The Nursing Approach To Prolonged Hospitalization Of Handicapped Children
Mary O'Brien, R.N. Margaret Owens, R.N. Jan Ralph, R.N.
This article describes the development of a new and different approach to the treatment of handicapped children exposed to prolonged hospitalization. The program got its start when the government appointed the Rehabilitation Institute of Montreal as one of the centers for the evaluation and treatment of the children suffering from congenital malformations due to their mothers' use of thalidomide in pregnancy. These children will continue to be seen at regular intervals for re-evaluations, fittings of new prostheses, and training in their use, as this program extends until the children reach the age of 21 years.
Most of the children suffering from congenital deformities due to thalidomide were hospitalized during the first year of life. At this age the nurse's role was largely custodial, although attention was also given to problems related to skin care, sitting and standing balance, and protection from injury. However, as the children started to grow, it was necessary for the nurse to reexamine her role. How could one apply the basic concept of rehabilitation- the preparation of the patient for a meaningful role in society- to these children who had little or no idea of the outside world?
Effects of Hospitalization
By the time the children were about two years of age, several were still hospitalized, and the difference in development between these children and those who had had the advantages of normal home life was quite apparent. This difference was confirmed by our colleagues in psychology, whose findings made it very evident that something must be done to provide the hospitalized child with some of the advantages and stimulation of a domestic environment.
The first problem was the excessive number of people coming into contact with the children. A study by the Social Service Department showed that it was possible for each child to have contact with no less than 43 people in one day- nurses, doctors, therapists, volunteers, nonprofessional staff, patients, and visitors. Moreover, with the demands of rotation, the nurses caring for the children changed two or three times a week.
To deal with this problem, a number of administrative changes were made. First a "Baby Team," consisting of two registered nurses and one licensed nursing assistant, was set up. The team leader was a nurse with pediatric training and a great deal of experience. The second R.N. was herself the mother of a 2-year-old. The nursing assistant was a young married woman who had a special aptitude for child care. Two nursing assistants were especially assigned for evening duty. As far as was practicable, the care of the children was carried out by this team, under the supervision of the Head Nurse. This routine entailed some sacrifice on the part of the other staff on the floor. As the Baby Team did not rotate, the other staff had to do more tours of shift duty, and of course they also regretted the loss of contact with a most lovable group of patients. The situation was also explained to the volunteers, who cheerfully agreed to confine their attentions to children over five years of age.
Next, the Head Nurse re-examined the physical setup of the ward, and arrangements were made for the children to take over two large units on the floor-one for sleeping, the other for eating and playing-instead of occupying six smallish rooms-four for sleeping, one for eating, and one for playing-as they had been doing. This change had many advantages:
Security was enhanced, since the children were within a definite area, not confined (the rooms are 23 feet by 17 1/2 feet), but out of the way of other patients, wheelchairs, and corridor traffic.
The rooms were near the nursing station, so that observation was constant.
Better cross ventilation was possible, and provision of an even room temperature was easier.
The children's toys and equipment were more adequately controlled, and toys, especially, were safe from the raids of older children.
At this point, members of the Baby Team discarded their uniforms in favor of ordinary street clothing. This innovation proved successful with both parents and children. The children were also encouraged to call the Baby Team nurses by their Christian names. This procedure had two purposes: (1) The children's speech development was slow, and it did not seem reasonable to expect a child whose first words would normally be "mama" or "papa" to substitute "Miss Ralph" or "Madame Roussel." (2) At 2 or 3 years of age, the children were not identifying individuals. As they are mostly French-speaking, every one was "ma tante." With the use of Christian names, it became easier for the children to identify the nurse and their aunts became special rather than general.
Introduction to Outside World
The next step was to introduce the children to the outside world, so outings were initiated at such times as they could be coordinated with prosthetic training. Small groups were taken to visit the zoo, the circus, shopping centres, and Santa Claus, and to eat lunch in a restaurant. The children had picnics and train rides and were taken skating in a public park. When they were 3 1/2 to 4 years of age, our Physiotherapy Department started to teach them to swim, and their daily sessions in the pool were a high spot in their days.
The Baby Team nurses also took the children to their own homes for lunch. On these latter visits, the children were very appreciative of things they didn't see in the Institute-the design and color of foods, china, tablecloths, shower curtains, door knobs, and especially carpets. We tried to introduce as many of these things as possible into the Institute.
The result of these outings was most satisfying. After a short time, the most withdrawn child became quite relaxed about new human contact. The reaction of the general public was also quite encouraging. Apart from an occasional stare and a few questions from mothers with children of the same age, we met only kindly interest and offers of help if required.
From the outings, the children developed an interest in getting dressed and wearing pretty clothes. We made no attempt to hide the prosthesis, but otherwise tried to dress the children as much as possible like children of their own age. They developed very definite likes and dislikes in regard to color, and we tried to make them feel that the garments they preferred were their own and not communal articles.
Much thought was given to the design of garments to be worn over the prosthesis, especially those for the upper extremities, and after consultation with the Nursing, Occupational Therapy and Psychology Departments, and a group of ladies who very kindly offered to sew for us, we evolved several functional garments which were also attractive in appearance.
Velcro closures were used instead of buttons, but the illusion was preserved by sewing buttons in place. Iron-on patches were also used inside skirts and dresses across the shoulders, as we found that the action of cables quickly wore through materials. The child can open and close the Velcro with his prosthesis or feet, thus making him as independent as possible in dressing and undressing.
One attractive but useful dress has Velcro closures down the back. It is made sleeveless and has separate sleeves in a contrasting color which are attached inside at shoulder level with Velcro. This arrangement permits the child to use the prosthesis without sleeves for most activities. The sleeves are then easily fixed in position for dress-up occasions (Fig. 1 and 2 ).
Toilet independence inevitably presented many problems. Panties were designed on a diaper principle, with strips of Velcro down each side substituting for safety pins (Fig. 1 and 2 ). The diaper is held around the waist by an attached band of material. To remove the flap of the panties to go to the toilet, the child inserts his prosthesis or fingers into a loop made of tape on either upper front corner of the diaper and pulls the flap down. To replace the flap, the child sits down on the diaper and raises the flap, using the loops to pull it up into position. Then he stands up and presses his hips against the wall to fasten the Velcro securely.
The clothing requirements of children with deformities are complex, and the Baby Team leader was given the additional assignment of coordinating the needs and ideas of the Occupational Therapy Department, parents, nurses, and volunteers.
It is interesting to note the manner in which the concept of the rehabilitation team was applied to the thalidomide group of children. Every week, the Baby Team held a meeting led by our consultant in psychology, and the advice provided on the management of individual children was invaluable. Since it is, of course, essential that the nurse and occupational therapist work closely together in the field of prosthetic training, the occupational therapist in charge of the children also attended these meetings. From the meetings, too, a most rewarding relationship with the Social Service Department developed, and this relationship has since been extended beyond this group of children to all age groups in the unit. Our colleagues in the Speech Therapy Department also attended these meetings and described both the normal development of speech as well as the specific difficulties being experienced by various children. The Department of Therapeutic Recreation helped us with outings. Volunteers were very valuable. In fact, the entire endeavor was a real team effort, under the benign supervision of the Chief of Service.
The original thalidomide children are now all in their own or foster homes. Hopefully, their experiences with the Baby Team have made their adjustment a little easier Certainly, as a result of this unique experience, the Nursing Department is better equipped to deal with con-genitally malformed children; the principles and practices described in this article are being applied to other young children with congenital malformations and traumatic amputations.
Mary O'Brien, R.N., is the Director of Nursing, Margaret Owens, R.N. is Head Nurse od the Paediatric Unit, and Jan Ralph, R.N., Leader, Baby Team Rehabilitation Institute of Montreal Montreal, Quebec