By Melinda Young
Focusing on communication skills can help strengthen patient and guardian trust and improve care transitions. Communication skills are important to improve shared decision-making.
Provider and patient or family conversations often take place in ICUs and other settings where patients and family members may experience high levels of stress, anxiety, and depression. Communication challenges can contribute to their stress, particularly when the patient is a child, research shows.1,2
A qualitative study revealed including parents as valued members of their child’s care team could give them a sense of control and repair fractures in trust between the family and the care team. Researchers also found information that was inconsistent with care coordination impeded communication. Parents described being put in the middle of team member inconsistencies and disagreements on treatment.1
“This was part of a larger project where we wanted to learn from parents directly about their experiences [with their child’s care team], both positive and negative,” says Jennifer Walter, MD, PhD, MS, study co-author and an associate professor of pediatrics and medical ethics at the University of Pennsylvania Perelman School of Medicine. “In the pediatric cardiac ICU clinic, we also were working to design an intervention to support parents as they were preparing to have a family meeting with the clinical team. It was an opportunity for family members [to] meet with the clinical team to discuss the child’s current care plan, to get new information, and to make a decision on a path forward that would work for the child and family.”
Walter and colleagues asked families about their experience with family meetings and the information they were told by care teams, which consist of physicians, case managers, and other professionals. Questions included:
- How were families prepared for the meeting?
- Were families allowed input on who attended?
- Did they know when it was conducted?
“We wanted a better sense for those elements before they were asked to participate,” explains Walter, the attending physician with the Justin Michael Ingerman Center for Palliative Care at Children’s Hospital of Philadelphia.
Walter and colleagues also wanted to know how well families understood their child’s condition and how they made decisions for their child’s care. “What we learned from families is that in many circumstances, they are overwhelmed by the number of clinicians caring for their child,” she says. “The team rotates across different team members, which makes it challenging for them to know who they can trust.”
Information Not Always Timely
People also said they were not always given timely information about changes in their child’s care. This could include communication about the child moving to a different unit, or it could be the child experienced clinical changes that led to the family’s distress.
“At times, they were really excited by the opportunity to be heard and feeling like they were partnering with the team,” Walter says. “But at other times, they felt their input wasn’t considered as essentially important to the team’s understanding of the child’s health.”
Another common concern was the team was rotating in speaking with the family, and the parents worried communication among team members was not always clear.
“They’d perceive inconsistencies in the approach to care or felt they had to carry some of the weight of team members,” Walter explains. “At times, care plans changed because the patient’s status changed, and parents might have attributed it to team switching when it might have been their child’s status shifting.”
Uncertainty Can Be Overwhelming
Large teams sometimes are uncertain about the best path forward for patients. Providers may debate the right path to take. When these discussions occurred during team meetings with parents, they could feel overwhelmed by what they viewed as a disagreement. However, this was not true of every parent.
“What’s wonderful about qualitative work and hearing people’s stories is you hear different perceptions of events,” Walter says. “Some said it was helpful to them to see everyone weighing in with different opinions, while others wished they didn’t have different opinions, or that they debated separately from the family so they could just hear the final answer.”
For example, one parent reported feeling overwhelmed when two physicians completely disagreed with their child’s next steps. In another anecdote, Walter and colleagues learned patients’ families sometimes feel ignored by the clinical team. A parent recalled she told clinicians for several days that her 3-year-old daughter was not behaving normally. They dismissed her concerns, attributing the child’s kicking and hitting as typical behavior. Later, they discovered the girl had an infection, requiring a transfer.
Care team members, including nurse coordinators and case managers, could benefit from learning techniques to improve communication. One option is Vital Talk, which provides clinicians with courses on navigating tough conversations with ease and providing care that aligns with their patients’ values.
One useful approach to supporting parents is a combination of learning from families about what works best for them and tailoring communication to meet the family’s needs. “If you’re partnering with the family and there is uncertainty about what the path would be, how we communicate that uncertainty to families depends on the parent’s communication preferences and their style,” Walter explains. “Some people like all the details and want to hear the numbers and percentages and [providers’] thought processes behind suggestions.”
Other people want to hear only the big picture and would like the medical team to provide a recommendation about what is best for them based on their goals for their child.
When in doubt about how to communicate effectively with a particular parent, just ask them what they want. “I’m a palliative care physician by training, and we ask outright. Sometimes, families have not had to make difficult medical decisions for their loved ones, but most families give us some information,” Walter says. “Many families say, ‘I want all the details, and I want to know everything.’ Others say, ‘This is overwhelming to me, and I trust the doctors to make a decision that will prolong my child’s life.’”
Providers, case managers, and other team members need to look for clues about patients and family members’ communication styles and preferences. (For more information, see the story in this issue on how to improve communication with patients and family members.)
Walter and colleagues learned families valued meetings and setting a scheduled time for team members and the family to discuss the big picture of the child’s illness.
As one family member told investigators, “I’ve always felt like when I do speak up that I am included as part of the team, that the doctors do listen to me, and that they’re willing to take it into consideration.”
REFERENCES
- Gramszlo C, Girgis H, Hill D, Walter JK. Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: A qualitative study. Cardiol Young 2023;1-7. doi: 10.1017/S1047951123001282. [Online ahead of print].
- Sood E, Karpyn A, Demianczyk AC, et al. Mothers and fathers experience stress of congenital heart disease differently: Recommendations for pediatric critical care. Pediatr Crit Care Med 2018;19:626-634.
Provider and patient or family conversations often take place in ICUs and other settings where patients and family members may experience high levels of stress, anxiety, and depression. Communication challenges can contribute to their stress, particularly when the patient is a child, research shows.
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