The overwhelming majority of parents of a pediatric patient with cancer indicated they had a negative communication experience at some point during their child’s care. Dr Bryan Sisk, Assistant Professor in the Pediatric Hematology and Oncology department at Washington University School of Medicine, and his colleagues received the Young Investigator Award for their work on communication breakdowns1 during The American Society of Pediatric Hematology/Oncology (ASPHO) meeting.

“I believe communication is really important.” Dr Sisk told Hematology Advisor. “What I’ve learned from parents is the quality of the relationship that you build with a parent, which is largely driven by aspects of communication, will affect every other aspect of that family’s interaction with your team. If a family does not trust you because communication has not gone well, they’re going to be predisposed to not trusting other parts of the healthcare system, and potentially to become more confrontational. If you have a very strong relationship, that parent is going to trust your advocacy in a potentially more collaborative way.”

High-quality communication between pediatric oncologists and parents has been associated with increased confidence in decision-making2 and self-management3 and greater trust of their physician.4,5 Despite a general understanding of the importance of established communication with the healthcare team, best practices for improving communication with parents and the unique difficulties of establishing robust relationships with the pediatric oncology population remain open lines of research.

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The Study

In order to better understand the unique perspectives of these parents, the investigators conducted 80 semi-structured interviews at 3 academic medical centers. Parents were contacted during treatment, survivorship, or bereavement stages of care. The investigators asked about bad communication experiences, specifically: “What made this experience particularly bad” and “What could have made this better?”

At least 1 negative communication experience was reported by 76 of the 80 (95%) parents. The most frequent bad experience occurred with an individual member of staff (n=68), the healthcare organization (n=46), the team (n=26), or the greater healthcare system (n=16).

These negative experiences resulted in 12 broad types of consequences, such as emotional distress, insufficient comprehension, loss of trust, decrease in engagement, false or lost hope, financial insult, or even medical harm.

“Often we think of communication as one person saying words and the other person absorbing that information – it’s that kind of two-way transfer of information. The foundation for this study is a multiple function model where communication does achieve things like exchanging information, but it also involves building relationships, helping to make decisions, validating parents, and supporting hope,” Dr Sisk stated.

As an example, he described a situation in which parents of a child who had not survived their cancer were repeatedly receiving the institution’s automated alerts reminding them their child had an upcoming appointment, up to 6 months after the passing of their child. This negative communication experience highlighted the fact that the relationship fostered through communication is many faceted and involves multiple parties.

“Clinician intentions, how they try to communicate, and their effort is only one component that determines the quality of communication. It’s also the way teams interact, the cultural background, the community experience in that hospital and that care team, and the institutional systems that we have set up,” Dr Sisk explained.

For situations in which parents did not feel the clinician sufficiently responded, they often reacted by increasing their own advocacy and stated they would have preferred clinicians to engage them directly in order to resolve conflicts.

“My number 1 recommendation is to be very open to subtle cues. Families often feel that there are barriers or pressures that prevent them from fully expressing concerns or worries. It’s very easy to miss those unless you’re looking for them, such as subtle signs of frustration, anxiety, or anger. If parents are becoming stronger advocates in a way that seems to hint at underlying frustration, like not be making eye contact or crossing their arms,” Dr Sisk continued. “Those subtle cues are like doorways. Often, if you turn the handle by taking a first exploratory step of saying, ‘I’m sensing you seem frustrated about something’ opens a whole dialogue that would otherwise be missed. Addressing those concerns early on can smooth the way for you and your team down the road.”