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Children who inherit sickle cell disease, primarily African Americans and Hispanics, are at risk for serious medical conditions and require special care both at home and in school. Sickle cell disease is recognized as an "Other Health Impairment" and identified students may be eligible for special education services under the Individuals with Disabilities Education Act (IDEA). This report reviews the description and management of sickle cell disease, including physical areas affected, medical problems associated with the disease, and proper treatment. A case study details a school's failure to accommodate a child with the disease. The educational rights of a student with the disease are examined within the framework of IDEA: goals of early intervention; types of service considerations; identification, location, and evaluation; inclusion; eligibility determination; individualized education program development; and placement safeguards. Implications are listed for educators and administrators in accommodating students with sickle cell disease. These include teacher education about the disease and its impairments; communication with parents; learning environment modifications; due process; student academic and social evaluation; and "search and find" coordination with social agencies, health care providers, and educators. (SAS)

This paper describes the "Sickle Cell Counselor" (SCC), a goal based scenario on permanent display at the Museum of Science and Industry in Chicago. SCC is an exploratory hypermedia simulation program which provides users with a basic understanding of Sickle Cell Anemia. The user of the program plays the role of a genetic counselor, and, while playing this role, can do laboratory tests, calculate risks, ask experts for information, and advise clients about the results. The paper begins with a brief description of the SCC which emphasizes the design features most relevant to the patterns of interaction that emerged. These include the design of the task presented to the user, the organization of the database, and guidance given to the user by the system. Three evaluations of SCC which were conducted with museum users in order to better understand how they interacted with the program, are also presented. These studies examined patterns of usage, the cognitive gain of the program, and the effects the counseling task had on learning. Discussions of how particular features of the program affected the interactions of the users and their implications for the design of computer-based learning environments conclude the paper. (Contains 17 references.) (JLB)

A hypermedia simulation, Sickle Cell Counselor, has been developed to anchor instruction for museum visitors using the task of advising couples about the decision to have children when there is a substantial genetic risk of sickle cell disease. A visitor can perform simulated laboratory tests and ask questions via interactive video. The anchored instruction model is closely related to cognitive apprenticeship theory. Patterns of interaction between the user, simulating the role of a genetic counselor, and the program are illustrated through an annotated example. The genetic counseling role makes the Sickle Cell Counselor a compelling program, but the human interest facet is really just a motivational device. The program supports the acquisition of the target knowledge well. The user is supported with knowledge from an experts screen, from learner-initiated coaching, and from implicit task guidance. An evaluation with adults at a community church (21 pretests and 10 posttests) suggests substantial gains in knowledge about sickle cell disease, as well as confidence in the material learned. Ten figures present evaluation findings. (Contains 10 references.) (SLD)

This article discusses key components relevant to providing appropriate services for students with health care needs, reviews common health conditions in school-aged children and youth and recommended medical management, and describes school health care needs and related accommodations that may be made for students with each condition. (Contains references.) (CR)

The science of genetics is perceived to offer hope that a large number of the 3,000 inherited diseases which afflict human beings may be prevented or controlled. This document addresses some of the advances that have been made in this field. It includes an introduction and sections on: "The Beginning of Human Genetics"; "Unlocking the Secrets of DNA"; "The Development of Recombinant DNA Techniques"; "A New Understanding of Sickle-Cell Disease and Other Blood Disorders"; "How to Use DNA Fragments to Detect a Disease"; "How DNA Probes Find Their Match"; "Stalking the Most Elusive Genes"; "The Rapid Growth of Gene Mapping"; "Zeroing In on Cancer Genes"; "A Bank of Living Human Cells"; "GenBank: A National Database of Nucleic Acid Sequences"; and "The Promise of Genetic Therapy." A glossary of terms is also included. (TW)

Reviews the existing literature on psychosocial interventions for children and adolescents with sickle cell disease and suggests some developmentally appropriate modifications for approaches designed for adults. Particular attention is paid to nonpharmacological pain management strategies that include coping skill training, educational programs, self-help and support groups, and family counseling. (SLD)

Compared measures of peer relationships and emotional well-being of children with sickle cell disease (SCD) to those of same-classroom peers. Found that, compared to nondiseased subjects, SCD females were perceived as less sociable and less well accepted; SCD males were perceived as less aggressive. No other differences were identified for emotional well-being or psychological adjustment. (HTH)

Examined adjustment problems for children and adolescents with sickle cell anemia (SCA). Parents provided information on social, emotional, academic, and family adjustment of 327 children with SCA. Over 25% of children had emotional adjustment problems in form of internalizing symptoms (anxiety and depression); at least 20% had problems related to social functioning and academic performance. (Author/NB)

Describes investigation utilizing sickle cell disease subjects from a stress and coping project. Found little stability in classification of individuals' adjustment, low congruence in behavior problem patterns and diagnoses, and less stability in adjustment by child report than mother report. Suggests children's coping strategies are intervention target for enhancing adjustment. (Author/CRR)

Reports on development of adult sickle cell support group and provides description of psychosocial factors most prevalent in patients' lives (anxiety about death, disruption of social support network, disability, dependence on pain medication, conflicts with health care providers). Notes that support group enhanced participants' knowledge about disease, improved physician-patient relationship, and helped resolve psychosocial adjustment problems. (Author/NB)

Found that 64% of 50 children aged 7-12 years with sickle cell disease had parent-reported behavior problem. Internalizing types of behavior problems and diagnoses were most frequent. Maternal anxiety accounted for 16-33% of variance in mother-reported internalizing and externalizing behavior problems, respectively, and child pain-coping strategies accounted for 21% of variance in child-reported adjustment problems. (Author/NB)

Reports a study that investigated knowledge level about sickle cell disease among students at a predominantly black university. Survey results indicated the students most directly concerned did not well understand the basic facts about sickle cell disease. Most students could not recall whether they had ever been tested. (SM)

A 1980 survey of sickle cell screening facilities in Maryland, found that approximately 52,000 persons were screened, 13,000 without informed consent. Many facilities also failed to provide education and counseling. Units dedicated entirely to screening were most compliant with State regulations. (Author/CJM)