Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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Achieving and Maintaining Body Systems Integrity and Function: Personal Care Skills
Susan Leibold


UNLIKE THE PERSON with an acquired disability, someone with a developmental disability like cerebral palsy or spina bifida has never experienced a nondisabled state. When caring for such a person, health care professionals tend to think in terms if rehabilitation, which implies a return to a state preexisting a disability, when in fact it would be more appropriate to think in terms of habilitation, that is, teaching the basic knowledge to achieve a better state of health. This knowledge is also essential to acquiring the personal care skills integral to independent living. These skills are essential in preventing such secondary conditions as skin breakdown, kidney problems, colon cancer, bone infections, and social isolation and consequent depression. The disabled young person may achieve these skills differently than the average person, but what is important is that he or she does achieve them and, in so doing, learn responsible, adult behavior.

Parents can help a developmentally disabled young person achieve these skills, but, unfortunately, parents are given little guidance or even permission to embark on this somewhat frustrating and lonely path. Consequently, many disabled teenagers have not developed independence from their parents in personal care areas. Their dependence affects their social relationships and the development of job skills. Tension and frustration may develop as parents and teenagers struggle with the difficulty of learning these skills, tensions that affect their relationship in the future.

ACHIEVING INDEPENDENCE IN PERSONAL HEALTH CARE

Personal health care is a lifelong responsibility for all people. The basic skills for achieving and maintaining personal health care include:

• understanding one's own health condition and treatment options,
• participating in one's own treatment,
• understanding the consequences of noncompliance: of not following through with a treatment plan and tracking alterations in health status,
• understanding the potential complications that can alter health status,
• knowing how to get assistance when health status changes,
• locating and using transportation to a health care facility,
• following through with any new treatment plan.

Three important factors may impede a disabled person's assumption of responsibility for his or her personal health care:

• poorly identified and developed health care values,
• poor motivation and lack of experience in persistence behaviors,
• learning disabilities.

Health Care Values

The Health Belief Model, developed to predict a person's compliance with preventive health behaviors (Hochbaum, 1956), is based on the theory that people weigh the perceived benefits of the behaviors against the perceived barriers when they are deciding whether to comply. Little time and attention is given by parents or professionals to discussing personal values of health care with young people disabled by cerebral palsy or spina bifida, let alone helping them to identify and clarify their values. The young people's lack of clear health care values contributes significantly to their failure to assume responsibility for health behaviors.

One study of self-care in chronic illness identified a direct relationship between self-concept and psychological status and the achievement of self-care (Connelly, 1993). This study also found that informing the person regarding the condition and treatment options was necessary if he or she were to maintain appropriate health care. The most unexpected finding was that a decrease in social support promoted an increase in self-care behaviors. This indicates that the more helpful parents are, the less likely it is the young person will assume total care for himself or herself, because Mom or Dad will always be there to do what they do not. Most parents and health care professionals believe that being supportive helps a person feel equal to a challenge, but the amount and quality of support can be detrimental.

Many parents and professionals assume that young people with a developmental disability have significantly lower self-esteem and poorer self-concepts than their able-bodied peers. Recent studies have found that there is no major difference in self-esteem between people with disabilities and their peers without disabilities (Arnold & Chapman, 1992; King, Shultz, Steel, Gilpin, & Cathers, 1993).

Lowered self-esteem and self-concept may be hindering the achievement of personal health care behaviors in some young people with cerebral palsy or spina bifida, but for many there are other factors contributing to this problem. As noted above, a positive self-concept is needed for a person to accept responsibility for personal health care, and this may be a strength to build upon when working with a young person to meet this goal.

Poor Motivation and Lack of Persistence

Motivation and persistence in working toward a goal has been found to be lower in people with physical disabilities (King et al., 1993). Motivation is based upon the nature of the challenge, the experience of failure that sets the boundary of competence, and the reinforcement of efforts to succeed. A lack of persistence emerges when others are always there to provide assistance. Problems with motivation and persistence are common in the families of children with cerebral palsy and spina bifida.

Few parents allow a child with a developmental disability to experience failure. Many parents explain that there is so much that they cannot do because of the disability that letting the child fail at something else is not fair. The young person with spina bifida or cerebral palsy whose parent is always there to do for them does not experience competence by discovering personal boundaries or learning the consequences of inaction. Incompetence or helplessness learned in childhood contributes to the incompetent or helpless behavior of the adult.

Learning Disabilities

Learning disabilities may also play a tremendous role in the disabled person's assumption of responsibility for personal health care. For example, the learning skills required are the very ones people with spina bifida and hydrocephalus have difficulty with. These young adults may have learning disabilities in perceptual-motor coordination, comprehension, attention, hyperactivity and impulsivity, memory, organizing, sequencing, decision making, and problem solving. These can greatly impede a person's acquisition of personal health care skills. Learning self-care requires the ability to understand treatments; to organize personal time; to remember appointments, treatments, and medications and their times; to remember potential complications and whom to call when problems arise; to be able to solve problems and make decisions about treatments. Without these abilities, personal health care is unattainable. Those who would help young people with spina bifida learn these skills must consider these impediments and incorporate appropriate intervention strategies into the teaching plan.

DENTAL CARE

Dental care for the disabled child needs to begin at the same age it does for other children. Parents need to find dentists who offer accessible chairs that can accommodate easy transfer from a wheelchair, that protect insensate skin from abrasion or breakdown, and that support spastic limbs during a dental procedure. Many people with cerebral palsy and spina bifida have a seizure disorder; medications such as phenytoin (Dilantin) can cause hyperplasia of the gums. Sedatives, barbiturates, and drugs used for muscle control may reduce the flow of saliva, which is needed for protecting the teeth from decay. Ongoing follow-up is essential for preventing tooth decay and chronic gum problems.

It is essential that the developmentally disabled young person learn and maintain dental hygiene. The principles discussed with relation to personal health care skills apply to dental care also. Education should begin early, as should assessment of the youngster's ability to brush and floss the teeth. Adaptive equipment may be needed for adequate brushing to take place. The prevention of gum disease and of tooth abscess, decay, and loss is important to a person's general good health. What is more, healthy teeth and fresh breath contribute to positive social and vocational relationships.

Because latex sensitivity can be a problem for persons with spina bifida, latex precautions need to be taken by any dentist treating the person with this condition.

NUTRITION

People with cerebral palsy and spina bifida have contrasting problems with nutrition. People with cerebral palsy have problems with undernutrition, and those with spina bifida have problems with obesity.

Cerebral Palsy

Undernutrition is a great concern for people with cerebral palsy. Feeding problems can begin in infancy and, if not addressed immediately, may lead to poor mental development later in life. Little guidance is given to mothers on positioning, oral-motor management, and the nutritional content of foods (Reilly & Skuse, 1992). Greater problems with undernutrition can be found in children with quadriplegic cerebral palsy as they grow; they have delayed linear growth that may be related to undernutrition in infancy.

The condition may be corrected with nutritional rehabilitation that includes oral-motor assessment and optimal caloric intake (Stallings, Charney, Davies, & Cronk, 1993a, 1993b). The long-term effects of undernutrition may include compromise in the immune response, respiratory muscle strength, peripheral circulation, and attention span and learning, as well as increased irritability and decreased motivation and energy (Stallings et al., 1993b). These can be minimized with proper intervention.

Intervention includes teaching the person with cerebral palsy about high-calorie foods and making proper food selections, or directing caregivers to make proper food selections for them. Adaptive equipment such as special silverware or personal feeders may help, and the use of speech and occupational therapists can be important factors in achieving adequate nutritional intake.

Spina Bifida

People with spina bifida have a problem with obesity. The percentage of body fat tends to increase with age and decreasing physical activity. Young people with spina bifida tend to be shorter than their peers and heavier than expected for their age (Mita et al., 1993). Providing adequate nutrition for the young person with spina bifida can be a challenge. Balancing caloric intake and activity levels is difficult; the caloric intake sufficient for the level of activity leaves the young person hungry.

Some families never allow the young person with spina bifida to experience hunger. Family members constantly offer food that is not low in fat or calories. This behavior may be motivated by guilt, pity, stress, or the fear of not being a good enough parent or sibling. It can significantly contribute to dependence in the young person and reinforce the assumption that someone will always be there who will know when it is time to eat. Not only does the young person learn never to feel hunger and not to ask for assistance when it's needed, he or she also learns to think of food as a treatment for uncomfortable feelings.

Good nutritional habits can be taught the same way personal health care skills are. Learning disabilities need to be taken into account, and the measurement of portions, information about food groups, and decision making about appropriate food selections all need to be demonstrated. Disabled youngsters should be given opportunities to practice making selections in restaurants and in family gath-erings, and in saying no to well-meaning family and friends. They also need to be encouraged to increase their physical activity, as this is so important in weight reduction and maintenance.

FITNESS

Very few of the young adults or adults with cerebral palsy or spina bifida have participated in physical education, team sports, or other physical activity besides physical therapy. Many fitness clubs and YMCAs are not prepared to educate or support adults with a physical disability in an appropriate fitness program; most do not even have appropriate equipment. And yet, because fitness programs are important in preventing cardiovascular disease, reducing stress, and improving mental outlook, they would be very helpful to those with disabilities.

People with cerebral palsy and spina bifida need to understand the importance of following a fitness program. Armed with an understanding of their own needs, they could begin to explore the potential resources in the community. Assistance may come from physical therapists, local fitness centers or YMCAs, physical education teachers, or rehabilitation centers. It is important for the disabled person to receive guidance so that a program can be developed that will be adequate and yet not cause injury.

CONTINENCE MANAGEMENT

People born with spina bifida or cerebral palsy have a tendency toward constipation. The problem often begins in infancy and may never be properly addressed or treated. With the high correlation between chronic constipation and colon cancer, constipation needs to be addressed as early in life as possible.

Cerebral Palsy

People with cerebral palsy have incontinence, but it is mild. As a result of the incoordination of their anal sphincter or pelvic floor muscles, the external anal sphincter does not relax. This results in incomplete elimination, which contributes to constipation (Agnarsson, Warde, McCarthy, Clayden, & Evans, 1993b). Constipation can also be caused by poor nutrition, low levels of activity, and the lack of fluids and fiber in the diet. A vigorous clean-out program and improvement in the diet will decrease the constipation. Supplements of fiber, stool softeners, or motility agents may also be necessary. In addition, the adoption of comfortable seating with knees and hips flexed and supported may minimize the incoordination of anal sphincter and pelvic floor muscles.

Spina Bifida

The lack of rectal sensation is the key factor in the fecal incontinence of people with spina bifida. Children with high spinal lesions have low internal sphincter pressure and rarely experience rectal sensation. Children with low spinal lesions have increased internal sphincter pressure and experience frequent rectal sensation (Agnarsson, Warde, McCarthy, Clayden, & Evans, 1993a). Constipation, in both cases, can arise from low intake of fluids, low physical activity, lack of fiber in the diet, or as a side effect of medication.

Constipation can lead to impaction with overflow incontinence or simply constant elimination of hard stool with movement. Treating the constipation aggressively is the first step in continence management. Once constipation is dealt with, it is important to develop a regular toileting time and to eliminate stool daily. Additional fiber or the use of suppositories or enemas may be necessary.

Teaching the young person about the continence program-how to evaluate the stool to determine if elimination is adequate, how to make decisions if problems arise, and how to do all this independently-is the next step in continence management. One of the common problems for youngsters with spina bifida is nasal fatigue; even when instruction has been thorough, many children cannot know when they have had an accident even when the odor fills the room.

Parents and professionals often feel that this is an indication that the young person is poorly motivated. However, it may only reflect nasal fatigue resulting from the fact that the problem has become chronic. Assisting the young person to be odor free for several weeks, as well as having them experience odorous bathrooms, will help them change their behavior. Many of these problems can be avoided if the management of continence is introduced at the appropriate age.

CONCLUSION

Professionals should encourage young persons with cerebral palsy or spina bifida and their families to invest as much effort as possible in developing a high level of skill in personal care. Daunting as the task may be, the rewards of success are worth the effort. Not only can the disabled young person thereby achieve a higher general level of physical health and feeling of well-being, but he or she can also attain greater independence in daily life.

RECOMMENDATIONS

• Develop teaching plans for each aspect of the health condition; include treatment options and the consequences of not implementing the treatment options. These plans need to be concrete and appropriate to the age and learning abilities of the individual.
• Develop strategies for implementing these teaching plans that include appropriate settings.
• Develop transportation strategies for rural and city environments and include plans for implementation of those strategies.
• Develop guides for parents on parenting skills that promote independence in a young person with a developmental physical disability.
• Begin dental care and education early; include assessment of the need for adaptive equipment. Educate dentists on the needs of people with developmental disabilities.
  Assess nutritional and oral-motor status early. Educate parents about feeding techniques, appropriate low- and high-calorie foods, and high-fiber foods, as needed.
• Support the inclusion of young people with developmental disabilities in physical education programs in grade school, as experiences in team sports and teamwork are essential to their well-being. Develop low-cost physical fitness programs that can be implemented in a variety of settings so as to increase the likelihood of participation and thereby increase the social contacts.
• Take steps to prevent constipation to avoid continence issues in young adulthood.
• Support research in the relationship of chronic constipation and colon cancer for both cerebral palsy and spina bifida patients.
• Develop multidisciplinary clinics for people with cerebral palsy to help coordinate health care and support for the individual and families. These clinics can include specialists in pediatrics, physiatrics, orthopedics, neurology, speech therapy, occupational therapy, physical therapy, nutrition, social work, psychology, education, as well as a nurse coordinator.
• Develop life-span health care guidelines and use them to assist in the development of legislation for health care reform.
• Support existing multidisciplinary clinics for people with spina bifida and promote the concept of coordinated care for the adult with spina bifida. Assist the clinics to find ways to offer all services identified in the health care guidelines (Rauen, 1990).

REFERENCES

Agnarsson, U., Warde, C., McCarthy, G., Clayden, G. S., & Evans, N. (1993a). Anorectal function of children with neurological problems I: Spina bifida. Developmental Medicine and Child Neurology, 35, 893-902.

Agnarsson, U., Warde, C., McCarthy, G., Clayden, G. S. & Evans, N. (1993b). Anorectal function of children with neurological problems II: Cerebral palsy. Developmental Medicine and Child Neurology, 35, 903-908.

Arnold, P., & Chapman, M. (1992). Self-esteem, aspirations and expectations of adolescents with physical disability. Developmental Medicine and Child Neurology, 34, 97-102.

Connelly, C. (1993). An empirical study of a model of self-care in chronic illness. Clinical Nurse Specialist, 7(5), 247-253.

Hochbaum, G. E. (1956). Why people seek diagnostic x-rays. Public Health Reports, 71, 377-380.

King, G., Shultz, I., Steel, K., Gilpin, M., & Cathers, T. (1993). Self-evaluation and self-concept of adolescents with physical disabilities. American Journal of Occupational Therapy, 47(2), 132-140.

Mita, K., Akataki, K., Itoh, K., Ono, Y., Ishida, N., & Oki, T. (1993). Assessment of obesity of children with spina bifida. Developmental Medicine and Child Neurology, 35, 305-311.

Rauen, K. (Ed.). (1990). Guidelines for spina bifida services throughout life. Washington, D.C.: Spina Bifida Association of America.

Reilly, S., & Skuse, D. (1992). Characteristics and management of feeding problems of young children with cerebral palsy. Developmental Medicine and Child Neurology, 34, 379-388.

Stallings, V. A., Charney, E. B., Davies, J. C., & Cronk, C. E. (1993a). Nutritional status and growth of children with diplegia or hemiplegic cerebral palsy. Developmental Medicine and Child Neurology, 35, 997-1006.

Stallings, V. A., Charney, E. B., Davies, J. C., & Cronk, C. E. (1993b). Nutrition-related growth failure of children with quadriplegic cerebral palsy. Developmental Medicine and Child Neurology, 35, 126-138.

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