BEHAVIOR 10.1177/0145445503259833 Kuhn, MatsonMODIFICATION / ASSESSMENT /OF September FEEDING 2004
Assessment of Feeding and Mealtime Behavior Problems in Persons With Mental Retardation DAVID E. KUHN JOHNNY L. MATSON Louisiana State University
Feeding and mealtime behavior problems are commonly observed among individuals with developmental disabilities. These problems include, but are not limited to, food refusal, food selectivity, mealtime aggression, rumination, pica, and insufficient feeding skills. Difficulties of this type can be associated with life-threatening consequences of other serious health-related problems. Because of the nature of these problems and the lack or accurate client self-reporting, an interdisciplinary assessment in addition to a thorough behavioral assessment is recommended to ensure the best quality of care. This article discusses the role of the various disciplines, and the types of behavioral assessments that are currently being utilized by clinicians and researchers. Keywords: feeding; mealtime; behavior problems; mental retardation
Individuals diagnosed with mental retardation have a higher prevalence of comorbid disorders and behavior problems than do the general population (Borthwick-Duffy, 1994; Matson & Barrett, 1993). One area of concern among this population includes feeding and mealtime behavior problems. Although problems such as food refusal and rumination are often associated with infants and children (Johnston, 1993; Parry, 1994; Riordan, Iwata, Finney, Wohl, & Stanley, 1984), these problems are also prevalent among older individuals with mental retardation. Rogers, Stratton, Victor, Kennedy, and Andres (1992) estimated that 6-10% of individuals diagnosed with mental retardation living in institutional settings engage in rumination, and on a larger scale as many as 80% of individuals diagnosed with severe and profound mental retardation have a serious problem related to feeding (Perske, Clifton, McClean, & Stein, 1977). BEHAVIOR MODIFICATION, Vol. 28 No. 5, September 2004 638-648 DOI: 10.1177/0145445503259833 © 2004 Sage Publications
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Feeding problems such as rumination, vomiting, pica, food refusal, and inadequate feeding skills are all behaviors that can contribute to severe health problems, both among the general population and the developmentally disabled. These problems can include, but are not limited to, aspiration, esophagitis, and dehydration due to vomiting or rumination, poisoning resulting from pica, and malnutrition due to inadequate food intake (Kern & Marder, 1996; Pueschel, Cullen, Howard, & Cullinane, 1977-1978; Rogers, Stratton, Msall, & Andres, 1994). Furthermore, individuals who fail to take in a sufficient amount of food may be placed on feeding tubes such as nasogastic or gastronomy tubes (Riordan et al., 1984; Shore & Piazza, 1997). These interventions can be associated with other health risks, and fail to aid in the development of appropriate and effective eating behavior. Feeding problems are often confounded by other deficits common in this population in areas such as communication (Poulton & Algozzine, 1980), motor skills/abilities (Newell, 1997), physical abnormalities (Pulsifer, 1996), and nutritional imbalances common in this population (Lofts, Schroeder, & Maier, 1979; Pace & Toyer, 2000). For example, individuals may refuse food because they do not like that particular type of food, but are unable to appropriately communicate this dislike. Or, individuals may ruminate because they are physically unable to recruit other sources of stimulation because of physical limitations (e.g., confined to a wheelchair). A nutritional or chemical imbalance/deficit may precipitate the occurrence of pica (e.g., dirt to compensate for an iron deficiency). Finally, an individual may eat only small amounts of food or only eat foods of a specific texture because of an esophageal stricture. Certain conditions where mental retardation is typically present are associated with an increased risk of feeding problems. For example, Spender et al. (1996) found that oral motor functions of individuals with Down’s syndrome, specifically jaw and tongue function, were often impaired, resulting in feeding difficulties. Similarly, Frazier and Friedman (1996) found a high prevalence of aspiration among individuals with Down’s syndrome. Riordan et al. (1984) suggested that developmentally disabled individuals are more likely to have oral motor dysfunction. Some medical problems may be mistaken for behavior problems, such as rumination resulting from gastroesophageal reflux disease
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(GERD). Medication side effects may also present similar to a behavior problem such as a misdiagnosis of rumination due to neuroleptics, which have been shown to interfere with swallowing (Bohmer et al., 1999; Rogers et al., 1992). To identify the problem, its etiology and/or function, and determine an appropriate course of treatment, it is necessary to effectively and comprehensively identify and assess the problem. ASSESSMENT OF FEEDING AND MEALTIME PROBLEMS BEHAVIOR RATING SCALES
Prior to assessing the function or etiology of feeding and mealtime problems, the individual problems must be identified. The identification of feeding problems among adults with mental retardation has not historically been formalized or systematic. In state institutions, the responsibility of identifying and treating these problems has fallen on a nutritional management committee including, among those from other disciplines, an occupational therapist, a nutritionist, and a physician. Identification of the problem has also resulted from staff or caregivers informally alerting health personnel when the problem has resulted in severe health problems or has been difficult to manage. Although several problems may be appropriately identified and addressed by these disciplines (e.g., rumination due to GERD, or food refusal due to esophagitis), many problems may be more appropriately evaluated by mental health professionals (i.e., psychologists). Some measures have proven useful for identifying the presence of feeding difficulties in individuals with mental retardation. The Reiss Screen (Reiss, 1987) is a 38-item questionnaire used to screen for symptoms of psychopathology and other maladaptive behaviors displayed by individuals with mental retardation. The psychometric properties for this instrument range from modest to good, .75 including test-retest reliability, .67 interrater reliability, and an internal reliability (Cronbach’s alpha) at .85 (Sturmey, Burcham, & Perkins, 1995). Although this questionnaire does target a wide range of disorders and problem behaviors, very little attention is given to problems
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related to feeding and mealtime behavior (Item 12). This item addresses problems related to weight gain or loss resulting from either overeating or insufficient eating. The Diagnostic Assessment for the Severely Handicapped–II (DASH-II) (Matson, 1995) is a more comprehensive 84-item instrument that screens for symptoms of psychopathology among individuals diagnosed with severe and profound mental retardation. The symptoms are subdivided into 13 diagnostic categories. The psychometric properties of this instrument are good, with reliability coefficients for interrater and test-retest at .86 and .84, respectively (Matson, 1995). The DASH-II includes six items that address feeding problems common among individuals with severe and profound mental retardation including food stealing, vomiting, choking, pica, eating too fast, and eating an insufficient amount. Although feeding problems may also be symptoms of forms of psychopathology (e.g., depression), many of the problems identified by the DASH-II are problematic in and of themselves. The Assessment of Dual Diagnosis (ADD) (Matson & Bamburg, 1998) is another screening instrument used to identify symptoms of psychopathology among individuals diagnosed with mild and moderate mental retardation. Similar to other screening measures of psychopathology, it is essential that this instrument be used in conjunction with other assessments, including behavioral observation. The ADD is a 79-item scale that groups items into 13 subscales that correspond to disorders in the Diagnostic and Statistical Manual of Mental Disorders (4th ed.). Six items related to eating comprise one of the subscales, targeting food refusal, eating too quickly, pica, rumination, vomiting, and a fear of weight gain. Three of the items (food refusal, vomiting, and a fear of weight gain) target symptoms associated with Anorexia Nervosa and/or Bulimia Nervosa. The psychometric properties of this instrument are very good, with reliability coefficients for internal consistency, interrater, and test-retest at .93, .98, and .93, respectively (Matson & Bamburg, 1998). None of these scales provide a detailed evaluation of common feeding problems in persons with mental retardation. The Screening Tool of fEeding Problems (STEP) (Matson & Kuhn, 2001) is a behavior rating scale designed for the express purpose of
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identifying feeding problems displayed by individuals diagnosed with mental retardation. The STEP consists of 23 items each of which targets a specific feeding problem, or problem/deficit that interferes with feeding, for example, food-type selectivity, food texture selectivity, pushing food away, vomiting, and eating too quickly. For categorizing purposes, these problems are organized into five categories of problems including aspiration risk, feeding skills, selectivity, behavior problems, and nutrition. The psychometric properties for this measure are modest, with test-retest reliability (.72), and cross-rater reliability (.71) (Matson & Kuhn, 2001). Once the problem(s) has been identified, an interdisciplinary evaluation and behavioral assessment is essential. INTERDISCIPLINARY ASSESSMENT
Medical evaluation. Depending on the problem and/or topography of the feeding problem a comprehensive workup is recommended. The identification of a medical or motor problem can assist in the treatment or approach to treatment of the problem. For example, determining that an individual refuses to eat certain foods (e.g., tomatoes) because it exacerbates his or her GERD would suggest a medical intervention (e.g., acid-suppressing medication) to suppress the reflux. A medical assessment may include the following assessment components. To assess the integrity of the hypopharynx and other upper gastrointestinal anatomy, and to ensure that the individual can protect his or her airway during swallowing, a Barium Swallow Study would be indicated (Babbitt et al., 1994; Hyman, 1994). This procedure also provides information regarding the movement of the food/ bolus through the upper gastrointestinal tract, which may demonstrate that the individual is bringing food up from the stomach or esophagus back into the mouth (i.e., rumination). It is also useful in diagnosing severe grades of GERD (Ott, 1994). An upper gastrointestinal tract (GI) endoscopy provides information about whether medical conditions exist (e.g., esophagitis), and about the mucosal lining of the esophagus, stomach, and duodenum (Babbitt et al., 1994; Bohmer et al., 1999). The presence of esophageal reflux can also be ascertained using this technique (Kuruvilla &
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Trewby, 1989). A gastric emptying scan is useful in evaluating motility in the upper gastrointestinal tract (Babbitt et al., 1994). Aberrant results may be associated with a poor appetite. Esophageal manometry is a relatively new technique that measures intraesophageal pressure that provides information about peristalsis and thus the esophageal motility (Patti, Diener, Tamburini, Molena, and Way, 2001). Nutrition evaluation. Nutritionists can also provide valuable information pertaining to feeding problems (O’Brien, Repp, Williams, & Christophersen, 1991). An evaluation of the individual’s weight indicates whether he or she is overweight or underweight. An evaluation of an individual’s diet ensures that all necessary nutrients are consumed. A nutritionist can assess food allergies that contribute to the presenting problem, or identify syndromes that are the basis for problems such as the inability to digest or metabolize certain proteins. Occupational therapy evaluation. Instrumental in the evaluation of behavioral feeding problems is an evaluation by an occupational therapist (O’Brien et al., 1991). This evaluation is comprehensive in examining the individual’s coordination and physical ability to perform various tasks. The skills evaluated that are necessary for selffeeding include gross reflexive movements, hand-eye-coordination, and motor development. The skills evaluated for oral feeding include oral pharyngeal reflexes, and oral-motor skills including sucking, swallowing, chewing, and tongue control. OBSERVATIONAL ASSESSMENT
Parameters. As will be discussed below, the majority of the behavioral assessment methodology for feeding problems among persons diagnosed with mental retardation is individually tailored to the individual and the presenting problem. Similar to the assessment of other severe behavior problems (e.g., self-injurious behavior and aggression), the dependent variables are typically measured using a frequency count, duration, occurrence/nonoccurrence data, or permanent products. For example, a clinician would use a frequency
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measure when recording the number of times a food was presented, and/or the number of times the food was accepted or expelled, or the number of times the individual engaged in physical aggression during the meal. A duration measure may be useful when examining how long the individual remains in his or her seat during the meal, and occurrence data may be used when recording an individual engaging in rumination, because the behavior often does not have a discrete beginning and end. A measure of permanent products may be useful when measuring the amount of food consumed/not consumed. These measures provide quantifiable information regarding the occurrence of the target behavior, though accurate data collection is dependent on trained observers. Assessment. Assessments of feeding problems have predominantly involved manipulating the consequence following the problem behavior. For example, following the behavior of pushing food away, the effects of various consequences, such as delivering or withholding attention, permitting a break from the meal, or access to more preferred foods, are evaluated. Munk and Repp (1994) recognized that this type of assessment only identified possible functional relations between the problem behavior and a consequence. Therefore, they designed an assessment to evaluate the effects of the antecedent condition, or in this case the type and texture of the food being presented, on the occurrence of problem behavior. In 1994, Munk and Repp evaluated the stimulus variables that may occasion food refusal behavior by systematically manipulating the types of foods (e.g., fruits, vegetables, meats, starches) and the food textures within each food type (e.g., junior, ground, chopped), and recorded the participants’ acceptance and expulsion of food. This methodology provided information about whether the participants refused food because of selectivity by type of food, selectivity by the texture of the food, or selectivity by both type and texture. Functional assessment techniques have been applied to numerous behavior problems (e.g., self-injurious behavior, physical aggression); however, its application with feeding problems has not been as well researched. Sprague, Flannery, and Szidon (1998) conducted analyses to identify the behavioral function(s) of mealtime spitting
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and whining. Following interviews with family and staff, and meal observations, the authors generated hypotheses regarding the function of the mealtime behavior and tested the hypotheses across two experimental conditions. Providing differential consequences following problem behavior, Sprague and colleagues demonstrated that the mealtime problem behavior was maintained by positive reinforcement in the form of access to the next bite of food. Interobserver agreement averaged 97% for 30% of sessions conducted. No data were reported regarding the initial mealtime observation or caregiver interviews and how the hypotheses were generated, thus questions remain whether other reinforcement contingencies should have been evaluated. Girolami and Scotti (2001) conducted analog functional analyses of food refusal and related mealtime behavior displayed by 3 participants. Using experimental conditions similar to those described by Iwata, Dorsey, Slifer, Bauman, and Richman (1982), the authors tested five hypotheses regarding the function of the problem behavior: (a) positive reinforcement in the form of access to attention, (b) negative reinforcement in the form of escape from bite/meal, (c) positive reinforcement in the form of access to tangibles, (d) positive reinforcement in the form of access to preferred edibles, and (e) automatic reinforcement. Interobserver agreement averages were maintained at or above 90% across all participants and dependent measures for at least 30% of intervals observed. Moderate to high levels of consistency (W = .64, .92, .96, using Kendall’s Coefficient of Concordance) were obtained between the results of the analog analyses and those obtained from other functional assessment data, using the Motivation Assessment Scale (MAS) (Durand & Crimmins, 1988), the Functional Analysis Interview Form (FAIF) (O’Neill, Horner, Albin, Storey, & Sprague, 1990), and observational descriptive data (Bijou, Peterson, & Ault, 1968). Informal observations and/or descriptive assessments (Bijou et al., 1968) provide information about events surrounding the target behavior that can aid in assessment and the identification of functional relations. When evaluating mealtime behavior, the variables assessed may include the characteristics of the feeder (if applicable), interactions between the feeder and client, and the behavior of the feeder (e.g., the
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rate at which they present food, or the type of attention they deliver during the meal) (Babbitt et al., 1994). SUMMARY
The assessment of feeding and mealtime behavior problems exhibited by persons with mental retardation is a process that ideally requires a multidisciplinary approach, including assessments from occupational therapists, physicians, dieticians, and psychologists. Assessment procedures utilized by mental health professionals (i.e., psychologists) targeting feeding and mealtime behavior problems have not been as standardized or methodologically sound as other disciplines, or compared to assessment procedures applied to other behavior problems. Recent developments in assessment methodology are encouraging, including the functional analysis of food refusal described by Girolami and Scotti (2001) and the STEP developed by Matson and Kuhn (2001). Research on treatments for feeding and mealtime behavior problems has been growing; however, the need remains for standardized assessment methods. Though many feeding related problems are best treated by disciplines other than psychology, many problems can and should be assessed and treated using behavioral techniques. REFERENCES Babbitt, R. I., Coe, D. A., Cataldo, M. F., Kelly, K. J., Stackhouse, C., & Perman, J. A. (1994). Behavioral assessment and treatment of pediatric feeding disorders. Developmental and Behavioral Pediatrics, 15, 278-291. Bijou, S. W., Peterson, R. F., & Ault, M. H. (1968). A method to integrate descriptive and experimental field studies at the level of data and empirical concepts. Journal of Applied Behavior Analysis, 1, 175-191. Bohmer, C. J., Niezen de Boer, M. C., Klinkenberg-Knol, E. C., Deville, W. L., Nadorp, J. H., & Meuwissen, S. G. (1999). The prevalence of gastroesophageal reflux disease in institutionalized intellectually disabled individuals. The American Journal of Gastroenterology, 94, 804810. Borthwick-Duffy, S. A. (1994). Epidemiology and prevalence of psychopathology in people with mental retardation. Journal of Consulting and Clinical Psychology, 62, 17-27.
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Durand, V. M., & Crimmins, D. B. (1988). Identifying variables maintaining self-injurious behavior. Journal of Autism and Developmental Disorders, 18, 99-117. Frazier, J. B., & Friedman, B. (1996). Swallow function in children with Down syndrome: A retrospective study. Developmental Medicine and Child Neurology, 38, 695-703. Girolami, P. A., & Scotti, J. R. (2001). Use of analog functional analysis in assessing the function of mealtime behavior problems. Education and Training in Mental Retardation and Developmental Disabilities, 36, 207-223. Hyman, P. E. (1994). Gastroesophageal reflux: One reason why baby won’t eat. The Journal of Pediatrics, 125, S103-S109. Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., & Richman, G. S. (1982). Toward a functional analysis of self-injury. Analysis and Intervention in Developmental Disabilities, 2, 320. Johnston, J. M. (1993). Phenomenology and treatment of rumination. Child and Adolescent Psychiatric Clinics of North America, 2, 93-107. Kern, L., & Marder, T. J. (1996). A comparison of simultaneous and delayed reinforcement as treatments for food selectivity. Journal of Applied Behavior Analysis, 29, 243-246. Kuruvilla, J., & Trewby, P. N. (1989). Gastro-esophageal disorders in adults with severe mental impairment. British Medical Journal, 299, 95-96. Lofts, R. H., Schroeder, S. R., & Maier, R. H. (1979). Effects of serum zinc supplementation on pica behavior of persons with mental retardation. American Journal on Mental Retardation, 95, 103-109. Matson, J. L. (1995). The Diagnostic Assessment for the Severely Handicapped–II. Baton Rouge, LA: Scientific Publishers. Matson, J. L., & Bamburg, J. W. (1998). Reliability of the Assessment of Dual Diagnosis (ADD). Research in Developmental Disabilities, 19, 89-95. Matson, J. L., & Barrett, R. P. (1993). Psychopathology in the mentally retarded (2nd ed.). Boston: Allyn and Bacon. Matson, J. L., & Kuhn, D. E. (2001). Identifying feeding problems in mentally retarded persons: Development and reliability of the Screening Tool of Feeding Problems (STEP). Research in Developmental Disabilities, 22, 165-172. Munk, D. D., & Repp, A. C. (1994). Behavioral assessment of feeding problems of individuals with severe disabilities. Journal of Applied Behavior Analysis, 27, 241-250. Newell, K. M. (1997). Motor skills and mental retardation. In E. W. MacLean Jr. (Ed.), Ellis’ handbook of mental deficiency, psychological theory and research (3rd ed.). Mahwah, NJ: Lawrence Erlbaum. O’Brien, S., Repp, A. C., Williams, G. E., & Christophersen, E. R. (1991). Pediatric feeding disorders. Behavior Modification, 15, 394-418. O’Neill, R. E., Horner, R. H., Albin, R. W., Storey, K., & Sprague, J. R. (1990). Functional analysis: A practical assessment guide. Sycamore, IL: Sycamore Publishing. Ott, D. J. (1994). Gastroesophageal reflux disease. Radiologic Clinics of North America, 32, 1147-1166. Pace, G. M., & Toyer, E. A. (2000). The effects of vitamin supplement on the pica of a child with severe mental retardation. Journal of Applied Behavior Analysis, 33, 619-622. Parry, J. B. (1994). Merycism or rumination disorder: A historical investigation and current assessment. British Journal of Psychiatry, 165, 303-314. Patti, M. G., Diener, U., Tamburini, A., Molena, D., & Way, L. W. (2001). Role of esophageal function tests in diagnosis of gastroesophageal reflux disease. Digestive Diseases and Sciences, 46, 597-602.
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Perske, R., Clifton, A., McClean, B. M., & Stein, J. I. (Eds.). (1977). Mealtimes for severely and profoundly handicapped persons: New concepts and attitudes. Baltimore: University Park Press. Poulton, K. T., & Algozzine, B. (1980). Manual communication and mental retardation: A review of research and implications. American Journal of Mental Deficiency, 85, 145-152. Pueschel, S. M., Cullen, S. M., Howard, R. B., & Cullinane, M. M. (1977-1978). Pathogenetic considerations of pica in lead poisoning. International Journal of Psychiatry in Medicine, 8, 13-24. Pulsifer, M. B. (1996). The neuropsychology of mental retardation. Journal of the International Neuropsychological Society, 2, 159-176. Reiss, S. (1987). Reiss screen test manual. Worthington, OH: International Diagnostic Systems. Riordan, M. M., Iwata, B. A., Finney, J. W., Wohl, M. K., & Stanley, A. E. (1984). Behavioral assessment and treatment of chronic food refusal in handicapped children. Journal of Applied Behavior Analysis, 17, 327-341. Rogers, B. T., Stratton, P., Msall, M., & Andres, M. (1994). Long-term morbidity and management strategies of tracheal aspiration in adults with severe developmental disabilities. American Journal on Mental Retardation, 98, 490-498. Rogers, B., Stratton, P., Victor, J., Kennedy, B., & Andres, M. (1992). Chronic regurgitation among persons with mental retardation: A need for combined medical and interdisciplinary strategies. American Journal on Mental Retardation, 96, 522-527. Shore, B., & Piazza, C. C. (1997). Pediatric feeding disorders. In E. A. Konarski, J. E. Favell, & J. E. Favell (Eds.), Manual for the assessment and treatment of the behavior disorders of people with mental retardation (Tab BD22, pp. 1-10). Morgantown, NC: Western Carolina Center Foundation. Spender, Q., Stein, A., Dennis, J., Reilly, S., Percy, E., & Cave, D. (1996). An exploration of feeding difficulties in children with Down syndrome. Developmental Medicine and Child Neurology, 38, 681-694. Sprague, J., Flannery, B., & Szidon, K. (1998). Functional analysis and treatment of mealtime problem behavior for a person with developmental disabilities. Journal of Behavioral Education, 8, 381-392. Sturmey, P., Burcham, K. J., & Perkins, T. S. (1995). The Reiss Screen for Maladaptive Behavior: Its reliability and internal consistencies. Journal of Intellectual Disability Research, 39, 191195.
David E. Kuhn, M.A., is currently a fourth-year graduate student in clinical psychology at Louisiana State University. He will be completing his pre-doctoral internship at the Kennedy Krieger Institute in Baltimore, MD. His current research interests include the assessment and treatment of mealtime problem behavior and other destructive behaviors displayed by individuals with developmental disabilities. Johnny L. Matson received his Ph.D. in psychology from Indiana State University. He is currently a full professor and director of clinical training at the Louisiana State University. He has published extensively in the field of mental retardation. His current research interests include the assessment of psychopathology among persons with developmental disabilities and the evaluation of side effects of psychotropic medication use in persons with developmental disabilities.