Magazine article The Exceptional Parent

Research in Cerebral Palsy

Magazine article The Exceptional Parent

Research in Cerebral Palsy

Article excerpt

When your child was first diagnosed with cerebral palsy, you were faced with a daunting task: dealing with a life-altering revelation and trying to get more information about the disorder. You began your "career of research" into cerebral palsy. What is cerebral palsy? What caused it? What does the future hold for my child? What treatments are available? What's new? What works? What is more promotion than possibility?

How did you get information? Your physician may have given you some background information--although usually not enough. Other parents told you about their experiences. You went to libraries and found little information. Your state and local agencies gave you some more facts. You read Exceptional Parent magazine. Currently, the Interact may have provided more information than you can digest. How do you know if what you hear, read, or download from the Web is up-to-date, unbiased, and/or true? For consumers, parents, and professionals, this is the daily challenge.

What is research?

Research is the systematic observation of a particular subject such as cerebral palsy. There are two different types of research design: descriptive/exploratory and experimental. Descriptive/exporatory design poses questions that shine a light on a subject in order to promote more precise study later on. In experimental design, a hypothesis (question) is derived from a theory that allows researchers to test predictions.

The purpose of descriptive/exploratory research is to identify a question that would merit more study through experimental research. It looks at a range of possibilities that might, for example, help modify the effects of a disorder such as spasticity in cerebral palsy. The research project might study physician, therapist, patient, and family records and recollections to identify factors that seem to have had a significant impact and that could be studied effectively through experimental research. For example, intensive physical therapy at an early age may be seen as a significant factor in enabling a child to walk as he gets older.

An experimental research project picks up where descriptive/exploratory leaves off. It requires a number of basics:

* The variables studied must have valid and reliable measures. Researchers must be able to document that because a precise amount of medication or treatment was used, a specific result occured.

* The creation of at least two groups--a treatment group and a control or placebo group in which nothing is done. Having these two groups is important for evaluating the effect of an intervention. Control groups are difficult to obtain in cerebral palsy since two children are rarely alike. To eliminate bias in the study, the participants must be assigned randomly to one of the groups. This is one of the most difficult parts of designing a research study: few parents want their child in a control group.

* Results must be reproduceable. Other research teams must be able to recreate the results of the same experiment in order to show it is truely effective.

Research may be retrospective or prospective. Retrospective studies look back in time at a group of children with cerebral palsy undergoing therapy, for example. The difficulty with retrospective research is that it is dependent on memory--which, especially in emotional situations, can be distorted. This does not mean it is not valuable--only difficult. Prospective projects start before the treatment or study of behavior begins in order to establish a benchmark for the research. For example, two groups of children--one of which will have a surgical procedure, the other only intensive physical therapy--will be thoroughly ex-amined before treatment. Or, for a study of behaviors, researchers will ex-amine participants' health and habits before the project begans. With a baseline established, investigators will be able to draw conclusions about why the out-come of the research occurred. …

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