For people who grew up in the United States, navigating health care can be complicated and intimidating, according to Sawsan Salah, a doctoral candidate in biobehavioral health at Penn State. Those complications may be magnified when a person is unfamiliar with the culture of medical care in the U.S. or does not speak English.
Salah, the child of U.S. immigrants, and her doctoral adviser, Lori Francis, professor of biobehavioral health and director of the Social Science Research Institute's Community-Engaged Research, Action, and Partnerships (CERAP), recently investigated how cultural and linguistic barriers affected the pediatric care received by the roughly three million children of immigrants in this country.
Using national survey data that measured whether immigrants felt their pediatricians collaborated on decisions about their children’s health and the correlations between this communication and parents’ perceptions of their children’s health, the researchers found that immigrant parents were less likely than parents born in the U.S. to report shared decision making with their child’s health care provider. The Journal of Immigrant and Minority Health recently published their study.
Shared decision making is the process of discussing and implementing a health care treatment plan with a clinician. Prior research, Salah said, has demonstrated that shared decision making is associated with patient satisfaction, positive health outcomes and adherence to treatment.
“As you might imagine, people are more likely to adhere to their treatment plan when they feel like part of the decision-making process,” Salah said. “People who feel left out may not understand the treatment, or they may not agree with it.”
Salah was specifically interested in shared decision making and its impact on pediatric health in immigrant families.
“Fundamentally, this study was motivated by the experiences I had caring for my family,” Salah said. “Since I was a child, I have been the primary liaison between my family members and health care. The doctors would explain things, and even though my mom could understand their words, she could not process the implications of what the physicians were saying. I suspected a lot of immigrant families have similar experiences.”
The researchers examined data from 27,082 parents who reported the need to make decisions about their children’s health care in the 2021-22 waves of the National Survey of Children’s Health, collected by the U.S. Census Bureau. The survey was designed to represent the experiences of everyone in the U.S., the researchers said. Of the parents in the study, 15% were born outside the country.
Results of the study demonstrated that immigrants were 80% more likely than parents born in the U.S. to report they did not share decision making with their children’s medical providers. Immigrant parents who reported needing help coordinating health care for the child were even less likely to report shared decision making. This is a problem, according to Salah.
“No one should make decisions regarding their own or their children’s health care if they are not convinced they are doing the right thing,” Salah said.
The researchers also found that immigrant parents were much more likely to report that their children were in “fair” or “poor” health — rather than “good” or “excellent” health — compared to parents born in the U.S.
“These are not objective measures of a child’s health,” said Francis, professor of biobehavioral health. “But who understands a child’s health better than their parents? If we want healthy children — and I believe everyone does — then we need to make sure that parents can communicate and collaborate effectively with health care providers.”
The actual importance of shared decision making could be larger than the study revealed, the researchers said. The National Survey of Children’s Health was available only in English and Spanish — the two languages most likely to be spoken by workers in a U.S. health care setting — so the results might be even larger for immigrants who primarily speak other languages and could not complete the survey. Those immigrant parents may be less able to communicate during a medical visit.
The researchers agreed that more medical settings need care advocates or social workers who can help bridge the gap between immigrant parents and health care providers.
“I am a health scientist with a doctorate who was born and raised in this country,” Francis said. “And as a parent navigating the health care system with my children, there have been many times I was nervous to counter what the doctor recommended. I can only imagine what that would be like for people unfamiliar with the culture and or language.”