Measuring communication experiences of families of inpatients unable to make decisions for themselves

As the population of the United States grows older, more and more family members will be called upon to make medical decisions during hospitalizations of those who cannot make decisions for themselves. Good quality, focused, empathetic and timely communication between family members and clinicians is essential for good decision-making.

Researcher-clinicians from Regenstrief Institute and Indiana University School of Medicine developed the 30-question Family Inpatient Communication Survey (FICS) to measure the experience of communication with hospital staff from the perspective of family members of seriously ill patients unable to make decisions for themselves. In a new study, the scientists present their abbreviated five-question and 10-question FICS, which they have validated with family members of adult hospital intensive care patients of all ages.

The five-question survey provides a brief snapshot of the experience of how the family member feels about their communication with those caring for their loved one. The 10-item survey adds questions about the family's perspective on two different aspects of that communication—whether they perceived that they had received the right amount of information and the presence or lack of emotional support.

"Testing and validating both the five- and 10-question FICS, we found that there were two parts of communication that were extremely important to families—giving and receiving information and also giving and receiving emotional support, which includes spiritual support," said Alexia Torke, M.D., M.S., senior author of the study and developer of the surveys.

"There are many other surveys that exist which ask overall satisfaction questions. A common one is whether the family member would recommend that hospital. But our focus is on measuring the quality of overall communication from the family's point of view, which is especially important given the high number of clinicians encountered by the patient and family during hospitalization."

"When the family couldn't find anyone to tell them what was going on for the patient that day, communication was problematic. If they indicated that they had to ask multiple people their questions and no one seemed to understand what was going on, that was also an indication of poor communication," she explained.

"When they met a staff member who sat down with them, maybe held their hand, reflected that they understood how hard it was for the family member to have a loved one in the hospital and told them some of the things that were most important for the family members to know, that was a positive experience. The quality of the communication that the families had with clinicians determined whether the family members had significant anxiety or post-traumatic stress after the hospital stay concluded."

In prior research, Dr. Torke and colleagues have found that emotional support was associated with the family members' later anxiety, depression and posttraumatic stress. Having the right amount of information was associated with whether or not they were satisfied with the decisions they made.

"Although we hope our original FICS will remain a useful measure for in-depth studies of communication, asking a family member to respond to a 30-item survey just turned out to be too burdensome for families and for those administering the survey," Dr. Torke observed.

"As medicine gets more fast-paced and families have more pressure on them, it was necessary to create a shorter survey to get more widespread use by researchers and those directly involved in quality improvement in hospitals. Family experience is important in the everyday health care context across the country. Making decisions for a seriously ill loved one is a really hard thing and the family deserves a lot of support."

In this study, family members were surveyed via telephone after their loved one left the hospital. In an ongoing study, Dr. Torke and colleagues are surveying family members via text during a hospitalization. Future plans, notes Regenstrief Research Manager Emily S. Burke, B.A., call for both the five- and 10-question surveys to be available in Spanish and possibly other languages. Burke led the content development of the new surveys.

The study is published in the Journal of Pain and Symptom Management.