Psychosocial Issues in Nutrition. Interdisciplinary Management of Cystic Fibrosis Patients. By Patricia J. Settle, MS, RD Pediatric Pulmonary Center Department of Pediatrics University of Arizona College of Medicine. Improving Nutrition is a Team Effort.
Interdisciplinary Management of
Cystic Fibrosis Patients
By Patricia J. Settle, MS, RD
Pediatric Pulmonary Center
Department of Pediatrics
University of Arizona College of Medicine
It is important for the entire CF team to:
But also to understand that the nutritional aspects of CF care often result in concurrent psychosocial family issues
In addition to meeting caloric needs, we use food for:
It becomes very complex when we try to use food as part of a CF treatment plan, because we use food to meet so many other needs besides nutrition.
Other people advising
High Energy CF Diets
Various studies show adherence to a high energy diet in children is between 16% and 50%
Adherence to a high energy diet is hard because CF nutritional guidelines:
CF Children, ages 6 months to 12 years, consume
The main strategy parents have is to keep the child at the table longer. This leads to higher rates of negative child behaviors and increased parent behaviors
Parents often make a second meal to accommodate the CF child
Children with CF and healthy peers engage in the same pattern of behavior during a meal. In the second half of the meal, children of both groups:
However, children with CF engage in these behaviors at twice the rate of children without CF
Parents of children with and without CF try similar strategies to encourage eating and show the same pattern of increasing their efforts in the second half of the meal:
However, parents of children with CF are engaging in these behaviors twice as much as parents of children without CF
Parents with CF children feel:
Myths or family bias that may have crept into the feeding situation:
Start With Snacks
Typical child behaviors and parenting strategies may :
When parents consistently express concern about child behaviors during meals, it is helpful to equip parents with extra skills to enable them to work more effectively with their children
Provide behavioral skills in addition to presenting nutritional recommendations
Reinforcement - An event that makes the behavior that precedes more likely to occur in the future
It can be:
A parent’s attention is a valuable reward to a child.
Through intervention, parents are taught to notice and compliment behaviors that are compatible with eating
“I really like the way you take a bite, talk, and then take another bite.”
“I like the way you are sitting up in your chair and eating.”
“I enjoy meals when you are eating so well and we can discuss your day while we eat.”
The parent should be encouraged to praise the child in a way that is comfortable and natural to both the parent and child. It may seem uncomfortable or awkward at first and may take some time to find the best style for parent and child.
Behaviors parents are taught to ignore:
When using ignoring, parents should:
Timing Is Very Important!
The privilege system will not work if:
This week, I agree to: Date: __________________
If I work really hard and meet my energy goals, then my parents agree to let me choose one of the activities written here:
My signature: My parent’s signature:
The gradual attainment of a target behavior through the rewarding of successive steps that gradually build upon one another
Provide Emotional Support
Allan – Age 17
“I had a hang-up for the longest time about taking my enzymes in front of other people. I never wanted to stand out or be different from the other kids at school. So sometimes I skipped taking them altogether. It got to the point that the greasy, high-calorie food in the cafeteria was really causing me problems with malabsorption.
“Dealing with gas and bloating was even more embarrassing. So I decided it was worth trying to answer questions about why I take enzymes and to take them before I ate. It turned out that it wasn’t a big deal. No one was turned off that I took them and I felt a lot better.”
James – Age 19
“I think one of the things that was hard for me to deal with was that lots of people thought I was younger than I really was in high school. I was shorter and smaller than most everyone else. I was really worried, too, that I wouldn’t grow or reach puberty when everyone else did. I hated being different.
“What helped me adjust was I really made an effort to eat a lot and keep my weight up. I wanted to do everything I could to help myself grow. Finally, I grew some and was just about as tall as some people in my class. And even though I was still little, I joined the swim team and did pretty well. Just getting into something I liked doing helped me feel a lot better about myself.”
“The Poster Child”
“The Problem Child”
Meals in families with a CF child tend to be excessively long