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Cerebral palsy: How can you truly help as a healthcare professional?

Cerebral palsy awareness by MediMagic

 

Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. A study by the Centers for Disease Control and Prevention shows the average prevalence of cerebral palsy is 3.3 children per 1,000 live births.

The symptoms of CP differ in type and severity from one person to the next and may even change in an individual over time. Symptoms may vary greatly among individuals, depending on which parts of the brain have been injured. All people with cerebral palsy have problems with movement and posture, and some also have some level of intellectual disability, seizures, and abnormal physical sensations or perceptions, as well as other medical disorders. People with CP also may have impaired vision or hearing, and language, and speech problems.

Cerebral palsy cannot be cured. The World Health Organization's model of health and disease focuses on function and is an important framework to guide modern thinking about treatment for children with cerebral palsy. The goals of management should be to use appropriate combinations of interventions (including developmental, physical, medical, surgical, chemical, and technical modalities) to promote function, to prevent secondary impairments, and, above all, to increase a child's developmental capabilities.

How doctors can help?

Modern services for child health are increasingly being offered within a framework that espouses family-centered service. Parents and healthcare providers can work together in a partnership quite different from the traditional management of a child's rehabilitation program directed by a doctor. These new relationships are predicated on mutual respect, empowered parents, and appropriate sharing of information with which decisions can be made.  

Parents' experiences of family-centered service and their satisfaction with services, as well as the stress they experience in their dealings with their child's treatment center, are strongly correlated. There is also a measurable link between family-centered service and parents' mental health.

Parental values and goals can form an important component of the management program that is created for a child. Goal setting should be a joint venture between parents (and older children) and healthcare providers. This approach has recently been shown to lead to more effective outcomes and to be more efficient in terms of the amount of intervention by professionals. From a developmental perspective, this finding makes sense—parents, and especially children are more likely to follow through with recommendations for treatment that tackle their goals and needs. Some parents may wish professionals to make decisions for them; an active choice by parents to be advised what to do is still a family-centered approach to delivering services.

Cerebral palsy is a long-term condition; parents (and people with cerebral palsy) will have questions and issues to resolve throughout their lives. Continuity in the relationship between parents and trusted counselors is important; professionals such as family doctors and therapists are people who will listen, support, advocate, and be there when challenges arise. Challenges are especially likely at times of transition in the life of the child and family, such as at the time of diagnosis, starting primary or secondary school, leaving school, and when entry to the broader community is being considered. Continuous and consistent service is valued by parents.

New developments in treatment

The array of biomedical and surgical innovations for the treatment of cerebral palsy is ever-expanding, much of it aimed at the reduction of what can at times be disabling spasticity. These include the use of botulinum toxin for temporary relief of spasticity, selective dorsal rhizotomy for more permanent relief, and intrathecal baclofen as a titratable antispasticity agent. Recent work to promote strength training for people with cerebral palsy may provide important new avenues to improve function.

At the same time as innovative treatments are being developed, complementary treatments have emerged. These approaches range from apparently sensible but untested methods of teaching, training, or treating children (such as conductive education based on educational principles, which is as effective as, but not better than, conventional approaches), to interventions based on anecdotal evidence and testimonials but usually no credible research. New treatments are greeted with an expectation of impact that rarely happens.  

One such innovation that has attracted a lot of attention in the past few years is the use of hyperbaric oxygen, an approach that has been clearly shown in a well-designed randomized clinical trial to provide no benefit. Other essentially untested ideas include subthreshold electrical stimulation of muscles, intensive passive muscle manipulation (patterning), and the use of an astronaut suit to promote independent mobility. In each case, the claims about the effectiveness of the treatments are unsupported by solid clinical trial-based research.

As a healthcare professional you should be aware of the new advancements in the treatment of CP. With thorough research, maybe there is some hope to shift norms on how we think and treat CP.

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