Comprehensive care of patients with sickle cell disease (SCD) has increased lifespan and improved quality of life, making it appropriate for those who provide care to young patients to focus on such issues as education. The school experience has profound affects on daily life during childhood as well as future success. This proposal is a continuation and extension of the ongoing project titled """"""""Program to Improve Educational Outcome in Students with Sickle Cell Disease,"""""""" which was funded in the 1988-93 grant period at this Center. There are five Specific Aims. (1) A variety of interventions will be offered on behalf of students with SCD in grades K through 6. These interventions will include providing educational material on SCD to teachers, school nurses, guidance counsellors and principals of students; twice yearly interviews of parents on school matters; and sending a questionnaire to teachers in October and April to elicit information on the teacher's perception of the child's standing as a student, the child's needs, the teacher's needs, and what services we may provide to both school and student. Peer reaction to the child's having SCD will also be addressed. Telephone consultation or school visits will be offered. The student's school nurse will also receive a questionnaire to determine her needs in relation to the student. It is hypothesized that such interventions offered in the critical early school years will have a positive impact on educational outcome. (2) Information on SCD will be developed for preschool programs and day care centers that enroll our patients. The hypothesis is that information on SCD as it pertains to the young child will allow those in preschool programs to respond confidently and appropriately to the needs of preschool children with SCD. (3) Issues related to employment will be addressed for students with SCD in grades 11 and 12. Workshops on job-related issues and counselling of students in the 11th and 12th grades will be provided on managing the demands of employment. An information booklet for employers will be developed. Also, there will be interaction with guidance counsellors of these patients to encourage them to make an intense effort to place students with SCD in jobs or in programs leading to employment. The hypothesis is that interventions involving the potential employee, employer (through the provision of information), and the guidance counsellor will result in more young people with SCD obtaining jobs after high school and thus achieving an independent life. (4) We will collaborate with other Comprehensive Sickle Cell Centers and sickle cell programs to adapt components of the """"""""Program to Improve Educational Outcome in Students with SCD"""""""" to their needs. The hypothesis is that this will be an economical and efficient way to meet the needs of students with SCD throughout the country. (5) The proposed project will also determine by evaluation which portions of this program could become a permanent pan of patient care services at The Children's Hospital of Philadelphia and determine staff needs to do so.
Showing the most recent 10 out of 140 publications
