As patients, family members, and health care providers serving on the Family Advisory Council (FAC) of the Patient and Family-Centered I-PASS Safer Communication On Round Every Time study,1,2 we read, with interest, the scoping review by Knighton and Bass3 on the implementation of family-centered rounds (FCRs). In their review, the authors highlighted several challenges in implementing and evaluating FCRs. They note that limited high-quality research exists to reveal what constitutes a successful FCR rounding encounter. They, additionally, describe the gaps regarding the clinical effectiveness of various interventions to improve FCRs as well as if and how FCRs lead to improvements patient safety and outcomes or changes in clinical decision-making. Although we look forward to further research to better target these gaps, we wish to first share our reflections on the current evidence and make suggestions for the future of patient- and family-centered rounds (PFCRs) from the patient and family viewpoint.
As family members, the majority of us did not know what rounds were before we experienced them during an admission. The learning curve is steep, pressure is immense, and fears of somehow failing our children, appearing dumb, or seeming like an incompetent parent can almost paralyze you. As a result, it may appear that we are disengaged or do not value PFCR. It would help us prepare for PFCRs if were to learn what it constitutes at the time of admission, instead of as the team is walking through the door. A brief orientation to PFCRs by the admitting team is highly valued, and, just like your trainees, it may take us several iterations of PFCR to learn how to best participate. But we quickly see that PFCRs are an essential point of communication to engage with providers, share our expertise, and understand the medical plan that we have to help execute.
A PFCR is a potent opportunity to increase the knowledge base, understanding, and empowerment of every person present. In their review, Knighton and Bass3 mention the barrier of the perceived conflict between PFCRs and the academic needs to educate trainees, noting that PFCRs can “take the focus away from education and training.” We feel strongly that these goals should not be viewed as mutually exclusive but, rather, that we are all learning together. PFCR inherently shifts the rigid and exclusive role divisions of faculty as teacher, medical trainee as learner, and patient and family as observer. When able and empowered, patients and families value being recognized as the experts in regard to their or their child’s condition and history, often adding important details to the discussion. As an FAC member says, “Ask the parents. We know things that are not in the chart. Be prepared for the plan to change, and, when it does, recognize that together we made it better.” In this role, the patient and family perspectives are essential to make a comprehensive plan. A well-executed PFCR shifts the paradigm to recognize everyone in the room, including the patient and family, is a learner and teacher.
Knighton and Bass3 also note as a barrier trainees expressing concern of learning in front of the family. They note that trainees’ low self-efficacy may decrease their engagement in an FCR. We would like to alleviate some of the providers’ concerns regarding performance and trust by sharing that we see you as a single team, not a collection of individuals with differing levels of experience and authority. Our trust in the team depends more on how you relate, listen, and regard our input than on any single member’s “performance.” It also relies, especially for those in charge, on treating every person in the room with respect and dignity.
Experiencing rounds during countless hospitalizations as a child, 1 FAC member witnessed many trainees give “wrong” answers. “I didn’t see what you thought I saw,” she says. “I didn’t see incompetence. I saw humanity. I saw someone who wasn’t sure what was happening but who would eventually figure it out. I saw someone just like me.”
As patients and families, we feel that being involved in the education of medical students and fellows is an important contribution we can make. An FAC member reported, “When you risk an answer and are wrong or say ‘I don’t know,’ you model how to learn, which is a powerful tool for our own development in managing our or our child’s health. Your courage infuses the room and may make us brave enough to ask questions when we otherwise wouldn’t.”
In addition, Knighton and Bass3 highlight existing barriers in infrastructure and workflow that impede true family engagement on a PFCR. These include the physician-driven scheduling of rounds and ability to arrange interpreters for families with limited English proficiency (LEP). When the flow of PFCR is driven by only the workflow of the physician team, family presence and engagement is threatened. Family members often have to miss rounds to care for other children or work. Scheduling PFCRs in some fashion would offer opportunities for families to plan their day around PFCRs, increasing the likelihood of full participation. A silver-lining of the coronavirus disease 2019 pandemic is a much higher use of technology to include family members not physically present on rounds. Our strong hope is that these methods of inclusion will continue postpandemic and, over time, will become easier for both clinicians and families to use. We recognize scheduling rounds in advance as a complex undertaking but encourage its adoption when and where possible.
Nurse engagement at the beginning of rounds is often difficult to coordinate in a system that, as Knighton and Bass3 note, is still highly physician centric. From our perspective, nurses’ participation in PFCRs is essential, requiring a flipped mindset from “nice to have” to “we can’t start without them.” An FAC member says, “I would have never allowed rounds to happen without my daughter’s nurse there. I couldn’t have. What she knew about my child was just too important.” Nurses know the patient in ways that the rest of the team does not and have the valuable professional insight needed to create the plan. Families rely heavily on nurses. For us, they model how to interact with our doctors and give us the courage to participate. We confirm an understanding or ask follow-up questions of them, solidifying and elevating our knowledge.
As noted by Knighton and Bass,3 the inability to schedule rounds creates multiple barriers to ensuring the presence of interpreter services for LEP patients and families. A foremost need for patients and families is communication in the language in which they are proficient, and that includes access to appropriate interpreter services. This should be a standard during all PFCR experiences and not just when it is convenient. Furthermore, removing the burden from the patient and family having to ask for interpreter services diminishes some of the power differential and avoids a familial sense of deficiency. Taking a universal precautions4 approach to the use of interpreters and committing to the inclusion of LEP speakers is a beginning step toward reducing inequities in health care.
Knighton and Bass3 also frame, as an additional barrier to engagement, that not all families want to hear all the clinical details or may be intimidated by the size of the rounding team. They suggest that if the FCR is the best means to increase family engagement and involvement in a clinical decision, a shift to make PFCRs more family-centered is required. We fully support that call for action but would caution those that believe PFCRs are not a mechanism to engage patients and families. Patients and families may be intermittently overwhelmed, which can be a barrier to participation on that day, but those reactions may not reflect feelings about the PFCR process. We may be quiet, even silent, on some days. Alternately, we may be dysregulated and unpleasant on others. Whatever our presentation, please do not take it personally. We care deeply about our children but are temporarily overcome by the situation. You can help us by remaining committed to the same PFCR process every day with a calm, attentive presence that provides a home we can return to when the overwhelm recedes. We are then able to reengage with less shame and embarrassment.
Ultimately, we are all working in service of the health care’s overarching goal: to deliver effective, patient-centered, timely, efficient, and equitable care that yields safe and high-quality outcomes.5 We believe that refined PFCRs are key in this common pursuit and applaud Knighton and Bass3 for their call to further standardize PFCRs and elucidate best practices. A PFCR has been a life-altering experience for many of us, and we encourage you to keep the mission and continual improvement of PFCRs alive.
As noted by a member of our FAC, “You are entering a brave space. We are all learners here. I am learning to understand my child’s condition better every time we talk together. I need to be prepared to advocate and care for her, and she needs to learn how to do these things for herself. Your visits are one of our most powerful learning opportunities.”
The Patient and Family-Centered I-PASS Safer Communication On Round Every Time Study Family Advisory Council collaborators were as follows: Helen Haskell, MA (cochair); Dale A. Micalizzi, AAS (cochair); Brenda K. Allair, MEd; Michele Anderson, BA; Sally Coghlan-McDonald, JD; Sharon Cray, BBA; Monique Halley; Elizabeth Kruvand, BSc; Katherine P. Litterer, BA; Peggy Markle, BA; Mia Matthews, MPH; Sue McCarthy; Theodore C. Sectish, MD; and Tiffany Vara, BS.
We acknowledge the input of the Patient and Family-Centered I-PASS SCORE Study Coordinating Council who provided support for this manuscript, including the following: Nancy D. Spector, MD (cochair); Christopher P. Landrigan, MD, MPH (cochair; principal investigator); Michele Anderson, BA; Sharon Calaman, MD; Jennifer D. Baird, PhD, MPH, MSW, RN; April Fegley; Jenna Goldstein, MA; Isabella Liss; Alisa Khan, MD, MPH; Jennifer K. O’Toole, MD, MEd; Shilpa J. Patel, MD; Glenn Rosenbluth, MD; and Amy J. Starmer, MD, MPH.
FUNDING: The Safer Communication On Round Every Time project was funded through a Patient-Centered Outcomes Research Institute award (DI-2017C3-9232): Disseminating & Implementing Patient- and Family-Centered I-PASS, an Evidence-Based Family-Centered Hospital Communication Program to Improve Patient Safety. The funder/sponsor did not participate in the work.
COMPANION PAPER: A companion to this article can be found online at www.hosppeds.org/cgi/doi/10.1542/hpeds.2021-006015.
POTENTIAL CONFLICT OF INTEREST: The authors have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: Drs O’Toole and Calaman have consulted with and hold stock in the I-PASS Patient Safety Institute, a company that trains institutions in best handoff practices and aids in their implementation; and Drs Vara, Anderson, and Baird have no financial relationships relevant to this article to disclose.