NUTRITIONAL CONSIDERATIONS
The number of children and adolescents facing life with chronic illness and disability is increasing. The reasons for this increase are multifaceted. Individuals have a longer lifespan because of health promotion measures and illness prevention and interventions. Advanced medical interventions provide opportunities to maintain health and to sustain life.
Many conditions require therapeutic interventions to prevent malnutrition and promote independent eating ability. Some interventions require adjustment to difficult feeding problems. Conditions such as phenylketonuria or celiac disease require therapeutic diets to control symptoms or prevent physiologic harm.
Nutritional intervention for the child and family requires patience, flexibility, and sensitivity to individual needs. An interdisciplinary approach provides the essential assistance and education for parents managing these problems. Refer the family to a dietitian for explanation of nutritional needs of the specific disability. An occupational therapist can assist the family with specially designed feeding instruments, which will facilitate the child?s independence or assist the family with feeding the child.
ADDITIONAL CONCERNS IN CARING FOR CHILDREN
The nurse needs to be knowledgeable about the child?s condition and complications that could occur. Recognition and support of the family?s ability to care for the child, coupled with healthcare teaching when the need arises, increases family members? self-esteem. When the child is admitted to the hospital, ask the family their typical way of carrying out a procedure.
Family-centered care is very important for the family of a child with special needs. The parents? and child?s adjustment to the disability will depend on the seriousness of the disability, whether or not the disability is noticeable to others, and the availability of a network of resources and support people. The family?s response may include overprotectiveness, rejection, denial, or acceptance.
The child?s response is strongly influenced by the response of the family, friends, and peers. The child may encounter social exclusion, discrimination, or physical barriers, which make adjustment more difficult. Coping ability is influenced by the child?s temperament, self-concept, and developmental stage.
Observe and document the developmental stage, functional level of the child, and parent-child interactions. Assist the family to set realistic short-term goals. Discourage overprotectiveness, which may impede the child?s physical and psychosocial development.
Encourage stimulating activities appropriate to the child?s developmental stage. Help the family and child to develop better coping strategies. Collaborate with them to develop a manageable plan of care that prevents discouragement and exhaustion. Emphasize the importance of regular follow-up care with the interdisciplinary team to maintain health and to monitor and manage the disease. Familiarize yourself with resources available for the special needs of the child and family.
Disabled or chronically ill children often miss many school days. Federal laws stipulate that education must be provided for children with special needs. Homebound education may be necessary during acute illness episodes.
Encourage families to allow children with special needs to participate in appropriate extracurricular activities according to their developmental level and physical limitations. Assign household chores and responsibilities, to develop a sense of accomplishment. Set firm but reasonable limits on behavior.
PEDIATRIC REHABILITATION
Young people who have permanent disabilities must adjust to them while achieving normal developmental tasks. Accomplishing developmental tasks without a physical or emotional disorder is challenging. The individual with specific physical and emotional disorders has different and additional challenges (see In Practice: Nursing Care Guidelines 74-1). Rehabilitation may require specifically trained therapists who work with the client and his or her family. Training may occur in a specialized setting as well as in the home environment.
Behavior Modification
Behavior modification is commonly used to develop skills related to activities of daily living and speech development. Behavior modification involves positive reinforcement, which encourages a child to repeat desired behavior. The child may need to repeat these skills many times before he or she learns them. If the child is intellectually impaired, make the task as simple as possible. Praise the child when he or she does a task correctly; do not use punishment.
IN PRACTICE :NURSING CARE GUIDELINES 74-1
WORKING WITH A CHILD OR ADOLESCENT WITH SPECIAL NEEDS
???? Emphasize the positive; stress what the person can do. Reinforce success; praise the person for each accomplishment, no matter how small.
???? Encourage the person to be as independent as possible. Encourage self-care. Help the person by showing how to do things. Reinforce by repeating instructions and asking for return-demonstrations.
???? Encourage development of positive self-esteem. The person may lack role models with similar disabilities, making it more difficult to develop a positive self-image. Encourage participation in support groups.
???? Find a balance between the need for assistance and achieving independence in activities of daily living (ADL). Encourage family caregivers not to be overprotective.
???? Emphasize ?normal.? Encourage the person to do all the ?normal? things others do, for instance, music, sports, academic success. Encourage participation in many activities for a well-rounded life. Often, the person can do more than he or she may think.
???? Encourage normal social contacts. The person should participate in peer activities.
???? Encourage regular school attendance, when possible. Schools are obligated to provide assistance, as needed. Encourage family caregivers to discuss the person?s problem and limitations with teachers, the school nurse, counselors, or others in close contact with the child or adolescent.
???? Offer emotional support. The person will get discouraged. Listen to problems. Allow for client self-expression.
???? Observe for depression. A physical or emotional disorder may threaten future plans, resulting in depression.
???? Consider the person?s family. Involve them in planning and activities. Especially try to involve other siblings who might feel neglected.
Usually the intellectually impaired child is unable to generalize from one situation to the next. You must teach each specific skill, task, or behavior. The child needs a routine and needs to do things the same way each time.
Activities of Daily Living
Some children with physical, learning, or intellectual impairments have great difficulty achieving success in the basic tasks of activities of daily living. There are specific techniques for teaching dressing skills, feeding skills, toilet training, and other ADL. Feeding them and teaching them to eat takes patience. Teaching should occur in a quiet place with few distractions. The site for learning should be neat and kept in the same order at all times. Patience is the most important factor in training the intellectually impaired child. See In Practice: Nursing Care Guidelines 74-2 for helpful pointers.
Speech Development
Be patient and encourage children with speech difficulties to say each word slowly and clearly. Do not use baby talk.
IN PRACTICE :NURSING CARE GUIDELINES 74-2
FEEDING THE INTELLECTUALLY IMPAIRED CHILD
???? Ensure correct positioning, preferably in a sitting position. Flex the child?s head slightly You may need to use a pediatric safety device. Rationale: This position helps to close the larynx against the epiglottis.
???? Teach the child to suck by massaging the cheeks or by using a special nipple. A nipple or bottle is appropriate for the infant and young toddler; as the child becomes older, use a cup or glass. A straw may be helpful. Encourage blowing, too. Rationale: These actions build up muscles used in speech.
???? Assist the person to learn to drink from a cup by using sucking movements.
???? Teach or remind the child to chew. If necessary manipulate the jaw up and down.
???? Remind the child to swallow. Rationale: Prevent aspiration.
???? Place food on the side of the mouth, not in the center. Do not rush. Rationale: Prevent choking.
???? Encourage the child to use the lips to remove the food from the spoon, to bite off pieces of food, and to move food around in the mouth with the tongue. Rationale: These exercises also prepare the muscles for speech.
???? Keep the eating atmosphere pleasant. If possible, have several people eat together Provide role models.
???? Allow the person to do as much self-feeding as possible. Keep the table neat and clean.
Encourage children to listen. Even if they cannot answer, be sure to talk to them. Explain to children what you are doing, and try to anticipate their questions. Read to children, and encourage them to look at pictures. Children with speech difficulties may be able to communicate by using specially designed computers.
LONG-TERM CARE
Children with long-term disabilities or degenerative disorders may go to the hospital for extended periods or be readmitted often. These children need special nursing care and attention.
Establish a basic sense of trust. Ideally, a child who returns frequently to a facility will have the same nurse. These children need to learn self-care as soon as possible; reinforce teaching often. Some facilities give children special responsibilities to increase feelings of self-worth and usefulness.
Consider individual needs and limits. Plan care carefully according to a child?s physical and emotional needs and the medical treatment plan. Consider age, sex, developmental level, family environment, medical problems, and prognosis. Children must have a sense of security; therefore, their basic needs are important.
Involve the family. Do not forget that children in long-term care are still members of a family. Make provisions to include members of the family when making care-giving decisions. Be considerate of caregivers, siblings, and other family members. Also, be aware that long-term hospitalization can drain a family?s emotional and financial resources.
Involve the children in their own care. Allow children to do as much as possible, and assist with other needs without embarrassing them. Long-term illness usually means treatments and diagnostic tests that can lead to physical discomfort and apprehension. Make an effort to minimize fears by allowing caregivers and children to talk about their concerns. Answer questions simply and truthfully. Focus on what children can do during a painful procedure. Explain treatments just before they are done. Encourage socialization. Children need to maintain social contacts with friends, classmates, and relatives as much as possible. Children with long-term illnesses can become overly dependent, and caregivers may be overprotective. Aim for a careful balance between encouraging independence and expecting too much.
Home Care
For the child with special needs to be cared for at home, the medical condition must be stable, the family must be motivated and have the resources, and professionals must be available in the community to provide essential equipment, education, and support.
A review of family strengths and weaknesses is essential. Identification of potential problem areas can assist the nurse in providing physical and emotional support as well as referrals to appropriate resources and agencies. Provide the family with written home care instructions and videotapes of step-by-step procedures for their review, as needed. More than one caregiver should receive instructions on all aspects of the child?s care. Return-demonstrations are the best way to evaluate the caregiver?s competency with procedures and use of equipment.
Use community resources. Use social service agencies in the community to help meet these children?s educational, medical, recreational, and financial needs. Public health nursing referrals are helpful. Voluntary associations have special interests in various disorders; often children and caregivers will find talking with other families who have faced similar situations helpful.
Keep up with school. When children are receiving home care, family caregivers should plan uninterrupted time for schoolwork. School-age children and adolescents must have educational needs included in the plan of care. School districts usually provide teachers for children who are in long-term care.
Provide respite care. More children with long-term care problems are being cared for at home. Enormous demands are placed on the family?s time, energy, and finances. Respite care for the caregivers is important.
Consider crisis management resources. Consider the abilities of a family to manage a situational crisis. Support the family?s coping mechanisms and promote their optimal functioning.
Key Concept
???? Encourage the young person with a disability to participate in educational, social, and recreational activities.
???? Keep the lines of communication open by developing active listening skills. Observe verbal and nonverbal cues for potential problems.
???? Working with people with long-term disorders and their families offers you the opportunity to use all your technical skills and interpersonal nursing skills.
KEY POINTS
???? A congenital disorder is one that is present at birth. A genetic disorder results from an abnormal gene. A congenitally acquired disorder may result from fetal exposure to teratogens, infections, or trauma.
???? Maternal use of alcohol or drugs and other teratogens can result in physical or mental abnormalities in a newborn.
???? FASD/fAs is prevented by maternal abstinence of alcohol during pregnancy.
???? Intellectual disabilities are based on IQ, ability to function, and ability to adapt and learn new skills.
???? Children with neuromuscular disabilities often have motor, sensory, and developmental delays, and feeding problems. A multidisciplinary approach is essential.
???? Down syndrome and fragile X syndrome are chromosomal abnormalities with resulting physical and intellectual impairment.
???? Developmental and learning disabilities generally require individualized plans for education.
???? Children with ADHD have difficulty with attention span, impulsivity, and hyperactivity.
???? Children with Tourette syndrome may have involuntary movement and uncontrolled vocalizations called tics.
???? Autism is a complex disorder characterized by intellectual, social, and communication deficits.
???? Plumbism can be acute, chronic, or fatal. Lead sources in the home and environment are the major causes.
???? Cerebral palsy may be a result of prenatal infections, fetal hypoxia, birth trauma, meningitis, or head trauma.
???? Duchenne muscular dystrophy is an inherited degenerative disorder, which eventually is fatal.
???? Visual and hearing impairment in children may be the result of genetic or congenitally acquired problems as a fetus.
???? Childhood mental illness may be seen as depression, suicidal ideation, and schizophrenia.
???? Substance abuse takes many forms, with permanent damage to the CNS being common.
???? Families need support and encouragement when managing the care of a child with special needs.
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