Behavior Intervention for Change Around Growth & Energy!
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Be In CHARGE! Behavior Intervention for CHange ARound Growth & Energy! PARENT MANUAL Lori J. Stark, Ph.D. Children's Hospital Medical Center University of Cincinnati College of Medicine © 2003 1 Note to User The following manual and the accompanying Child Manual have been used in several clinical research protocols. The latest study was a randomized clinical trial that demonstrated that Behavior Intervention for CHange ARound Growth & Energy! (Be In CHARGE!) was more efficacious than a similarly structured program that provided only the Nutrition Education component of these manuals. The program has been exported to other research protocols and successfully implemented by other research teams. The teams typically had five days of training in using these manuals and protocols. In the absence of training, the user of these manuals should consider several steps before using the protocol. Each session identifies key learning points throughout the sessions. These key points are followed by sample dialogue. Users of the manual should familiarize themselves with the key points and may choose to use the sample dialogue or modify it to match their individual presentation style. The important aspect is that the KEY POINT is communicated to the children and their parents. In addition, it is critical that the group leaders are familiar with the lessons and have an understanding of how to use activities described. For example, in Session Two the psychologist and dietitian need to be familiar with each child’s typical food/beverage intake and prepare calorie booster suggestions in advance so they can easily discuss relevant dietary changes for each family. Role play is often critical to successful implementation in a treatment situation. Many of the activities for the children’s group are adapted from common children’s games. Users should feel free to adapt other activities to focus on energy and nutrition that they feel would make the activities more relevant and enjoyable to the families they are seeing. Because of the copyright of some material, we are unable to provide all material used in this manual. However, we have provided references for obtaining the materials. To keep current with new food products and to make the food recommendations relevant to different regions of the country, it is recommended that the food list, especially the snack list, be updated to include brands common to your area and unique food preferences of the region of the country. For example, in Rhode Island coffee syrup is popular and available. However, it is not available in the Midwest. We were unable to include a list of recipes, but have listed several resources below, two of which are specific to cystic fibrosis. 2 Recipes Books: A Way of Life: Cystic Fibrosis Nutrition Handbook and Cookbook, 2nd edition (2002). Available from UW Hospital & Clinics Food and Nutrition Services University of Wisconsin Hospital and Clinics Rm F4/120 CSC 600 Highland Ave Madison, WI 53792 Fat and Loving It!!! By Gail Farmer & Sherri Willcox (1990) Available from Jumbo Jack’s Cookbook Co. P.O. BOX 247 Audubon, Iowa 50025 1-800-798-2635 Super Heroes Super Healthy Cookbook. By Mark Saltzman, Judy Garlan, & Michele Grodner (1981) a Warner Books New York, NY ISBN # 0-446-51227-3 Finally, a number of former postdoctoral fellows have contributed to the evolution of the manual over the years and deserve acknowledgement: Vida Tyc Scott Powers Elissa Jelalian Leslie Spieth Lisa Opipari Jennifer Hoover 3 Outline of Topics for Parent Groups Week Session Topic 1 1 Getting Started: Monitoring Calorie Intake Teach parents to monitor food and liquid intake and estimate calories. 2 0 No Meeting Parents mail back one week of calorie data and continue monitoring calorie intake. 3 2 Snack: A Found Opportunity Target meal: Snack. Teach praising and ignoring. Focus on teaching parents to inhibit coaxing and commanding. 4 3 Breakfast: The Most Important Meal of the Day Target meal: Breakfast. Teach parents to set reasonable rules and limits with consequences. 5 4 Relax & Review No target meal. Review rules and limit-setting. 6 5 Let’s Do Lunch Target meal: Lunch. Teach parents to use all skills taught to increase volume of food/liquid consumed via shaping. 7 6 What’s For Dinner? Target meal: Dinner. Bring all behavioral skills together. Introduce idea of increasing variety of accepted foods via shaping. 8 0 No meeting Transition to maintenance 9 7 Last Treatment Group: Planning for the Future & Sick Days. Discuss individual problems encountered and solutions implemented during previous two weeks. Discuss sick days and how to encourage children to eat during recovery. 4 SESSION 1 Getting Started: Monitoring Calorie Intake 5 Parent Group Forms/Supplies Demonstration Food Items: • One small jar of peanut butter • One box of cereal • One bag of chips • Two bulky rolls • Frozen corn • Two packages of cheese (i.e., Kraft Deli Deluxe 3/4 oz. singles and Kraft 2/3 oz. singles) • Parmesan cheese • Soda • Plastic model of meat item (e.g., steak) or slice of lunch meat Demonstration Measuring Tools: • Digital Food scale • Measuring spoons • Measuring cups • Three household spoons from different flatware sets • Knife (for leveling off items in measuring spoons) • Cereal bowl Parent Handbook (three ring notebooks) that has the following supplies: • Plastic zipper pouch • Calculator • Pencil • Lists of fast food calories • Calorie books • Calendar of group sessions with group leaders' contact information included Diet Diary Recording Tools: • Blank diet diaries for two weeks (without calorie goals) • Stamped, return-addressed manila envelopes (in which to return first week's diet diaries) • One set of measuring cups, measuring spoons, and a Digital Food scale for each family Parent Handouts: • “Measurement Instruction” Sheet • “Cereal Measurement” Handout • “Understanding Food Labels” Handout - find on website: http://www.thehealthpages.com/articles/ar-fdlbl.html • “Recording Recipes” Forms • Example of a completed Diet Diary • “Helper Sticker Chart” GETTING STARTED: MONITORING OF CALORIE INTAKE 6 GOALS: 1. PROVIDE RATIONALE AND OVERVIEW OF TREATMENT 2. TEACH PARENTS TO ACCURATELY MONITOR AND RECORD INTAKE I. Introductions (Psychologist Leads) A. Group Leaders should introduce themselves and their role in the program. B. Parents should introduce themselves. Introductions should include: 1. Their name 2. Their child’s name and age 3. Brief description of why they are participating (i.e., what they hope to get from group) II. Rationale (Psychologist Leads) A. "The purpose of the current treatment group is to provide parents and children with information about how they can increase the children's calorie intake to meet the CF Foundation's nutritional recommendations. Currently the treatment recommendations are for children with CF to consume between 125% to 200% of the RDA for healthy children. While you all have been told your child needs to eat more or gain weight, you may not have been told why the increased calories are so necessary for children with CF." III. Reasons for Increased Calorie Needs (Psychologist Leads) A. "There are a number of physiological reasons for the increased calorie need." 1. Lung Infections. "Children with CF often cope with chronic lung infections. Even when they are not sick, their basic bodily functions (such as breathing) take more energy to perform than individuals without CF because of constant low grade lung infections. The more acute the infection, the more energy the body requires.” 2. Possible Increased Metabolic Energy Needs. "There is currently some evidence that children with CF may have increased basic metabolic energy 7 needs independent of lung infection. Some researchers have found that even newborn infants with CF, without a history of lung infections, have a higher energy demand than infants without CF." 3. Malabsorption. "Eighty percent of children with CF have problems with malabsorption of nutrients and calories because of the lack of pancreatic enzymes necessary for digestion. Although taking pancreatic replacement enzymes helps control this loss of nutrients via stool, it does not totally correct for it. One study comparing children's fecal energy loss found that even children with CF who did not have symptoms such as stomach pain or frequent stools lost about 5% to 20% of their gross energy intake in their stools. Healthy children without CF only lose between 3% and 4% of their gross energy in their stools. We should also mention that children with CF especially have problems with fat absorption and that fat has the highest calorie content per gram of all nutrients (protein and carbohydrates)." IV. Treatment for Poor Weight Gain (Psychologist Leads) A. Nutritional Counseling. "The first approach to combat poor weight gain in CF has been prevention through nutritional counseling during clinic visits. Parents are often told to feed their children high calorie foods and/or to provide food on a frequent basis. Some centers are fortunate enough to have dietitians present in clinic to give specific feedback and recommendations to parents about their children's food intake. Unfortunately, there is often not enough time during the course of a busy clinic visit to cover this information as thoroughly as desired. In fact, we have found it necessary to devote six sessions to covering specific nutritional recommendations. Additionally, children may resist their parents' efforts to implement nutritional recommendations at home, and these behavioral problems may undermine parents' best efforts to provide their children with high calorie foods." 1. [Generate a brief discussion with parents regarding previous experiences with nutritional counseling]. “What have your experiences with nutritional consultation been like? From whom did you obtain this information? Was the information useful? Have you experienced any difficulties in following the dietitian's recommendations?” 8 B. Nutritional Supplements. "Sometimes parents of children with CF are advised to supplement their children's diet with nutritional supplements such as Scandishake, Boost, or Ensure.