Providing Appropriate Nursing Care for the Developmentally Disabled Child
Submitted by Jennifer Couch, RN
Developmental disabilities are birth defects related to a problem with how body parts and/or body systems work. These defects may affect multiple body parts and/or systems. The disability may be considered a functional disability as defined by the World Health Organization as any long-term limitation in activity resulting from a condition or health problem. There are four types of disability included in this article including nervous system disability, sensory-related disability, metabolic disorders and degenerative disorders.
Nervous system disabilities are defects that affect the function of the brain, spinal cord and nervous system. These disabilities can cause problems such as behavioral disorders, movement disorders, and speech or language difficulties.
Sensory-related disabilities are usually found in some form in all children with developmental disabilities and affect one or more of the senses. These disabilities can cause mild to severe handicaps in delayed children. Sensory Processing Disorder may exist on its own without further disability. Three examples of sensory-related disability are deafness and cataracts of the eyes due to congenital rubella, trouble observing spatial relationships as seen in children with William’s syndrome and oversensitivity to loud noises as seen in children with Fragile X Syndrome or ASD. Children with Sensory Processing Disorder may benefit from occupational therapy, listening therapy which is a therapeutic program to improve the neurophysiological foundation for integrating sensory input by using specific sound frequencies and patterns to stimulate the brain or a combination of the two. Complementary therapies such as the Wilbarger Protocol which utilizes a “brushing” technique may be used as well.
Metabolic disorders are functional birth defects that affect a person’s metabolism therefore affecting the way the body processes the materials needed to function. These disorders can cause mild to severe developmental disabilities. Two examples of metabolic disorders are Phenylketonuria (PKU), which is a genetic disorder that is characterized by an inability of the body to utilize the essential amino acid phenylalanine and hypothyroidism, which is a condition characterized by a thyroid gland that doesn’t produce enough hormone. Many degenerative disorders can be caused by untreated metabolic disorders. Degenerative disorders are diagnosed in children who appear normal at birth but lose abilities or functions due to a condition. Some degenerative disorders can be prevented with proper treatment of the underlying condition.
Cerebral Palsy is characterized by non-progressive syndromes that impair voluntary movement or posture. CP results from prenatal development malformations or perinatal or postnatal CNS damage. CP is typically diagnosed before age five.
Treatments for Developmental Disabilities:
- Most children survive well into adulthood with early intervention and proper treatment.
- Speech, Occupational and Physical therapy are important to most developmentally delayed children.
- Some children may require special diets such as children with ASD or PKU.
- Some children may require treatment for medical conditions that are common to their specific delay such as heart surgery for children with Down’s Syndrome.
- Individualized treatment plans incorporating therapy and medical treatment are essential due to the varying symptoms and severity of delay seen from individual to individual.
- Early assessment, diagnosis and intervention is the most important aspect of treatment
When caring for the developmentally disabled child, assessment is the key. Ask the parents about the child’s diagnosis and issues the child has.
- Does the child require a special diet?
- Does the child have sensory-related disabilities that may go along with their diagnosis?
- Does the child have medical issues pertaining to their diagnosis?
Is the child non-verbal, non-ambulatory, dysphagic, etc?
- Does the child have emotional disturbances related to the diagnosis that will affect care?
- What is the child’s typical daily home routine (shower only at night, meals at specific times, favorite TV shows)?
- Is there anything I can get your child to make their stay more comfortable such as favorite foods, DVDs or toys (if available)?
The next most important factor in the nursing care of the developmentally disabled child is being caring. If the child has a sensitivity to light, sound, etc., be aware of how your actions may affect him or her. Be aware of how you speak to the child and be sure you speak to them in a way they can understand. Do not touch the child without warning and never perform a treatment or procedure without explaining all the steps. Always ask the parents if there is a better way to perform necessary tasks. This will likely not be the first time the child has received medical care and the parents usually have an idea of how to best proceed with treatment. Use distraction if possible during procedures and treatments.
Remember… if you do not know anything about your patient’s particular disorder, it is your responsibility to educate yourself. The parents are going to be your best resource for information on how to care for their child. Parent education is going to be a crucial component of care, especially if the child has been diagnosed with a new condition. Possibly the most important thing to remember is the fact that developmentally disabled children require compassion during all aspects of their care.