The paediatric cardiac is a stressful environment for parents, Reference Simeone, Pucciarelli and Perrone1 who are expected to make decisions about their child’s care often under considerable uncertainty and time constraints. Reference Neubauer, Williams, Donohue and Boss2 Parents commonly experience anxiety, depression, and post-traumatic stress symptoms long after their child’s admission. Reference Kasparian, Kan, Sood, Wray, Pincus and Newburger3,Reference Woolf-King, Anger, Arnold, Weiss and Teitel4 Parents’ subjective experience of their child’s critical care admission predicts long-term psychosocial outcomes for families. Reference Muscara, Burke and McCarthy5,Reference Yagiela, Carlton, Meert, Odetola and Cousino6 Communication from critical care providers is a key aspect of this subjective experience, Reference Yagiela, Harper and Meert7 and communication challenges have been cited as a significant source of stress for parents of children admitted to the cardiac ICU. Reference Sood, Karpyn and Demianczyk8
High-quality communication is the foundation of shared medical decision-making and family-centred care, Reference Davidson, Aslakson and Long9 but the cardiac ICU presents unique challenges to communication practices that meet families’ needs. Parents consistently report the need for honest, timely information about their child’s condition, and prognosis in the cardiac ICU; Reference Hill, Knafl, Docherty and Santacroce10 however, providers may avoid difficult conversations due to misperceptions of parents’ informational needs, personal discomfort, or inexperience. Reference Marsac, Kindler, Weiss and Ragsdale11 A significant proportion of parents of children in the cardiac ICU report receiving conflicting information from providers and feel unprepared to participate in decision-making as a result. Reference Miller, Blume, Samsel, Elia, Brown and Morell12 Meetings between interprofessional care teams and families have the potential to address inconsistencies and misperceptions, Reference Walter, Schall and DeWitt13 but research indicates that physicians tend to dominate these conversations and miss opportunities to engage in dialogue with families. Reference October, Dizon and Roter14
Structured interventions that improve team communication with families during cardiac ICU admissions are likely to support parents’ involvement in medical decision-making and promote long-term psychosocial well-being for families; Reference Walter, Sachs and Schall15 however, little is known about the lived experiences of families navigating team communication in the cardiac ICU. Reference Miller, Blume, Samsel, Elia, Brown and Morell12 Qualitative studies provide essential information about mechanisms of change from individuals most impacted by outcomes of interest. Reference Alderfer and Sood16 This qualitative study aimed to characterise parent perceptions of (1) aspects of team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions.
Materials and methods
Recruitment and procedures
This study followed the consolidated criteria for reporting qualitative research (COREQ) guidelines for qualitative research. Reference Tong, Sainsbury and Craig17 A purposive sample of parent–child dyads were selected from the cardiac ICU at a large children’s hospital. Parents were eligible to participate in the interviews if their child had been admitted to the cardiac ICU for at least 7 days and if the medical team anticipated that the child would remain admitted to the cardiac ICU for at least another 7 days, or if the child had already been admitted for 14 days. Children needed to be under the age of 18 years and parents needed to be 18 years or older to participate. Parents were included in the sample if they were legal decision-makers, spoke English, and did not have cognitive impairments that would prevent them from being surrogate decision-makers. Parents were approached in person by study staff after eligibility was verified and interviews were conducted in person or over the phone. The primary interviewer for this study was a palliative care physician with training in bioethics and qualitative research methods (JW). The interviewer did not have a relationship with the parents prior to the interview. Interviews were conducted during a single session and pertained to parents’ perceptions of communication with their child’s care team, preparation for team meetings, and experiences with team meetings (e.g., “Did anyone prepare you for what to expect in the meeting” “What would have been helpful to know or do before the family meeting?” “Can you describe any challenges you may have had communicating with the cardiac ICU team about your child’s care?”). Interviews analysed for this study were conducted as part of a larger study aimed at developing a communication skills training programme for interprofessional teams in the paediatric cardiac ICU. Reference Walter, Hill and Drust18 All interviews were audio-recorded and professionally transcribed with identifying information removed prior to analysis. Interviews lasted on average 22 minutes, ranging from 9 to 35 minutes. Field notes were recorded during interviews but were not included in analysis.
Data analysis
Data were analysed using constructivist grounded theory methods, including coding, memoing, and reflexivity. Reference Strauss and Corbin19,Reference Charmaz20 Transcripts were uploaded into Nvivo 12, 21 and the study team developed a codebook through an iterative process. Transcripts were coded, and 20% were reviewed by at least two study members (HG, DH, and JW). Disagreements were discussed as a study team until consensus was reached. Reference Barbour22,Reference Patton23 Excerpts from codes pertaining to team practices that impeded or facilitated communication and experiences with preparation for team meetings were then extracted and analysed for thematic content. This study was approved by the Children’s Hospital of Philadelphia Institutional Review Board.
Results
Sample characteristics
A total of 23 parents of 18 patients participated. Seventy-eight per cent of parents were mothers, and 61% of parents were White. Half of the patients were under 1 month old at the time of admission and were admitted pre-operatively. The average length of stay of the patient was 55 days at the time of the interview, with a median length of stay of 43 days (range = 9–154). Additional parent demographics and child clinical characteristics are found in Table 1.
Table 1. Parent (n = 23) and patient (n = 18) demographics and clinical characteristics.
Study findings
Codes were grouped into the structure of Team Practices that Impeded Communication (four themes identified), Team Practices that Facilitated Communication (two themes, encompassing seven subthemes, identified), and Preparation for Family Meetings (three themes identified). Major themes and subthemes are found in Table 2, with representative quotes in Table 3.
Table 2. Themes and subthemes identified from the qualitative data.
Table 3. Representative quotes.
Team Practices that Impeded Communication
Inaccurate/incomplete communication with families
Parents expressed frustration related to inaccurate and incomplete communication between the team and their families. One parent described that their child’s treatment was delayed when providers ordered an MRI as routine rather than urgent which delayed completion of the MRI without providing this information to the family. Another parent shared that team members did not provide sufficient explanation of their rationale for ordering certain tests, leaving the parent feeling that information was being concealed from them. In another instance, parents described the shock they experienced when a child’s room was moved without notification (Quote-1).
Inconsistent within team communication/coordination
Parents reported that communication was hindered by inconsistent or ineffective communication between team members. Parents reported feeling that they had to “play middleman” and negotiate provider inconsistencies, which contributed to significant stress and worry about delays in necessary care. Parents also frequently described the burden placed on them by the discontinuity of assigned bedside nurses, residents, attendings, and other care providers. Several parents described that individual providers would make consequential decisions about care (e.g., when to extubate), only for the next provider to reverse the decision during the following shift. One parent described the emotionally overwhelming experience of witnessing two attendings disagree on treatment decisions during rounds (Quote-2). Parents agreed that providers should resolve internal disagreements as a team before presenting options to parents.
Families ignored by the clinical team
Parents cited feeling ignored by team members as an additional barrier to communication. Specifically, parents wanted providers to acknowledge their preferences for care, concerns about changes in medical status, and the urgency of these concerns. Several parents described the experience of noticing a change in their child’s behaviour or physical appearance, and feeling that their concerns were dismissed by providers when vitals were otherwise stable. When these children then experienced changes in medical status (e.g., respiratory distress and infection), parents felt that their input could have prevented negative outcomes (Quote-3). Parents said these experiences forced them to become increasingly vigilant for signs of potential decline, and they felt that they could not rely on providers to be advocates for their child’s needs.
Overwhelmed by too many team members/questions
Several parents reported that these gaps in communication were exacerbated by the number of team members involved in their child’s care (Quote-4). One parent said that providers spent more time repeating who they were than what they were doing for their son.
Team Practices that Facilitated Communication Parental preferences for communication
Parents consistently wanted timely, regular, transparent updates about their child’s medical status. Parents also wanted an understanding of the long-term outlook for hospital care, with real-time updates to this plan as needed (Quote-5). Transparency was supported by providers who communicated the thought process behind their decision-making. One parent described feeling less like a “bystander” and more confident about their child’s care when they understood the rationale behind provider decision-making.
Parents frequently described wanting to know all available information (Quote-6), “whether it’s good, bad, or in between.” Multiple parents stated that they did not want information “sugar-coated” and did not want providers to attempt to minimise the impact of potentially difficult news. Parents preferred to feel prepared and not be “blindsided” by a negative outcome. One parent said that they felt well supported when an attending shared difficult news and then offered emotional support, rather than attempting to present a falsely positive outlook. Another parent dyad felt frustrated when team members repeatedly warned them of the “ups and downs” of their child’s treatment course, without specifically describing what those “downs” might be. In contrast to feeling ignored, as described above, parents felt that communication was facilitated by feeling heard and being treated as a valued member of the team (Quote-7). Parents also felt that an identified continuity clinician would help to address gaps and delays in communication (Quote-8).
Beneficial team communication behaviours
One specific team practice that facilitated communication was explaining medical jargon. Parents preferred that providers anticipate that parents may not understand medical terminology and proactively clarify, rather than relying on parents to identify their own misunderstandings (Quote-9). Parents appreciated when explanations were reworded several different ways to increase information uptake. Parents also preferred that providers elicit parent questions and remember to follow up on unanswered questions during subsequent meetings (Quotes-10 and 11). Beyond the content of communication, parents valued providers who took extra time to listen to parent concerns and provide information, separate from rounds. Communication between parents and providers was facilitated when providers expressed care for parents’ well-being and for parents’ communication preferences (Quote 12).
Preparation for Family Meetings
Team practices for preparation, parental preferences for preparation, and experiences when learning about the family meeting
Parents spoke highly of family meetings as an opportunity to reconcile inconsistencies in communication and allow parents to feel like valued members of their child’s care team. Common practices for family meeting preparation included providing information to parents about who would attend the meeting, including names and roles in their child’s care, the general structure of the meeting, and the general content to be discussed (Quote-14). Parents liked knowing that this would be an opportunity to discuss “the big picture” of their child’s treatment course and wanted to be told to prepare questions ahead of time (Quote-15). Parents also wanted to know explicitly whether new information about their child’s condition would be provided or not, so they could prepare to receive potentially difficult news. Some parents expressed apprehension about team meetings and would have appreciated reassurance ahead of time about the meeting content (Quotes-16 and 17).
Discussion
Communication with medical teams represents a critical and modifiable determinant of long-term outcomes for families of children admitted to the cardiac ICU. Despite this, studies aimed at improving engagement in medical decision-making and coping with potentially traumatic events during cardiac ICU admissions tend to focus on parent behaviours, with few studies intervening with medical teams and their communication to families. The current study characterised the experience of communicating with providers in the cardiac ICU and preparing for family meetings with cardiac critical care teams to inform future interventions. We heard from parents that when teams incorporated parental preferences into communication practices, parents felt a greater sense of control, which alleviated emotional distress related to the uncertainty of their child’s admission. Inconsistent and incomplete communication contributed to frustration, shock, and worry; however, family meetings emerged as a valued opportunity to address these barriers and to optimise patient care while supporting family well-being.
This study identified several experiences of team practices that impeded communication and increased emotional distress for families, namely communication described as inconsistent within team members or incomplete when delivered to families. Inconsistent communication burdened parents, contributing to stress as parents took on the role of mediating team member disagreements. Incomplete communication left parents feeling that information was concealed from them, which eroded trust in medical providers. Feeling ignored by team members comprised an additional barrier. When parents felt that their preferences for care, concerns about medical status, and the urgency of these concerns were ignored by team members, they experienced heightened vigilance to changes in their child’s appearance and behaviour that might indicate decline. Our findings are in line with past studies which demonstrate that receiving conflicting information from too many providers leads to poorer communication and decreased parent preparedness for medical decision-making, Reference Miller, Blume, Samsel, Elia, Brown and Morell12,Reference Knight Lozano, May, Clarkson and Sarjeant24 and that the heightened vigilance reported by parents of children with advanced heart disease portends the later development of post-traumatic stress symptoms for parents. Reference McWhorter, Christofferson and Neely25 Our study contributes additional insight into the mechanisms through which these barriers to communication may contribute to long-term stress for families, which should be validated in future prospective studies of communication in the cardiac ICU.
In agreement with past studies, Reference de Man, Segers and Schappin26 we found that key facilitators of communication included timely, regular, transparent updates regarding medical status and treatment, as well as communication practices that supported parents in understanding the information provided to them. It is known that these communication practices support parents’ desire to play an active role in their child’s care Reference Simeone, Pucciarelli and Perrone1 and to fulfil their parental role even when they cannot provide hands-on care. Reference Gramszlo, Karpyn and Christofferson27 Our findings additionally underscore the impact of these facilitators on parental emotional well-being. When parents’ communication preferences are honoured by their child’s medical team, parents feel less like “bystanders” and experience a sense of control that may decrease the likelihood that, if potentially traumatic events do occur, they are experienced with shock and helplessness. Care teams should assume a collaborative stance in conversations with parents, treating them as valued team members who benefit from the provision of honest information and who provide essential information about their child’s medical status and needs in return.
For families in our study who participated in family meetings, these were viewed as opportunities to address potential barriers to care by reconciling inconsistencies, clarifying miscommunications, and allowing parents to feel like valued members of their child’s care team. For children in the cardiac ICU, whose prognosis is often uncertain and unpredictable, Reference Morell, Wolfe and Scheurer28 past research indicates that parent and physician prognostic concordance may be particularly low, contributing to parent difficulty participating in decision-making Reference Morell, Miller and Lu29 and highlighting the particular need for family meetings. This study is the first to characterise parental experiences of preparation for family meetings in the cardiac ICU and found that parents often were told who would be involved, the general structure and content of meetings, and to prepare any questions they have for the team prior to meetings. Parents additionally would have preferred to be informed about the purpose of the meeting. For some parents, the uncertainty associated with attending a new and unfamiliar type of meeting elicited worry, and parents preferred that a member of the team meet with them ahead of time to let them know whether new information about their child would be discussed.
While this study provides valuable information for teams caring for children in the cardiac ICU, several limitations should be noted. Study data were collected from a single site and therefore may not generalise to children’s hospitals in other regions or countries, particularly when cultural approaches to communication may differ. Relatedly, participants in the current study were exclusively English-speaking. Thus, future research should aim to understand cultural variations in communication preferences in cardiac ICU settings to further personalise and individualise care. While this study highlights themes likely relevant to other critical care settings, all patients in the current study were receiving care for a primary cardiac diagnosis, and most patients in the study were under 5 years old. Additional research is needed to understand team communication practices in neonatal and paediatric ICU settings where diagnoses and treatment courses may be more diverse. Particularly in the case of paediatric ICUs, where patients may be older and more able to participate in decision-making, studies should elicit experiences of communication from patients themselves. Future research should design and test interventions that aim to optimise communication and preparation for family meetings based on the barriers and needs identified in the current study. Interventions that target medical team communication practices in critical care settings are likely to support psychosocial well-being for families long after discharge.
Conclusion
This study identified that inconsistent and incomplete communication as well as team practices that ignore parental concerns and preferences further increase emotional distress for families who are already experiencing helplessness and fear due to the unpredictable and uncertain nature of their child’s critical cardiac illness. Reference Alzawad, Lewis, Kantrowitz-Gordon and Howells32 When parents are treated as valued members of the care team and provided with timely, regular, transparent updates, they are less likely to feel blindsided by unexpected events and more likely to feel a sense of control over their child’s outcomes, even in the face of prognostic uncertainty. Family meetings represent a critical opportunity to repair fractures in trust between families and care teams and to optimise communication between parties.
Acknowledgements
We thank the parents who contributed to this project for their time, energy, and willingness to discuss their experiences. Dr. Walter was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number K23HL141700. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Conflict of interest
None.
