Pediatric rehabilitation: special patients, special needs.

Pediatric Rehabilitation: Special Patients, Special Needs

Children who have spinal cord injuries, amputations, chronic diseases or congenital birth defects such as spina bifida require special treatment. Pediatric rehabilitation differs greatly from adult rehabilitation because the child is constantly growing intellectually, physically and emotionally. Periodic assessment must be done in order to determine the childhs level of development in all areas and what the child is able to understand about the disability, treatment and prognosis.

The family, of course, is the primary mediator of the child's development. A parent's constant grief or guilt because the child was born with a congenital defect, experienced a trauma, or if the child has contracted a chronic disease which may be genetically related, can have a negative impact on the child's development. It is important that parents receive their own counseling and rehabilitation to provide them with enough emotional resources to cope with the situation. In turn, they can provide more positive feedback to their child, feedback that allows the child to grow and develop appropriately.

As a child reaches adolescence, body image becomes more important than at any age. When there is a disease or disability that makes the adolescent appear different, it can be very damaging to the long-term sense of self and the identity that an adolescent carries into adulthood. Peer interactions are particularly important for children who have disabilities. When these children are teased or taunted by other children who do not have physical problems or who do not understand, it can have a dramatic impact on the growing child's self-concept. How a child is able to adapt physically, emotionally and intellectually is very important in overcoming their deficit or their difference and moving into independent living as an adult.

This article will address those issues faced in pediatric rehabilitation as well as present an illustrative program directed specifically to this population. In addressing the issues of pediatric rehabilitation, the developmental stages both physically, intellectually and emotionally that a child goes through must be considered. Additionally, differences of diagnostic problems as well as the etiology of these problems must be taken into account.

Developmental Issues

In understanding child development it is important to realize that biological, social, cognitive and behavioral components all are important. How

the child progresses in one area affects the others as well. In dealing with children, it is important to think comprehensively, not focusing exclusively on only one aspect. Referring to the chart on Developmental Issues (See Figure 1), childhood, according to Piaget, is divided into five different stages. The first year of life and the second year of life encompass such major changes both physically and psychosocially that it is important to list them separately. By the time the child reaches ages three to five there is more cohesiveness in issues of development. From ages six to twelve, progress is more qualitative and quantitative. The last stage of child development which warrants separate attention is that of adolescence. When children reach puberty until the age of early adulthood, major physical, intellectual and psychosocial changes occur that are, again, qualitatively and quantitatively different from earlier childhood.

Physically, the first year of life is marked by the child's increased strength and gross motor functioning. The child develops proximo-distally. This simply means that the child must develop strength and coordination of the trunk and head first and, later, gain more strength and gross motor functioning of the limbs. The stages of intellectual growth, as defined by Piaget (1952) from birth to age two, focus on sensorimotor development. Sensorimotor development simply means that the child, in order to grow intellectually, is attuned to taking information through the five senses and responding motorically to the environment.

Erik Erikson (1968, 1977), in defining the psychosocial stages of development, states that the child is in a crisis of learning trust versus mistrust. At this point it is very important that the child have consistent parenting, particularly in a significant social relationship with the mother or mother substitute. It is only through consistent parenting and meeting of the child's needs that the child can develop a sense of trust and, as a favorable outcome, be able to trust and have optimism as he/she faces future years.

The second year of physical development is primarily geared to fine motor development. It is during this time that the child is able to ambulate and begin to focus on manual dexterity. The ability to explore the environment and stabilize gross motor development as well as accentuate fine motor coordination is extremely important. Still, intellectually the child is learning by taking in information from the environment and responding physically (Piaget, 1952). Psychosocial development encompasses a crisis known as autonomy versus doubt (Erikson, 1968, 1977). It is in this time period that both mother and father really provide significant social relationships. It is during this time, also, that the child tests parents. The child's goal is to develop some degree of self-sufficiency. He/she may begin self-feeding, independent toileting, obtaining objects in the environment that are of interest without waiting for the parents to secure those objects and give them to the child. It is important during this period that the child learn that they can have some control over their own body and over their own interactions in the home and the world at large. The favorable outcome of this stage then results in a sense of self-control and beginning feelings of adequacy.

During ages three to five, physical development is focused on increasing coordination and skill development. It is during this age that the child first begins to venture from the home. He/she may be in contact with the outside world in a day care center and through play with peers in the neighborhood. Intellectually, the child enters what Piaget (1952) calls the pre-operational stage of intellectual development which roughly spans from the second year until the seventh year of age. Pre-operationally, the child may observe adults and older children in the environment, motorically copy these activities and engage in certain activities which they do not fully understand. It is during this age stage that little girls and boys begin to play house. They begin to take a newspaper and pretend to read, and take paper and pencil and pretend they are "at work." Psychosocially, the child at this stage is dealing with a crisis of initiative versus guilt (Erikson, 1968, 1977). The basic family unit is the most important significant social relationship. This includes not only parents but siblings and extended family that may be closely involved. In terms of initiative, the child must learn to initiate their own play with others and appropriately begin to make requests of the basic family to meet his/her own wants and desires. If the child's initiative is encouraged and his/her ability for coordination and skill development appropriately reinforced, the favorable outcome during this stage is that the child can develop a sense of purpose and direction and an ability to initiate his/her own activities.

The fourth stage which encompasses roughly age six to puberty continues a focus on development of coordination and skills. It is during this time that children begin to get involved in scholastic as well as extracurricular activities. Skill development can range anywhere from being involved in sports which enhance physical skills, to dance classes and to more organized activities, e.g. Cub Scouts, Brownies, Boy Scouts and Girl Scouts. Piaget (1952) states that, during this time frame, children als move intellectually into a stage of concrete operations. This means that the child has now begun to develop an understanding of how to achieve certain goals in the environment. The child begins to make connections intellectually between concrete relationships. He/she develops reading skills, an understanding of mathematical quantities and proportions, acquires basic scientific principles and some knowledge of the steps necessary for artistic creations. Psychosocially, the child is facing a period of crisis between feelings of industry versus inferiority. (Erikson, 1968, 1977). Significant social relationships have now been expanded more into the feedback from peers, as well as adults in the world at-large, begins to develop an understanding of him/herself as industrious - capable of focusing, working and achieving within appropriate age levels - or feelings of inferiority. The development of coordination and skills continues. The child becomes known in his/her school and neighborhood for particular skills and abilities-- "the good speller," "the best baseball player," etc. If children are not able to develop skills in particular areas and be recognized, they may have feelings of inferiority about themselves that continue on into adulthood. However, favorable resolution of developmental skills and intellectual and physical skills during this time can result in feelings of competence in intellectual, social and physical spheres.

During the teenage years, the most important physical developments revolve around growth and sexual changes. The adolescent's concern with body image is more important at this time of life than it will be at any other time in the life span. Coming to some acceptance of his/her own body type as well as his/her own physical assets and deficits is very important. Intellectually, a teenager develops a capacity for formal operations (Piaget, 1952). This means that the adolescent is able to understand abstract concepts. His/her understanding of time increases to the point the the child can see him/herself either in the past or project into the future. Capacity for understanding abstract concepts in academic fields -- such as science, mathematics, literature -- become enhanced as well as the ability to make connections and associations about life experiences. Psychosocially, the teenager wants to find his/her own identity versus a sense of confusion about who he/she is (Erikson, 1968, 1977). Significant social relationships involve peer groups

and outgroups as well as models of leadership. A teenager must begin, in his/her own identity, to establish emotional independence from the parents as well as understand the basis for his/her own self-esteem and acceptance not only by others but of him/herself as well. It is during this time the teenager must use his/her social and intellectual skills to determine what direction future plans will take. This means beginning to understand a scholastic/career direction as well as the possibility of future marriage and the possibility of establishing a family. The favorable outcome in resolving these issues means that the teenager can develop an integrated image of him/herself as a unique person.

Any trauma or dianosis of chronic disease that occurs any time in the child's growth cycle toward adulthood will have an impact on all areas of development. It will influence developmental stages both physically and emotionally and even intellectually. Further, adjustment to the disability will be influenced by how the child has developed physically, intellectually and socially up to this point. The earlier the onset, the easier it is for the child to integrate the disability or disease diagnosis into his/her developing image as an adult. The more gradual the onset, the easier it is also for the child. Because a disability can have such developmental impact upont the child, special attention should be paid to rehabilitation that fits the individual child at a particular age stage.

Special Programs

Biscayne Rehabilitation Institute in Miami, Florida, has developed a special approach to rehabilitation for pediatric patients. The issues of development and how development is impacted by trauma, congenital deficits or chronic disease diagnosis are tkane into special consideration when treating youngsters. The staff at Biscayne Rehabilitation Institute is composed of physical and occupational therapists, biofeedback specialist, speech therapists, psychologists and art therapists. Infants from the first year of life through teenagers in late adolescence are seen for both comprehensive evaluations and treatment plannings as well as for follow-up treatment. Children and adolescents from the local area as well as from various parts of the nation, the Caribbean and South America, are seen for three-day evaluation. Assessment for gross motor and fine motor coordination are done by both physical and occupational therapists. If appropriate, a biofeedback evaluation may also be done in order to determine the child's ability to use this technique in his/her physical and occupational therapy programs as well as in stress reduction. as appropriate, a speech therapy evaluation may also be conducted along with psychological testing for both intellectual, emotional and neuropsychological functioning. If warranted, a more in-depth assessment of neurovisual functioning may also be done by a neuropsychologist/optometrist. A complete profile of the child's physical, intellectual and social functioning is gathered and treatment recommendations for the family to implement in their local area are provided. Before the child and family leave the clinic, there is a conference with the entire staff in order to relay this information, followed by a written report. In recognition of recent research which has focused upon the important role of the parents, particularly the mother, in assisting the child's adjustment to disability and treatment in the medical setting, recommendations for assistance and back-up for the family are also focused upon (Bus, 1985; Greenbaum et al., 1985).

Head Trauma

Specific treatment programs at the Institute are geared to particular problems that arise for specific disabilities and/or chronic diseases. The Head Trauma Program involves not only diagnosis of damage to the brain and the specific areas involved but also provides a primary treatment program. Children and adolescents are seen in individualized cognitive retraining. This means that alternative programs for stimulating brain development as well as teaching children to cognitively compensate for their deficits are developed. Specific tasks may range from helping the child engage in games and activities that require eye-hand coordination, visual planning and paper-pencil tasks that involve calculations, abstraction and problem solving to specific computerized programs that enhance attention and concentration, and memory--verbal, visual and general.

Art therapy to enhance nonverbal processing of emotional concerns, in addition to eye-hand coordination and visual tracking, sequencing and problem solving is also a major component of this program. Individual psychotherapy with the patient and their families is a regular part of helping the child adjust to the disability as well as assist the family in appropriate behavior management. Physical and occupational therapy are also available as prescribed and the therapist works in close coordination with staff members in the cognitive retraining and psychotherapy aspects of the program to determine the best approach to the child.

Intensive cases, such as fraternal twins who were head injured at birth due to a complicated delivery and are now seven years of age, are seen at Biscayne Rehabilitation Institute for both initial diagnosis and long-term follow-up. Many adolescents are also seen. Age groupings may run from adolescents who are injured in organized sports to those who have been injured in a motor vehicle accident. One most important part of the program involves the development of social skills. Currently a program is in progress which addresses the needs of head injured teenagers and how a head injury impacts upon their ability not only to interact with the family and school authorities but, in particular, addresses peer interactions. The child can develop a sense of purpose and direction and an ability to initiate his/her own activities.

Spina Bifida

Working with the Spina Bifida Association of South Florida, Biscayne Rehabilitation Institute has also designed a special program to deal with the parents of children diagnosed with spina bifida. Both individual as well as group programs are available for the children and their well siblings. Since there can be many complications and extensive medical involvement of children with spina bifida, comprehensive evaluations are done on a periodic basis. The child's on-going physical and occupational therapy is followed closely. Further, because of the possibility of developmental delays and mental retardation accompanying spina bifida, psychological and neuropsychological testing are completed on an annual basis.

Parents meet in order to provide one another support both informationally and emotionally. Extensive information gathered by one parent in dealing with the problems of their child can be available to other parents within the group through networking. Additionally, parents can join one another in supporting projects geared to assist their children in the schools and the community at large. Emotional support, especially during times of crisis, is a particular function of this group. Parents with children that range as young as two to three years of age and as old as mid-to late teenage years can provide much needed support to one another. Issues of guilt, exhaustion, anxiety and depression are particularly relevant.

Patients involved in the children's group are seen with their siblings. This allows not only the children with spina bifida but also their well siblings to receive attention as to appropriate development, family roles and dynamics. In the patient and siblings group at Biscayne Rehabilitation Institute, children as young as four years of age and as old as fifteen are involved. It is particularly helpful for the younger children to be paired with the older children in various art therapy projects. This allows the older children to provide role models for the younger children either as dealing with the disability at later age stages or as dealing with their responsibilities as a sibling.

Amputations

Pediatric amputations are primarily a result of congenital deficits. However, on occasion severe trauma is experienced that causes a child to lose one or more of his/her limbs. The etiology of the amputation is taken into consideration in treatment of the child at Biscayne Rehabilitation Institute. For children with congenital deficits, the physical and occupational therapist attempts to assist the child as early as possible. Special prostheses can be brought to the clinic to work with the team in fitting and training of the amputee. Furthermore, work with parents in psychotherapy can allo them to voice the grief, anger, frustration and guilt they may feel at the birth of a child with a congenital deficit.

One patient, a six-month-old with an upper limb deficiency, was brought by the parents for early fitting. He was tested by the psychologist and found to be significantly below age level in his motor skill development. This, of course, has major implications for the child's intellectual growth as he was still in the sensorimotor period of operations. He was fitted with a passive closing device and given occupational therapy to train the parents in how to use the prosthesis. Additionally, parents were given a behavior modification program by the psychologist that would increase the child's wearing ability over time and reinforce successes in bilateral use of the prosthesis. At age 15 months, the child was tested again. This time he showed significant results. Both mental and motor development were on target for his age. Further, analysis of testing as well as free play in his home environment revealed the toddler to have incorporated his prosthesis as an active helper hand. He used his prosthesis to enable him to crawl, to walk holding on to furniture, to bring objects to the midline and for self-comforting behaviors. Clearly, early intervention from the team approach facilitated this child's development both physically and intellectually.

Treating children with traumatic amputations is a different process. First, the child must often be treated for post-traumatic stress disorder. Flashbacks of the trauma as well as anxieties about subsequent medical treatment in the hospital must be addressed. Children at Biscayne Rehabilitation Institute have been seen with traumatic amputations as young as four years of age. Additionally, work with teenagers has also been a significant focus. In addition to the post-traumatic stress disorder symptomatology that must be treated, children are addressed psychologically to come to grips with their altered body image, sense of dependency, fear, anger and decreased self-esteem. Again, the psychologist works closely with the other team members, particularly physical and/or occupational therapy, that are to provide consultation as to the best means of approach to help the child in accepting and learning to use the prosthesis. Family issues centered around possible feelings of anxiety, anger and guilt about the trauma that has occurred to the child are also addressed.

Spinal Cord Injury

Spinal cord injury is one of the most devastating of injuries for children and their families. In working outpatient with children who have been through an in-patient rehabilitation program, the focus is to maintain and increase the gains as well as adjustment to the school, family at home and the community-at-large. Physical and occupational therapy are often intensive with consultations from the psychologist to develop behavioral programs that will reinforce the patient for maintaining and increasing physical strength, endurance and skills. Psychologically, the child, along with parents, must deal with issues of dependency and altered body image as well as develop a realistic evaluation as to whether any future change can truly be anticipated. Children as young as twelve years of age with spinal cord injury, who were originally seen in an in-patient setting, have been followed through the Biscayne Rehabilitation Institute Clinic until early adulthood. In the case of one young man, an incomplete quadriplegic, continued intellectual and personality testing have been done over the last eight years. Because of certain personality problems that existed with this young man prior to his spinal cord injury, it is important to have periodic intellectual and emotional evaluations to separate what aspects of developmental problems that may be due to his reaction to the spinal cord injury versus his pre-morbid personality. It is only through close psychological follow-up that is coordinated with his physical and occupational therapy that such determinations can be made. However, this provides an invaluable conceptualization as to how to approach this young man and plan for future educational and vocational programs for him.

Learning Disabilities

Another program that encompasses learning disabilities is currently being developed. With both neuropsychologists and optometrists at Biscayne Rehabilitation Institute, a new system for developing the connection between the brain and vision have been addressed. In addition to more traditional approaches to learning disabilities via speech therapy and educational processes, this neurovisual retraining has added a significant component to increasing our ability to assist the learning disabled. Exercises for eye tracking, muscle strengthening, increasing the ability for convergence/divergence and fusion, and for symbolic processing of language are developed for each individual child. Progress is charted and coordinated with family, tutors and the school.

Chronic Disease

Children and adolescents who have chronic diseases are also seen through Biscayne Rehabilitation Institute's interdisciplinary program. Of major importance, of course, is whether or not the child's diagnosis is terminal. In cases, such as the 15-year-old who was diagnosed with carcinoma and had his leg amputated within three months, the focus is on assisting the child with both the post-traumatic stress disorder as well as beginning to process the underlying understanding of the disease and prognosis as well as how to cope. Again, psychological as well as physical and intellectual factors are very important.

In cases where diagnosis is not terminal but involves a long-term acceptance and adjustment of lifestyle, e.g. diabetes, the focus for treatment of the child is to assist in understanding the diagnosis, complying with medical treatment regimens and assisting the families in developing behavioral strategies that facilitate the entire family, as well as the identified patient, in making adjustments in the family system and way of life. Psychological follow-up that is directed to helping the patients and their families cope in periods of exacerbation or crisis is also important. Working on the team with the psychologist are physical and occupational therapists, as needed, to help the child in maintaining bodily integrity through exercise, passive range of motion and modalities as necessary and/or training in use and acceptance of adaptive devices.

Therapist Requirements

With only this brief overview of evaluation strategies and progress utilized at Biscayne Rehabilitation Institute, the importance of diagnosis, etiology and age stage at which the diagnosis is made, can be seen to be of critical importance. Children have special needs as patients and, in order to meet these, an institution and the therapists that staff the institution must have a special awareness and training in working with children. Needless to say, the institution must be committed to having children in the waiting room and hallways, be equipped with books, toys, games and videos to meet their needs--not only during treatment times but waiting times as well. The addition of just one child to a clinic waiting room can have a major effect on the mood of not only the staff but other patients as well. Adding additional children, the quality of change grows exponentially.

It is important that the institution and therapists be committed to working with the population of children and the major dynamic issues involved.

Therapists themselves must also have certain qualitites. It is important that therapists of all disciplines have the ability for abundant, directed energy. Working with children also requires staff to be spontaneous, creative and flexible. Humor is a most important asset. The ability for effective management of contingencies to ensure appropriate reinforcement of the child's successes and extinguishing of negative habits is another issue. Given the complexity of dealing with children, therapists of all disciplines must have a clear understanding of the overview of child development and be able to establish organization and goals in their treatments which can be reviewed as the child enters different age stages.

Despite the energy, intensity and range of skills needed to work with children in pediatric rehabilitation, the rewards of meeting the special needs of these special patients are great. Watching a child develop through the years and facilitating that growth and rehabilitation process is a unique endeavor. Staff become surrogate family and, as a result, share in the feelings of warmth and pride as the child approaches young adulthood with the sense of identity, self-esteem, acceptance and intellectual and physical abilities that allow him/her to establish an independent lifestyle. This is the true measure of success for pediatric rehabilitation.

References

Bush, Joseph P. "Parenting Children in a Stressful Medical Situation." Paper presented at the National Convention of the American Psychological Association, Los Angeles, California, August 1985.

Erikson, Erik H. Childhood and Society. New York: H.H. Norton and Company, Inc., 1968.

Erikson, Erik H. Toys and Reasons: Stages in the Realization of Experience. New York: H.H. Norton and Company, Inc., 1977.

Greenbaum, P.E., Abeles, L.A., Cook III, E.H., Melamed, B.G., Bush, J.P. "Mother-Child Interaction in the Medical Setting: A Sequential Analysis." Paper presented at the National Convention of the American Psychological Association, Los Angeles, California, August 1985.

Piaget, Jean. The Origins of Intelligence. New York: International Universities Press. 1952.