OBJECTIVE: Communication among those involved in a child’s care during hospitalization can mitigate or exacerbate family stress and confusion. As part of a broader qualitative study, we present an in-depth understanding of communication issues experienced by families during their child’s hospitalization and during the transition to home.
METHODS: Focus groups and individual interviews stratified by socioeconomic status included caregivers of children recently discharged from a children’s hospital after acute illnesses. An open-ended, semistructured question guide designed by investigators included communication-related questions addressing information shared with families from the medical team about discharge, diagnoses, instructions, and care plans. By using an inductive thematic analysis, 4 investigators coded transcripts and resolved differences through consensus.
RESULTS: A total of 61 caregivers across 11 focus groups and 4 individual interviews participated. Participants were 87% female and 46% non-white. Analyses resulted in 3 communication-related themes. The first theme detailed experiences affecting caregiver perceptions of communication between the inpatient medical team and families. The second revealed communication challenges related to the teaching hospital environment, including confusing messages associated with large multidisciplinary teams, aspects of family-centered rounds, and confusion about medical team member roles. The third reflected caregivers’ perceptions of communication between providers in and out of the hospital, including types of communication caregivers observed or believed occurred between medical providers.
CONCLUSIONS: Participating caregivers identified various communication concerns and challenges during their child’s hospitalization and transition home. Caregiver perspectives can inform strategies to improve experiences, ease challenges inherent to a teaching hospital, and determine which types of communication are most effective.
© 2018 Society of Hospital Medicine
Experiences during the hospitalization contributed to caregivers’ perceptions of their communication with their child’s inpatient medical team. There were 5 related subthemes identified. The following 2 subthemes were characterized as positive experiences: (1) feeling like part of the team and (2) nurses as interpreters and navigators. The following 3 subthemes were characterized as negative: (1) feeling left out of the loop, (2) insufficient face time with physicians, and (3) the use of medical jargon (Table 2). More specifically, participants described feeling more satisfied with their care and the inpatient experience when they felt included and when their input and expertise as a caregiver was valued. They also appreciated how nurses often took the time after FCR or interactions with the medical team to explain and clarify information that was discussed with the patient and their caregiver. For example, 1 participant stated, “Whenever I ask about anything, I just ask the nurse. And if she didn’t know, she would find out for me…”
In contrast, some of the negative experiences shared by participants related to feeling excluded from discussions about their child’s care. One participant said, “They tell you…as much as they want to tell you. They don’t fully inform you on things.” Additionally, concerns were voiced about insufficient time for face-to-face discussions with physicians: “I forget what I have to say and it’s something really, really important…But now, my doctor is going, you can’t get the doctor back.” Finally, participants discussed how the use of medical jargon often made it more difficult to understand things, especially for those not in the medical field.
Major Theme 2: Communication Challenges for Caregivers Related to a Teaching Hospital Environment
At a large teaching institution with various trainees and multiple subspecialties, communication challenges were particularly prominent. Three subthemes were related to this theme: (1) confusing messages with a large multidisciplinary team, (2) perceptions of FCR, and (3) role confusion, or who’s in charge of the team? (Table 3). Participants described confusing and inconsistent messages arising from the involvement of many medical providers. One stated, “When [the providers] all talk it seems like it don’t make sense because [what] one [is] saying is slightly different [from] the other one…and then you’d be like, ‘Wait, what?’ So it kind of confuses you…” Similarly, the use of FCR was overwhelming for the majority of participants who cited difficulty tracking conversations, feeling “lost” in the crowd of team members, or feeling excluded from the conversation about their child. One participant stated, “But because so many people came in, it can get overwhelming. They come in big groups, like 10 at once.” In contrast, some participants had a more favorable view of FCR: “What really blew me away was I came out of the restroom and there is 10 doctors standing around and they very well observed my child. And not only one doctor, but every one of them knew was going on with my kid. It kind of blew me away.” Participants felt it was not always clear who was in charge of the medical team. Trying to remember the various roles of all of the team members contributed to this confusion and made asking questions difficult. One participant shared, “I just want the main people…the boss to come in, check the baby out. I don’t need all the extra people running around me, keep asking me the same thing on that topic. Send in the main group, the bosses, they know what the problem is and how to fix it.”
Major Theme 3: Caregiver Perceptions of Communication Between Medical Providers
Caregivers have a unique vantage point as they witness many interactions between medical providers during their child’s hospitalization. Still, they do not generally witness all the interactions between inpatient providers or between inpatient and outpatient providers. This led to variable perceptions of this communication. Specifically, the 2 subthemes described here were (1) communication between inpatient medical providers and (2) communication between inpatient and outpatient providers (Table 4). Caregivers assessed how well (or how poorly) medical providers communicated with each other based upon the consistency of messages they received or interactions they personally experienced or observed. One participant described how the medical team did not appear to be in consensus about when to discharge her child, highlighting the perception that team members did not have a shared understanding of the child’s needs: “One of the doctors was…nervous about sending him home. It was just one doctor…the other doctors on her team and everything and the nurses, they were like ‘He’s fine.’” Others shared concerns related to inadequate handoff and messages not getting passed along shift-to-shift.
