Intervention Codesign in the Pediatric Cardiac Intensive Care Unit to Improve Family Meetings

Abstract

Context:

Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team.

Objectives:

1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills.

Methods:

Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility.

Results:

Fifteen professionals and 6 parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting 5 distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings.

Conclusion:

A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.

Introduction

While family meetings (planned meetings between clinicians and families) hold the possibility of supporting families in shared decision-making (SDM) in places like the cardiac intensive care unit¹, consistent evidence exists that these conversations are dominated by physicians^2,3, do not adequately incorporate non-physicians^2,4, and miss opportunities to assess parental understanding and empathize with stressed parents.² Optimizing communication in these meetings is of central importance given that parents of children with advanced heart disease have been shown to have an inaccurate understanding of their child’s prognosis⁵ and report being unprepared if their child dies,⁶ while experiencing prolonged periods of stress after hospitalization.⁷

To achieve SDM⁸ with parents, the interprofessional team should provide a coherent narrative regarding the patient’s medical condition, prognosis, and treatment options and then assess parents’ understanding. The team should also elicit parental questions and concerns, and respond to their emotions.^9,10 Finally, clinicians should elicit parental values to inform clinical decisions.¹¹ Given the complexity of these conversations, professional groups have encouraged increasing interprofessional teamwork in family meetings to best meet the communication needs of families, yet the roles each team member should perform have not been articulated.^1,12,13

In parallel with these considerations, the role of interprofessional SDM-- which occurs within the team (before meeting with the family) to determine which treatment plans are appropriate to offer to patients and families-- needs clarification.¹⁴ Little evidence exists for how to successfully achieve interprofessional SDM. Experts have argued that interprofessional SDM could be optimized by implementing additional team processes and roles to expand participation across the range of professionals participating, although teams would need training in these new processes and roles.^14-18

Fortunately, established team training interventions such as TeamSTEPPS have been shown to improve teamwork, role relationships, and organizational and patient outcomes.^19-21 Drawing upon teamwork and intervention research^18,22,23, our group sought to build an intervention to improve teamwork related to family meetings in the cardiac intensive care unit (CICU), recognizing the need to tailor the intervention to the clinical context and aiming to address two specific goals of improving non-physician contributions and promoting parental SDM. We also wanted the intervention to promote team SDM across the interprofessional team to reach consensus about which treatments to offer patients and families.^14,24

To optimally utilize insights from all stakeholders, we employed a codesign process to create an intervention to improve SDM for interprofessional teams and parents of children hospitalized in the CICU, focused on standardizing how the team interacts with families in family meetings (team-family interactions), and how the team members interact with each other (team-team interactions) when preparing for and conducting family meetings.²⁵ The comprehensive intervention intended to develop 1) team processes with documentation to support the team and family preparation, 2)communication skills training, and 3) role clarification for different tasks performed by the team in the team and family meeting. This report focuses on the feasibility of conducting a codesign process to build an intervention for family meetings and what was learned from the codesign process about which elements should be included in the intervention. The results of the intervention will be reported elsewhere.

Methods

Experience-based codesign

Experience-based codesign (EBCD) is a method for incorporating the thoughts and experiences of relevant stakeholders, including clinicians, patients, and families, to ensure the utility and success of a proposed improvement or intervention by enabling the stakeholders’ active participation in the design process.²⁶ The EBCD approach has been used in a variety of healthcare contexts.^27-32 The project was overseen by an interdisciplinary research team consisting of a pediatric palliative care specialist, a CICU attending intensivist, a CICU nurse scientist-clinical nurse specialist, an ICU clinical social worker, and a social psychologist. The research team helped develop the prototype materials discussed in the codesign and interpret feedback from the codesign sessions.

Study Participants

The codesign process occurred in the CICU of Children’s Hospital of Philadelphia (CHOP) from 2019-2020. Both clinicians from the CICU and parents of children who were or had been hospitalized in the CICU were enrolled. Clinicians were recruited through a study announcement at CHOP faculty meetings and via messages on a faculty listserv. Parents’ invitation was distributed by CHOP’s Family Advisory Council. Basic demographics were also collected including participants’ gender, race, ethnicity, and professional identity or status as a parent.

Structure of the Codesign

The codesign consisted of 10 one-hour monthly sessions, each of which were held twice, and were audio-recorded and transcribed. The first 9 sessions were in person with the last session done virtually due to COVID. Each session examined a proposed aspect of the intervention.

Feasibility Assessment: Participation and Engagement Survey of Participants

Enrollment and attendance in the codesign session were tracked for feasibility of the process. After all 20 sessions, the codesign participants completed a validated tool about their engagement in the codesign^33-35 measuring participants’ perceptions of the codesign facilitator’s effectiveness and participants’ perceptions of their own involvement and commitment to the codesign process.

Data Analysis

Data collection and analysis were performed iteratively using a modified grounded theory approach.³⁶ Between codesign sessions, research team members reviewed the audio recordings and notes for the past session. The team then created a summary document that was circulated to participants prior to the next session to solicit any additional feedback or clarification.

Results

Codesign Participants

Of the 21 enrolled participants, 16 were CICU clinicians, including 2 attending physicians, 11 nurses, 1 social worker, and 1 psychologist. The remaining six individuals were parents of children currently or previously hospitalized in CHOP’s CICU (Table 1). Four participants withdrew before completion of the year-long intervention; 2 parents who moved out of state and 2 nurses who transitioned out of the CICU.

Table 1.

Participant Characteristics and Engagement in Codesign Process

Participant Characteristics	Frequency n (%) n= 17
Sex
Female	16 (94.1)
Male	1 (5.9)
Race
Asian	1 (5.9)
African American	1 (5.9)
White	15 (88.2)
Hispanic
Yes
No	16 (94.1)
Unknown	1 (5.9)
Role
Parent of patient	3 (17.6)
CICU attending	2 (11.8)
Nursing Clinical Supervisor	6 (35.3)
Bedside nurse	4 (23.5)
Social worker	1 (5.9)
Psychologist	1 (5.9)
Participants Shared the Codesign Mission
Not Present	0
Present but limited	3 (17.6)
Present	13 (76.5)
Not applicable	1 (5.9)
Actively planned, implemented, and evaluated activities
Not Present	0
Present but limited	8 (47.1)
Present	4 (41.2)
Not applicable	2 (11.8)
Participants offered a variety of resources and skills
Not present	0
Present but limited	2 (11.8)
Present	15 (88.2)
Not applicable
Participants clearly understood your role
Not present	0
Present but limited	1 (5.9)
Present	16 (94.1)
Participants regularly participated in meeting and activities
Not present	0
Present but limited	8 (47.1)
present	9 (52.9)
Participants communicated well with others
Not present	0
Present but limited	2 (11.8)
Present	15 (88.2)
Participants felt a sense of accomplishment
Not present	0
Present but limited	2 (11.8)
present	15 (88.2)

Feasibility of Codesign: Participation and evaluation of the facilitator and engagement

Of the 17 participants who completed the intervention, mean attendance in the codesign sessions was 68%. 100% of participants completed the engagement survey and reported that the facilitator was committed, provided appropriate leadership, promoted diversity of views and equity, and showed strength in communication skills and negotiating disagreements. 87% of participants endorsed planning, implementing, and evaluating activities as part of the group “fully” or “in a limited way”. Further perceptions of participant engagement in the codesign are in Table 1 (see also Table 3; Quotations 10-12).

Table 3.

Codesign Participant Quotes Regarding Team-Family and Team-Team Content

Team-Family Interactions:
Family Meeting Preparation Worksheet
Quote 1
	“And I think just even putting out there, like you can ask for a specific doctor or we want you to ask questions, like saying that in advance I feel like elicits more from a family instead of like we’re setting up this meeting because we think we need to have this meeting and you’re going to sit there and listen, and then parents are like what do I ask? Do I even have a question? And so, I think trying to get those gears in motion before is helpful, especially when you’re in an ICU and you’re just like moment to moment that can kind of get that moving.” – Social Worker
Quote 2
	“I mean, to me, our nurses were our right arm. And so, when all the chips were down and everybody else was gone, now as a family, that’s when I’m really hitting my nurse. Okay. What did that mean? And for them to have the same type of a document, so now we all are very consistent in the message, because then the nurse can even reflect back. ‘Well, did the liaison give you the paperwork? Let’s go over it again. What questions on there are really worrying you the most? Because we want to make sure we write that down. Feel free.’“ – Parent
Skill Development of Delivering serious news
Quote 3
	“I think it’s easier [sic] to kind of sit here and think about what you might say in the situation, but the simulation forces you to actually put the words together and say it.” – Social Worker
Quote 4
	Regarding the utility of practice: “I do think it’s hard if you don’t do it all the time, that in the moment, you know, like, you can’t take a timeout when you’re talking to a parent, and kind of regroup your thoughts, depending on, you know, what the parent is expecting, and I think that’s what makes it hard, that you may realize that you’re not connecting with the family, but in order to change the way, you have to put some thought into it, and when you’re sitting across from a parent, that never feels like—you can’t say ‘I’ll come back in two minutes when I’ve gathered my thoughts,’ ‘cause you have them. You know, and I think that’s what’s hard, if it’s not something that you do normally that, in order to practice it, it’s hard to practice it because everyone reverts to how they normally say things” -Physician
Team-Team Interactions:
Four Family Meeting Roles
Quote 7
	“I think it is important for the Facilitator and Information Giver to be two separate people, and I think most of the meetings that I go to, the Facilitator and Information Giver are one and the same. And it does make it challenging when you’re like, ‘We’ve now spent 45 minutes discussing the intro of what we were going to talk about, how are we going to get to what we really were trying to get through?’ So I think that would be helpful.” – Nurse
Quote 8
	On who should fill which roles (in context of talking about Documenter role): “I really like what you said about that any role could be any person, and so I would think that it should be identified maybe in that pre-meeting time, like who’s going to do what role, um, because I think depending on what the goal of the meeting is, it could be the attending (laughter).”
Professional Role Activities to expand awareness of scope of practice
Quote 5
	“I like 2 and 3, because I wasn’t aware of a lot of the things in #3 that we already do, or could do easily.” – Nurse
Quote 6
	“I think it’s good just to help people be aware of what they actually can do.” – Nurse
Interprofessional Team Communication skills
Quote 9
	“… always going back to why we should do this, or why this is beneficial, because I think sometimes we do fail to realize that like, we’re just trying to make your job easier, and if we have all of the information, all of our jobs are easier, um, and so this is a way to accomplish that. And so coming back to like, what is the goal, like why do we do this.” – Nurse
Codesign team evaluation of the facilitator and engagement
Quote 10
	“This has been a very different format for me, personally as someone who’s worked here for 20 years, and I’ve really enjoyed it. I’ve found it very valuable, even as I’ve transitioned into other roles and I know I’ve been harder to pin down, um, I’ve really enjoyed this and it’s been, because of that it’s stayed a priority. So thank you.” – Nurse
Quote 11
	“I’ve been honored to be a part of it, I will say, it’s uh … I so believe in it from multiple levels, and um, it’s just so important, and it’s probably easier for me because I don’t have a child here right now, where some of the other parents are trying to parent through it..”-Parent
Quote 12
	“It’s been very interesting for me to hear like, from other people’s input, especially from the parent input too. It’s been really neat, and very enlightening.” – Physician

Codesign Process and Resulting Intervention Elements

The research team divided the findings and resulting intervention components into the documents, roles, and skills needed when the team interacts with family members (Team-Family interactions) and when the team coordinates their own activities (Team-Team Interactions). Table 2 outlines main elements of the intervention.

Table 2.

Intervention Elements and Resulting Documents, Roles, and Skills

Intervention Elements	Documents	Roles	Skills/Knowledge
Team-Family Components
Family Preparation for Meeting	Family Meeting Preparation Worksheet (5 versions)	Liaison between Family and Team	Orientation to Family Preparation Worksheetcontent
Support for Families in the Meeting	CICU Summary Worksheet	Clinician Documenter	Giving Serious News training
Team-Team Components
Team Preparation for the Family Meeting	Team Pre-meeting Worksheet	Facilitator for Pre-Meeting	- Professional Role Activities to expand awareness of scope of practice -Drills for CICU Pre-meeting -training for Facilitator of Pre-Meeting -Interprofessional TEAM skills training
Team Function in Family Meeting	Family Meeting Outline (5 versions)	4 Family Meeting Roles: Facilitator, Information giver, Documenter, Emotional support coordinator	- Professional Role Activities to expand awareness of scope of practice -Interprofessional TEAM skills training
Team Building via Debrief after Family Meeting	Post-Family Meeting Debrief Questions	Facilitator of Debrief	- Professional Role Activities to expand awareness of scope of practice -Interprofessional TEAM skills training

Team-Family Interactions

1. Documents

1.1. Family Meeting Preparation Worksheet (for Parents)

Parents of patients in the CICU have reported (in another as-yet unpublished study) that they received little to no preparation for the family meeting and often experienced anxiety when not told the reason for the meeting.

The codesign group identified the benefit of standardizing how the team prepared families for a family meeting (Table 3; Quotations 1-2). A prototype of a family-facing document including information about family meetings and question prompts for parents to prepare for the meeting was discussed in Session 2.. The group then brainstormed and described 5 distinct types of meetings: 1) discussion to resolve conflicting information received by the family, 2) discussion and potential reassessments in the midst of a prolonged hospitalization, 3) discussion prior to discharge or transfer from the CICU, 4) conversation to support parental decision-making, and 5) meeting to discuss new serious news about the patient. These 5 meeting types were confirmed in Session 3 and the research team proposed questions for each meeting type. These were edited by the codesign full group in session 10 and resulted in 5 different parental preparation worksheets.

1.2. CICU Family Meeting Summary Worksheet

Codesign participants discussed families’ request to have a record of the meetings. Participants agreed that having a clinician complete a written document for families to have after the meeting would be helpful. A proto-type document with information about who was present in the family meeting and what next steps were proposed in the meeting was shown to the codesign group in Session 5 and revised based on feedback. The role of the person doing the documenting is described below.

2. Role Responsibilities

Participants identified in Session 3 the need for a liaison between the team and family to explain the purpose of the Family Meeting Preparation Worksheet to parents and bring any questions and communication preferences from the family back to the team prior to the family meeting. Social work participants suggested that they could serve in this liaison role with adequate orientation to the worksheet and the codesign group endorsed this plan.

3. Skill Development

3.1. Delivering Serious News

Codesign participants reflected on published data showing a disconnect between team and family understanding of the patient’s prognosis.³⁷ Attendings, nurses, and social workers described difficulty conveying information clearly to families and the desire for further formal training in communication of serious news, a common aspect of all meeting types. Family participants echoed experiences of challenging communication and applauded the desire for further training. Session 8 was dedicated to a demonstration of a well-established pedagogical method for training in delivering serious news and responding to the expected emotion, Vital Talk³⁸, to determine if this was appropriate to include in the intervention. A trained actor played a parent and a research team member who is a CICU attending played a learner in a discussion of conveying serious news about a new post-natal hypoplastic left heart diagnosis. All participants responded positively to the demonstration indicating that Vital Talk would be valuable in the intervention given its verisimilitude and the effectiveness of having an opportunity to practice these difficult conversations (Table 3; Quotes 3-4).

Team-Team Interactions

1. Documents

1.1. Team Pre-Meeting Worksheet

In Session 4, a nominal group technique³⁹ exercise was conducted where participants were asked to reflect on what aspects of team preparation are most important to lead to a successful family meeting. Participants created a list of topics which were organized into the categories “who should be present or contacted prior to the meeting,” “who initiated the meeting,” “where the meeting will take place,” “what needs to be discussed: about the family, the team’s goals for the meeting, and team member roles within the meeting,” “how preparation will happen,” and “when will the meeting and pre-meeting take place.” This conversation highlighted the importance of a standardized review process of these items by the team prior to meeting with the family.

As a result, a prototype of a Team Pre-Meeting Worksheet including the described domains was offered to the participants after Session 4. This worksheet covered questions the team should answer prior to meeting with the family and included not only who the team thought should participate in the meeting, but who the family requested participate. It also included a prompt for the team to have a concise discussion of what information should be shared with the family to reach consensus within the team before meeting with the family. It explicitly asked for parental communication preferences to ensure that information was conveyed to the family in a way that was most helpful to them and then prompted the team to practice which exact words should be used when speaking with the family.

1.2. Family Meeting Outlines

Codesign participants reviewed data on the variability of how family meetings were conducted and agreed they would benefit from standardization drawing from best practice. In response to this request, a family meeting outline was designed that had questions corresponding to the Family Meeting Preparation Worksheet and reflected the 5 different types of meetings identified by the codesign group (Table 4).

Table 4.

Family Meeting Outline variations based on the 5 types of meetings

Meeting Type	Unique Features
All Meetings	Introductions Set the Agenda Assess the family’s understanding of the diagnosis and prognosis “It’s helpful for us to hear from you what you’re hearing about your child’s status now from all the doctors and nurses caring for them.” Have the information giver provide the update on the patient’s condition Respond to parental emotion regarding information Ask family members what questions they have Ask family: “What does it mean to be a good parent for your child” “Are there other support services you need? “Would It be Helpful to Learn About Other Support Services Available?” Summarize the meeting.
Discussion to Resolve Conflicting Information	Assess the family’s understanding of the diagnosis and prognosis variations: “What is your understanding of your child’s health issues and the next steps in the treatment plan for your child?” “What conflicting/confusing information have you heard?” “What concerns do you have about the current treatment plan for your child?”
Update After Prolonged Hospitalization	Assess the Family’s Understanding of the Diagnosis and Prognosis variations: “What is your understanding of the current treatment plan for your child?”
Upcoming Discharge or Transfer	Assess the Family’s Understanding of the Diagnosis and Prognosis variations: “What is your understanding of the current treatment plan for your child?” “What have you heard about why your child is ready to leave the ICU?” “What questions or concerns do you have about leaving the ICU?” “What can the team do to help with the transition out of the CICU?”
Supporting Parental Decision Making	Assess the Family’s Understanding of the Diagnosis and Prognosis variations: "What is your understanding of the possible treatment options for your child?" Ask Family about Their Values: “What is MOST IMPORTANT to you in caring for your child?” What are you hoping for? What are you worried about? What does it mean to be a good parent to your child now? Summarize Family’s Values and Describe Different Treatment Plans Ask if they want a recommendation based on what is most important to them If yes, provide a recommendation for the plan based on their values
Serious News Conversation	Given the Patient’s Medical Condition, Outline the Decisions That Need To Be Made and When Immediate decisions? This week? This month? Next six months?

1.3. Post-Family Meeting Debrief Questions

Research team members identified that best practice for team behavior change includes elements of intentional reflection incorporated as a debrief after a team activity. The research team drafted some “Post-family Meeting Debrief Questions” for the codesign group to reflect upon in Session 10. Feedback was positive regarding the benefit of a team debrief solely focused on the interprofessional teamwork during the family meeting. Revisions were provided by participants and consensus approved the final list.

2. Roles and Responsibilities

2.1. Facilitator to Pre-meeting

Session 7 asked participants to brainstorm challenges that may arise in a team pre-meeting, including obstacles to setting a clear, inclusive agenda for the family meeting, and how to prepare for the discussion of the agenda items with the family. Recognizing the list of challenges that could arise in the meeting, the group identified the tasks of the facilitator for the pre-meeting including time management, creating and maintaining general team unity through effective group communication skills and healthy group dynamics, and ensuring that all voices are heard in spite of team hierarchies. Additionally, the facilitator would have the responsibility of balancing valid, yet competing, priorities among clinicians when deciding agenda topics. This included respecting the strengths, knowledge, and goals of every clinical specialty; realizing that every specialty might not be central to that specific meeting; and trusting members’ good faith efforts to move the meeting toward a positive outcome when asking questions and providing feedback. A Facilitator Guide was developed by the research team offering suggested language and structure for meetings based on the pre-meeting worksheet questions. The codesign participants agreed that this role served an important purpose and that a non-physician lead would be ideal to counter the typical hierarchy. They endorsed a nurse leader to play this role with a social worker cross-trained for instances when nursing could not be present. The facilitator guide and the coaching plan for this role were reviewed with the nurse leaders who participated in the codesign and they made constructive improvements to the draft and training plan.

2.2. Four Family Meeting Roles

The need for distinct and clear clinician roles in the family meeting was first raised by codesign participants in Session 4 and a prototype of 4 roles was offered in Session 5. The roles were described as: 1) a facilitator of the family meeting (ideally not the person who would be giving most of the information during the meeting), 2) an information giver who would provide new information, 3) a documenter who would fill out the CICU Summary Worksheet for the family, and 4) an emotional support coordinator who would have the authority to pause the conversation at any point when the family (or other team members) appeared unable to process more information due to a strong emotional response. Participants strongly affirmed the value of having these roles clearly identified and suggested that they should be explicitly assigned during the team pre-meeting (Table 3; Quote 7-8). Codesign participants also agreed that the facilitator for the family meeting should lead discussion of the debrief questions after the family meeting.

3. Knowledge and Skill Development

3.1. Professional role activities to expand awareness of scope of practice

Session 4 began with a presentation of pilot data about team meetings in preparation for family meeting collected by the research team¹⁶, which found that attendings did most of the talking. Additionally, data describing similar patterns of participation with variability in why non-physicians spoke in these meetings were presented. In Session 6, participants discussed barriers to meaningful participation by all clinicians and how non-physicians could be given a larger role. To increase awareness of the scope of practice of clinicians from different professions, the research team offered codesign participants an activity where they discussed tasks for the pre-meeting and family meeting that could be conducted by a range of professionals. Clinicians from different professions identified which family meeting roles their profession had prepared them to complete by circling them on a list. The activity sparked a discussion among nurses and social workers who realized that they could perform a variety of tasks. The codesign group thought this activity would be useful for teams to routinely undergo to ensure wider interprofessional participation (Table 3; Quotations 5-6).

3.2. Drills for CICU Pre-Meeting

Session 7 identified communication challenges that may arise in interprofessional agenda setting for a meeting, and short dialogues were drafted by the research team to allow intervention participants to practice psychologically safe and inclusive language for handling potential conflicts or asking for clarification from colleagues. When these dialogues were tested with participants, they were noted to be “ideal” language that the group would strive to achieve and would be a valuable aspect of the intervention.

3.3. Interprofessional Team Communication Skills

To augment the expansion of professional roles proposed in the intervention, the codesign group supported using a Vital Talk methodology to teach a cognitive map for interprofessional team communication skills in Session 9.⁴⁰ Similar to the demonstration of the didactic and simulated role play for delivering serious news to patients, four skills were discussed and then role modelled: Trust your team, respond to Emotion, Ask for Clarification, and Make room for others/yourself. This demonstration was followed by a simulated role play between a confederate learner social worker and a simulated physician (played by a real CICU attending). Participants provided information for framing these exercises for colleagues (Table 3; Quote 9). The codesign and research group supported putting these skills together in a simulated family meeting, so a meeting was designed for a facilitator to review the elements of giving serious news and interprofessional communication skills to reinforce these skills in the last session of the intervention.

Discussion

This project sought to learn about opportunities for improvement for how pediatric CICU teams and the parents of children in the CICU planned for and participated in family meetings, to collaborate in designing interventions for both groups, and to assess the feasibility of this collaborative process. The codesign process can help reduce entrenched barriers to changing clinical practice where clinicians realize the practice may not be ideal, but are uncertain for how to improve what they do.^26,29

In this project, codesign was feasible in allowing parents and clinicians to work together and learn from each other about challenges and opportunities when preparing for and conducting family meetings as demonstrated by the attendance and level of engagement recorded in the post-survey. The result of this process was tailored intervention materials appropriate to the CICU with roles and skills to support interprofessional and parental SDM. The feasibility this project has demonstrated could be replicated in other ICU settings to allow for support materials to be further adapted to the unique but similar patient populations in the pediatric ICU or neonatal ICU or even adult ICUs.

Role delineation was a central finding in the codesign with participants acknowledging that without a role defined for certain activities, they were unlikely to be performed reliably.^18,41 Additionally, both families and the clinical team recognized the importance of having documents available to clinicians in these new roles to support both parents and teams in the family meeting preparation process. These documents reduced the cognitive load for the roles and ensured consistent performance of the roles.

The clinical team had a strong recommendation that we design 5 different family meeting outlines and parent preparation worksheets for the different clinical scenarios that were most common in the unit-- a novel finding. Participants also strongly supported activities to help clinicians think about the range of roles that they could play in preparing for and conducting family meetings, even if beyond their current scope of practice.²⁴ New materials, the Codesign Team learned, would not be successful without also building communication skills within the interprofessional team to implement the new processes and support colleagues in taking on new roles within the family meeting.²²

Four limitations warrant discussion. Our findings based on participants from one CICU may not be generalizable to other CICUs or other types of pediatric ICUs. Due to scheduling restraints, cardiac surgeons were not able to participate in the study although they often have important conversations with other CICU clinicians and family members. We had more significant representation from nurses and parents than social workers, front line clinicians, and physicians, so the preferences of a broader range of individuals in these roles may not have been represented. We also included people who would identify as communication champions within the unit who self-selected to participate in the codesign process. As a result, this may limit the conclusions we can draw about other CICU clinicians or parents of CICU patients who are less supportive of communication optimization.

Despite these limitations, the current project demonstrated the feasibility of engaging participants in codesigning an intervention to optimize communication within the clinical team and between teams and families to support team and family SDM.