key: cord-1016084-gigpwdmg
authors: Fiest, Kirsten M.; Krewulak, Karla D.; Makuk, Kira; Jaworska, Natalia; Hernández, Laura; Bagshaw, Sean M.; Burns, Karen E.; Cook, Deborah J.; Doig, Christopher J.; Fox-Robichaud, Alison; Fowler, Robert A.; Kho, Michelle E.; Parhar, Ken Kuljit S.; Rewa, Oleksa G.; Rochwerg, Bram; Sept, Bonnie G.; Soo, Andrea; Spence, Sean; West, Andrew; Stelfox, Henry T.; Parsons Leigh, Jeanna
title: A Modified Delphi Process to Prioritize Experiences and Guidance Related to ICU Restricted Visitation Policies During the Coronavirus Disease 2019 Pandemic
date: 2021-10-25
journal: Crit Care Explor
DOI: 10.1097/cce.0000000000000562
sha: 2ee5d25c58885166c82ef89b59bdeededa4155e9
doc_id: 1016084
cord_uid: gigpwdmg

To create evidence-based consensus statements for restricted ICU visitation policies to support critically ill patients, families, and healthcare professionals during current and future pandemics. DESIGN: Three rounds of a remote modified Delphi consensus process. SETTING: Online survey and virtual polling from February 2, 2021, to April 8, 2021. SUBJECTS: Stakeholders (patients, families, clinicians, researchers, allied health professionals, decision-makers) admitted to or working in Canadian ICUs during the coronavirus disease 2019 pandemic. MEASUREMENTS AND MAIN RESULTS: During Round 1, key stakeholders used a 9-point Likert scale to rate experiences (1—not significant, 9—significant impact on patients, families, healthcare professionals, or patient- and family-centered care) and strategies (1—not essential, 9—essential recommendation for inclusion in the development of restricted visitation policies) and used a free-text box to capture experiences/strategies we may have missed. Consensus was achieved if the median score was 7–9 or 1–3. During Round 2, participants used a 9-point Likert scale to re-rate experiences/strategies that did not meet consensus during Round 1 (median score of 4–6) and rate new items identified in Round 1. During Rounds 2 and 3, participants ranked items that reached consensus by order of importance (relative to other related items and experiences) using a weighted ranking system (0–100 points). Participants prioritized 11 experiences (e.g., variability of family’s comfort with technology, healthcare professional moral distress) and developed 21 consensus statements (e.g., communicate policy changes to the hospital staff before the public, permit visitors at end-of-life regardless of coronavirus disease 2019 status, creating a clear definition for end-of-life) regarding restricted visitation policies. CONCLUSIONS: We have formulated evidence-informed consensus statements regarding restricted visitation policies informed by diverse stakeholders, which could enhance patient- and family-centered care during a pandemic.

Family members are key partners in PFCC, especially in the ICU (5) . Family members act as surrogate decisionmakers, advocate and communicate on behalf of an ICU patient, provide emotional support for patients (6, 7) , and may participate in patient care activities (5, 8) . Evidence suggests that family presence in the ICU may reduce the length of ICU stay (9) and reduces symptoms of anxiety in family members (10) (11) (12) .

Research is emerging on the impact that this dramatic shift in visitation policies may have had on patients, families (13) (14) (15) (16) , and clinicians, including exacerbated family distress, increased length of ICU stay (17) , and delayed decision-making about use of advanced life support for dying patients (17) . Healthcare professionals were less often able to develop meaningful relationships with patients and families (18) and end-of-life discussions normally performed in person were often held virtually (16) . There is no conclusive evidence that restricted visitation policies reduced transmission of COVID-19 (3) , and evidenceinformed policy is needed.

We undertook a program of research to identify the extent of visitor restrictions across Canada (4), describe the impact of restricted visitation on patients, families, and healthcare professionals (18) , and review the relevant literature examining the impacts of restricted visitation (19) . The aim of this study was to engage a diverse panel of stakeholders, including patients, families, and healthcare professionals, to reach consensus on key experiences of stakeholders impacted by COVID-19 restricted visitation policies and guidance on restricted visitation policies to support critically ill patients in the current and future pandemics.

Key stakeholders (patients, family members, physicians, registered nurses, physiotherapists, respiratory therapists, social workers, and decision-makers including managers, department heads, and medical officers of health) impacted or involved in the development and implementation of restricted visitation policies for Canadian ICUs were invited to participate. We aimed to have at least one stakeholder from each group and geographic representation from each Canadian province/territory. We purposively recruited healthcare professionals by contacting professional societies (Canadian Critical Care Society, Canadian Critical Care Trials Group, Canadian Association of Critical Care Nurses, Canadian Society of Respiratory Therapists). We recruited former ICU patients and family members, physicians, and nurses directly from our research program, and through nontraditional channels, including social media. Interested participants contacted the study team and were screened for eligibility (≥ 18 yr, English-speaking, able to consent).

We conducted a modified Delphi consensus process that was informed by the RAND-UCLA appropriateness method (20) and followed the Conducting and REporting DElphi Studies reporting guidelines (21) . Items informed by a scoping review, environmental scan of hospital policies, and semi-structured interviews were thematically analyzed to create 12 themes ( Fig. 1 ) that were divided into two domains: 1) experiences related to restricted visitation during the COVID-19 pandemic (n = 50 items) and 2) strategies to mitigate the impact of restricted visitation during the COVID-19 pandemic (n = 104 items). Key stakeholders reviewed, "rated" (based on importance of individual items), and "ranked" (order of importance relative to other items in the same theme) key experiences (rating scale: 1-not significant, 9-significant impact on patients, families, healthcare professionals, or PFCC) and strategies (rating scale: 1-not essential, 9-essential recommendation for inclusion in the development of restricted visitation policies) on restricted visitation policies that were enacted during the COVID-19 pandemic. This involved three rounds of modified Delphi consensus voting. Round 1 and Round 2 were self-administered, using a secure and encrypted online platform (Qualtrics, Provo, UT). Round 3 was conducted during a two-day virtual National Stakeholder Meeting, using digital tools Vevox (vevox.com) and Mentimeter (mentimeter. com). The overall modified Delphi process is depicted in Figure 2 , with details of each round included in Appendix 1 (http://links.lww.com/CCX/A825). All surveys were developed and pilot-tested by team members and patient partners to ensure that questions were appropriate, clear, and comprehensive (Appendix 2 and 3, http://links.lww.com/CCX/A825). In addition, members of the study team were available to answer participant questions. Participants provided informed consent prior to participating in the modified Delphi consensus process. The University of Calgary Conjoint Health Research Ethics Board approved this study (Ethics identification: REB20-0944).

After Rounds 1 and 2, we emailed participants a summary of the results (i.e., their rating/ranking and the median score for each item). After Round 3, we summarized participant rankings. We determined consensus for any statement a priori as a median score of 1-3 (not significant/not essential) or 7-9 (significant/essential). An item was assessed to be a priority item if the item's mean ranking was equal to or greater than one sd above the theme's mean ranking. For example, if a theme had a mean of 20.0 and a sd of 3.3, items with a mean score greater than 23.3 were considered priority items. This strategy was used to equalize themes that had an unequal number of experiences or strategies. Analyses were conducted using Stata 14.1 (StataCorp, College Station, TX).

Participants of the modified Delphi consensus process represented 10 provinces/territories from nine stakeholder groups (Table 1) . Ninety-four participants (100%) completed Round 1 and 77 (81.9%) completed Round 2. 

We provide the results from Rounds 1-3 in supplementary files (Supplementary Tables 1-6 , http://links.lww. com/CCX/A825) and the overall results of Rounds 1-3 in Figure 3 . Round 

In Round 1, 33 items (33/50; 66%) related to stakeholder experiences with restricted visitation reached consensus (median = 7-9). These items were considered Healthcare professionals were conflicted between advocating against the policy (to prioritize patient well-being) and advocating for the policy (to protect the healthcare system)

Sense of tension and lack of trust among healthcare professionals and policy makers. This was often due to variation in the interpretation or application of restricted visitation policy details 11.4 (6.7) Overview of the modified Delphi process for experiences (n E ) and strategies (n S ). Likert scale items must have a median between 1 and 3, or 7-9 to reach consensus. Priority ranked items had to have a mean score that was greater than the theme mean plus one sd to be considered priority. Participants suggested seven additional strategies during Round 1. Together with the strategies that did not reach consensus during Round 1 (13/104; 12.5%), 20 items were re-rated during Round 2. Of these 20 items, 9 (9/20; 45%) had were considered essential (median = 7-9) strategies. All strategies that reached consensus during Rounds 1-3 were re-ranked during day 2 of the National Stakeholder Meeting (n = 67) (Supplementary Table 6 , http://links.lww.com/CCX/ A825). Of these 67 strategies, 21 (21/67; 31.3%) met the cutoff to be considered a priority (Supplementary Table 1 , http://links.lww.com/CCX/A825). These included ways to improve communication of policies/ policy changes (2/21; 9.5%), strategies for policy implementation and consistency (5/21; 23.8%), strategies for facilitation of in-hospital visitation (4/21, 19.0%), end-of-life policy (2/21; 9.5%), criteria for exceptions (2/21; 9.5%), facilitation of out-of-hospital visitation (3/21; 14.3%), technological supports (1/21; 4.8%), and organizational supports (2/21; 9.5%).

We engaged a national panel of stakeholders to determine consensus on two domains of ICU restricted visitation policies (experiences and strategies) during the COVID-19 pandemic. Participants prioritized 21 strategies that should be considered when developing, revising, or implementing restricted visitation policies. These strategies focused on the need for clear and consistent policy communication (e.g., during regular working hours) and implementation (e.g., implement a process for exceptions and appeals), facilitation of inhospital communication (e.g., implement a "visitor advisor"), out-of-hospital communication (e.g., designate family spokespersons), end-of-life (e.g., creating a clear definition for end-of-life) and offering of various supports (e.g., considering family members as integral part of the care team, increasing the number of technological devices, and clear messaging to the staff about visitation policies).

The impacts of restricted visitation policies on patients, families, and healthcare professionals identified by our group are consistent with existing data. Studies suggest that prior to the COVID-19 pandemic, some ICUs restricted the frequency or duration of family visits to the ICU (22) (23) (24) (25) . A recent study reported that family members in ICUs with restricted visiting policies (duration of visit of 1 hr/d) endorsed lower satisfaction with care and impact to family participation in care, compared with families from an ICU with open visitation policies (26) . Restricted visitation has also been shown to have negative psychologic impacts on family members of critically ill patients (11) , especially during end-of-life (27) . A study on the psychologic impacts of the COVID-19 pandemic reported that critical care clinicians perceived that restricted visitation policies were associated with symptoms of anxiety and depression among patients and families (28) and moral distress in healthcare professionals (29) . Similarly, in the current study, a panel of stakeholders prioritized items that described psychologic impacts of restricted visitation on patients (e.g., isolation, loneliness), families (e.g., not visiting loved ones before sedated or intubated), and healthcare professionals (e.g., moral distress).

Stakeholders prioritized several items that addressed the psychologic impacts of restricted visitation policies on opportunities to debrief with colleagues or access mental health supports for patients, families, and staff. Stakeholders also prioritized several items that may improve patient, family, and healthcare professional well-being such as videoconferencing options for family members and patients who are separated and provision of frequent medical updates. Recent studies demonstrate that families report successful remote communication (i.e., functional remote technology or staff that kept family informed) with the patient and healthcare team were associated with improved family end-of-life care experience (30, 31) and enhanced staff morale (32) .

The value of remote communication is evident but there may be additional considerations. For example, psychologic distress was measured in family members who were identified as the designed spokesperson during the COVID-19 pandemic at admission, discharge, and 3-month follow-up. Family members who received communication only via phone or device (e.g., mobile phone or iPad) experienced negative psychologic outcomes (i.e., high prevalence of symptoms of anxiety and depression and post-traumatic stress disorder) (33) . Stakeholders prioritized increased availability of teleconferencing devices but there are several challenges, such as coordinating device use (i.e., scheduling calls, holding devices for patients), and inaccessible virtual communication opportunities for marginalized populations. Although healthcare professionals value communicating with families, adding on the use of technology can be challenging and could require more time to negotiate by the healthcare worker or family member (34, 35) . A teleconferencing initiative during the COVID-19 pandemic (Life Lines) that used simple, intuitive technology that functions independent of the hospital Wi-Fi, still encountered barriers, especially insufficient staff time to prepare virtual communication (32) . Research is emerging on how best to implement video conferencing platforms into ICUs (36) .

Our study has offers suggestions to manage communication when visitation restrictions are enacted. The current study and recent articles prioritize visitors to be permitted for end-of-life regardless of a patient's COVID-19 status (35, 37) . Most importantly, stakeholders emphasized the need for policies to create a clear for definition of end-of-life that balances the challenges of predicting end-of-life for clinicians, while respecting the needs of families to be at bedside at endof-life or prior to discussions about end-of-life care. This includes broad policy that allows visitors to be present while the patient can interact (i.e., not comatose at end-of-life), which is imperative given that an important family experience identified was their absence at the end-of-life and inability to visit their loved one prior to sedation and intubation. Furthermore, though a patient may be at the end-of-life, the focus does not shift to end-of-life care until a plan is established with the family (who may not have been allowed to visit because patient was not designated to be at end-of-life and may not be aware of how ill the patient is). As such, enhanced clarity and communication is needed to prepare the family for when the patient is nearing end-oflife (even if death is not imminent). Policies that allow clinicians leniency when predicting end-of-life, while allowing families to be present during the end-of-life process and participate in end-of-life-care communication or ceremonies with their loved one may reduce negative effects such as increased symptoms of depression or anxiety or complicated grief (38, 39) .

Strengths of our study include the engagement of a diverse group of stakeholders, including patients and family members, with a high response rate for each round, and rigorous methodology. In addition, stakeholders were recruited from 10 different Canadian provinces and territories that each had a different severe acute respiratory syndrome coronavirus 2 infection rate and COVID-19 policy response (i.e., variations in restricted visitation policies, government mitigation efforts) and, as such, each participant brought differing experiences and perspectives to this study. This study also has several limitations. First, the number of patients and families who participated was lower than that of healthcare professionals, which may contribute to sampling bias. However, several stakeholder groups were included in the modified Delphi Consensus process, thereby limiting the chance that any single group could have influenced the results in an impactful manner. The purpose of the current study was to prioritize evidence-informed consensus statements that should be further discussed and adapted to the local context with a diverse group of stakeholders. Second, as with any consensus process, priorities can vary widely. To address this limitation, we included stakeholders from the beginning, reviewed the COVID-19 literature, and included free-text boxes in each round to capture variations we may have missed. Third, the burden of COVID-19 cases varied across Canada. As such, items asking about specific experiences may not have been applicable to all stakeholder groups within each jurisdiction and may have impacted consensus rankings. Fourth, as with any remote survey, participant interpretation of items may have varied. To address this, we pilot-tested the survey with multiple team members and patient partners to mitigate points of uncertainty and provided participants an opportunity to discuss/ reword during the National Stakeholder Meeting. Fifth, the study occurred before vaccinations were made available to the general public. With the vaccination rate increasing, existing consensus statements will need to be revisited and revised based on emerging evidence of risk and transmissibility to inform visitation policies that consider a visitor's vaccination status. Sixth, the generalizability of these findings is limited to setting such as Canada where, pre-pandemic, most ICUs had open visitation (24 hr) (4) and, as such, may not be applicable to jurisdictions with restricted/limited visitation. Future work is needed to understand www.ccejournal.org October 2021 • Volume 3 • Number 10 the barriers to the implementation and facilitators/ barriers of adoption of these evidence-informed consensus statements and their sustained uptake during the current and future pandemics.

During the first wave of COVID-19 pandemic, hospitals enacted restricted visitation policies per public health policies. This study reports key impacts of restricted visitation policies: isolation of critically ill patients, family absence at the end-of-life, and moral distress among healthcare professionals. Key stakeholders prioritized evidence-informed consensus statements on how to best facilitate PFCC during a pandemic. These strategies include suggestions to improve communication and access to patients during end-of-life (while they can communicate) and developing a more consistent approach to communicating and enacting policy changes.

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We would like to thank Rebecca Brundin-Mather, Stephana J. Moss, Melanie Columbus, Emily Fitzgerald, Chloe M. de Grood, Regan King, Madison Leia, Sara Mizen, and Kara Plotnikoff for assisting with breakout sessions. This article underwent an internal peer re-