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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.

Displaying records 1 through 2 (2 total).

Sherman B. n.d.. Home-Based Support Services for Chronically Ill Children and Their Families [Final report]. Albany, NY: New York State Department of Health, 35 pp.

Annotation: This project sought to demonstrate that a system of reimbursable, cost-effective, home-based support services can be implemented for families with chronically ill children. The project objectives were to facilitate the provision of home-based care for chronically ill children through the following activities: (1) Developing a regional network of medically skilled respite providers; (2) establishing self-help mutual support groups for chronically ill children and their parents and siblings; (3) training professionals, paraprofessionals, and volunteers; and (4) disseminating project findings and recommendations. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-158699.

Keywords: Arthritis, Asthma, Bronchopulmonary Dysplasia, Chronic illnesses and disabilities, Congenital Heart Disease, Cystic Fibrosis, Families, Feeding Disorders, Hemophilia, Home-Based Health Care, Kidney Disease, Leukemia, Low income groups, Muscular Dystrophy, Nurses, Respiratory Technologies, Respite Care, Sick Kids (Need) Involved People (SKIP), Sickle Cell Disease, Support Groups, Tay-Sachs Disease, Ventilator Dependence

Massarick F, Kaback MM. 1981. Genetic disease control: A social psychological approach. Beverly Hills, CA: Sage , 168 pp. (Sage library of social research; v. 116)

Annotation: This book addresses some issues relating to genetics and medicine in the perspectives of the social and behavioral sciences. It provides viewpoints, especially bearing on impact of new genetic disease control methods and research data, as prototype, reporting psychological research conducted in connection with the California Tay-Sachs Disease Prevention Program. In this context, the authors consider how a specified population perceives genetic diseas and its consequences, levels of genetics knowledge, and attitudes toward the diagnosis, treatment, cure, and prevention of genetic illness. Additionally, the authors examine what these people think ought to be done in terms of genetic testing and screening, and what they are prepared to do, by way of specific intervention such as an abortion, in instances when a genetic disorder is diagnosed in utero. Finally, the authors consider the hypothesis of stigma by studying the attitudes and feelings of couples in which one member has been identified as a carrier of Tay-Sachs disease. The book includes two appendices: (1) questionnaire items and (2) follow-up interview items. References, an author index, and a subject index are included. [Funded by the Maternal and Child Health Bureau]

Contact: Sage Publications, 2455 Teller Road, Thousand Oaks, CA 91320-2218, Telephone: (805) 499-9774 Secondary Telephone: (800)818-7243 Fax: (805) 499-0871 E-mail: [email protected] Web Site: http://www.sagepub.com Available in libraries. Document Number: ISBN 0-8039-1055-X.

Keywords: Abortion, Behavior sciences, Diagnosis, Genetic disorders, Genetic screening, Prevention, Research, Social sciences, Tay Sachs disease, Treatment
   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.