Talking to hospitalized children holds the same basic perils as dealing with children in any situation: How much do they know? How much should they know? When should they know it?
The answers may be found in the tangled web of physicians, nurses, parents, and the young patients themselves, suggests an Irish study published in the August issue of the Journal of Clinical Nursing.
Imelda Coyne
Imelda Coyne, Ph.D., of the School of Nursery & Midwifery at Trinity College in Dublin, and her colleague, Pamela Gallagher, Ph.D., of Dublin City University found that children want to be included in conversations about their own health, but are often left in the dark, largely because of adults’ actions. Children spoke of being asked a few specific questions by physicians, but then the physicians would conduct the rest of the conversation with their parents. Or physicians would take their parents elsewhere to talk, leaving the children apprehensive and alone.
In a study involving focus groups and individual interviews from 10 wards and two clinics (one outpatient) in three hospitals in Ireland, results showed that only approximately 9% of children aged 7-18 years had positive experiences during their hospital stay in terms of experiences of participation in communication and decision-making in their care, Dr. Coyne said in an interview. This despite the United Nations Convention on the Rights of the Child in 1989 emphasizing that children’s voices should be heard, and the endorsement of the concept in Ireland (Ireland’s Department of Health and Children, 2000) as well as in the United States (American Academy of Pediatrics Committee on Bioethics 1995, Pediatrics 1995;95:314-7), the researchers wrote.
This lack of communication created a spur of negative feelings in the children who expressed anxiety and loneliness. Or children felt physicians "do things" to them with little or no explanation, according to the article reporting the qualitative study of 55 hospitalized children and teenagers, aged 7-18 years.
"I need to know because otherwise I’m going to be sitting there panicking going all paranoid thinking about the worst scenario," a 13-year-old girl was quoted in the published report.
The final sample of children included 28 children with acute illnesses such as appendicitis, fractures, infection, or constipation, and 27 children with chronic illnesses such as asthma, diabetes, cystic fibrosis, or sickle cell disease (J. Clin. Nurs. 2011;20: 2334-43).
Dr. Jack Gladstein, director of the pediatric hospitalist program and professor of pediatrics and neurology at the University of Maryland Medical Center, Baltimore, said the article from Ireland is "is right on target, and our inpatient pediatric unit changed our care" to reflect similar thinking.
"Six years ago, I was asked to bring our inpatient unit up to date," Dr. Gladstein said in an interview. "We were using an old model where rounding took place in the hall outside a patient’s room with the door shut, with no input from the patient, family, or nurse. Now all rounds take place in the patient’s room and include input from the child, parents, and nurse. We all see what the child looks like, how sick the child is.
"I ask children open-ended questions, such as, ‘Is there something you want to ask your team?’ I stand next to the mom, and if the resident speaks in gibberish, I’ll ask the mom, ‘Did you understand that?’ "
Since changing to this model, there has been an increase in safety and an increase in satisfaction for the physicians, patients, and nurses, as well as a decrease in length of stay, he said.
"What we’re learned is that there is nothing you can’t say in front of the family. Kids know that they’re sick. Hearing the treatment plan instills hope and takes away their worries. Even with very young children – 2- to 3-year-olds – [it helps that] they see the same people each day, people who go in, and play with them and make them smile. It is all about allaying fear," Dr. Gladstein said.
"You can empower children by letting them take part in their care. For example, when a child has an abscess, you might have the child remove the bandage and then put a new one back on. There is no downside to being at the bedside as much as possible," he noted.
Gregory A. Hale
At All Children’s Hospital in St. Petersburg, Fla., openness is the rule. Although the age of assent there is 7 years old, Dr. Gregory A. Hale of the hospital’s hematology and oncology division suggests that an honest relationship with the patient, at any age, is pertinent to a sick child’s development and may prevent the child from jumping to conclusions about his/her health.