Authors: Catherine E. Burns,Beth Richardson,Cpnp Rn Dns Beth Richardson,Margaret Brady
Tags: #Medical, #Health Care Delivery, #Nursing, #Pediatric & Neonatal, #Pediatrics
Many studies have shown that cerebral palsy occurs in 1 in 3,000 live births.
Cultural and Ethnic Factors
Maya’s family is at a disadvantage when facing the prospect of significant health care for their infant girl, as are many immigrant families. They may have different understandings of healthcare conditions as well as limited experience with the U.S. healthcare system as compared with the system for health care in their country of origin. Culture colors one’s views of causation of illness and appropriate treatment regimens. Communication is also difficult, not only because of language differences, but also due to different ways of interacting, expressing one’s feelings and thoughts, and being socially appropriate. Finally, economic resources can create barriers to healthcare services. Thus, utilization
of medical services by immigrant families is often episodic and frequently occurs in settings such as emergency departments.
Extended families play a prominent role in many immigrant cultures. They are an important source of strength, but they may also create conflicts with use of health services and adaptation to U.S. healthcare customs (American Academy of Pediatrics, 1997). You need to take into account these common issues for immigrants and individualize care for this particular family.
How do you plan to treat this child with probable cerebral palsy?
Once a developmental delay has been identified, it is imperative not to adopt a wait-and-see approach. Immediate referral for an initial evaluation and treatment at a multidisciplinary clinic is required. Multidisciplinary clinics use a team approach to provide care for children with multiple medical needs. The team includes developmental pediatricians, orthopedists, physiatrists (rehabilitation), neurologists, nurses, speech pathologists, physical and occupational therapists, and social workers. Services from an ophthalmologist, dentist, geneticist, and registered dietician may be recommended based on the needs of the child. Specialized therapists are often required to educate the family in the use of adaptive equipment such as splints, wheelchairs, walkers, and augmentative communication devises (Blosser & Reider-Demer, 2009; Wilson Jones, Morgan, & Shelton, 2007).
It is essential that the primary care provider coordinate the child’s care with the other members of the healthcare team. The multidisciplinary clinic does not replace the role of the primary care provider in providing well or sick child care.
Therapeutic plan: What needs to be done therapeutically?
Interventions are aimed at increasing functionality, improving capabilities, and sustaining health in terms of fostering locomotion, cognitive development, social interaction, and independence. The goal of CP management is not to cure or to achieve normalcy (Krigger, 2006), but rather, to help maximize and coordinate movement, minimize discomfort and pain, and prevent long-term complications. The effects of CP can often be reduced with early and ongoing treatment. Children younger than 3 years old can greatly benefit from early intervention services, which is a system of services generally coordinated through educational service districts that support infants and toddlers with disabilities and their families. Referrals can be made by the primary care provider or concerned family members. The referral should be initiated while waiting for an appointment for an initial evaluation in a multidisciplinary clinic.
Associated problems with CP include mental retardation, seizures, vision difficulties, limb shortening and scoliosis, feeding difficulties, dental problems, hearing loss, joint problems, and problems with spatial awareness. The primary care provider, as well as the developmental team, should be involved in surveillance activities of the child and schedule routine assessments to manage emerging comorbidities as early as possible.
CP is a lifelong condition for which there is no cure. Treatment is focused on improving capabilities. CP doesn’t always cause profound disabilities. The earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish personally challenging tasks. The type and amount of treatment depends on how many problems the child has and the level of severity. Early intervention services (physical, occupational, speech, and developmental therapy) that focus on mobilization, stretching, relaxation, positioning, and bracing are the primary management techniques for spasticity.
Medication management is also a more recent mainstay of treatment. The goal of drug therapy is to reduce the effects of CP and prevent complications by altering muscle tone and/or abnormal movements. Medications may include anticholinergics (trihexyphenidyl, benztropine), oral diazepam (Valium), baclofen (Lioresal), tizanidine (Zanaflex), and dantrolene (Dantrium). Injections of botulinum toxin (Botox) directly into spastic muscles may provide a temporary reduction in spasticity and thus facilitate physical therapy. If the child has a seizure disorder, anticonvulsants will also be prescribed and monitored by a neurologist (Blosser & Reimer-Demer, 2009).
Baclofen is a medication that is used to lessen spasticity. Intrathecal baclofen pump therapy uses an implantable device to deliver a liquid form of baclofen directly to the cerebrospinal fluid surrounding the spinal cord. By delivering baclofen directly to the intrathecal space, an effective level of the medication can be achieved with much smaller doses than with oral administration, thereby reducing the incidence of adverse effects.
Surgical treatment may include soft tissue release to relieve flexion deformities, tendon transfers to optimize functional use of the extremities, and osteotomies to correct deformities. Surgery may also be used to sever overactivated nerves (called a selective dorsal root rhizotomy).
In Maya’s case, it would be appropriate to make a referral for early intervention services as well as a consult by a developmental pediatrician through a multidisciplinary clinic. You may also make a recommendation for a swallow study to evaluate for safety of oral feedings. Additionally, you prescribe Miralax for constipation and recommend dietary modification including increasing fluids. You suggest bringing a person from the local Sudanese community with more experience in the U.S. healthcare system if the family is uncomfortable going to the multidisciplinary clinic alone.
Valium may be prescribed for leg spasms but should not be used in infants less than 6 months of age or in children who do not have spasmodic episodes.
Further treatment options will be recommended by the multidisciplinary team. Based on parental report, Maya will need her 6-month immunizations today.
Educational plan: What will you do to educate the family about gross motor delays and suspected CP?
Points to make through discussion include:
• Share concerns with parents when you become suspicious of cerebral palsy. Parents may understand and cope better with the eventual diagnosis of cerebral palsy if they feel involved in the diagnostic process from the beginning.
• Explain the possible diagnoses and pathophysiology.
• Learn from the family about their understanding of cerebral palsy or similar conditions in their country, what causes it, and how it is treated. Incorporate their expectations into the plan of care as possible and explain differences in approaches from one country to the other.
• Discuss what to expect from the initial evaluation from early intervention services as well as the developmental pediatrician in the multidisciplinary clinic.
• Explain the reasons behind the recommendation for a swallow study. Discuss causes and symptoms of possible feeding dysfunction.
• Provide informational handouts on newly prescribed medications, such as Miralax and Valium, and discuss directions for administration.
• Provide clear instructions about how to access early intervention services and a developmental multidisciplinary clinic in your area.
• Answer the family’s questions.
When do you want to see this patient back again?
First, you will need to follow up on the results of the swallow study and determine appropriate interventions based on the findings. Second, you will need to follow up on the developmental team evaluation. The length of time it takes to get a new patient into a multidisciplinary clinic varies and may take several months; however, once the patient is seen, the developmental pediatrician and team will dictate a letter to the provider with further recommendations and follow-up. Based on the above information, it would be feasible to have the patient return to your clinic in 3 to 4 weeks to check on weight and feeding issues, or sooner depending on the results of the swallow study. You may need to adjust the level of care based on the needs of the patient and family. Of course, you will need to make appointments for well child visits and to monitor the child’s weight, nutrition, and constipation issues.
Maya’s mother verbalizes an understanding of the information and asks appropriate questions. The grandparents are available to provide emotional support. The mother is concerned about conveying the correct information to her husband and asks if it would be alright for him to call with questions. The family does not express any opinions at this point about the cause and management of children with conditions such as cerebral palsy in their country. You happily agree to meet with him if they have additional questions, knowing that the perceptions of disease causation and treatment vary from culture to culture and should be addressed with the family again.
What long-term issues do you need to be aware of for children with cerebral palsy or similar motor disorders? What complications may arise?