By Matthew Swayne and Andrea Messer, Penn State
UNIVERSITY PARK – Beliefs about nature and nurture can affect how patients and their families respond to news about their diagnosis, according to Penn State health communication researchers.
Understanding how people might respond to a health problem, especially when the recommendations for adapting to the condition may seem contradictory to their beliefs, is crucial to planning communication strategies, said Roxanne Parrott, Distinguished Professor of Communication Arts and Sciences and Health Policy and Administration.
People affected with known genetic or chromosomal disorders, such as Down syndrome, Marfan syndrome and neurofibromatosis, tend to communicate differently about their illness based on their uncertainty of genetics’ role in health.
“When a person is uncertain about an illness, it can also predict how they manage that uncertainty and how they desire to talk or communicate about the condition,” Parrott said.
When patients and family members are willing to talk about a diagnosis, they have a better chance of connecting with sources of help and support.
“Emotions experienced about a condition impact patient and family members’ communication,” said Parrott. “How fearful, angry, or sad they feel is part of the uncertainty about the condition and affects how patients and their families seek to navigate the situation.”
“What we can do is design programs for genetic counselors that suggest different scripts for communicating based on understanding how people might respond to a diagnosis,” Parrott said.
Parrott, who worked with Kathryn F. Peters, a certified genetic counselor and instructor of biobehavioral health, and Tara Traeder, graduate student in communication arts and sciences, said people clustered into four groups based on how they understand the role genetics plays in health. Uncertain relativists are not sure what role personal behaviors, religious faith and social networks play in genetics and health. Personal control relativists tend to be more certain about how personal behavior affects genetics. Genetic determinists believe that only genes determine their health, while integrated relativists believe that behavior, faith and support can affect genetic expression.
While integrated relativists seem to have the most balanced approach to understanding genetics and health, the researchers said that they also had the highest levels of uncertainty about living with the condition of the four groups. People who were more likely to believe genetics are the dominant predictor of their health wanted to communicate more about their condition than those who believe they have more personal control in health.
The researchers, who reported their findings in the online version of the journal Health Communication, analyzed data from a survey of 541 family members or patients diagnosed with neurofibromatosis, Marfan syndrome or Down syndrome. Participants were asked questions about the status of their diagnosis, beliefs on genetics, personal behavior, religious and social life, illness uncertainty and how they manage their uncertainty about living with the diagnosis or living with a family member who has had the diagnosis.
To determine how the participants understood the connection between genetics, and personal behavior in health, the researchers asked participants several questions including whether alcohol can cause changes in the genes of adults. They were also asked whether participants believed drug use could cause genetic changes.
The researchers also asked participants how a higher power or attending a house of worship could affect genes to assess the religious beliefs of the participant.
The survey explored participants’ negative feelings and links to how they preferred to communicate about the condition.
Parrott said that communication strategies around the four frameworks linked to beliefs about the role of genetics for health can help simplify health communication strategies and prepare counselors for patient responses.
“A significant number of people are affected by these conditions and it’s important to remember that communicating with patients and family is not always a simple thing,” said Parrott. “There are times they need to be hopeful and times that they need to be mad.”
