Parents of sick kid must talk to doctors
Q: My child is admitted to the hospital for difficulty breathing due to a respiratory virus. How can I advocate for her when I feel that so much is out of my control?
A: Having a child in the hospital can often lead to parents being unable to perform normal parenting roles in the ways that are familiar to them. Their ability to bathe, dress, feed and soothe their child is often restricted, causing stress and anxiety.
Infants can have 6-10 colds per year when young and some of them affect the lungs, requiring some time in the hospital for breathing problems. Whether the diagnosis is bronchiolitis (airway inflammation) or pneumonia (lung infection), the result is excess mucus production and difficulty breathing. It can be difficult for babies to coordinate breathing and swallowing, putting them at increased risk of aspirating food contents into their lungs. The baby may be placed on intravenous fluids and parents asked not to feed them. This can be very stressful, making parents feel they are withholding essential nurturing from their child. Identifying this stress and looking for ways to discuss it with the medical team is important.
Finding the words to start this conversation can be difficult for parents. Fortunately, pediatric nurses tend to be intuitive, empathetic people who can address parental anxieties in a respectful way. Expressing concerns to them is a good way to open a dialogue with the doctor. A mutual understanding between a child’s parents and the medical team is helpful in ensuring best care.
Having productive conversations with parents is referred
to as “Health Literacy.” Health literacy is the ability to read, understand and act on health information. Making health information understandable empowers parents to make the best decisions for their children.
There are two approaches to health literacy. The better one, in the long term, would be to improve the reading levels and understanding of health concepts of all Americans. Fifty percent of adults cannot read a book written at an 8th-grade level and 45 million are functionally illiterate, reading below a 5th-grade level. There are many good reasons to learn to read, and read well, and health is an important one. Some clinics give out books to children. There are “Reach Out and Read” clinics from Shiprock to Hatch. (http://www. reachoutandread.org/about-us/)
In the short term, though, health professionals must design their printed information and conversations so they can be understood. After all, studies show that most health care materials are written above the 10th-grade level. We doctors need to look for signs of low health literacy, such as blank looks, unwillingness to ask questions, incompletely filled out forms and errors in medication administration. A physician sensitive to health literacy may do some of the following: (1) ask a parent to state in their own words what was just discussed; (2) ask a parent what they plan to tell other family members about their child’s health; (3) ask a parent to explain in their own words their child’s diagnosis and prognosis; and (4) make sure to ask what remaining questions the parent has before concluding the discussion. These strategies have been found to improve health literacy.
What can parents do? Ask yourself, “is effective information exchange occurring when my child’s doctor talks to me?” If not, what do you think is the problem? Is the doctor in too much of a hurry? You can ask for a time when the doctor is less busy to discuss your child’s health more slowly. Is the doctor using a lot of medical lingo? Go ahead and ask for an explanation in simpler language, acknowledging that being in the hospital is exhausting and may affect how you process information. Consider making a list of your questions and check them off in the doctor’s presence. Most of us greatly appreciate your preparation.
The problem of low health literacy needs to be tackled from two angles: improving literacy in general and designing health information that meets the literacy levels of our patients. Health care providers and parents need to work together to find common ground through common language. In short — speak up! Your child’s doctor welcomes you to the team.