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Taking care of a student with sickle cell disease not only involves managing the physical complications, but also includes resolving the psychological and social issues that are important to the student's well being and continued development.
African Americans may feel singled out by a hereditary disease that affects them with more frequency than any hereditary disorder found in other racial and ethnic groups. When sickle cell disease is referred to as a Black disease, it can affect the Black populations' feelings, collectively and individually, of self-esteem or self-worth that can lead to a decrease in racial pride. Actually, sickle cell disease affects people of East Indian and Mediterranean descent also.
Lacking adequate information about the inheritance of the disease, parents may have feelings of helplessness and guilt that can often lead them to blame each other for the child's illness. Frequent crises may cause the parents to feel that they are being punished for something they did wrong. Because sickle cell disease is inherited, parents might feel a need to keep it a secret. Care and treatment may often be ignored.
- PHYSICAL ACTIVITY
- Children should take an active part in any physical activity that interests them. Let them set their own pace.
- Aerobic exercises like running, swimming, walking and biking are recommended. Just remember, the body will lose more fluid during exercise, so it is important to frequently replenish these fluids.
- Swimming in very cold water may trigger a painful crisis in some children. Therefore, check the water temperature before the child goes swimming.
- NUTRITION AND DIET
The student should:
- Eat a well balanced diet for the student's age group. There is no special diet for children with sickle cell disease.
- Drink plenty of fluids, such as water and juice, to avoid dehydration (the loss of too much water).
- Drink extra fluids during increased physical activity, when temperatures are warm, and during periods when the child has a fever.
- Avoid caffeine drinks like regular coffee and colas. Caffeine can cause the blood vessels to constrict.
- During a crisis, it is more important to drink fluids than it is to eat.
- Take the vitamin folic acid daily, if advised by his/her physician.
- SPECIAL CARE IN SCHOOL SETTING
- Emphasize the child's assets and strengths; give positive reinforcements with praise and attention.
- Assess hobbies and pastimes to encourage socialization and to avoid boredom.
- Assist the child to retain roles and tasks as much as possible, within existing limitations.
- Educate the school community about the hemoglobinopathies.
School-Aged Child
Children with sickle cell disease usually feel different. They are expected to develop along the same lines as children without the disease. However, some complications related to sickle cell disease influence their development. These factors may indicate to the child that he/she is different because of the sickle cell disease. The child may:
- Miss more school.
- Not be allowed to do things other children do because of physical limitations or overprotective parents and teachers.
- Need to go to the bathroom more frequently because they are required to drink more liquids especially during periods of increased exercise and heat.
- Not be able to spend the night at a friend's house because of bedwetting.
- Be treated differently by parents, siblings, teachers and others because "they're sick".
- May be small for their age. As they become adults, most children with sickle cell disease reach full size.
- Have delayed sexual maturation.
- SPECIAL CARE IN SCHOOL SETTING
- Help the child develop a sense of self worth. This teaches independent behavior (caring for self).
- Teach the child coping skills. Giving the child control, this helps the child to teach others.
- Discourage the child from blaming anyone for his/her disease.
- To increase self-esteem, emphasize those things about the child that he/she interprets as positive, not negative.
- Emphasize developing abilities rather than concentrating on the disadvantages of the disabilities.
Adolescence
Adolescence is a contradictory period of time during which young people are striving for independence, but are encouraged to remain dependent while completing their formal education. Some teens with sickle cell disease are afraid to grow up. Frequent absence from school may have held the teen back from normal grade advancement creating a longer period of dependence. Hospitalization further reduces the adolescent's independence, with their care being directed by adults and not by themselves. Also, during crises, regression to a more dependent behavior encourages those around him/her to treat the young adult like a child. This interaction heightens the child/adult contradiction, the conflict between dependency and independence. Teens with sickle cell disease may have a strong need to prove that they fit in.
- SPECIAL CARE IN SCHOOL SETTING
- Attempt to identify the source of the dependency:
- Ongoing lifelong style of coping; or
- Environmentally stimulated: has the school and/or family removed so much of the child's control that he/she has turned to dependency as a means of coping?
- Risk taking behavior.
- Do not criticize or openly acknowledge the dependent behavior.
- After careful explanation to the adolescent, set limits on the amount and type of dependent behavior (alcohol use cigarettes, noncompliance) that will be tolerated by the staff.
- Praise any independent behavior.
- Listen to what the teen has to say.
- Expect the best.
Growth and Development
Children with sickle cell disease may experience a delay with growth and development as compared to their peers. They may be shorter than their peers and puberty may be severely delayed. Self-esteem can be severely undermined by the teasing of classmates and/or by not being allowed to participate in group activities. Self-worth is promoted via peer acceptance. Adults may treat the child as if he/she is younger because of his/her smaller size.
Consequently, these children may either become very aggressive to compensate for their small size; or choose to associate with others like themselves, or with those they consider similar to themselves, to distance themselves from the teasing of others. Small size and delayed maturation are not the only physical concerns of the young adult with sickle cell disease. Many suffer from other physical characteristics that are a source of embarrassment such as: jaundice, dental deformities, and surgical scars.
- SPECIAL CARE IN SCHOOL SETTING
- Provide avenues for the adolescent to express feelings. Teach assertiveness.
- Be a good listener and accept what the adolescent verbalizes.
- Assist the adolescent to understand his/her own ways of coping.
- If the adolescent expresses anger or hostile feelings, remember not to take it personally. The adolescent may be handling his/her feelings the only way possible.
- Give positive reinforcement for the adolescent's efforts to cope.
Depression
Adolescence is a period of transition from childhood to adulthood. Thoughts of the future may be present. Planning for the future may be stressful. The young adult with sickle cell disease may experience particular feelings of fear and anxiety, or be depressed by the prospect of being ill for the rest of his life or having a potentially fatal disease. Depression may affect the young adult's ability to manage his/her disease and personal life. He/she may become dependent on drugs, develop somatic complaints, or seek miracle cures. This may impair his/her ability to concentrate and cause him/her to do poorly socially and academically.
- SPECIAL CARE IN THE SCHOOL SETTING
- Focus on the young adult's feelings. Allow him/her to ventilate in ways that seem comfortable to him/her
- Help explore ways to cope with feelings. Talk about alternate ways to express them
- Give positive reinforcement to reality and realistic expectations
- Maintain hope and share it with the young adult
- Provide positive role models
- Provide opportunities for vocational planning
Noncompliance
Some young adults who have had frequent episodes of crises during childhood may feel that they are now less vulnerable to illness. Others may experience an increase in painful crises as they mature into adolescence and adulthood. The reason for this increase is not known, but it can result in fear on the part of the young adult and his/her parents. As they enter adolescence, they may not report obvious signs and symptoms of illness and instead choose to "wait and see if it goes away". They may become reluctant to assume responsibility for their own health care. The young adult wants to lead a "normal" life.
- SPECIAL CARE IN SCHOOL SETTING
- Encourage the young adult to define and discuss his/her own needs. Refrain from forcing treatments.
- Attempt to introduce realities slowly by beginning with the least threatening part of the reality.
- Praise the young adult's efforts to recognize reality.
- Share concerns about noncompliance with the young adult's parents.
- Give control and responsibility to the young adult.
Education
Education must begin with parents, teachers, and the community. Children should be taught that knowledge is power, and with that power attitudes can be changed. To erase the stigma often and mistakenly associated with the disease, emphasis should be placed on building a positive self-esteem. The children of today who will become the adults of tomorrow can break the chain of silence and shame that has surrounded sickle cell disease.
Classification of Chronically Ill
Because of the disease and its treatment, it may be necessary for the child to be absent from school or be unable to concentrate on academic subjects. The child may fall behind at school and possibly fail the grade. This can be frustrating for the child. He may contemplate not trying in school because he feels that he will just fall behind again or fail. Being classified as chronically ill can help children to keep up with their class, since tutoring will be provided when appropriate. The school staff, the child study team, the child, and the family, the health care provider and/or treatment center need to cooperate and collaborate in resolving these problems.
Sex Education
We must be sensitive to the developing sexuality of young adults. Sex education and methods of birth control should be compatible with the disease. When young women choose to conceive, they need to know that with close medical supervision, they can have a healthy pregnancy with a successful outcome.
- SPECIAL CARE IN SCHOOL SETTING
- Send home schoolwork for the child to do when he is feeling better, and suggest a tutor or instruction for the homebound as viable alternatives.
- Teach the student to learn his/her own tolerance. Limitations can sometimes undermine the student's ability to develop a positive self-image. This especially refers to the tendency for these children to tire easily. Encourage all children to participate to their own level of tolerance in all activities.
- Schools must develop ways to keep the child involved with peers, while adapting to his needs (i.e. adaptive physical education, individual education plan, etc.).
Genetic Counseling
We need to emphasize the need for genetic counseling. The young adult should be aware that he/she could produce children who do not have sickle cell disease but will always have the trait, at a minimum. Genetic counseling should be provided prior to the person becoming sexually active and reinforced periodically.
Vocation Counseling
All young adults should be encouraged to set career goals. Guidance is especially important for those with sickle cell disease because there are certain careers that are not open to them. Military careers and jobs requiring heavy manual labor are not an option for persons with sickle cell disease. With proper vocational and professional counseling, an exciting and rewarding career can be realized. Role models are important, and can demonstrate to the young adult that there are people with physical limitations who have succeeded.
- SPECIAL CARE IN SCHOOL SETTING
- Urge teen to stay in school and help him/her keep up his drive to do his/her best.
- Help teen focus on what he/she can do, not what he/she can't do.
- Some colleges have programs to help students with special needs.
Support Groups
Support groups are essential. Participation in support groups assist the student and families to address the following issues:
- guilt
- balancing need to over-indulge
- shame - breaking silence
- not being alone
- learning how others coped
- learning effective coping skills for greater control
- being achievement oriented
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Family Health Services
