2004 Conference Proceedings

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ASSISTIVE TECHNOLOGY AIDS TEENAGER WITH CEREBRAL PALSY TO GAIN MEALTIME INDEPENDENCE

Presenters
Catherine Wyatt
Mealtime Partners, Inc.
1137 S. E. Parkway
Azle, TX 76020
Phone: (817) 237-9991
Fax: (817) 237-0102
Email: catherine@mealtimepartners.com

ABSTRACT

This paper describes a case study of a 16 year-old girl who has cerebral palsy and, as a result, is unable to eat independently. She, and her family, participated in a study to evaluate a new device that can aid individuals in eating. The girl was provided an Assistive Dining Device (ADD) to use in her home setting for the 3-month study. It was shown that she was able to use the ADD to gain independence during mealtimes and she expressed great satisfaction with her resulting lifestyle change.

BACKGROUND

Shedra has cerebral palsy, dystonia and mild mental retardation. Her right arm is held in a rotated position behind her back. She frequently experiences spasms that cause her left arm to flail. Her overall arm control prohibits her self-feeding. She is ambulatory for short distances and dislikes using a wheelchair. Her speech is unclear but she is fully understood by people who know her. At school, her teacher, or an aide, feeds her lunch.

Shedra lives at home with her mother, 13 year-old brother and stepfather. Her mother works a second shift job and is not at home when the children come home from school. Her brother cooks supper for both he and his sister and feeds the meal to his sister. For this reason it was decided that he would serve as Shedra's "mealtime partner" for the purposes of this study.

The development of the Assistive Dining Device (ADD) was funded through a Small Business Innovation Research Grant. The ADD enables people to feed themselves without using their arms or hands. Its design was developed to overcome the shortcomings of its predecessors and, as a result, it has capabilities far exceeding previous attempts at assistive feeding devices. The most significant advancement is its capability to reliably deliver a well-rounded spoonful of food to the user. It utilizes three bowls for containing the food and they can rotate until the desired food is located under the spoon. The spoon then dips into the bowl, scoops up the food, wipes the top and bottom of the spoon and presents a well-rounded spoonful of food very near the lips of the user. The user must lean forward slightly and remove the food. The ADD requires a small amount of neck movement.

The ADD serves a wide variety of commonly accepted table foods that are normally eaten with a spoon or fork. Peas, breakfast cereal, pudding, fruit cocktail and other similar foods are all easily served with the ADD. Larger foods like meats, pizza, cookies and salads are also easily served once they are cut into bite sized pieces. The ADD can be mounted on its Support Arm, that allows positioning the device, vertically and horizontally, to suite the needs of a wide variety of users. Alternatively, for users who sit at a dining table to eat, the device can be mounted on legs that accommodate the height of the consumer.

OBJECTIVE

The objective of this study was to determine the efficacy of the ADD. Efficacy was to be determined from four criteria: volume of food consumed, length of meal, participant and caregiver opinions of the ADD, and the user's perception of the overall mealtime experience. Also, the effect of the ADD upon mealtime conversation was to be ascertained.

METHOD

The participant was provided with an ADD that could be integrated into her normal mealtime setting and used for all meals that she desired. Six meals were assessed during the 3-month participation period. The study employed an ABA design where A represents meals that the participant was fed by her normal caregiver, and B represents intervention with the assistive technology (i.e., where the ADD was used). A researcher recorded pertinent information about each meal and, at the end of the meal, interviewed the user and the caregiver with questions about their overall 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 whether using the device, or not.

Prior to using the ADD an evaluation of Shredra was conducted to determine the ADD mode of operation that would be most appropriate. It was decided that she cognitively and physically could easily use two adaptive switches (which gives the user the greatest control over the device). A 'Big Red" switch and a pillow switch were selected and were positioned on the left corner of the dining table. She operated the switches by first using a gross movement of her left arm followed by either pressing the pillow switch with the heel of her hand or activating the "Big Red" by poking it with her index finger.

The ADD was mounted on legs and placed on the dining table. Shedra sat on a dining chair to eat. At the beginning of the study, Shedra wrapped her feet around the front legs of her chair. She did this to stabilize herself because, when she was fed by a caregiver, she leaned sideways and to her right and tilted her head upward, which otherwise destabilized her. After using the ADD for a while, she stopped doing this.

Once the device configuration had been determined, Shedra was taught to use the ADD. She easily comprehended the controls and learned to operate it in one training session. It took four training sessions before her brother fully understood how to prepare food to be served in the device. He tended to put too much food in each bowl and failed to adjust the texture of dense food enough to allow the ADD spoon to pass smoothly through it. After the fourth training session he became very good at food preparations and was able to serve almost any food in the ADD successfully.

During Shedra's first session using the ADD she did not appear to understand that she could initiate taking bites of food. She waited for the researcher, her brother, or her mother to tell her to press her switches. During that session she only took four bites spontaneously (without verbal prompting). The next time Shedra used the ADD, without any further training, she did not need any prompting and operated the device spontaneously.

She was extremely interested in learning about other people who used the ADD. After being told about a young lady who used the ADD with no adaptive switches, she and her brother began experimenting, and from that time on Shedra chose, meal by meal, how she would operate the device. She would either use two switches, or no switches, taking advantage of the device's fully automatic capability to serve food.

RESULTS AND CONCLUSIONS

Shedra participated in the field testing for approximately 3 months. During this time she ate most of her meals using the ADD. Six mealtimes were assessed for the study at intervals of approximately 2 weeks. For meals 1 and 6 her brother fed her. For meals 2, 3, 4, and 5 she ate using the ADD. For all assessed meals Shedra ate all of the food that was offered to her. The volume of the food offered at these meals varied from two to six and one fourth cups of food. At the beginning of each meal she ate very quickly but as her hunger was satiated she slowed down. For meals where only a small amount of food (or only soft textured foods) was provided, she ate the whole meal very quickly. Her speed of consumption varied from four minutes per cup of food to nine minutes per cup.

Shedra expressed a very strong preference for using the ADD to eat rather than being fed by a person, saying that she has always wanted to be able to feed herself. Her mother, who is her primary mealtime partner, pointed out that even though she does not intend to, she knows that when feeding her, she hurries Shedra because she feels the time pressure to get on and complete her other tasks in taking care of the house and family. Additionally, she commented that when you do the same thing three times a day, year after year, you find it tedious and grow impatient. She also noted that until they started using the ADD, she had never been able to eat at the same time as Shedra. Shedra's brother also expressed a strong preference for using the ADD. He said that when he became impatient feeding his sister, he felt that he was being mean to her.

Shedra's mealtime socialization changed dramatically once she started using the ADD. Prior to the study, Shedra did not participate in any mealtime conversations. She ate hurriedly and without a pause until the meal was finished. At first, when eating using the ADD, she paused in her eating to listen to conversations. After about a month of using the ADD she began to occasionally join in conversation. By the end of the study she was exhibiting mealtime conversational behavior similar to the rest of her family.

ACKNOWLEDGMENTS

This study was funded by the National Institutes of Health (NIH), National Institute of Child Health and Human Development (NICHD) Grant Number 2R44HD33942.

A special thank you to Shedra and her family for sharing this experience with us.


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