For millennia physicians were admonished to obscure the details of patients’ illnesses and poor prognoses. The Hippocratic ethic precludes physicians from including patients in medical decisionmaking. That ethic demanded of doctors that they “[p]erform [their duties] calmly and adroitly, concealing most things from the patient … revealing nothing of the patient's future or present condition.”
Section A: The nature, duration and purpose of study.Your child is invited to participate in a single follow-up visit between the age of six years, four months and seven years, two months of age (school age) for children who were enrolled in the SUPPORT MRI study. As you may recall, that study did an extra brain ultrasound at the time that your child's near-term brain MRI was done for routine care. The purpose was to compare the findings of early and near-term ultrasounds and near-term MRI to determine if one way of imaging gives more useful information than the other. The primary purpose of the study is to examine the children at school age and determine whether near-term MRI is better than ultrasound in predicting developmental outcome. The second purpose is to evaluate the weight, height, body measurements and blood pressure. During the clinic visit, the interviews for you as a parent will take about 1 ½ -2 hours and the time to evaluate your child will take about 3½ hours, including breaks. The interviews with you will be at the same time your child is being tested so the whole visit will last about 3½ hours.SUPPORT school age follow-up, funded by the National Institutes of Health, is being conducted at Women and Infants Hospital and 14 other medical centers across the country. About 500 children and their parents are expected to participate. Sixty-one children are eligible to participate at Women and Infants Hospital.
Section B:The means by which it is conducted. The evaluation will include:
For child:Weight and height will be measured using a standard scale, blood pressure will be obtained with the cuff method and the abdomen will be measured.A small measuring tool will be used to determine the thickness of the right arm, back and abdomen.A detailed neurological examination will be done to look at muscle strength, coordination, balance and ability to walk; a test of number skills and word identification will be conducted; a test of problem solving with words, blocks and pictures will be done; a test evaluating vision problem solving skills and ability to pay attention will be carried out.
For parent:If your child cannot be evaluated by the last two tests, you will be asked to answer questions about the daily living activities of your child in the areas of self-care, mobility, communication, and understanding.In addition, you will be asked to complete questionnaires about your household and your child's overall health, education, and activities away from school.You will be asked questions about your child's medical history, including the recent vision and hearing tests.Section C. The possible benefit or lack of benefit to my child.All results of the tests will be shared with you and forwarded to you or your child's personal physician if requested. You will be reimbursed $25 for your time and your child will receive a small gift such as a book valued at ~ $5.00.
Section D: The potential risks, and discomforts.There are no known risks to participating in the medical/neurological and developmental testing of ...
This essay draws on the Chairman's Report, Committee on Antropology and Education of the National Academy of Education (1977). prepared by Lambros Comitas.
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