Identifying feeding problems in mentally retarded persons: development and reliability of the screening tool of feeding problems (STEP)

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Abstract

Feeding problems are extremely common among individuals with mental retardation. Palmer, Thompson, and Linscheid (1975) estimate that 33% of persons with mental retardation have severe feeding difficulties or problems. Furthermore, the consequences of untreated feeding problems can be severe if not fatal. Despite these numbers, little has been done to systematically identify these problems. The Screening Tool of Feeding Problems (STEP) was developed as a means to identify feeding problems presented by persons with mental retardation, and thus facilitate the process of identifying who would benefit from some type of behavioral or medical intervention. Items included in the STEP target feeding problems identified in the literature, in the areas of risk of aspiration, food selectivity, feeding skills deficits, food refusal and associated behavior problems, and nutrition related behavior problems. The current study describes the construction of this scale, provides psychometric data including test-retest and cross rater reliability, and factor analysis data.

Introduction

Researchers in the field of mental retardation have demonstrated that this population of individuals is more likely than the general population to be diagnosed with comorbid disorders [e.g., depression; (Hodapp & Dykens, 1996)] and/or exhibit behavior problems [e.g., self-injury; Belfiore and Detail 1990, Johnson and Day 1992]. Mash and Barkley (1996) suggested that approximately 20% of individuals with mental retardation are diagnosed with comorbid psychopathology, which is 3-to-5 times greater than estimates of the general population. Additionally, prevalence rates of problem behaviors such as self-injury range between 2 and 14% (Belfiore & Detail, 1990) among persons with mental retardation, while rates are essentially zero among the “normal” population beyond the preschool years (Johnson & Day, 1992). Similarly, Palmer, Thompson, and Linscheid (1975) reported that approximately 1/3 of individuals with developmental disabilities have some feeding problem, and furthermore that approximately 80% of the severe and profound mentally retarded population have some feeding difficulties.

Similar to other problem behaviors, the etiologies of feeding disturbances are usually discussed as either medical or environmental. For example, studies by Rogers, Stratton, Victor, Kennedy, and Andres (1992), and Kuruvilla and Trewby (1989) found that between 50 and 90% of the cases evaluated with rumination disorder had a preexisting gastro-intestinal medical problem such as esophageal reflux and esophagitis. Conversely, Freeman and Piazza (1998) demonstrated that food refusal was maintained by negative reinforcement (termination of the meal). Both of these problem behaviors may also have the alternative etiology. For example, it is possible that individuals refuse food due to an undetected aversive food allergy, and rumination persists because of the attention caregivers deliver when the behavior occurs.

Fredericks, Carr, and Williams (1998) found that 6–10% of developmentally disabled persons living in institutional settings engage in rumination. Unfortunately, one of the primary risks associated with rumination is aspiration which can be fatal. According to Konarski, Favell, and Favell (1992) rumination is estimated to be the cause of death in 5–10% of those who ruminate. Pica is another serious behavior that occurs in between 9 and 25% of mentally retarded individuals in institutional settings (Matson & Bamburg, 1999). Individuals who ingest inedible objects (i.e., pica) such as paint chips and cigarette butts, are at great risk of poisoning. Individuals who are food selective, either by type (e.g., eat only cheeseburgers), texture (e.g., eat only pureed foods), temperature (e.g., eat only foods of room temperature), feeder (e.g., will only eat if fed by their mother), location (e.g., will only eat when alone), or a combination of these, are at risk for malnutrition, and possibly the need for a feeding tube if they do not take in enough food or do not have a well balanced diet.

Many feeding difficulties pose serious health risks, including aspiration (Rogers, Stratton, Msall, & Andres, 1994), the need for feeding tubes (Didden, Seys, & Schouwink, 1999), poisoning (Pueschel, Cullen, Howard, & Cullinane, 1977–1978), and malnutrition (Ramsay & Zelazo, 1988). O’Brien, Repp, Williams, and Christophersen (1991) discussed the lack of feeding skills that can result from individuals having been maintained on a developmentally inappropriate diet/food texture. A diet not appropriate for the individual’s developmental level can result in delayed development of chewing, and continued infantile sucking.

There are numerous types of feeding problems among the developmentally disabled population, and assessment and treatment should be tailored to address each specific problem. Sisson and Van Hasselt (1989) suggested that feeding problems could be divided into four categories, (1) lack of independent skills, (2) disruptive behavior, (3) eating too much or too little, and (4) selectivity (by type and texture). Though these categories do account for many feeding problems, they are not comprehensive. Other feeding problems that are present among the mentally retarded population that are not included in this model are rumination, vomiting, pica, food stealing (during and/or outside of meal times), and other areas of selectivity (i.e., setting, temperature, and feeder).

The majority of current research in the area of feeding problems among persons with mental retardation focuses on treatments based on antecedent and consequence manipulations. For example, Fredericks et al. (1998) described several effective behavioral treatments for rumination including a satiation diet, and differential reinforcement of incompatible behaviors (DRI). Kern and Marder (1996) demonstrated the effectiveness of presenting a preferred food with a nonpreferred food simultaneously as a method to treat food type selectivity. Freeman and Piazza (1998) treated food refusal behavior with escape extinction and stimulus fading techniques. Stimulus fading was also the procedure used by Shore, Babbitt, Williams, Coe, and Snyder (1998) to treat food texture selectivity.

Despite the growing body of research on assessment and treatment, there is currently no standardized method (that the authors were able to find) of identifying those individuals with feeding problems who would benefit from treatment, especially those individuals residing at institutions and developmental centers. In these settings the presence of a feeding problem is often not brought to the attention of the appropriate personnel until an evaluation of malnutrition is warranted, or once staff are sufficiently stressed or intolerant of the client’s mealtime behavior. Similarly, in the community feeding problems are by and large not brought to the attention of professionals until the problem has become severe, such as the child’s failure to grow. Furthermore, once it has been established that a feeding problem exists, informal caregiver interview is most often the method used to determine the specific problem area. Considering this, the purpose of developing the Screening Tool of Feeding Problems (STEP) was to assist mental health professionals in the early identification of feeding problems displayed by persons with mental retardation. These problems can then be targeted for assessment and treatment. The purpose of this study is to establish the psychometric properties of this scale. This preliminary study describes the construction of this scale, provides some psychometric data, and includes a factor analysis conducted to see if the items loaded on factors similar to the categories developed by rational groupings.

Section snippets

Test construction

Initially twenty-two items were identified as important feeding problems among developmentally disabled individuals. These items were based on current literature in the area of assessment and treatment of feeding difficulties in the population of persons with mental retardation Fredericks et al 1998, Kern and Marder 1996, Linscheid 1983, Munk and Repp 1994, O’Brien et al 1991. The items were worded such that a positive endorsement of items would indicate the presence of a feeding problem. The

Principal component analysis

A principal component analysis (PCA) was conducted for the frequency data of the 570 subjects to determine whether items would load on factors similar to predetermined categories. The PCA did not function as a tool for excluding items that failed to load on factors, since each of the 23 items addresses essential feeding problems. In addition, items within the same category may not co-occur, and thus fail to load on the same PCA factor. For example, individuals who engage in one behavior (e.g.,

Discussion

The STEP appears to be stable over time and across raters. Both the test-retest and cross-rater reliability was acceptable for both the scale as a whole and for each of the categories. This information suggests that informants continued to endorse the same problem areas over a short period of time (two-to-four weeks), and that the problem areas are recognized by multiple staff members. The measure of inter-item consistency (coefficient alpha) was slightly below acceptable levels both for the

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