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

(Press-News.org) INDIANAPOLIS – 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 healthcare 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 Quick FICS: 5 and 10 Item Versions of The Family Inpatient Communication Survey” is published in the peer-reviewed Journal of Pain and Symptom Management.

Authors and affiliations

Emily S. Burke, B.A.1, James E. Slaven, M.S.4, Tracy A. Taylor, B.S.1, Patrick O. Monahan, PhD4, Greg A. Sachs, M.D.1,2, and Alexia M. Torke, M.D., M.S.1,2,3,5

1 Indiana University (IU) Center for Aging Research, Regenstrief Institute, Inc.

2 IU Division of General Internal Medicine and Geriatrics, Department of Medicine, School of Medicine

3 Indiana University Health

4 IU Department of Biostatistics and Health Data Science

5 Eskenazi Health

This research was supported by the National Institutes of Health’s National Institute on Aging, grant (R01 AG044408). Dr. Torke is supported by a Midcareer Investigator Award in Patient-Oriented Research from the National Institute on Aging (2 K24 AG053794-06).

The 5,10 and 30 item versions of the Family Inpatient Communication Survey (FICS) are available without charge on the Regenstrief Institute website.

About Alexia Torke, M.D., M.S.  

In addition to her appointment as a Regenstrief Institute research scientist, Alexia Torke, M.D., M.S., is the inaugural chief of the Section of Palliative Medicine in the Division of Internal Medicine and Geriatrics and a professor of medicine at Indiana University School of Medicine. She also directs the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare at Indiana University Health. 

About Regenstrief Institute
Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that informs clinical practice and improve the lives of patients around the globe.

Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.

About IU School of Medicine
IU School of Medicine is the largest medical school in the U.S. and is annually ranked among the top medical schools in the nation by U.S. News & World Report. The school offers high-quality medical education, access to leading medical research and rich campus life in nine Indiana cities, including rural and urban locations consistently recognized for livability.

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