Goals will be set for the child through health care appointments, treatment sessions and education evaluations. Some are short-term, like a change in diet to address a weight concern, or rehabilitation after surgery. Other goals are long-term in nature, providing a strategy for optimizing self-care, independence, lifespan and quality of care. Every child’s circumstances are unique. Goals are not necessarily cookie-cutter, as in one plan fits all, but, generally speaking, some common wide-ranging goals do apply.
The child’s care team will provide parents with health care goals. Each provider may have certain goals that relate to their particular treatment objectives. Some may be short-term goals, while others are long-term. School administrators may concentrate on educational goals, while an orthopedic surgeon may be more interest in mobility goals. Home care providers may concentrate on skill sets required to obtain self-care, independence and quality of life. In general, the top ten long-term goals for an individual with cerebral palsy include:
Top Ten Goals for Managing Cerebral Palsy
- Optimize mobility
- Manage primary conditions
- Control pain
- Prevent and manage complications, associative conditions and co-mitigating factors
- Maximize independence
- Enhance social and peer interactions
- Foster self-care
- Maximize communication
- Maximize learning potential
- Enhance quality-of-life
Life Expectancy Considerations
Most children with cerebral palsy can live long, happy, quality lives. Admittedly, the child’s care may involve more visits to health care practitioners, require therapy, perhaps surgery at some point, or medications. He or she may be evaluated for special education assistance and require assistive technology devices and services. However, the child’s physical impairment, in general, will not limit his or her lifespan. How the symptoms are managed and the severity level of the child’s condition(s) may put the child at risk for diminished expectancy, in some cases. Research indicates properly managing a child’s health status assists in optimizing lifespan.
Cerebral palsy, in itself, is a condition that does not progress. This means the one-time injury to the brain that is responsible for the cerebral palsy will not grow worse or change over time. It results in mobility impairment, sometimes mild, other times more severe. However, other health conditions, not caused by the same injury to the brain, may exist as associate conditions or co-mitigating factors, and those conditions may change over time. Together, they may indicate a more severe and complex overall health status. Associative conditions found commonly with cerebral palsy include cognitive impairment, feeding difficulties, seizure activity, vision impairment, and respiratory distress.
None of these, or any other factors, guarantee that a child will have a shortened life expectancy. There are instances where a child who had cerebral palsy with a number of co-mitigating factors also lived the course of a near-normal life span. Every situation is unique and does not follow a standard expectation.
The majority of children with cerebral palsy are diagnosed within the first three to five years of life. Once diagnosed, the focus is placed on managing the child’s overall health, including his or her physical impairments. For instance, a child with cerebral palsy may have oral motor dysfunction, meaning the facial muscles are impaired and thus, chewing and swallowing are more difficult. This, in itself, is not necessarily life threatening. If the child chokes or aspirates due to the swallowing difficulty they are at greater risk for contracting pneumonia and infections. These conditions are serious and must be managed properly to optimize the child’s health status.
Global Initiatives for Activity Limitations and Participation Restrictions
Inherent in cerebral palsy is physical impairment, which translates into activity limitations and participation restrictions when an individual with impairment encounters cultural, physical, or social barriers. Much is being done globally to eliminate barriers for participation on an equal opportunity basis in situations readily available to the masses. Affordable and accessible assistive technology, communication devices help with mobility, functioning and communication.
Technology backed by government policy initiatives are developed to modify homes, vehicles, building design, public spaces and transportation. Tax credits, credit vouchers, loan programs, public assistance, and government service programs are developed in recognition of the need to help those in need.
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The Life Expectancy Guide