\documentclass[10pt]{article}

\usepackage{fullpage}
\usepackage{setspace}
\usepackage{parskip}
\usepackage{titlesec}
\usepackage[section]{placeins}
\usepackage{xcolor}
\usepackage{breakcites}
\usepackage{lineno}
\usepackage{hyphenat}





\PassOptionsToPackage{hyphens}{url}
\usepackage[colorlinks = true,
            linkcolor = blue,
            urlcolor  = blue,
            citecolor = blue,
            anchorcolor = blue]{hyperref}
\usepackage{etoolbox}
\makeatletter
\patchcmd\@combinedblfloats{\box\@outputbox}{\unvbox\@outputbox}{}{%
  \errmessage{\noexpand\@combinedblfloats could not be patched}%
}%
\makeatother


\usepackage{natbib}




\renewenvironment{abstract}
  {{\bfseries\noindent{\abstractname}\par\nobreak}\footnotesize}
  {\bigskip}

\titlespacing{\section}{0pt}{*3}{*1}
\titlespacing{\subsection}{0pt}{*2}{*0.5}
\titlespacing{\subsubsection}{0pt}{*1.5}{0pt}


\usepackage{authblk}


\usepackage{graphicx}
\usepackage[space]{grffile}
\usepackage{latexsym}
\usepackage{textcomp}
\usepackage{longtable}
\usepackage{tabulary}
\usepackage{booktabs,array,multirow}
\usepackage{amsfonts,amsmath,amssymb}
\providecommand\citet{\cite}
\providecommand\citep{\cite}
\providecommand\citealt{\cite}
% You can conditionalize code for latexml or normal latex using this.
\newif\iflatexml\latexmlfalse
\providecommand{\tightlist}{\setlength{\itemsep}{0pt}\setlength{\parskip}{0pt}}%

\AtBeginDocument{\DeclareGraphicsExtensions{.pdf,.PDF,.eps,.EPS,.png,.PNG,.tif,.TIF,.jpg,.JPG,.jpeg,.JPEG}}

\usepackage[utf8]{inputenc}
\usepackage[english]{babel}



\usepackage{float}








\begin{document}

\title{Best Practices Toolkit for Family Participation in ICU Rounds}



\author[1]{Selena Au}%
\author[2]{Amanda Roze des Ordons}%
\author[3]{Kenneth Blades}%
\author[4]{Thomas Stelfox}%
\affil[1]{University of Calgary Cumming School of Medicine}%
\affil[2]{Affiliation not available}%
\affil[3]{Ward of the 21st Century (W21C)}%
\affil[4]{University of Calgary}%


\vspace{-1em}



  
  \date{May 27, 2024}


\begingroup
\let\center\flushleft
\let\endcenter\endflushleft
\maketitle
\endgroup





\selectlanguage{english}
\begin{abstract}
Rationale, Aims and Objectives: Guidelines recommend inviting family
members of intensive care unit (ICU) patients to rounds. We aimed to
create a toolkit to support family participation in ICU bedside rounds,
based upon evidence from research and in collaboration with ICU family
member representatives and healthcare providers. Methods: A multi-method
qualitative research program was conducted to provide an evidence-base.
Ethnographic observations of rounds and interviews and focus groups with
family members and ICU healthcare providers were analyzed for key
themes, barriers and facilitators of participation, and suggestions. A
full day workshop with family representatives and providers (physicians,
nurses, social workers, and unit managers) from a diverse range of adult
ICUs in Western Canada, including several community ICUs and a majority
of large, urban ICUs enabled the collaborative development of key
toolkit elements. Results: We have developed an evidence-informed
approach to patient-and-family-centered rounds that highlights the
importance of 6 key elements foundational to patient and family centered
rounds: Invitation, Orientation, Engagement, Summary, Questions, and
Communication Follow-Up. We describe strategies, techniques, and
templates to optimize these elements and interactions so that
communication is more meaningful, and to facilitate the ability of
family members to adopt a meaningful role as contributing members of the
care team. Conclusion: There is consensus on general strategies for
facilitating family participation in rounds and meaningful communication
between family and the healthcare team during rounds as an important
element of the continuum of communication in the ICU. The incorporation
of these elements should be standardized, though tailored to user needs.%
\end{abstract}%



\sloppy


\textbf{Introduction}

Current guidelines recommend inviting family to attend ICU bedside
rounds as one way of improving communication and increasing
satisfaction\textsuperscript{1}. There is little guidance as to how
participation can be optimized so that family members feel valued as
team members and the vulnerabilities of having a critically ill loved
one are respected while maintaining the efficiency and high quality of
rounds\textsuperscript{2-4}. Recent literature has used the term `family
centered rounds' when traditional multidisciplinary rounds are adapted
to provide family with an invitation to attend, a summary of information
discussed, and an opportunity to ask questions \textsuperscript{5,6}.
Such an approach has not consistently demonstrated an improvement in
family satisfaction with communication or shared
decision-making\textsuperscript{7,8}. Family and providers have
differential awareness of roles family may adopt during rounds; more
explicit orientation and engagement strategies may help clarify this
\textsuperscript{4}.

We aimed to develop a framework for patient and family centered rounds
by defining key structures, processes, facilitators and barriers to
optimal family participation, and tools to maximize and mitigate these
factors, respectively. Our program of research has included multicenter
multi-city ethnographic observations, interviews and focus groups, and a
one-day workshop for toolkit development \textsuperscript{4,9}. In this
manuscript we report the development of a guide on how to conduct
patient and family centered rounds in a way that balances the needs of
both family members and providers.

\textbf{Methods}

The toolkit we present here is informed by a large program of research,
some of which has been reported elsewhere \textsuperscript{9,10}, and
some which we report here for the first time.

\emph{Ethnographic study:} Our research program began with an
observational study of family participation in ICU care team
rounds\textsuperscript{10}. We conducted ethnographic observations of
rounds, employing both structured (documentation of pre-specified
processes) and unstructured (note-taking to characterize interactions
and context) data collection techniques to directly observe and describe
family member attendance in ICU rounds in seven medical-surgical ICUs
located in seven hospitals in three Canadian cites in the province of
Alberta.

\emph{Interviews and focus groups:} Interviews and focus groups with
family and healthcare providers were conducted in four urban tertiary
care medical-surgical ICUs within a large city, and in five additional
ICUs across Alberta, one of which was an urban tertiary care centre and
the others which serve a rural patient population \textsuperscript{9}.
These in-depth interviews and focus groups explored facilitators,
barriers, and suggestions for improvement from the perspectives of
participants in ICU family rounds. Our research program culminated in a
full-day toolkit development workshop.

\emph{Workshop:} A diverse group of family members and healthcare
providers from 14 adult ICUs were invited to attend a one-day, 8-hour
workshop to deliberate upon and collaboratively develop a toolkit to
guide patient and family centered rounds. The key facilitators
identified through our qualitative observations and
interviews\textsuperscript{9,10} were incorporated into an electronic
survey with a 5-point Likert scale for rating the importance of each
facilitator, along with 2 open-ended questions for respondents to write
additional facilitators and site-specific contextual factors (see
Appendix 1). The survey was distributed to family members and providers
one week before the workshop to identify the highest priority elements
of patient- and family-centered rounds. Family members and providers
were provided with a summary of key findings from the research to date,
and were asked to come to the workshop prepared to discuss ideas on how
key processes involved in patient-and family-centered rounds could be
developed into a practical toolkit for use in the clinical setting.

The workshop was held on November 5\textsuperscript{th}, 2018 and
divided into morning and afternoon sessions. The day commenced with a
review of existing literature, findings from previous research, and
objectives for the workshop, which were to 1) consolidate components of
the toolkit including structures, processes, and existing tools, 2)
refine toolkit components to optimize communication with all
stakeholders, and 3) prioritize further tool development. Participants
were divided into six groups. Groups rotated through 12 stations
representing structures, processes and tools to guide implementation of
the 6 highest priority elements of patient- and family-centered rounds
identified in the pre-workshop survey. Groups were asked to generate
ideas on the structures, processes and tools, and vote on the importance
and relevance of the tools. At the end of the morning and afternoon
sessions, large group discussions were held to review and discuss the
ideas generated at each workshop station and establish consensus on
which elements to include in the final toolkit.

The collaborative worksheets from each activity station were retained
for subsequent analysis and to support toolkit development. Three
research team members independently took memos during the group
discussion portions of the workshop, which were also audio-recorded and
transcribed verbatim. The three sets of notes were compiled and collated
to create a record of the discussions; the researchers reviewed the
collated notes and transcripts for fidelity. From the notes and
transcripts, the researchers assembled a consensus list of toolkit items
that had been agreed upon and discussed by workshop participants,
including numerous suggestions and examples of their application. This
consensus list formed the basis for the final toolkit components
reported below.

\textbf{Results}

Out of 55 individuals invited a total of 23 participants attended the
toolkit development workshop, including ICU physicians (n=4), nurses
(n=5), unit managers (n=8), family member representatives and advisors
(n=6), one social worker, and one spiritual care practitioner. Three
participants were from rural sites, while the majority of attendees
(n=20) were from large urban community or academic hospitals.

Seventeen participants completed the pre-workshop survey, fourteen of
whom self-identified as healthcare providers and three who
self-identified family members (see Appendix 1). Based on our
ethnographic data, interviews and focus groups, and the pre-workshop
survey, we identified six elements foundational to patient and family
centered rounds: Invitation, Orientation, Engagement, Summary,
Questions, and Communication Follow-Up (Figure 1). For each element, the
structures and processes that promote communication,
relationship-building, and shared decision-making identified in the
workshop and the associated tools to support these practices are
described below. Tools include standardized unit practices, key talking
points, education aids, mnemonics, written templates and local
champions, and are summarized in the Supplemental Material as a complete
guide. Select tools and quotations are illustrated in Table 1.

\subsection*{Invitation}

{\label{invitation}}

\begin{enumerate}
\tightlist
\item
  \emph{Healthcare providers inviting family members to rounds}Workshop
  participants recommended educating staff that inviting families to
  rounds is the standard of care and part of unit culture. Any member of
  the care team can encourage family attendance, and multiple
  invitations are beneficial.
\item
  \emph{When and where to invite family members to rounds}Participants
  suggested inviting family as soon as is practical (e.g., at first
  contact with family, and if possible in the presence of a patient who
  is awake and aware), with reminders throughout the patient's ICU stay.
\item
  \emph{Who to invite to rounds}Participants indicated it is ideal to
  ask the patient who they would like to participate in rounds. For
  patients who are unconscious or unable to make decisions, participants
  suggested asking the surrogate decision maker to select an attendee.
  Participants considered an appropriate rounds attendee to be someone
  the patient would likely agree to have present, who could reflect the
  patient's voice, and who feels reasonably comfortable participating.
  For large extended families, participants suggested that a single
  family spokesperson could attend rounds and relay information to the
  larger family unit.
\item
  \emph{Supporting materials for families invited to rounds}To promote
  consistent messaging, participants suggested providing staff with
  standard information on how to invite family members to rounds.
  Recommended tools included pamphlets, invitation cards, and posters to
  accompany verbal invitations and aid family members' understanding and
  recall. Participants indicated written materials would ideally be
  simple, concise, identify the structure and purpose of rounds, and
  include illustrative pictures and graphics. Posters in waiting areas
  were suggested as a passive means to raise awareness of rounds, as
  well as index-sized invitation cards which could include a personal
  invitation from a staff member.
\end{enumerate}

\subsection*{}

{\label{section}}

\subsection*{Orientation}

{\label{orientation}}

\emph{Distinguishing orientation from invitation} Participants
considered `invitation' as presenting rounds as an opportunity for
family members to communicate with providers (i.e., `getting them
there'). `Orientation' then involves introducing the family member to
the team, describing the structure of rounds, and outlining the role of
family in rounds (i.e., `why they are there').\emph{2) Ideal healthcare
providers to orient family members to rounds}Participants discussed two
main factors to assess which healthcare provider is most appropriate to
orient family to rounds: (a) who is present when family is visiting, and
(b) who has the most consistent presence at the bedside. This will most
likely be the bedside nurse, although participants noted any healthcare
provider can assume this role. Participants indicated that a
standardized orientation would provide consistency. Information about
rounds can also be placed in a welcome package or on a whiteboard in the
patient's room.

\emph{3) When to begin the orientation conversation}

Participants thought orientation would ideally happen as close as
possible to ICU admission, although our data emphasizes that family are
often initially overwhelmed and have difficulty processing information
early in a patient's stay. An orientation within 24 hours or prior to
the first rounds following patient admission was deemed appropriate for
most cases. Participants noted that the orientation might need to be
repeated when additional family members arrive and that it may be
helpful to provide family with a brief orientation every time they join
rounds to reinforce key points.

\emph{4) Where to hold the orientation conversation}

The patient's bedside was identified as an optimal location for
orienting families to rounds, as this is where rounds ideally occur.
Conversations inside the room provide an increased sense of respect and
afford opportunities to involve the patient when possible.

\emph{5) Providing standardized ``coaching'' for family immediately
before rounds}

Participants suggested coaching might involve consistent messages about
the purpose of rounds, and prompting family on how to optimally
participate (e.g., advocating for the patient, asking questions,
requesting clarification). Family can be encouraged to write down their
questions in advance so they remember what they want to ask during
rounds.

\emph{6) Ground rules to pre-empt and manage challenging scenarios}

Participants suggested ground rules include an expectation of respectful
conduct, a designated time during rounds for family input, and
opportunities for more in-depth conversations after rounds. Healthcare
provider education could teach approaches to addressing disruptions and
diffusing conflict. Participants suggested a social worker participate
in rounds when disruptions or conflict is anticipated.

IDEA, acronym for introductions, definition, encouragement, and
alternatives, is one tool we described to encompass important discussion
points within an orientation. (Supplemental material)

\subsection*{}

{\label{section-1}}

\subsection*{Active Engagement}

{\label{active-engagement}}

\begin{enumerate}
\tightlist
\item
  \emph{Identifying how family members can contribute to patient care}In
  addition to supplementing medical information, family members were
  considered as valuable resources for types of patient information
  often not available in charts, including: baseline routine, function,
  and values.
\item
  \emph{Identifying roles or active tasks that family can perform as
  members of the care team}Participants identified potential family
  roles as: providing health information, directed information
  gathering, patient advocacy, patient support/comfort, physical care
  (e.g., delirium identification, mobilization assistance), and
  communication liaison (e.g., updating other family members, continuity
  of care between providers). Participants emphasized that family
  members will differ in which roles and tasks, if any, they wish to
  participate in; case-by-case assessment of family preferences will be
  needed. Family members could then be coached within their preferred
  roles and the roles adapted as needed.
\end{enumerate}

Table 2 describes a written template developed as a framework for family
member use during rounds as a mechanism of guided participation and
note-taking. This framework increases role clarity by giving family
members an idea of how they can offer patient-related information.

\subsection*{Summary of Rounds}

{\label{summary-of-rounds}}

\emph{Determining the most important information to summarize for
family}

Family members and providers described important components of a
patient- and family-oriented summary: big picture issues, progress of
patient status, plan (daily and long-term), prognosis, priorities and
potential problems, with the first three being most critical (5 P's
mnemonic tool in Supplemental material).

\emph{Determining when to provide the summary (e.g., at end of rounds,
before or after family questions)}Participants indicated that a single
summary at the end of rounds is more efficient than summarizing each
issue as it is discussed. They suggested the summary be provided before
eliciting family questions, as common questions may be answered in the
summary. When family is not available during rounds, the summary can be
provided when they next arrive or can be communicated by telephone.

\subsection*{}

{\label{section-2}}

\subsection*{Opportunity for Questions}

{\label{opportunity-for-questions}}

\begin{enumerate}
\tightlist
\item
  \emph{Encouraging different types of family input}Participants
  suggested encouraging family to think of questions, comments, and
  concerns ahead of time and write them down. Participants indicated it
  was particularly important that the rounding team invite questions and
  concerns, acknowledge and validate family input, and listen
  attentively when family is speaking. Formulating questions into
  open-ended format can increase the sense of welcome and promote
  dialogue (Examples within Supplemental material.)
\item
  \emph{Crafting optimal responses to family questions and
  input}Families emphasized that questions are best answered with
  straightforward language, and in a respectful and empathetic manner.
  Body language and tone were highlighted as essential for building
  trust and establishing rapport. When there are many questions, or it
  is not the right time or place for discussion (e.g., a private setting
  is needed), participants suggested validating the question/concern and
  setting a time to address the issue after rounds (e.g., in a formal
  meeting).
\end{enumerate}

\subsection*{Communication Follow-Up}

{\label{communication-follow-up}}

\begin{enumerate}
\tightlist
\item
  \emph{Best ways to communicate with families outside of
  rounds}Participants highlighted that communication can occur
  informally throughout the day. Any healthcare provider was considered
  appropriate to communicate with family, as long as information is
  consistent across providers. Phone calls were identified as an
  alternative way to communicate with family. Whiteboards were
  recommended, although participants emphasized that information on a
  whiteboard must respect patient confidentiality.
\item
  \emph{Family follow-up after rounds}
\end{enumerate}

Participants suggested that a designated member of the healthcare team
check in with family and ensure their questions have been addressed
after rounds has concluded. A large number of questions may suggest the
need for a separate family meeting. Family could also be encouraged to
write down questions that occur to them before the next rounds.

\begin{enumerate}
\tightlist
\item
  \emph{Accommodating families unable to physically attend
  rounds}Participants felt family should be asked their preferences for
  alternate communication early in the patient's stay. Options suggested
  included telephone or videoconferencing. However, family access to
  computers and internet cannot be assumed. For families who visit
  outside of rounds, verbal summaries by a healthcare provider who was
  present during rounds was suggested as an alternative.
\item
  \emph{Supporting vulnerable families} Participants recognized that
  family characteristics and circumstances (e.g., language barrier,
  minority groups, elderly/frail, complex family relations, social
  stigma) may result in vulnerability. Participants emphasized that all
  family members are vulnerable in some way and recommended asking all
  families how they are coping and what support and resources would be
  of benefit to them.\textbf{Discussion}Professional organizations have
  advocated for family member participation during ICU bedside rounds
  for nearly 20 years\textsuperscript{1,11-13}. Recent North American
  data indicates increases in family presence with the adoption of open
  visitation policies, however this speaks little to the nature of
  family participation \textsuperscript{14-16}. By partnering with both
  family members and providers, we have developed an evidence-informed
  approach to patient and family centered rounds that highlights the
  importance of six key elements foundational to patient and family
  centered rounds: Invitation, Orientation, Active Engagement, Summary,
  Opportunity for Questions, and Communication Follow-Up, and we
  describe strategies to optimize these elements and interactions so
  that communication is more meaningful.
\end{enumerate}

Rationale for toolkit approach: There is broad support for the notion of
involving patients (and by extension, family members who serve as
patient representatives when the patient lacks capacity) in ICU rounds,
as a daily opportunity for shared decision-making with a
multidisciplinary team \textsuperscript{1}. Defining the elements of
this participation has remained much more elusive. Family engagement can
be anywhere in a passive--active spectrum (e.g., presence versus making
suggestions) while decision-making approaches vary from paternalistic to
patient-informed \textsuperscript{2,17,18}. Given the dynamic and
complex nature of ICU care and rounds, family members may adopt variable
types of engagement and decision-making throughout the course of rounds.
This anticipated variability in the nature of family participation does
not preclude defining crucial elements central to PFCC rounds and robust
communication practice however. Considering rounds is a discrete
clinical encounter, similar to insertion of a central line or surgery,
it should be amenable to a simple tool like a checklist to standardize
processes \textsuperscript{19,20}. Recognizing that checklists cannot
replace clinical judgment or appropriate responses to emotion, our
research has identified six key structures and processes for PFCC rounds
along with tools to support fluidity and responsiveness to the needs of
patients, families, and team members. Previous studies involving family
participation in adult ICU rounds share the common processes of
invitation, summary, and opportunity for questions; however, adopting
these elements alone risks constraining family members to more passive
roles; elements that promote active engagement are notably absent from
these prior recommendations \textsuperscript{5,7,8,21}. To our
knowledge, our tool for active engagement is the first approach
described for coaching family members on participating in rounds in a
way that recognizes them as active members of the care team.

Adoption of tools: Within a range of possible family roles in rounds,
our family member participants have stressed that they adopt the various
potential roles in different ways, and that the care team must be
flexible and explore how families prefer to be engaged. Our toolkit was
developed by family members and providers from a myriad of practice
settings, and all emphasized that components will need to be tailored to
local needs and context, ideally within a quality improvement paradigm.
Furthermore, the toolkit elements may be difficult to introduce all at
once; individual units can determine both the sequence and number of
elements to implement within a given timeframe. For some centers,
implementation of these structures and processes may also require a
cultural shift. Education about the rationale for toolkit elements and
addressing concerns will be essential for provider engagement.

Strengths of this study include a multi-method approach involving a
provincial network of stakeholders from varied practice settings, and a
rich description of practical tools and how they can be implemented.
Limitations include situating the study within a provincial practice
network in Western Canada that largely functions with open family
visitation hours, potentially limiting transferability to other
contexts. We have also focused mostly on practices to support family as
opposed to patients. This does not understate the importance we place on
patient involvement whenever possible. Finally, we present suggestions
for patient and family centered rounds and acknowledge that further
research to determine the impact of implementation is needed.

\textbf{Conclusion}

Based on the perspectives and ideas drawn from family members of ICU
patients and ICU healthcare providers, we have developed a practical
approach to facilitate active family member participation in ICU bedside
rounds. Our study highlights the importance of 6 elements in supporting
the participation of family members in rounds: Invitation, Orientation,
Engagement, Summary, Questions, and Follow Up. Specific strategies for
facilitating meaningful communication between family and the healthcare
team during rounds situate rounds as an important element in the
continuum of communication in the ICU. Next steps will involve
implementing, evaluating, and adapting the toolkit within local
contexts.

\emph{Abbreviations}

ICU: intensive care unit

PFCC: patient and family centered care

\emph{Declaration}

Ethical Approval and Consent to participate: Ethical approval for Phases
I and II was attained under REB15-1891. Phase III was conducted as a
quality improvement project as per ARECCI guidelines and as set forth in
the Helsinki Declaration.

Authors' contributions: Each of the study authors has made significant
contributions to the manuscript. Selena Au, Amanda Roze des Ordons, and
Tom Stelfox are critical care physicians with the University of Calgary
and were all responsible for study conception, protocol design, and data
interpretation. Kenneth Blades is a qualitative researcher with the
University of Calgary's Ward of the 21st Century Research \& Innovation
Centre with an MA in sociology, and contributed to methodological
design, data collection, data analysis, and manuscript preparation.
Selena Au, Amanda Roze des Ordons, and Kenneth Blades analyzed and coded
qualitative interview and focus group data. All authors were responsible
for iterative manuscript writing, critical review for intellectual
content and have approved the final version to be published.

\textbf{Acknowledgements:} We would like to acknowledge all ICU family
members and healthcare providers who have leant their experience and
expertise to this body of work. Additionally we would like to thank Kyla
Brown and Jenny Kelly for their research assistance, Kara Plotnikoff and
Carmen Hiploylee for their assistance in figure and supplemental
material configuration, and Miranda Kavalench for administrative
support.

\textbf{Figure 1.} Key structures and processes foundational to patient
and family centered rounds are summarized as a toolkit with 6 key
practices.\selectlanguage{english}
\begin{figure}[H]
\begin{center}
\includegraphics[width=0.70\columnwidth]{figures/image1/image1}

\end{center}
\end{figure}

\textbf{Table 1.} Examples of Family and Provider Developed Tools to
support 6 Key Elements of PFCC Rounds\selectlanguage{english}
\begin{longtable}[]{@{}lll@{}}
\toprule
\begin{minipage}[b]{0.30\columnwidth}\raggedright\strut
\textbf{6 Key Elements} \textbf{of PFCC Rounds}\strut
\end{minipage} & \begin{minipage}[b]{0.30\columnwidth}\raggedright\strut
\textbf{Patients \& Families} \textbf{Practices}\strut
\end{minipage} & \begin{minipage}[b]{0.30\columnwidth}\raggedright\strut
\textbf{Providers} \textbf{Practices}\strut
\end{minipage}\tabularnewline
\midrule
\endhead
\begin{minipage}[t]{0.30\columnwidth}\raggedright\strut
\textbf{Invitation}\strut
\end{minipage} & \begin{minipage}[t]{0.30\columnwidth}\raggedright\strut
Patients and families are invited to join daily rounds to discuss
patient care plans. If you can't make it, let us know other ways and
times for communication.\strut
\end{minipage} & \begin{minipage}[t]{0.30\columnwidth}\raggedright\strut
``We are starting rounds shortly. We will be reviewing why Joe is in the
ICU and talk about a plan for his care as a team. Would you like to join
in?''\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
\textbf{Orientation}\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
Please let us know what you like to be called and your relationship to
the patient, and how you are involved in your loved one's care.\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
Before/at the start of rounds: \textbf{I} -- Introductions/Invitation
\textbf{D} - Definition \textbf{E} - Encouragement \textbf{A} --
Alternatives\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
\textbf{Active Engagement}\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
Utilize the \textbf{Family Note-Taking/Rounds Participation Tool} to
help organize your questions and thoughts prior to rounds\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
``Are there other things you want us to know about how Joe's doing?''
``What do you think Joe would think?''\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
\textbf{Summary}\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
We should provide in summary: \textbf{Big Picture}: ``What are the main
concerns today?'' \textbf{Progress:} ``Is today better, the same or
worse? \textbf{Plan:} ``What is the plan for today?'' ``What things will
be changed? Why?''\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
5 Ps Mnemonic: Big \textbf{P}icture, \textbf{P}rogress, \textbf{P}lan,
Consider: \textbf{P}rognosis \textbf{P}otential Problems\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
\textbf{Questions}\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
``Can you explain to me what you meant by SBT?'' ``When do you expect
him to get the breathing tube out?'' ``How common is this kind of
confusion?''\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
``Was there anything that you didn't hear or understand that you'd like
to talk about later?''\strut
\end{minipage}\tabularnewline
\begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
\textbf{Communication} \textbf{Follow-Up}\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
``I think I understand but our daughter should be here before we make
any decisions. Can we schedule a meeting later?''\strut
\end{minipage} & \begin{minipage}[t]{0.32\columnwidth}\raggedright\strut
``I'll have a better idea of the treatment options after I talk to your
oncologist/ review Joe's chart\ldots{}can we schedule a meeting
later?''\strut
\end{minipage}\tabularnewline
\bottomrule
\end{longtable}

\textbf{Table 2.} Family Rounds Participation Tool to Support Active
Engagement. This template coaches family on how they can help the
healthcare team best care for their loved one.\selectlanguage{english}
\begin{longtable}[]{@{}ll@{}}
\toprule
\textbf{Active Engagement} Learning from family about the patient and
respecting their wishes to help & \textbf{Active Engagement} Learning
from family about the patient and respecting their wishes to
help\tabularnewline
\midrule
\endhead
\textbf{Family Rounds Participation Tool:} As someone who knows the
patient well, please reflect and give information to the team on the
first box while journaling or participating in rounds as this may guide
the care provided by the team. & \textbf{Family Rounds Participation
Tool:} As someone who knows the patient well, please reflect and give
information to the team on the first box while journaling or
participating in rounds as this may guide the care provided by the
team.\tabularnewline
\textbf{About the Patient} Please help us get to know your loved one.
This will help direct the team's care plan. & \textbf{Abilities and
Limitations} What is the patient's ability to care for self? Appetite?
Memory? Social life? \textbf{Values and goals} What would patient want?
What would patient not want? What could patient live with? Example:
\emph{``He wouldn't mind the breathing tube if he had a reasonable shot
of coming off after a few days.''} \textbf{Experience} Does he/she seem
in pain? How does he feel? Does she seem confused?\tabularnewline
\textbf{Take Home Message} The team should provide a summary for you
after rounds. If this is missed, please ask for one! & \textbf{Big
Picture:} What are the main problems affecting the patient?
\textbf{Progress:} Is today better, same or worse? \textbf{Plan:} What
is the plan for today? For the week? What treatment will be changed and
why? Are there upcoming tests or procedures?\tabularnewline
\textbf{Opportunity for Questions} You can always pass on questions for
one of the team to ask on your behalf. & What do you think your loved
one would want to know? It sometimes helps to write down questions ahead
of time as a reminder. Example: \emph{``Can you explain to me what you
meant by SBT?'' ``When do you expect him to get the breathing tube
out?''}\tabularnewline
\bottomrule
\end{longtable}

\textbf{References}

1. Davidson J, Aslakson R, Long A, et al. Guidelines for Family-Centered
Care in the Neonatal, Pediatric, and Adult ICU. Crit Care Med
2017;45:103-128.

2. Olding M, McMillan S, Reeves S, et al. Patient and family involvement
in adult critical and intensive care settings: a scoping review. Health
Expectations 2015;19:1183-1202.

3. Santiago C, Lazar L, Jiang D, et al. A survey of the attitudes and
perceptions of multidisciplinary team members towards family presence at
bedside rounds in the intensive care unit. Intensive and Critical Care
Nursing 2013;30:13-21.

4. Au S, Roze des Ordons A, Soo A, et al. Family participation in
intensive care unit rounds: Comparing family and provider perspectives.
J Crit Care 2017;38:132-136.

5. Seaman J, Arnold R, Scheunemann L, et al. An Integrated Framework for
Effective and Efficient Communication with Families in the Adult
Intensive Care Unit. Annals of the American Thoracic Society
2017;14:1015-1020.

6. Rea K, Rao P, Hill E, et al. Families' experiences with pediatric
family-centered rounds: a systematic review. Pediatrics
2018;141(3):e20171883.

7. Jacobowski N, Girard T, Mulder J, et al. Communication in Critical
Care: Family Rounds in the Intensive Care Unit. Am J Crit Care
2010;19:421-430.

8. Cao V, Tan L, Horn F, et al. Patient-Centered Structured
Interdisciplinary Bedside Rounds in the Medical ICU. Crit Care Med
2017;46:85-92.

9. Roze des Ordons A, Au S, Blades K, et al. Family participation in ICU
rounds -- working towards improvement. J Eval Clin Pract.~2020 Jan 9.
doi: 10.1111/jep.13345.

10. Au S, Roze des Ordon A, Leigh J, et al. A Multicenter Observational
Study of Family Participation in ICU Rounds. Crit Care Med
2018;46:1255-1262.

11. General Medical Council. Consent - patients and doctors making
decisions together.
https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/consent.
Accessed July 8, 2019.

12. Institute for Patient and Family Centered Care. Better
Together.\emph{http://www.ipfcc.org/bestpractices/better-together-toc.html.}Accessed
July 8, 2019.

13. Sheridan S, Harris R, Woolf S. Shared decision making about
screening and chemoprevention. Am J Prev Med 2004;26:56-66.

14. Au S, Roze des Ordon A, Amir Ali A, et al. Communication with
Patient Families in the Intensive Care Unit: A Point Prevalence Study.
2019; unpublished results, submitted for review.

15. Lane D, Ferri M, Lemaire J, et al. A systematic review of
evidence-informed practices for patient care rounds in the ICU. Crit
Care Med 2013;41(8):2015-2029.

16. Nelson J, Angus D, Weissfeld L, et al. for the Critical Care Peer
Workgroup of the Promoting Excellence in End-of-Life Care Project.
End-of-life care for the critically ill: A national intensive care unit
survey. Crit Care Med 2006;34(10):2547-2553.

17. Charles C, Gafni A, Whelan T. Decision-making in the
physician--patient encounter: revisiting the shared treatment decision
making model. Soc Sci Med 1999;49:651-661.

18. Entwistle V, Watt I. Patient involvement in treatment
decision-making: The case for a broader conceptual framework. Patient
Education and Counseling 2006;63:268-278.

19. Provonost P, Needham D, Berenholtz S, et al. An intervention to
decrease catheter-related bloodstream infections in the ICU. N Engl J
Med 2006;355:2725-2732.

20. Haynes A, Weiser T, Berry W, et al. A surgical safety checklist to
reduce morbidity and mortality in a global population. N Engl J Med
2009;6:491-499.

21. Schiller W, Anderson B. Family as a member of the trauma rounds: A
strategy for maximized communication. J Trauma Nurs 2003;10:93-101.\selectlanguage{english}
\begin{figure}[H]
\begin{center}
\includegraphics[width=0.70\columnwidth]{figures/Toolkit-Figure-1---6-elements-final/Toolkit-Figure-1---6-elements-final}

\end{center}
\end{figure}

\textbf{Hosted file}

\verb`Toolkit Table 1 - Examples.docx`  available at \url{https://authorea.com/users/313473/articles/443959-best-practices-toolkit-for-family-participation-in-icu-rounds}

\textbf{Hosted file}

\verb`Toolkit Table 2 - Active Engagement Tool.docx`  available at \url{https://authorea.com/users/313473/articles/443959-best-practices-toolkit-for-family-participation-in-icu-rounds}

\selectlanguage{english}
\FloatBarrier
\end{document}

