RESNA 26th International Annual Confence
This paper describes a case study of a 62 year old male with ALS, who, having recently lost his ability to self-feed, participated in a study to evaluate a new device that enables individuals to eat without using their arms or hands. The Assistive Dining Device (ADD), had been developed under an NIH Small Business Innovation Research Grant (SBIR) grant and was undergoing clinical evaluations. The man was provided an ADD to use in his home setting for the three month study. He was able to use the ADD to regain independence during mealtimes. His wife (and caregiver) learned to set up the device for him and the two were able to resume the more normalized mealtime environment that they had enjoyed throughout the many years of their marriage. The study ended just before Thanksgiving and they requested (and were allowed) to continue using the device throughout the holiday season.
Tom was a 62 year old engineer who had ALS. Six weeks after his diagnosis was confirmed, he became unable to feed himself. He was deeply impacted by his loss of upper limb mobility which made him totally dependent upon his wife at mealtimes. They sought help from the Veterans Administration Medical Center (VA), where he was receiving services, to provide him with equipment that could help him feed himself. The VA had no resources that could help him but they referred him to a research study which was being conducted. At the time Tom enrolled in the study he used a powered wheelchair which he operated using a joystick controlled by his right hand. He was unable to transfer independently and his oral motor abilities and speech were deteriorating.
The development of the Assistive Dining Device (ADD) was funded through a SBIR Grant (see acknowledgment) reported at the 22nd Annual RESNA Conference in 1999(1). It is an electro-mechanical feeding device which was designed to be accessible to a broad range of users. It can operate fully automatically or can be controlled by the user with one or two adaptive switches. The ADD accommodates three bowls of food at one time which can be easily snapped on or off of the device. (Each bowl serves one cup of food.) The top of the spoon is wiped by a special bowl cover to control the amount of food on the spoon. Three different bowl covers (high, medium and low) with different wipe edges are available for accommodating different foods and user's preferences in the amount of food placed on the spoon. As the spoon extends out to near the user's mouth, the bottom is wiped by the top edge of the bowl, thus minimizing dripping from the spoon. The ADD serves a wide variety of commonly accepted table foods that are normally eaten with a spoon or fork. The ADD can be mounted on it's Support Arm, that allows positioning the device, vertically and horizontally, to suit the needs of a wide variety of users, or, for users who sit at a dining table to eat, the device can be mounted on legs (4", 6" or 8") to accommodate the height of the consumer. For children, the device can be placed directly on the table top.
The objective of this case study was to evaluate the efficacy of the ADD for an individual who was dependent upon a caregiver for all of his nutritional needs. For the study, efficacy was to be determined from four criteria: volume of food consumed, length of the meal, participant and caregiver opinions of the ADD, and mealtime experience. Also, the impact of the ADD upon mealtime conversation was to be ascertained.
The participant was provided with an ADD which could be integrated into his normal mealtime setting and used for all meals that he desired. Six meals, equally spaced throughout the participation period were to be assessed. The study employed an ABA design where A represents meals that the participant was fed by his caregiver. These meals were measured as baseline meals. The B condition represents intervention with the assistive technology, where the ADD was used by the participant to eat his meal. Four meals were assessed where the ADD was used. All meals were videotaped. Additionally, a researcher recorded pertinent information about each meal and at the end of the meal interviewed the ADD user and the caregiver asking questions about their mealtime experience. Questions were answered using a 5 point Likert scale ranging from poor to good. The same interview questions were used at all assessed meals.
After the first baseline meal, Tom and his wife received training on use of the ADD. At the outset of the project Tom chose to have the ADD mounted, using the device's Support Arm clamped to an over-the-bed table. He controlled the ADD using two Jelly Bean switches which were placed on the dining room table below the hospital table. He extended his right arm/hand out for each switch operation. Even though this arrangement was not considered the optimal configuration by the researchers, it was Tom's choice. Device training was accomplished in one session, after which Tom and his wife kept the ADD and used it for the next week without assistance. At the end of the first week, problems that they had incurred were discussed and further instruction provided. Tom was dissatisfied with how the ADD was mounted, and, at this time, it was removed from the Support Arm and placed directly on the hospital table (using the table height adjustment and his wheelchair height adjustment for proper positioning in front of the device). After another week of use, he still found this positioning unsatisfactory. He wanted the ADD to be able to readily rotate relative to it's position in front of him. A short shaft (6 inches long) was made and the regular ADD mounting clamp was attached to the rear edge of the hospital table. The shaft was inserted into the clamp, and the ADD was mounted on the shaft using it's center mounting socket. (The ADD has two mounting sockets, one at the rear and another near the center.) This positioned the ADD bottom just above the table top and the device could easily be rotated around it's center. This mounting method best satisfied Tom's needs (and personal preferences).
Around a month after beginning the use of the ADD, Tom changed the switch locations to a small tray placed in his lap. Also, the two switches were changed from Jelly Bean switches to a Prentke Romich light touch switch and a large pad switch. The relocation and switch change was less fatiguing for Tom and more appropriate for his range of motion and strength at that time.
Tom participated in the field testing for approximately three months. During this period, he ate most meals, when he was at home, using the ADD. Six mealtimes were assessed for the study at approximately two-week intervals. For meals 1 and 6, his wife fed him. For meals 2, 3, 4 and 5 he ate using the ADD. It was found that Tom ate the same quantity of food at each meal but the time it took him to consume the meal varied based upon the texture of the food being served (i.e., not the method of eating). A significant difference between baseline and assessment meals was the sequence in which he ate the various foods. When using the ADD, he ate several bites of one food before moving to another food selection. When his wife fed him, she gave him a single bite of one food and then a bite of another food, etc.
Videotapes recorded during assessment meals were used to analyze vocalizations during the meals. They were measured based on four categories of vocalizations: reinforcing, directive, social and other. (In this case, "other" was used exclusively for vocalizations relating specifically to the ADD.) All reinforcing and directive statements were made by Tom to his wife. He asked her to adjust the environment, adjust the ADD, cut up food, etc. He was always very appreciative of what she did and provided encouragement for her, particularly when she was learning to operate the ADD. These types of interactions and discussion about the ADD diminished as the couple became familiar with the ADD and it became part of their normal mealtime routine. Social interactions during the meals increased throughout the study even though Tom's own vocalizations lessened due to his constantly worsening oral motor control and his need to concentrate on processing each bite of food and how he swallowed it.
Responses to mealtime experience interview questions indicated that even though Tom felt he had lost all control over his life, the ADD allowed him to regain some of that control. His wife's responses indicated that her level of comfort with setting up and using the ADD increased throughout the project.
Tom was able to use the ADD immediately and both he and his wife said that the ADD allowed them to return to a more normal mealtime. Tom said that he believed that using the ADD lessened the burden being placed on his wife. She agreed that once she had learned how to use the ADD and adjusted to setting it up and preparing food to be served in it, that she was freed to eat her own meal without worrying about pacing her own eating around feeding Tom.
At the end of the study Tom expressed a desire to continue using the ADD. The device was left with him. Shortly thereafter, Tom's fatigue level increased and he discontinued using adaptive switches altogether. The ADD was operated in the fully automatic mode which still gave him control over the food he ate. The speed at which the ADD presented food to him was slowed down as his chewing and swallowing deteriorated. He continued using the ADD until two weeks before he was unable to eat food by mouth due to severe problems with aspiration. He finally discontinued ADD use when moving his head forward the 1.5 to 2 inches necessary to remove food from the spoon, for even a few bites of food, became exhausting to him due to the advanced stage of his disease.
Mealtime Partners, Inc.
1137 S. E. Parkway
Azle, TX 76020
Phone (817) 237-9991
Fax (817) 237-0102