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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 21 through 38 (38 total).

Munn EK, Widener MA, Fortunato GM, Chernoff R. 1999. Kids program manual for child life specialists. Baltimore, MD: Johns Hopkins University, Department of Maternal and Child Health, 55 pp., 1 brochure.

Annotation: This manual describes procedures for implementing the child component of a 15-month program designed to enhance the quality of life for families with school-aged children with selected chronic physical health conditions. The program, a research project, was operational from March 1997 to June 1999. The child component is referred to as Kids Involved in Discovery and Sharing (KIDS). The child component was developed to enhance children's self-esteem, increase participating childrens' perception of social support, and to problem solve with the children for ways of managing family and social issues that they identified as challenging. The manual is divided into three sections that cover the following: (1) the programs goals and objectives; (2) general procedures for carrying out a visit and for maintaining contact with the children and their mothers between visits; and (3) descriptions of activities, procedures for their implementation, and examples of specific interactions. References are provided. Appendices include a Child Life Specialist (CLS) job description, copies of documentation forms, guidelines for interactions with children that enhance self-esteem, and guidelines for establishing the relationships between the CLS and the parents. A sample K.I.D.S. brochure is attached. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

Keywords: Asthma, Child life workers, Children with special health care needs, Cystic fibrosis, Diabetes mellitus, Families, Family support services, Intervention, MCH research, Mental health, Sickle cell disease

Lessing S, Vichinsky E, eds. 1998. A parents' handbook for sickle cell disease, Part I: Birth to six years of age. (Rev. ed.). Oakland, CA: California Department of Health Services, Genetic Disease Branch, 104 pp.

Annotation: This handbook was developed for parents of children with sickle disease. The purpose is to provide detailed information that parents could use as reference and share with primary care providers and emergency room staff unfamiliar with the treatment of sickle cell disease. The handbook covers these topics: basic questions; routine medical care; health care at home; fever, pain, and when to get help; medical problems in early childhood; the hospital; taking charge; planning for a family; and research. There are a variety of appendices ranging from a list of danger signs to a glossary. The handbook is written at a 9th grade reading level. [Funded by the Maternal and Child Health Bureau]

Keywords: Chronic illnesses and disabilities, Educational materials, Family support services, Parents, Sickle cell disease

Gabor V, Jacquart K, Salit R, Hill I. 1996. Practice guidelines and standards of care for children with special health care needs: Report and compendium. Washington, DC: Health Systems Research, 17 pp.

Annotation: This report gives information on a technical assistance project for the North Carolina Department of Environment, Health, and Natural Resources Division of Maternal and Child Health. The project examined practice guidelines to promote health care quality for children with special health needs as their care was expected to migrate to a Medicaid managed care system. The report includes a summary of guidelines for children with the following conditions: asthma, attention deficit hyperactivity disorder, cerebral palsy, congenital deafness, cystic fibrosis, diabetes, sickle cell disease, and spina bifida. The report also identifies the sources of these guidelines. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 3520 Green Court, Suite 300, Ann Arbor, MI 48105, Telephone: (734) 302-4600 Secondary Telephone: (800) 879-6505 Fax: (734) 302-4991 Web Site: http://www.altarum.org/contact Available from the website.

Keywords: Asthma, Attention deficit disorder, Cerebral palsy, Children with special health care needs, Cystic fibrosis, Deafness, Diabetes mellitus, Guidelines, Hyperactivity, North Carolina, Quality assurance, Sickle cell disease, Spina bifida, Standards, State health care reform, Technical assistance

Brown RT, Coupey SM, eds. 1994. Chronic and disabling disorders. Philadelphia, PA: Hanley and Belfus, 169 pp. (Adolescent medicine: State of the art reviews; v. 5, no. 2)

Annotation: This edition addresses both general issues of importance in health care for adolescents with special health needs and specific chronic conditions. The first set of articles focuses on the epidemiology of chronic illness in adolescence and developmental, educational, and health care delivery issues. The second set discusses specific chronic conditions that are prevalent in the adolescent population (i.e., deafness, cancer, traumatic brain injury, and sickle cell disease) or that have had recent advances in management (i.e., cystic fibrosis, organ transplants, and spinal cord injuries).

Contact: Hanley and Belfus, 210 South 13th Street, Philadelphia, PA 19107, Telephone: (215) 546-4995 Contact Phone: (800) 962-1892 Available in libraries.

Keywords: Access to health care, Adolescent development, Adolescents with special health care needs, Cancer, Chronic illnesses and disabilities, Cystic fibrosis, Education, Epidemiology, Head injuries, Hearing disorders, Organ transplantation, Sickle cell disease, Spinal cord injuries, Transitions

Stern KS, Davis JG, eds. 1994. Newborn screening for sickle cell disease: Issues and implications. New York, NY: Council of Regional Networks for Genetic Services, 225 pp.

Annotation: These proceedings report on a conference held in Washington, DC in June, 1993. They review the progress made in providing newborn screening programs for sickle cell and other hemoglobinopathies, the persistence of existing problems, and new issues that challenge service providers. Specific topics include model sickle cell programs, clinical management and psycho-social issues, ethical-legal issues, and public health issues. The conference and these proceedings were funded by the Maternal and Child Health Bureau, U.S. Department of Health and Human Services.

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHH018.

Keywords: Conference proceedings, Neonatal screening, Sickle cell disease

Earles A, Lessing S, Vichinsky E, eds. 1994. A parents' handbook for sickle cell disease, Part II: Six to eighteen years of age. (Rev. ed.). Oakland, CA: California Department of Health Services, Genetic Disease Branch, 72 pp.

Annotation: This handbook is the second part of a two-part series to assist parents of children with sickle cell disease. Part I was written for parents of children from birth to six years of age. Part II covers the developmental years from school-age through adolescence and is intended to support parents as partners in the care of their children and to help parents of adolescents begin to shift some of the responsibility of care to the adolescent. Topics include routine health care and home care, pain management, health concerns in the primary and secondary school years, sex and reproduction, and the adult years. The appendices contain such items as a comprehensive sickle cell disease care plan, a temperature conversion chart, diagrams of inheritance, and a glossary. [Funded by the Maternal and Child Health Bureau]

Keywords: Adolescents, Chronic illnesses and disabilities, Educational materials, Family support services, Parents, School age children, Sickle cell disease

Shapiro BS, Schechter NL, Ohene-Frempong K, eds. 1994. Sickle cell disease related pain: Assessment and management—Conference proceedings. Mount Desert, ME: New England Regional Genetics Group, 53 pp.

Annotation: These proceedings discuss the assessment of pain, pharmacological management of pain, non-pharmacological management of pain, consumers' perspective on pain management, and discussions on these topics. [Funded by the Maternal and Child Health Bureau]

Contact: NERGG, Inc., P.O. Box 920288, Needham, MA 02492, Telephone: (781) 444-0126 Fax: (781) 444-0127 E-mail: [email protected] Web Site: http://www.nergg.org Available in libraries.

Keywords: Adverse effects, Analgesic drugs, Conference proceedings, Disease management, Pain, Sickle cell disease, Sickle cell trait

Texas Department of Health, Texas Genetics Network. 1992. Directory of genetic service providers. Austin, TX: Texas Department of Health, 89 pp.

Annotation: This directory lists genetic service providers in Texas. It is organized by category of service including medical genetics programs, biochemical genetics laboratories, cytogenetics laboratories, DNA laboratories, and sickle cell anemia programs. Each entry includes the program name, address, phone, program director, contact person, and a list of the clinical services provided. Many of the entries include information about cost reimbursement. [Funded by the Maternal and Child Health Bureau]

Contact: Texas Department of State Health Services, Children with Special Health Care Needs Services Program, MC 1938, PO Box 149347, Austin, TX 78714, Telephone: (512) 458-7355 Secondary Telephone: (800) 252-8023 Fax: (512) 458-7417 Web Site: http://www.dshs.state.tx.us/cshcn/default.shtm Available in libraries.

Keywords: DNA, Directories, Family support services, Genetic counseling, Genetic screening, Prenatal diagnosis, Sickle cell disease, Special health care needs

Eckman JR, Platt AF Jr. 1991. Problem oriented management of sickle syndromes. Atlanta, GA: Grady Memorial Hospital, 143 pp.

Annotation: This monograph provides basic guidelines for common presenting problems in patients with sickle syndromes. Background information is provided on manifestations of sickle syndromes, pathophysiology and principles of treatment, and health maintenance. Additional chapters cover specific problems from abdominal pain to vaginitis, and provides information on clinical findings, differential diagnosis, treatment, prevention, patient and parent education, and references. [Funded by the Maternal and Child Health Bureau]

Keywords: Child health, Sickle cell disease

Henderson AM, Crocker AC, eds. 1991. Sickle cell anemia and comprehensive care: A new horizon. Washington, DC: National Center for Education in Maternal and Child Health, 60 pp.

Annotation: This booklet presents the proceedings of the New England Regional Conference on Sickle Cell Anemia held September 18, 1989. The conference brought together health care professionals from sickle cell centers, school personnel, primary care providers, early childhood educators, school and public health nurses, genetic service providers, individuals with sickle cell anemia and their families, and members of local sickle cell associations to consider current issues associated with providing comprehensive services for individuals at risk for or affected by sickle cell anemia. The proceedings include a summary of the formal presentations and the workshop recommendations. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website. Document Number: HRSA Info. Ctr. MCHD065.

Keywords: Sickle cell disease

McCabe E. 1991. Sickle Cell Anemia: DNA for Newborn Screening Followup [Final report]. Los Angeles, CA: Baylor College of Medicine, 28 pp.

Annotation: The objective of this study was to demonstrate the applicability of DNA techniques to newborn screening for sickle cell disease. The current practice in Texas was universal neonatal screening; small samples of blood were dried on filter paper and analyzed by protein electrophoresis. The primary aim of this project was to confirm or exclude the diagnosis of sickle cell disease by DNA genotyping directly from the original newborn screening filter paper. The purported advantages of this approach included earlier, more definitive notification of families with affected neonates. [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 PB92-135813.

Keywords: Laboratories, Neonatal screening, Newborns, Sickle cell disease, Tests

Skeels MR, Buist NRM, Tuerck JM, eds. 1988. Proceedings: 6th National Neonatal Screening Symposium. McLean, VA: Association of State and Territorial Public Health Laboratory Directors, 198 pp.

Annotation: These are the proceedings of the 6th National Neonatal Screening Symposium, held May 22-25, 1988 in Portland, Oregon. The symposium brings together practitioners, laboratory specialists, program managers, and medical consultants with an interest in this field. Some of the major topics covered in the contributed papers include laboratory considerations, maternal and child health considerations, computerization, hemoglobin screening, and HIV screening. The "National Neonatal Screening Symposium: Program and Abstracts" are available in a separate volume.

Contact: Association of State and Territorial Public Health Laboratory Directors, 1211 Connecticut Avenue, N.W., Suite 608, Washington, DC 20036, Telephone: (202) 822-5227 Contact Phone: (703) 556-9222

Keywords: Conference proceedings, HIV, Hemoglobinopathies, Neonatal screening, Sickle cell disease

Pass K. 1987. Retrospective Study of Hemoglobin Variants in Newborns [Final report]. Albany, NY: New York State Department of Health,

Annotation: It was the purpose of this study to examine a group of infants identified in the Newborn Screening Program with a variant type of hemoglobin. Through correlation of initial test results, repeat hemoglobin analysis, and medical histories of the first year of life, conclusions regarding the effect of these hemoglobin variants on the child's health were made. Analysis of the data then allowed recommendations regarding appropriate followup procedures for these newborns. In no case could a linkage between the hemoglobin variant and any medical events of the first year be established. These results suggested that even though newborn screening may not definitively identify all variant hemoglobins, those types which are grouped in the broad class "variant" result in no significant medical sequelae for those infants. Accordingly, no recommendation for changes in the newborn followup procedure for this group of newborns was deemed necessary. [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 PB88-173661.

Keywords: Infants, Neonatal screening, Newborns, Sickle cell disease

National Center for Education in Maternal and Child Health. 1983. Sickle cell: A selected resource bibliography. Washington, DC: National Center for Education in Maternal and Child Health, 35 pp.

Annotation: This bibliography lists professional education materials, fact sheets, pamphlets, brochures, selected journal articles, and audiovisual materials about sickle cell disease and sickle cell trait. Also listed are comprehensive sickle cell centers, screening and education clinics, and sources of additional information. [Funded by the Maternal and Child Health Bureau]

Keywords: Sickle cell disease

National Center for Education in Maternal and Child Health. 1983. Sickle cell: A selected resource bibliography. Washington, DC: National Center for Education in Maternal and Child Health, 35 pp.

Annotation: This bibliography lists professional education materials, fact sheets, pamphlets, brochures, selected journal articles, and audiovisual materials about sickle cell disease and sickle cell trait. Also listed are comprehensive sickle cell centers, screening and education clinics, and sources of additional information. [Funded by the Maternal and Child Health Bureau]

Keywords: Sickle cell disease

U.S. Congress, Senate, Committee on Labor and Public Welfare, Subcommittee on Health. 1972. National Sickle Cell Anemia Prevention Act: Hearings. Washington, DC: U.S. Government Printing Office, 315 pp. (99th Congress, 1st Session; S. 2676)

Annotation: These hearings were held on November 11-12, 1971, before the Subcommittee on Health of the Committee on Labor and Public Welfare, United States Senate, regarding S.2676 to provide for the prevention of sickle cell anemia.

Contact: U.S. Government Publishing Office, 732 North Capitol Street, N.W., Washington, DC 20401, Telephone: (202) 512-1800 Secondary Telephone: (866) 512-1800 Fax: (202) 512-2104 E-mail: [email protected] Web Site: http://www.gpo.gov Available from the website.

Keywords: Federal legislation, Sickle cell disease

Lin-Fu JS. 1972. Sickle cell anemia: A medical review. (Rev. ed.). Rockville, MD: U.S. Department of Health, Education and Welfare, 26 pp.

Annotation: This publication introduces the problems of sickle cell anemia. The topics discussed are related nomenclature, prevalence, genetic considerations, pathophysiology, pathological findings, clinical manifestations by age group, laboratory findings, screening, diagnosis, prognosis, management, traits, and variants.

Keywords: Diagnosis, Genetic screening, Genetics, Pathology, Sickle cell disease

Fielding JE, Nelson SH, eds. 1972. Comprehensive ambulatory health care for high-risk adolescents: Abstracts of presentations from colloquia for Job Corps health care providers—February 2-4, 1972, Washington, DC and February 15-17, 1972, Denver, Colorado. [Washington, DC: U.S. Department of Labor, Manpower Administration, Job Corps?], 79 pp.

Annotation: This report contains abstracts of presentations at two colloquia for Job Corps health care providers. The topics were health education, mental health, adolescent sexuality and family planning, drugs, sickle cell anemia, dental health, obesity, hepatitis; dermatological problems, sports related or work related trauma, and accidents.

Keywords: Adolescent sexuality, Adolescents, Conferences, Drugs, Family planning, Health education, Hepatitis, Mental health, Obesity, Oral health, Sickle cell disease, Skin diseases, Sports injuries

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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.