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Interdisciplinary Management of

Cystic Fibrosis Patients

By Patricia J. Settle, MS, RDPediatric Pulmonary Center

Department of PediatricsUniversity of Arizona College of Medicine


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Improving Nutrition is a Team Effort

It is important for the entire CF team to:

Be educatedon the importance of nutrition

Emphasize the importance of nutrition

But also to understand that the nutritionalaspects of CF care often result in concurrentpsychosocial family issues


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In addition to meeting caloric needs, we use food for:

Comfort Expressions of emotion

Reward

Punishment

Socialization

It becomes very complex when we try to use food as partof a CF treatment plan, because we use food to meet somany other needs besides nutrition.

Food is an Integral Part of Our Lives


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Case Study - Failure to Thrive

Maggie K is a 23 month old child. Maggie was diagnosedwith cystic fibrosis at age 6 months with symptoms ofchronic cough and failure to thrive. She is the only child ofan accountant and a stay- at- home Mom. Both sets ofgrandparents live close by and are involved in Maggie'scare. Maggie was started on standard CF nutrition

therapies including pancreatic enzymes, vitamins, andhigh calorie infant formula.


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Case Study - FFT

Maggies mother relates that she will only eat a very fewfoods such as hot dogs, pizza, and ice cream. She prefers to

drink liquids such as juice and tea to milk. Mother statesthat meal times have become "very stressful. Maggierefuses to sit at the table and "screams" when she is givenany foods she is not familiar with. Mrs. K states "I am so

worried about Maggie's weight and her eating." She admits

that she wakes up at night and thinks about Maggie andher diet. She also states that she does not allow Maggie toplay with other children or attend preschool because "shemight get sick.


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Case of Failure to Thrive CF


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Mothers

Anxiety

Childs

Anxiety

Staff

Anxiety

What emotional factors might be involved?


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Maternaldepression

Maternalproblems in

coping

Maternal Stress Factors


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Various studies show adherence to a high energydiet in children is between 16% and 50%

Another Family Stress:

High Energy CF Diets

Study Age % AdherentTomezski, 1992 5-10 23%Stark, 1995 2-5 20%Stark, 1997 6-12 50%

Anthony, 1998 7-12 16%


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Why Are Adherence Rates so Low? Tend to blow the nutrition issue out of proportion

Force parents into treating the CF child with special

care instead of equally with siblings Complicates normalization of family life and meal

times with respect to food choices

Presents challenge for parents to maintain their own

weight goals Interferes with the development of a childs autonomy

in eating


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What We KnowCF Children, ages 6 months to 12 years, consume

100% of the Daily Recommended Intake (DRI)

But not the 110%-200% required by the CFFRecommendations

Are psychosocial issues a factor in our inability to meet the

CFF Recommendations?


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Overview of Behavioral Issues Behaviors Associated With Children

Behaviors Associated With Parents

Strategies for Behavioral Modification


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Sam, a typical CF childTake Sam:

Constantly asked, in a whiny voice, how much

more he had to eatArgued and negotiated each bite with parents

Tried to distract parents by telling long stories todelay eating

Complained of being full from beginning of meal


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Sams Parents

Used coaxing to encourage Sam to eat

Turned eating into a game: counting bites,chanting Go, Go, Go!

Gave Sam their full attention when he was NOTeating

When Sam was eating, the parents used theopportunity to talk to each other or Sams brother


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Typical CF Child Behaviors Dawdling

Excessive talking and/or chewing

Complaining and whining

Arguing or negotiating about food

Prolonging mealtime, especially by talking in an

attempt to distract parents from focusing on thechilds eating

Starting altercations with siblings


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Typical CF Parent Behaviors Coaxing or coercing child into eating

Typically focusing all the attention on the CF childin an attempt to get the child to eat more. The

more the child resists, the more attention the childgets.

Often turning their attention to other children oreach other only when the CF child is engaged ineating because it is the first time they feel able todivert their attention away from the CF child


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Typical CF Parent BehaviorsThe main strategy parents have is to keep the childat the table longer. This leads to higher rates ofnegative child behaviors and increased parent

behaviors

Parents often make a second meal to accommodatethe CF child


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Comparison of Child Behaviors

Children with CF and healthy peers engage in the samepattern of behavior during a meal. In the second half ofthe meal, children of both groups:

Eat less

Refuse food more

Leave the table more

Are more noncompliant

However, children with CF engage in these behaviors attwice the rate of children without CF


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Comparison of Parent Behaviors

Parents of children with and without CF try similar strategiesto encourage eating and show the same pattern of increasingtheir efforts in the second half of the meal:

More commands

More coaxing

More feeding

More physical prompts

However, parents of children with CF are engaging in thesebehaviors twice as much as parents of children without CF


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CF Parent FeelingsParents with CF children feel:

Tremendous pressure to push their child to

eat large amounts of food when the childdoesnt feel like eating

Fearful that that the child's not eating willhurt the childs health


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CF Parent FeelingsConcerned that physicians will think parents

are not following through on nutrition

Frustrated and exhausted for trying so hard

Defeated when the child cannot or will notcomply

Worried about the effects of the mealtimestresses on other siblings


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Related Observations

Many parents of CF children did not have specificcaloric goals the more food the better there is nevera stopping point

Many parents increased caloric intake by increasingfood volume, not adding calorically dense foods


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Common Misconceptions

Myths or family bias that may have crept intothe feeding situation:

Families thinking a low fat diet is good

Parents feeling guilty about the number ofpills (antibiotics, vitamins, acid blockers,

appetite stimulants, enzymes) a child has totake, thus they give snacks that do not requireenzymes


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Common Misconceptions

Parents believing that increasing enzyme

dose means their child is more ill not thatthe child is growing or eating more food orthat the food is higher in fat content


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Set goals and gradually increase calories one mealat a time so parents and kids know when to stop

and can feel good at the end of a meal

Provide individual suggestions of food choices andboosters based on childs usual intake and

preferences

Provide feedback on progress

Making Nutrition Education Behavioral


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Making Nutrition Education BehavioralStart With Snacks

Most parents are not routinely giving 2-3 snacks a day

Even if giving snacks, most are not giving the mostcalorically dense foods

It is easy to increase calories through snacks becausesnacks can be given throughout the day

Snacks are not as stressful as meals because theyusually do not require preparation (quick and easy)


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Making Nutrition Education Behavioral If more calories are needed after increasing snacks,

then chose to augment the meal that has the lowestnumber of calories and/or the meal the familyidentifies as the easiest to target


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Sometimes a Referral is Needed

Typical child behaviors and parenting strategies may :

Be insufficient and create barriers

Inadvertently reinforce not eating giving attention tochildren when they are engaged in behaviors incompatible

with eating such as dawdling, pouting, complaining,excessive talking, leaving the table


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Behavioral Intervention Needed

When parents consistently express concern about

child behaviors during meals, it is helpful to equipparents with extra skills to enable them to workmore effectively with their children


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Behavioral InterventionProvide behavioral skills in addition to presenting

nutritional recommendations

Examples: Teach parents to set limits on meal length

Provide reward for appropriate eating such ascompliments, attention, and activities

Ignore behaviors incompatible with eating (this ishard)


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Behavioral Modification

Reinforcement

Setting Rules

Praise positive eating

behavior

Ignore negative eating

behavior

Contingent Privileges

Shaping Behavior

Reward system

Behavioral Contracting


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Reinforcement

Reinforcement - An event that makes the behaviorthat precedes more likely to occur in the future

It can be:

Positive: A compliment, hug, pat on the back

Negative: A scolding, nagging

Verbal Physical


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Setting Mealtime Rules

A rule clearly states IN ADVANCE a relationship between aspecific behavior and a specific consequence

At meals, rules are used for things like getting up andleaving the table before eating the required amount of food

A reason for the rule should be given like it is important

that you eat your dinner to grow and to stay strong andhealthy

Parents should be consistent with rules


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Mealtime Rules

Rules should be not be presented at meal time. Thisprevents the parent from being drawn into anegotiation about the rule at the time a child hasmisbehaved while eating

The parent should sit down with the child at a timeother than a mealtime, state the rule simply, and

provide the reason for it. The child should be asked torepeat the rule back to the parent to make sure the ruleand consequences do not come as a surprise to thechild


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Praising

A parents attention is a valuable reward to a child.

Through intervention, parents are taught to notice and

compliment behaviors that are compatible with eating

Listening and following parents instructions

Taking bites

Taking one bite after another

Chewing and swallowing more quickly Loading their fork while talking

Eating a bite of food before talking


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Praising

Praising

Increases childs desirable behaviors

Teaches child what a parent likes

Motivates child to please the parentHow to provide praise:

Describe specifically what child is doing that the parentlikes

Actively compliment the child often Be timely provide praise immediately when child does

things the parent likes


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Praising Statements

I really like the way you take a bite, talk, and then takeanother 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 discussyour 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 andchild. It may seem uncomfortable or awkward at first andmay take some time to find the best style for parent andchild.


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Ignoring

Behaviors parents are taught to ignore:

Excessive talking or story telling that interruptseating for more than 10 seconds

Complaints about food or amount

Whining

Child sitting without taking bites Child chewing for prolonged time

Goofing around


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IgnoringWhen using ignoring, parents should:

Continue conversations with spouse and other children

Be ready to give attention to the CF child immediately if heengages in a desirable behavior

Timing Is Very Important!


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Contingent Privileges The awarding of privileges to the child for meeting his

calorie/meal goal

Giving child something he desires for doing somethinggood for himself (eating sufficient calories)

One-to-one time with a parent doing an activity

of the childs choice Access to video games

TV viewing


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Contingent PrivilegesThe privilege system will not work if:

The awarding of the privilege is more important tothe parent than to the child

The child does not have a vested interest in thereward and would rather forego award than eat

The parent cannot be consistent in awardingprivileges


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Behavioral Contracting

Formalizes the use of contingency management

Defines the behavior that is to occur

Defines the consequences that will be delivered, bywho and when


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Energy ContractThis week, I agree to: Date: __________________

1. Get more energy at snack, breakfast, and lunch by eating the food myMom or Dad gives me.

2. Eat the same amount of food at dinner. My Mom and Dad will tell me howmuch I need to eat.

3. Eat my meals within the time limit. My parents will tell me how muchtime I have to eat my meals. When the time is up, they will take away myplate.

If I work really hard and meet my energy goals, then my parents agree to letme choose one of the activities written here:

______________________________

______________________________

My signature: My parents signature:

_________________________ ____________________________


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ShapingThe gradual attainment of a target behavior through the

rewarding of successive steps that gradually build upon oneanother

Food acceptance is increased Calorie goals are broken down by meal so only one meal is

targeted each week Calorie goals are gradually increased each week until the end

goal is achieved

Start with small amount of food on plate Child needs to taste (put to tongue) Child needs to take one bite


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Explore sources of parental anxiety/depression

Relaxation techniques or psychotherapy

Provide calm, confident environment (hard if child

is at risk -- paradox)

Help families feel supported to offset helpless orfatalistic feelings

Provide Emotional Support


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Adolescent and Adult Issues Adolescents and adults should self-monitor to judge

whether energy needs are obtainable orally

Contracting can be with healthcare providers instead of a

parent

Patients should set their own goals that are small,reasonable and gradually build over time

Patients should be encouraged to self-reward

Families experience reduced stress once adolescents candrive to go out for meals and siblings mature andunderstand the demands of CF on their sibling


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Issues Specific to AdolescentsAllan Age 17I had a hang-up for the longest time about taking my

enzymes in front of other people. I never wanted to standout or be different from the other kids at school. Sosometimes I skipped taking them altogether. It got to thepoint that the greasy, high-calorie food in the cafeteria wasreally 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 turnedout that it wasnt a big deal. No one was turned off that Itook them and I felt a lot better.


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Issues Specific to Young AdultsJames Age 19I 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 inhigh school. I was shorter and smaller than most everyone else. I

was really worried, too, that I wouldnt grow or reach pubertywhen everyone else did. I hated being different.

What helped me adjust was I really made an effort to eat a lot andkeep my weight up. I wanted to do everything I could to helpmyself grow. Finally, I grew some and was just about as tall assome people in my class. And even though I was still little, I

joined the swim team and did pretty well. Just getting intosomething I liked doing helped me feel a lot better aboutmyself.


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Title


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Stark, L.J., Bowen, A.M., Tyc, V.L., Evans, S.J., & Passero, M.A. (1990). Abehavioral approach to increasing calorie consumption in children with

cystic fibrosis. Journal of Pediatric Psychology, 15, 309-326.

Stark, L.J., Knapp, L.G., Bowen, A. M., Powers, S.W., Jelalian, E., Evans,

S., Passero, M.A., Mulvhill, M.M., & Hovell, M. (1993) Increasing calorie

consumption of children with cystic fibrosis: Replication with two-year

follow-up. Journal of Applied Behavior Analysis, 26, 435-450.

Stark, L.J., Mulvhill, M.M., Jelalian, E., Bowen, A. M., Powers, Tao, S.,

Creveling, S., Passero, M.A., Harwood, I., Lapey, A., Light, M., & Hovell, M.(1997) Descriptive Analysis of Eating Behavior in School-age Children WithCystic Fibrosis and Healthy Control Children. Pediatrics, 99, (5) 665-671.

Stark, L. J., Opripari, L.C., Spieth, L.E., Jelalian, E., Quittner, A. Q., Higgins,

L., Mackner, L., Byars, K., Lapey, A., Stallings, V.A., Duggan, C. (2003)

Contribution of behavior therapy to nutrition adherence in cystic fibrosis: A

two-year randomized controlled study. Behavior Therapy, 34, 237-258.

References


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Crist W., McDonnell P., Beck M., Gillespie CT, Barrett P., Mathews J.Behavior at mealtimes and nutritional intake in the young child with cystic

fibrosis. Developmental and Behavioral Pediatrics 1994; 15: 157-161.

The Behavioral Treatment Be In Charge!

www.oup.com/us/pediatricpsychology

University of New Mexico CF Center, Incorporating Behavioral Management

Into Dietary Counseling, Cystic Fibrosis Foundation, Adapted by Angie M.,

King, MS, PPC Nutrition Fellow, August 2007.

Cystic Fibrosis Nutrition Guidelines: Optimizing Strategies to Improve

Nutrition. Cystic Fibrosis Foundation Webinar, May 27, 2008.

References


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Case Studies

Parent PerspectiveFelicia

The Poster Child

Makes parent feelsuccessful

Has hunger, eats well, iscompliant

Experiences typicaladolescent behavior andresponds positively to inputby healthcare providers

Andrew

The Problem Child

Makes parent feel like afailure

Is never hungry, doesnteat, non-compliant

Apathetic to continuedinput and education fromhealthcare providers


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Observation of Child Behaviors

Meals in families with a CF child tend to be excessively long

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