Family Participation during Intensive Care Unit Rounds: Attitudes and Experiences of Parents and Healthcare Providers in a Tertiary Pediatric Intensive Care Unit Carolyn A. Stickney, MD1, Sonja I. Ziniel, PhD2,3, Molly S. Brett, BA1, and Robert D. Truog, MD1,4 Objective To compare the experiences and attitudes of healthcare providers and parents regarding parental participation in morning rounds, in particular to evaluate for differences in perception of parental comprehension of rounds content and parental comfort with attendance, and to identify subgroups of parents who are more likely to report comfort with attending rounds. Study design Cross-sectional survey of 100 parents and 131 healthcare providers in a tertiary care pediatric medical/surgical intensive care unit. Descriptive statistics were used to analyze survey responses; univariate and multivariate analyses were performed to compare parent and healthcare provider responses. Results Of parents, 92% reported a desire to attend rounds, and 54% of healthcare providers reported a preference for parental presence. There were significant discrepancies in perception of understanding between the 2 groups, with healthcare providers much less likely to perceive that parents understood both the format (30% vs 73%, P < .001) and content (21% vs 84%, P < .001) of rounds compared with parents. Analysis of parent surveys did not reveal characteristics correlated with increased comfort or desire to attend rounds. Conclusions A majority of parents wish to participate in morning rounds, whereas healthcare provider opinions are mixed. Important discrepancies exist between parent and healthcare provider perceptions of parental comfort and comprehension on rounds, which may be important in facilitating parental presence. (J Pediatr 2014;164:402-6).

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ommunication with parents plays a vital role in the care of critically ill children in intensive care units (ICUs). Several national organizations have been strong proponents of family-centered rounds in pediatrics as a means of improving communication.1 Although rounds have historically taken place at the patient bedside, in the latter portion of the twentieth century, many pressures, including those of time and confidentiality, prompted a movement away. A 1997 study showed that bedside rounds on an internal medicine service were at least as satisfactory to patients as conference room rounds.2 Following a 2001 report by the Institute of Medicine that endorsed “patient-centered care,” the American Academy of Pediatrics and the Institute for Family-Centered Care issued a joint policy statement in 2003 that recommended that hospitals make attending rounds in patient rooms, with family present, standard practice.3 Subsequently, a pilot study of parental participation in rounds on a ward in a large children’s hospital revealed that 85% of parents wished to participate in morning rounds.4 Differences exist, however, between rounds on the ward and rounds in a pediatric ICU. Care for children in an ICU is frequently much more complex, can require complicated medical technologies, and may involve care at the end of life. Consequently, the content of morning rounds is prone to be both more technical and sensitive in nature, which presents challenges to parental involvement. Acknowledging these challenges, the American College of Critical Care Medicine Task Force has nonetheless recommended that parents of children in the ICU be given the opportunity to participate in rounds.5 In light of these challenges, we hypothesized that several differences may exist between providers and parents of children in the ICU. The objective of this study was to describe and compare the current attitudes and perceptions of healthcare providers and parents regarding parental attendance of morning rounds and to explore predictors of parental attendance in our pediatric ICU.

Methods This cross-sectional survey study of parents and healthcare providers was conducted at a tertiary academic children’s hospital in a combined medical/surgical ICU that has approximately 2000 admissions per year. The ICU is a 29-bed closed

From the 1Department of Medicine, Division of Medicine Critical Care and 2Division of Adolescent Medicine and Program for Patient Safety and Quality, Boston Children’s Hospital; and 3Department of Pediatrics and 4 Division of Medical Ethics, Department of Global Health and Social Medicine, Harvard Medical School, Boston, MA The authors declare no conflicts of interest.

ICU

Intensive care unit

0022-3476/$ - see front matter. Copyright ª 2014 Mosby Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2013.09.037

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Vol. 164, No. 2  February 2014 unit with 26 private rooms and 3 open rooms. All patients are cared for by either of 2 combined medical/surgical teams or a general surgical team. Rounds are conducted every morning at bedside and include the patient’s physician team (pediatric ICU attending and fellow, pediatric residents, pediatric hospitalist physicians, and nurse practitioners), bedside nurse, and respiratory therapist. Immediate family members have access to the ICU on a 24-hours-a-day basis and are often, but not uniformly, invited to attend morning rounds at the discretion of the medical team. Surveys were developed on the basis of the study objectives and after a review of current literature. Parent and healthcare provider surveys were developed in parallel to allow for the direct comparison of their perceptions of several dimensions of rounds. Parent surveys were reviewed by members of a family faculty group; healthcare provider surveys were similarly reviewed by members of their target audience. The Institutional Review Board of Boston Children’s Hospital approved this study; consent from both parents and healthcare providers was implied by completion of the survey. Parents and legal guardians of children admitted to the ICU under the care of a medical/surgical team for 2 successive mornings were eligible for recruitment, which occurred during the day shift on weekdays. The duration of admission was selected to increase the probability that parents would have had opportunity to attend morning rounds at least once. Parents of children admitted to the general surgical service were excluded as the format and content of rounds for these patients differs significantly. Parents were deemed ineligible if they were not fluent in English, or if their level of emotional distress was too great to participate as judged by their child’s care team. Daytime nursing staff, nurse practitioners, pediatric hospitalists, ICU fellows, and attending physicians were eligible to participate in the healthcare provider survey, as were all resident physicians rotating in the ICU in the year preceding the survey period. Parent recruitment took place from February through May 2011, until a predetermined target of 100 parents was reached. Parents were approached at bedside and were provided with a mobile computer to complete the survey online at that time. Parents who preferred not to use the web-based format completed an identical paper survey, which was transcribed into the database. The survey collected parental demographic information as well as information about the child’s baseline health status as perceived by the parents. Likert-scale questions assessed attitudes and perceptions regarding parental attendance of rounds as well as their personal experience if parents indicated they had attended rounds in the ICU previously. Data regarding the child’s age and hospital admissions during the preceding year were abstracted from chart review. Healthcare provider participation in the online survey was solicited by e-mail; healthcare providers who had not completed the survey received reminder e-mails at 1-week intervals for the 1-month survey period. The survey collected demographic data, and Likert-scale questions were used to assess beliefs regarding parental attendance of rounds. Both

surveys were administered with REDCap software hosted at Boston Children’s Hospital.6 Data Analyses Descriptive statistics were used to analyze survey responses of parents and healthcare providers. Direct comparison of parental and healthcare provider responses was performed with Fisher exact test, as were secondary analyses to assess the potential significance of other demographic and historical characteristics. Exploratory multivariate logistic regression analyses were performed to determine predictors of parental attendance and for providers’ belief that parents should be invited to rounds. Content variables were explored only in a multivariate context if the Fisher exact test was statistically significant. Demographic variables were included as controls independent of their significance in bivariate analyses. All statistical analyses were performed with Stata/IC 12 software (Stata Statistical Software: Release 12, 2011; StataCorp, College Station, Texas).

Results During the recruitment period, 167 patients met eligibility criteria; 65 patients’ families were not present at bedside, 3 declined to participate, and the remaining 99 patients had at least 1 parent participate (97% participation), for a total of 100 responses (Figure 1; available at www.jpeds.com). Parent demographics are presented in Table I. From Table I. Demographics of parent participants Relationship to child, n (%) Mother Father Other Highest level of education, n (%) High school/equivalent Some college 4 y college >4 y college Ethnic background, n (%) White Black Asian Native American Other Child’s usual state of health, n (%) No health problems Only minor health problems Health problems that require visits to physicians but rare hospitalization Health problems that occasionally require hospitalization Health problems that require hospitalization more than once a year Fairly constant and life-threatening health problems Attended ICU rounds, n (%) Patient age Range Median (IQR) Median length of ICU stay* (IQR) Median length of hospital stay* (IQR)

70 (70) 28 (28) 2 (2) 20 (20) 26 (26) 27 (27) 27 (27) 80 (80) 11 (11) 5 (5) 1 (1) 3 (3) 22 (22) 12 (12) 14 (14) 23 (23) 15 (15) 14 (14) 74 (74) 10 d-25 y 5.8 y (2.3-13.6 y) 2.3 d (1.7-3.5 d) 2.7 d (2-5.7 d)

*Length of stay at time of survey.

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healthcare providers eligible to participate (N=185), 131 surveys were returned, for a response rate of 71%. Healthcare provider demographics are presented in Table II (available at www.jpeds.com). Parents reported a high degree of satisfaction and comfort with most aspects of the morning rounds process (Figure 2; available at www.jpeds.com). Approximately three-quarters (74%) of parents had attended morning rounds at least once; attendee status was not correlated with any of the observed demographic characteristics or the perceived baseline health status of the child. Although attendees were no more likely to report having had rounds explained to them, they were more likely than nonattendees to agree that families should be invited to rounds (95% vs 81%, P = .049); to want, themselves, to participate (96% vs 81%, P = .03); and to feel that they were welcome to do so (89% vs 62%, P = .005). Nonattendees were more likely to agree that it would sometimes be inappropriate for families to participate in rounds (42% vs 16%, P = .01). There were no differences in parental response based on level of education or perceived baseline health status of the child. Feeling welcome was the only characteristic that predicted parents’ attendance when tested in a multivariate context (OR 12.2, 95% CI 2.3-64.8; P = .007). None of the demographic characteristics were predictive of attendance, and the logistic regression model (Table III; available at www. jpeds.com) explained about 26% of the variance (n = 99; likelihood ratio c2[11] = 28.97, P < .003; pseudo R2 = 0.2589). In contrast, healthcare providers reported a greater variety of attitudes about morning rounds (Figure 3; available at www.jpeds.com). In comparing the responses of nurses and physicians, the latter were more likely to agree that it would sometimes be inappropriate for parents to participate (68% vs 40%, P = .001). Nurses were more likely to agree (91% vs 63%, P < .001) that a provider should return after rounds to discuss the plan with parents, even though they were more likely than physicians to believe that parents understood the content of rounds (29% vs 14%, P = .04). Physicians reported greater agreement than nurses that discussion was sometimes limited by parent presence (86% vs 57%, P < .001), perceived that rounds took longer (75% vs 47%, P = .001), and were less comfortable with teaching during rounds (66% vs 83%, P = .03). A comparison of attending and trainee physicians showed no statistically significant differences; neither did analysis based on years of clinical experience, regardless of provider role. In addition, multivariate analyses that controlled for demographic factors showed that several of the providers’ perceptions predicted a belief that parents should be invited to rounds. Among the significant predictors was the belief that communication was improved and that the team learned new information when parents were present during rounds. This logistic regression model (Table IV; available at www.jpeds.com) explained about 36% of the 404

Vol. 164, No. 2 variance (n = 131; likelihood ratio c2[7] = 64.94, P < .001; pseudo R2 = 0.3594). Comparison between parent and healthcare provider responses was possible for 12 survey items. The majority of these statements revealed statistically significant differences between the 2 groups (Figure 4). Most notably, there were significant discrepancies in perception of understanding, with healthcare providers less likely to perceive that parents understood the format (30% vs 73%, P < .001) and content (21% vs 84%, P < .001) of rounds. The full bivariate analysis is shown in Table V (available at www. jpeds.com).

Discussion A small number of studies have surveyed parents and pediatric ICU practitioners regarding satisfaction with parental presence on rounds, as well as endeavored to quantify differences in duration of rounds and time devoted to teaching when parents were present.7-11 These studies uniformly revealed that parents expressed a preference to attend rounds and reported increased satisfaction with their ICU experience, while the preferences of healthcare providers were varied and raised concerns regarding time, privacy, and opportunities for teaching and frank discussion. A large majority (92%) of parents in our survey population expressed a desire to participate in morning rounds; this correlates with frequencies reported in 2 other pediatric ICU studies.10,11 Although a large percentage of parents wanted to participate in rounds, only 65% agreed that it was easy to ensure they did not miss them. Though some barriers to attendance may be unavoidable, these data point toward an opportunity to better coordinate with those parents who desire and are able to attend rounds. In contrast to the generally positive attitudes of parents regarding morning rounds attendance, healthcare providers expressed a much wider spectrum of opinions and were far less likely to desire parental presence during rounds. Despite varied personal preferences, 93% of providers agreed that parents were welcome to attend, although it appears that this message was not transmitted uniformly to parents, as nearly 1 in 5 were either uncertain or disagreed that they were welcome. As in several other studies, regardless of actual duration, healthcare providers perceived that the presence of parents lengthened rounds and resulted in censored discussions.8,11 Taken as a subgroup, nurses in our study were less hesitant about these concerns; it is likely that physicians, as the leaders of rounds, were more attuned to the conversations that they wished to have compared with those that actually transpired. Consistent with previous findings, one-half of healthcare providers in our survey also agreed that there was less education when parents attended rounds.10 In light of other results in this survey, one could postulate 2 likely reasons for the decrease: first, teaching may be neglected to expedite rounds that are perceived to be longer with parents present; second, as healthcare providers were less comfortable teaching in the presence of parents, they may have Stickney et al

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Figure 4. Parental and healthcare provider responses were compared for survey items provided to both groups. Percent of healthcare providers agreeing with each statement was subtracted from percent of parents agreeing. Positive percentages therefore indicate more parents in agreement than healthcare providers; negative percentages indicate more healthcare providers in agreement than parents.

altered their practice. However, this perception may not account for types of education experienced only in the presence of families, such as the modeling of physician–parent communication. In multivariate analysis, we discovered that some survey responses were correlated with a provider’s belief that parents ought to be invited to rounds. On review, these items would appear to reflect a perception of direct improvement to patient care and parent–provider communication. Healthcare providers who report that new information is often obtained with parents present fall into this category, and one can easily imagine this influencing a belief that parental presence is desirable. Additionally, several responses related to improved communication, including agreement that parental understanding was improved, may reflect a belief that communication through rounds may alleviate the provider’s communication burden in other settings. These findings may suggest that healthcare providers might more universally believe that extending an invitation to parents is appropriate if they were able to identify a direct benefit from the experience. The most marked difference in perception of the current experience between parents and healthcare providers was in regard to parental comprehension. A large majority of providers expressed doubt that parents comprehended the format and content of morning rounds, whereas parents in similar numbers asserted that they understood both. Moreover, nearly one-half of providers agreed that rounds could be confusing for parents. Important questions result: whose definition of understanding should be the aim, and is some measure of confusion acceptable? Perhaps knowing that the

majority of parents felt that they understood the content of rounds well enough for their purposes might recalibrate the views of healthcare providers about the value that parents derive from attending rounds. Notably, nurses perceived greater parental comprehension than physicians, which may reflect their role as a liaison between physicians and parents: consistent interaction at the bedside may better illuminate the level of parental comprehension and calibrate nurses to the depth of understanding that meets parents’ goals for rounds attendance. Parents did appear to concede that rounds might not provide an adequate amount of time for communication, as 92% of them agreed that a provider should return after rounds to discuss the plan further. Although fewer healthcare providers agreed with this statement, the difference was largely attributable to physicians. As a constant presence at the patient’s bedside, it is not surprising that nurses would have beliefs similar to parents about the need for further communication. It is also interesting to note that the greater perception of parental understanding as indicated by nurses and parents did not correlate with a belief that communication on rounds was sufficient, which raises important questions about differences in expectations for communication on the part of parents and healthcare providers. Finally, we found that the subgroup of parents who had attended rounds had a more positive view of the process than those who had not. This may be because the experience of attending rounds impacted the attitudes of parents who did so, or it may be that subgroups of parents differ in their preferred mode of communicating with caregivers. However, this subgroup in our study was not characterized by any of

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the demographics queried by our survey. Neither parental perceptions of a greater chronic burden of illness nor interaction with the healthcare system predicted rounds attendance. This lack of correlation, seen in another recent study,12 highlights the challenge of differentiating these subgroups and the need to offer a diversified menu of communication options, to better match the preferences of the parents to the communication strategy used. We were limited in our study to a survey population of parents who were present and available in the ICU; some parents are infrequently present at bedside, and our study was not equipped to explore their opinions. Approximately one-quarter of our parent survey population had not attended rounds, which may have skewed the reported data toward the subgroup of parents who elected to attend and, because of the total sample size, limited our ability to compare the two groups. It would be useful to explore these same questions with a population of parents who choose to communicate with the healthcare team in other ways. The healthcare provider survey, with a 71% response rate, yielded a good cross section of the daytime healthcare providers in our ICU. If educational processes regarding rounds participation could be standardized for both healthcare providers and parents, a survey reassessment of perceptions and experiences could enlighten areas of progress and areas of ongoing need. n conclusion, parents report a high degree of satisfaction with the current rounds experience in our ICU; healthcare providers, however, have some important reservations. Differences between providers and parents with regard to understanding and comfort with participation in the morning rounds process are dramatic and deserve further investigation. Understanding parental goals for rounds communication as well as factors that impact parental comfort with the process may allay provider concerns. Similarly, knowing that the majority of parents report improved understanding after rounds may provide necessary incentive for healthcare providers to facilitate inclusion of parents in rounds. With support for family-centered care increasing, the healthcare team in the pediatric ICU, though faced with the additional challenges of caring for complex, critically ill patients, must learn to adapt the process for those parents who wish to participate. n

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Vol. 164, No. 2 The authors wish to acknowledge Elaine Meyer, PhD, RN, for her guidance in the design of this project and the development of survey questions, and of the Family Faculty group from the Institute for Professionalism and Ethical Practice at Boston Children’s Hospital in reviewing and providing feedback on the parent survey during its development. Submitted for publication Apr 3, 2013; last revision received Aug 1, 2013; accepted Sep 17, 2013. Reprint requests: Carolyn A. Stickney, MD, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital, 333 Longwood Ave, Boston, MA 02115. E-mail: [email protected]

References 1. Committee on Hospital Care and Patient- and Family-Centered Care. Patient- and family-centered care and the pediatrician’s role. Pediatrics 2012;129:394-404. 2. Lehmann LS, Brancati FL, Chen MC, Roter D, Dobs AS. The effect of bedside case presentations on patients’ perceptions of their medical care. N Engl J Med 1997;336:1150-5. 3. Committee on Hospital Care, American Academy of Pediatrics. Familycentered care and the pediatrician’s role. Pediatrics 2003;112:691-7. 4. Muething SE, Kotagal UR, Schoettker PJ, del Rey JG, DeWitt TG. Family-centered bedside rounds: a new approach to patient care and teaching. Pediatrics 2007;119:829-32. 5. Davidson JE, Powers K, Hedayat KM, Tieszen M, Kon AA, Shepard E, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med 2007;35:605-22. 6. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap): a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 2009;42:377-81. 7. Landry MA, Lafrenaye S, Roy MC, Cyr C. A randomized, controlled trial of bedside versus conference-room case presentation in a pediatric intensive care unit. Pediatrics 2007;120:275-80. 8. Cameron MA, Schleien CL, Morris MC. Parental presence on pediatric intensive care unit rounds. J Pediatr 2009;155:522-8.e1. 9. Phipps LM, Bartke CN, Spear DA, Jones LF, Foerster CP, Killian ME, et al. Assessment of parental presence during bedside pediatric intensive care unit rounds: effect on duration, teaching, and privacy. Pediatr Crit Care Med 2007;8:220-4. 10. Aronson PL, Yau J, Helfaer MA, Morrison W. Impact of family presence during pediatric intensive care unit rounds on the family and medical team. Pediatrics 2009;124:1119-25. 11. McPherson G, Jefferson R, Kissoon N, Kwong L, Rasmussen K. Toward the inclusion of parents on pediatric critical care unit rounds. Pediatr Crit Care Med 2011;12:e255-61. 12. Drago MJ, Aronson PL, Madrigal V, Yau J, Morrison W. Are family characteristics associated with attendance at family centered rounds in the PICU? Pediatr Crit Care Med 2013;14:e93.

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Figure 1. Flow sheet depicting recruitment of parent participants. DCF, Department of Child and Family Services.

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Figure 2. Parents (N = 100) were asked to respond to several statements regarding their perceptions and attitudes about morning rounds. Parents (n = 74) who indicated that they had attended rounds were asked to respond to statements regarding their personal experience of morning rounds. Response choices included: (1) strongly agree; (2) agree; (3) neutral/uncertain; (4) disagree; and (5) strongly disagree.

Figure 3. Health care providers (N = 131) were asked to respond to several statements regarding their beliefs about parental attendance of morning rounds. Response choices included: (1) strongly agree; (2) agree; (3) neutral/uncertain; (4) disagree; and (5) strongly disagree. 406.e2

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Table II. Demographics of healthcare provider participants Age range, y Age, median (IQR) y Sex, n (%) Male Female Position in ICU, n (%) Nurse Hospitalist physician Resident physician Fellow physician Attending physician Years in current profession, n (%) 0-1 y 2y 3-5 y 5-10 y >10 y Years in current ICU, n (%) 10 y

25-64 33 (29-39.5) 38 (29) 93 (71) 58 (44) 2 (1) 34 (26) 14 (11) 23 (18) 12 (9) 35 (27) 27 (21) 25 (19) 32 (24) 41 (31) 16 (12) 21 (16) 23 (18) 30 (23)

Table III. Multivariate regression predicting parental attendance Predictor

OR

SE

95% CI

P

Patient age Hospital length of stay ICU length of stay Mother College education Hispanic White Child with chronic health problems Prior hospital admission Prior ICU admission Feeling welcome to participate Constant

1.03 1.01 1.24 2.55 1.86 0.25 0.39 1.76 0.62 1.61 12.22 0.11

0.04 0.02 0.17 1.52 1.04 0.3 0.32 1.11 0.45 2.04 10.41 0.14

0.94-1.12 0.98-1.04 0.95-1.61 0.80-8.18 0.62-5.57 0.02-2.66 0.08-1.90 0.51-6.07 0.15-2.54 0.13-19.30 2.30-64.84 0.01-1.38

.528 .572 .109 .115 .267 .25 .244 .37 .511 .706 .003 .088

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Table IV. Multivariate regression predicting healthcare provider preference for parental attendance Predictor

OR

SE

95% CI

P

Registered nurse (compared with physician Male (compared with female) Age (y) Communication improved with parents present Team often learns new information Parents’ participation sometimes inappropriate Parents understand format Constant

0.91 0.46 1 6.25 5.18 0.18 4.77 0.49

0.5 0.27 0.03 3.68 2.91 0.1 2.65 0.66

0.30-2.70 0.15-1.44 0.95-1.05 1.97-19.82 1.72-15.56 0.06-0.51 1.61-14.17 0.03-7.00

.858 .183 .921 .002 .003 .001 .005 .598

Table V. Comparison of parent and healthcare provider agreement with statements Statements

Parents, n (%)

Healthcare providers, n (%)

P

It is sometimes inappropriate for parents to participate in morning rounds. Morning rounds are confusing for me/parents.* Morning rounds make me/parents anxious.* Parents are welcome to attend rounds. Parents should be invited to participate in morning rounds. After rounds, I/parents have a better understanding of the treatment plan.† After rounds, I/parents have a better understanding of the child’s condition.* When I/parents attend rounds, communication is improved.* A provider should return after rounds to discuss the day’s plan. I am comfortable when a physician teaches during rounds.* I/Parents understand the format of morning rounds. I/Parents understand the content of morning rounds.*

23 (23) 17 (23) 6 (8) 82 (82) 91 (91) 66 (90) 62 (84) 62 (84) 92 (92) 66 (89) 73 (73) 62 (84)

73 (56) 61 (47) 29 (22) 122 (93) 109 (83) 106 (81) 96 (73) 93 (71) 100 (76) 96 (73) 39 (30) 27 (21)

Family participation during intensive care unit rounds: attitudes and experiences of parents and healthcare providers in a tertiary pediatric intensive care unit.

To compare the experiences and attitudes of healthcare providers and parents regarding parental participation in morning rounds, in particular to eval...
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