerman’s institution received funding from the National Institutes of Health and Immunexpress (research funding), and he received funding from Elsevier Publishing (royalties for co-editing Pediatric Critical Care) and SCCM (travel reimbursement to attend board meetings). Ms. Harmon’s institution received funding from PCORI. Mr. Hanson received funding from Eugene Washington PCORI Engagement Award for the “Improving Care for Critically Ill Patients and Families Through Research Dissemination and Implementation” SCCM Collaborative. Dr. Hwang received funding from SCCM. The remaining authors have disclosed that they do not have any potential conflicts of interest.

Address requests for reprints to: Ruth Kleinpell, PhD, RN, Vanderbilt University School of Nursing, 461 21st Avenue South 407 GH, Nashville, TN 37240. E-mail: ruth.kleinpell@vanderbilt.edu

It is well accepted that healthcare in general has evolved away from a “disease-centered model” to a “patient-centered model” of care, where patients and families are active participants in their own care. This becomes especially important when patients are hospitalized for a critical illness, as this is often an unexpected and stressful experience for both patients and their family members (1,2). However, while involving family members in ICUs is acknowledged as particularly important, the complexity of the ICU environment, compounded by multiple patient comorbidities and high acuity levels, makes it a unique and challenging area of project implementation.

A number of patient- and family-focused interventions have been found to be useful in the ICU (1,3–5). Despite these studies, implementing specific initiatives to promote family engagement is often perceived to be difficult by clinicians (4,6–8). As a result, research strategies that have been proven to be beneficial to enhance patient- and family-centered approaches to care are not being fully applied to improve clinical care practices. Efforts toward implementation are often limited to single-center initiatives (1,4,9).

To promote ICU family engagement initiatives across the United States, the Society of Critical Care Medicine (SCCM)—an international organization of healthcare providers including physicians, nurses, pharmacists, respiratory therapists, dieticians, and others—launched a national collaborative for selected adult and PICU teams with interest in family-centered care improvement. The initiative engaged each ICU team participating in the collaborative to implement a new patient and family engagement initiative over a 10-month period. Projects varied among centers, and each team received coaching, support, and networking opportunities during the duration of the collaborative. Standardized measurements of family satisfaction with ICU care, clinician perception of family engagement, and metrics relevant to each center’s type of family engagement project were conducted at participating centers both before and after project implementation, with pre- and postimplementation data for the entire collaborative compared in aggregate. Thematic analysis was also used to explore the narrative data captured from team reports of project barriers, facilitators, and experience of participating in the collaborative.

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MATERIALS AND METHODS

Supported with national funding, the collaborative enabled participating ICU teams to design, plan, and implement a local improvement initiative. To facilitate implementation of these initiatives that varied from site to site (10), the collaborative created partnerships among participating teams promoting the same improvement work. The Institute for Healthcare Improvement model for achieving a breakthrough improvement learning system was used to help the teams focus on improvement implementation (11,12). The model uses the “Plan-Do-Study-Act” cycles of learning for process improvement by identifying changes to be made. Institutional review board exempt status was received for the project.

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Collaborative Planning

A nationwide nine-member patient and family advisory group provided insights into the planning and implementation of the collaborative. The patient and family advisory group consisted of five former ICU patients, two family members, and two members of the clergy who had worked with ICU patients and family members in hospital settings. A Patient and Family Advisory Group Information Manual was developed, modeled after the Agency for Healthcare Research and Quality’s Guide to Patient and Family Engagement (13), to guide the advisory group. Leaders of the collaborative included the coinvestigators of the Patient-Centered Outcomes Research Institute grant that supported the initiative, and faculty who were experts in family-centered care, guided by the patient and family advisory group. An in-person meeting was held with the patient and family advisory group to review plans for the collaborative and the manual components, including responsibilities and expectations of being an engaged advisory group member.

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Site Selection

A nationwide call for applications for ICU teams interested in participating in the collaborative was issued, and 180 applications were received. Review and selection of the participating 63 ICU teams were based on their self-proposed local engagement project, geographic representation, and the involvement of pediatric and adult ICU teams from both community and academic hospitals. An initial “kick-off” meeting brought representatives from the teams together, helped to establish organizational commitment, and outlined key steps in local project implementation. Team representatives were physician and nurse champions from each respective institution, supported with submission of an agreement letter of participation from each ICU’s medical and nursing director.

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Local Projects

Examples of local projects proposed and implemented among participating sites during the 10-month collaborative period were based on evidence-based literature on patient- and family-centered care and included formation of a local patient/family advisory group; structuring family care conferencing; making diaries available to patients and families; orienting families to the critical care unit; introducing music therapy; creating open visitation policies; creating family information pamphlets; introducing pet therapy; and organizing family-centered rounds, among other projects. Sites identified the specific project they would implement based on institutional preferences and priorities.

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Collaborative Support for Participating Sites

A project webpage was developed to provide collaborative participants with learning resources, including slides and materials from the launch meeting, patient- and family-centered care and engagement references, among other resources.

Additional components of the collaborative included as follows:

  • 1) Monthly collaborative calls to assist teams through the phases of planning and implementation (Online Supplemental Content, Supplemental Digital Content 1, http://links.lww.com/CCM/E942);
  • 2) Use of an e-Community list serve for collaborative postings, networking, and sharing of resources, including sample data collection forms and relevant research studies;
  • 3) Monthly newsletter for updates, announcements, resources for project implementation, and strategies for sustaining change;
  • 4) Bimonthly e-Community assignments for team reporting to help facilitate project work and promote team engagement (Online Supplemental Content, Supplemental Digital Content 1, http://links.lww.com/CCM/E942);
  • 5) Quarterly educational web conferences addressing topics aimed at facilitating project implementation (Online Supplemental Content, Supplemental Digital Content 1, http://links.lww.com/CCM/E942).
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Measurements and Analysis

Family satisfaction and clinician perception survey data were requested from all participating sites at the beginning and end of the collaborative. Participating sites solicited voluntary anonymous family and clinician surveys, based on willingness to complete a survey. The Family Satisfaction with Care in the ICU (FS-ICU 24) Survey, a widely used tool with established reliability and validity (14), was used to collect family perceptions of care. Satisfaction with each item listed on the survey was obtained using a 5-point scale and recoded onto a 100-point scale for analysis per the authors’ instructions (14). The Patient- and Family-Centered Adult Intensive Care: A Self-Assessment Inventory from The Institute for Family-Centered Care (15) was used to collect information from ICU clinicians on perceptions of family engagement and unit climate for supporting patient and family engagement. The inventory was used to assess a unit’s performance related to patient and family support, information/education for patients and families, and patterns of care using a 5-point scale ranging from not at all to very well. Narrative data were collected at midpoint and at the end of the collaborative, based on the type of initiative implemented, for example, number of patient care conferences held and percentage of patient’s having a patient care conference. Additionally, after the collaborative ended, participating teams were asked to rate how valuable they had found various components of the collaborative using a 5-point scale.

Collaborative data were centrally collected and managed using web-based Research Electronic Data Capture (REDCap) tools (16), hosted at Rush University. Collaborative teams collected data via team-specific URLs in order to maintain data segregation between collaborative members. Family and clinician data were analyzed at the site-, intervention-, and collaborative-level using IBM SPSS Statistics for Windows, Version 22.0 (IBM Corp., Armonk, NY). Mann-Whitney U nonparametric rank-sum tests were used to compare family and clinician perceptions pre- and postintervention because both datasets were left-skewed at both time points. Surveys regarding the usefulness of the collaborative itself from sites were analyzed using standard descriptive statistics.

Thematic analysis was used to explore narrative data obtained from project team reports of barriers and facilitators for each individual project, and the summative assessment of experiences at the end of the collaborative. The qualitative data were imported into a web-based data management system, Dedoose (17). Data were compared both within and across project type. Participants received site-specific reports of their project metrics to support and facilitate their ongoing improvement efforts.

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RESULTS

Sites

The 63 participating teams represented both adult (82%) and pediatric (18%) ICUs in academic (69%) and community hospital (31%) settings, from 34 of the 50 United States. Table 1 outlines the types and number of each local family-centered care initiative implemented at participating sites.

TABLE 1.

TABLE 1.

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Survey Measurements

A total of 2,530 family member and 3,999 clinician surveys were completed. Preimplementation data were collected over a 4-month period from 2,942 clinicians and 1,705 family members. Postimplementation data were collected over a 4-month period from 825 family member and 1,057 clinicians. Demographic data regarding family and clinician participants are listed in Tables 2 and 3, respectively.

TABLE 2.

TABLE 2.

TABLE 3.

TABLE 3.

Postimplementation, family members reported statistically significant increases in: overall family satisfaction (1.27% [mean percentage change]; p = 0.013); perceptions of quality of care (0.97%; p = 0.027), and perceptions of the coordination of care (1.6%; p = 0.026); satisfaction with decision-making (1.47%; p = 0.02); feelings of inclusion in the decision-making process (3.16%; p = 0.014); feeling supported during decision-making (3.28%; p = 0.002); and feelings of having control over the care of their loved one (2.96%; p = 0.011). The FS-ICU index total score mean score change was 1.08, the FS-ICU quality of care subscale mean score change was 0.83, and the FS-ICU satisfaction with decision-making subscale mean score change was 1.24 (Table 4; and Online Supplemental Content, Supplemental Digital Content 1, http://links.lww.com/CCM/E942). Individual reports were provided to each team with data specific to their unit project. Full measures of dispersion and test statistics are reported in Table 4 and Online Supplemental Content (Supplemental Digital Content 1, http://links.lww.com/CCM/E942).

TABLE 4.

TABLE 4.

Postimplementation, clinicians reported: increased opportunities for families to participate on rounds (7.88%; p < 0.001) and participate in interdisciplinary meetings to plan care (8.8%; p < 0.001); increased perceptions of families as integral members of the healthcare team (6.08%; p < 0.001); increased perception that families are not viewed as visitors but are welcome to be with the patient (4.18%; p < 0.001), and that policy and practice in the ICU encourage patient and family participation in decision-making (5.01%; p < 0.001). A higher proportion of clinicians postimplementation also reported that there was increased written information provided to patients and families (3.67%; p < 0.001); that systems existed to encourage clinician-family communication (10.27%; p < 0.001); that family members could remain with the patient during change of shift (6.38%; p < 0.001); that patients and families could serve on committees (17.92%; p < 0.001); that there was a functioning patient and family advisory council (14.65%; p < 0.001); that there were sleeping spaces for families (5.31%; p = 0.002) and a family lounge (3.85%; p = 0.001); and that there were increased staff or volunteer support to ensure that visits by children were a positive experience (10.22%; p < 0.001) (Online Supplemental Content, Supplemental Digital Content 1, http://links.lww.com/CCM/E942).

Two months after the end of the collaborative, data regarding the collaborative’s utility were collected from teams. Of the 49 teams (77.8%) which provided feedback, 91.8% found the overall collaborative experience to be valuable or very valuable, the top two ratings on a 5-point scale. Other components of the collaborative which teams found to be valuable included: activities and content at the collaborative launch meeting (97.8%); information and ideas shared by other participating teams (95.8%); content of educational web conferences (93.6%); e-Community resources and communications (85.4%); data collected (81.7%); and monthly conference calls (80.0%). Teams reported finding lower value from the bimonthly e-Community assignments (69.8%); involvement of senior leadership at their institution (65.9%); and involvement of patient/family advisors in their team (64.8%). However, it should be noted that even for these components, a clear majority of teams did find them valuable.

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Thematic Analysis

Major barriers that were reported by the teams included lack of buy-in and ability to promote change in the clinical setting, managing the workload of implementation, lack of staff awareness and interest, and funding to support initiatives (Table 5). Lessons learned included the importance of ensuring routine scheduled meetings that involve senior leaders to maintain enthusiasm and momentum, ongoing communication on project status, and working to change the culture in the unit to adapt to the changes.

TABLE 5.

TABLE 5.

Qualitative data codes that were used to break down the data included Facilitators, Barriers, Processes, and Strategies (Table 5). These codes were developed as the broadest categories upon examination of the data. Each code had several subcodes used to capture more specific information both within and across the various projects. The data collected at the midpoint and end of the study were evaluated based on these codes. Some examples from one of the project groups (family-centered rounds) provide context to the barriers and facilitators to change faced in the ICU. Several teams commented on having “champions” or nurses who were strongly engaged in the change: “I think it would have been helpful to have a few key nurse champions designated to help create excitement about the project with the bedside staff.” Another team reported the need to continually advocate to have the bedside nurse involved in the rounding even if it meant changing processes: “If the nurse is too busy with a recent admission or an active patient to break for rounds, either have him/her relieved by the charge nurse, or go on to the next patient and come back later. This takes constant reinforcement with nursing AND physician staff.”

Barriers to change for the family-centered rounds were often more context dependent: “Our rounds continue to be focused on resident education.” Another example was the competition with other projects: “We are developing an LVAD and heart transplant program which is going well but has placed stressed [sic] on all members of our healthcare team along with an inundation of new protocols which have complicated our inclusion of the checklist into daily practice.” Barriers such as this drew energy and focus away from the project and tended to extend the time line toward a successful and sustainable change.

From the analysis of the qualitative data, there is support for the intuitive sense that change is difficult and maintaining the changed processes represents an ongoing challenge. There is no “done” to the process changes that are being attempted in the various projects. All the efforts require persistence in message and continuous education and evaluation of outcomes followed by reinforcement of the need for the changes. “We now start our conferences with the patient or family member presenting the case. In addition to setting a collaborative tone where the family makes a valuable contribution, this format allows clinicians to follow a summary of the case, and provide clarification and updates specific to the family’s understanding of the situation.”

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DISCUSSION

Use of a national collaborative with specific strategies to assist teams in planning and implementation was beneficial in promoting local family engagement initiatives in ICU settings across the U.S. Components of the collaborative that seemed especially useful included monthly coaching calls; a webinar series to reinforce clinical change strategies; use of an e-Community to promote networking, group problem-solving and sharing challenges, tips, and advice; and patient and family advisor input.

An impressive number and type of initiatives were implemented by the teams to target care components in the ICU. While teams self-identified the specific engagement initiative, the majority focused on family care conferences, family-centered rounds, patient and family diaries, orienting families to the critical care unit, and family information pamphlets. Similar to reports in the literature, these patient and family engagement initiatives are being implemented in various ICU settings with favorable results (3,18–21). A smaller number of teams focused on open visitation, perhaps because this is a widely accepted practice in majority of ICUs in the United States. However, some units retain some restrictions such as no visitors between change of shift or during report (22,23).

None of the teams chose to implement family presence during resuscitation or family presence during invasive procedures. These initiatives have been reported in the literature for over 10 years, yet perceived implementation challenges may impact the use and support for family presence. Family presence during resuscitation and invasive procedures has not been found to interfere with the resuscitation process or with patient care, but rather to promote patient comfort, improve medical decision-making, enhance communication with family members, and improve family member psychologic outcomes (24–26). Information on strategies to implement family presence is needed to assist critical care clinicians with this practice.

Both family members and ICU clinicians reported an increase in opportunities for patient and family participation and engagement post implementation, as well as satisfaction with care in the ICU. This is consistent with reports in the literature that have found improved family satisfaction and participation in decision-making in the ICU with implementation of family-centered care (1,3,4,27–30).

The qualitative data supported the quantitative survey data in that time, attitudes, and competing needs/projects were the main barriers to successful and consistent change in the projects. Planned Change Theory (31) emphasizes the importance of “unfreezing” when implementing changes. One critical aspect of “unfreezing” is managing and changing attitudes. Changes will only be sustained if attitudes of the people involved are also changed; otherwise, when the focus in a unit shifts, the likelihood of reverting to old practices will be high. This is one reason having “champions” was seen as important because their enthusiasm and attitude can be contagious and help initiate attitude changes in others.

Limitations of the collaborative included the inability to include all teams that had applied, and variation in the timeline for obtaining institutional review board approval at the participating sites, leading to different project start times. Participation in the national collaborative may have impacted individual team’s ability to successfully complete the family engagement project within the 10-month timeline. The ABCDEF or ICU Liberation bundle targets appropriate sedation, pain management, spontaneous awakening and breathing trials, exercise and mobility, delirium assessment, and family engagement (https://www.sccm.org/ICULiberation/ABCDEF-Bundles).

Sites reported several barriers to project implementation including personnel issues that slowed the progress of the team, changes in patient census that impacted the project, and other competing initiatives that were occurring at the same time in the ICU, among others (Table 5).

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CONCLUSIONS

A national collaborative format can be a useful way to assist ICU teams to design and implement evidence-based patient- and family-engagement initiatives. Several strategies can be used to promote initiatives to engage family members during an ICU hospitalization including enlisting stakeholder support, engaging unit-based champions, highlighting benefits of family engagement, positive messaging, and sharing progress metrics.

Teams reported a number of lessons learned including the importance of ensuring routine scheduled meetings that involve senior leaders to maintain enthusiasm and momentum, welcoming families as members of the critical care team, maintaining ongoing communication regarding project status, and working to change the culture in the unit. One participant highlighted “This may be extremely difficult, but it is essential.” Reporting on project implementation successes and sharing patient/family feedback to reinforce the importance of the initiatives were also identified as useful strategies. As patient- and family-centered engagement has become an essential component of care, sharing implementation strategies remains needed to assist clinicians to promote optimal care in the ICU.

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ACKNOWLEDGMENTS

We acknowledge the collaborative faculty as follows: Jonna D. Clark, MD, Seattle Children’s Hospital; Rani Ganesan, MD, Advocate Lutheran General; Rhonda Wyskiel, RN, MSN, Johns Hopkins Armstrong Institute for Patient Safety and Quality; Brandon Bell, RN, DNP, ACNP-BC, Advocate Christ Medical Center.

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REFERENCES

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Keywords:

collaborative; critical care; family engagement; family-centered care; intensive care unit; quality improvement

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